The global segment for operationalizing meaningful engagement of people living with diabetes (PLWDs) includes discussions led by individuals with lived experience on how PLWDs may be better included in the Global Diabetes Compact through governance, collaborations and partnerships, country implementation, advocacy and education.
The segment builds on the WHO Informal Consultation on People Living with Diabetes and has been co-designed by PLWD. It will feature PLWDs, together with WHO, Member State, business and community partners from all around the world.
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Hi everyone i’m tiara smith and i’m representing beyond type 1 and beyond type 2 here in the united states it is an honor to be among all of you today i was misdiagnosed with type 2 diabetes in 2017 and didn’t receive my correct diagnosis of type 1 lot of diabetes until 2019 this is an experience i’ve come to learn and share by many others including close friends of mine however my experience has only strengthened my resolve to continue to advocate for people with diabetes and address stigmas and stereotypes many of which of those people with type 2 and type 1 can identify i’m excited for today because at last month’s informal consultation of people living with diabetes i got to see how energized and excited people were to lend our voices to solutions to improving the lives of people with diabetes around the globe at the consultation we all discuss the ways to be of service to the most vulnerable around us and i’m excited to see that continue during today’s panels all of which i know that you’ll enjoy the objective of today’s segment is to relate a message of urgency to the governments in 2021 a substantial proportion of people around the world still cannot access insulin and other basic needs to manage diabetes however through this compact we can reach our goals and now i’ll kick it off to my co-host nopper lavani thank you tiara hello everyone my name is nupol i’m from india and i represent the blue circle diabetes foundation which is a non-profit organization and support group living for people living with diabetes in india i’m also associated with the healthy india alliance the nct alliance and the international libraries federation i’ve been living with type 1 diabetes for the past 26 years and i’m a diabetes educator as well just like tiara i was part of the who’s informal consultation on people living with diabetes and it’s an absolute honor to be here today and to welcome all of you to this wonderful segment for operationalizing meaningful engagement of people living with diabetes today is an important and historic day as we celebrate a collaborative way of going forward and embracing the window of opportunity of the centenary of the discovery of insulin which is as you all know a life-saving drug for people living with diabetes like tiara me and a million others the objective of this segment today um is to begin to alter the global narrative to a more values-based approach and look at commonalities and differences between type 1 diabetes type 2 diabetes and all the other types of diabetes in a mutually supportive and empowering way with this i would now like to call upon dr svetlana axelrod who is the director of the global ncb platform hello colleagues distinguished guests and your excellencies so thank you our co-chairs and tara for opening the second segment of the global diabetes summit i think it was a fantastic first segment when we had the head of states and ministers of health head of u.n agencies and also my double virtual colleagues who focused on a very important and very uh specific issue on the diabetes and of course my highly appreciation to the canada who are co-hosted for this event so as it was said i’m svetlan axelrod i’m the director of the global ncd platform it’s a division and department in the headquarters in geneva and it’s a great opportunity and pleasure for me to organize the second segment of this global diabetes summit which will focus on the global which will focus on the implementation of the and the continuation of the dialogue on the actions that we should do so as it was mentioned before the second segment will be mostly focusing on the moving uh from the dialogue to the actions on the meaningful engagement of people living with diabetes in order to co-create this new global initiative the global diabetes compact this builds on the long-standing priority of the global coordination mechanism which is working with the people living with ncds and double which show work is increasing focus on the leveraging these the inspirations and experience and networks of lift experience to achieve the global goals so let me proceed and to pass the floor to the video of our director general of the double ritual dr tedros who will provide some opening remarks to the second segment of today’s meeting excellencies distinguished guests dear colleagues and friends the discovery of insulin is one of the greatest medical breakthroughs in history and has saved millions of lives yet on the hundreds anniversary of its discovery millions of people who need insulin can’t get it because it’s not affordable or accessible who’s pre-qualification program for insulin aims to dramatically increase the affordability and accessibility of this life-saving medication but that’s not the only hurdle we face half of the adults with debits don’t know their status and most of them live in low and middle-income countries this cannot continue if we wish to achieve our shared global goals the best way to address these vast inequities is by working together to realize the principles of respect dignity and inclusiveness the lived experience of people living with debts is essential for shaping the response to these diseases in communities and countries during the next two hours you will be discussing how you can co-create and become essential partners and implementers of the global diabetes compact i look forward to hearing the outcomes from today’s discussions and working with you as we go forward i thank you i think it was a really very powerful words from our director general and of course we know that when people and communities living and affected by diabetes are engaged in the decision-making and diabetes silver delivery more people living with diabetes gain access to treatment so uh i think that today’s discussion and our several panels will help us to understand better how we can work together different communities wh show other u.n agencies civil society private sector so thank you again for this interesting and fantastic opportunity for us to be involved in this and i hope that we will have a very productive discussion in a couple of hours it will be not very boring for us but i think it will be very very fruitful and thanks again to my colleague benton nicholson for this opportunity to be the part of this discussion so let me go back to our co-chairs and to ask them to continue our second segment thank you over to you thank you director general and thank you dr axelrod now everyone we’re going to be moving to our next discussion about our informal consultation of people living with diabetes we’re going to recap this event from last month’s meeting and we’re going to start with dr guy fans uh saren farad and heather koda excellent thank you so much and good day to all of you who are joining us from across the globe and and appreciate your time and and to join us and and discuss and help us shape this agenda forward and on behalf of the who’s global coordination mechanism on ncds it is my sincere pleasure to address you on this segment of the global diabetes summit but let me be clear from the start the global diabetes summit and in particular the global segment for operationalizing meaningful engagement would not have been possible without the expert insights and contributions of people living with diabetes as an example in early march of this year our team together with the ncd department co-organized an informal consultation with people living with diabetes the aim of this consultation was to explore exactly how meaningful engagement of lived experience could become a guiding principle for the code development of the long-term vision of the who’s global diabetes compact the consultation was unique for many reasons in particular because it used a participatory approach led and co-chaired across its three days by those with lived experience of diabetes notable were innovative platforms used before and during the consultation to maximize to maximize the participants ability to convey their lived experience across the many representations convened and to do so effectively in this in our new virtual format in our new virtual world [Music] across those three days we saw sustained engagement of 140 participants from 57 countries the consultation unpackaged the stark reality regarding the large gaps in access to diabetes treatment and care that continue to exist worldwide but it also yielded rich insights on the importance of transitioning from mere storytelling to real and meaningful partnerships and action and it provided valuable guidance on how to reframe and revitalize responsive narrative around diabetes let me give you four key themes that were discussed in this consultation first participants were strong in supporting the message that patience is not a virtue when people are dying 100 years since the discovery of insulin access to diabetes treatment and care should not be a privilege second people living with diabetes with diseases sorry including diabetes are more than just storytellers the global diabetes compact will build an engagement framework that supports a transition from patient stories to incorporating people living with diabetes in partnerships advocacy implementation governance and beyond people living with diabetes must be valued as experts the value of lived experience must be better defined formally acknowledged and implemented through sustained and formal frameworks in order for the expertise of lived experience to impact and guide high-level decision-making processes third for engagement to truly be meaningful we need representation diversity and intersectionality as part of any formal framework to include people living with diseases in decision making processes diversity must be acknowledged and guaranteed particularly regarding geographical distribution ethnicity and culture gender identity sexual orientation and comorbidities with other health diseases last it is clearly time to reframe the narrative around diabetes to acknowledge the similarities and differences between type 1 and type 2 and avoid negative measure messaging around type 2 for example this is crucial to reframing the global rhetoric and advocacy towards positive messages that combat misinformation stigma and shame the insights and themes arising from the informal consultation have been instrumental in shaping the format and content of today’s global segment but let’s hear this firsthand i would like to now pass the mic to the two co-chairs two of the co-chairs from that consultation to share their insights serene and heather a pleasure to pass the mic to you thank you so much guy and what a great honor to be here among so many amazing people creating meaningful impact um if i may reflect back on the co-chairing experience i must say that i am beyond honored to have taken part of the consultations and i cannot begin to explain how powerful they were and how beautiful it was to see so many people around the world come together voice their concerns collaborate around creating solutions a lot of input was shared at the consultations but perhaps some main takeaways were as follows people living with all shapes and colors of diabetes along with caregivers want to come together and collaborate and create a meaningful impact and change many major concepts around diabetes care and what people living with diabetes require for a healthy life people living with diabetes around the world need access to primary health care but they also need access to education and to psychosocial support access to insulin needs to come along with the global price tag so no diabetic is left to raise ration his or her needs and unable to afford his or her insulin and the price of lack of access lack of education and lack of affordability is unfriendship unfortunately loss of human life we chose to honor all the ones that have been lost and we will come together and create a joint solution that will change the lives of generations to come so no life is lost because of love and on the final note when we choose to look at the covered 19 pandemic a lot of voices at the consultation wanted to see it as an example so how much can be done in a year once communities come together to prevent the pandemic so creating solutions can be done once we take the needs of millions around the world with the same urgency as we did with the government um by stating that i would like to give the floor to my co-chair um heather and thank you so much for allowing me to space to be a part of this very meaningful heather a pleasure for you to take the mic you may be having connection issues yes [Music] there we go maybe that’s a bit better we weren’t we weren’t receiving your audio very well heather you may be re rejoining we’ll wait a few seconds for you to rejoin hopefully that’s possible if not we will continue with um with the schedule as soon as you can rejoin heather happy to give you the floor so um great insight so far and hopefully we can have heather come back but the global diabetes compact really is celebrating a new vision for collaborative action and co-creation of solutions essential to this is revitalizing inclusive and positive global narrative as we’ve just heard that eradicates stigma and supports the prevention management and care of people living with diabetes but this is also instrumental in building wgo’s broader work around meaningful engagement of people living with ncds and in line with that it is my extreme pleasure to share with you a report launched just today from the who informal consultation of people living with ncds which was held in december of 2020 entitled nothing for us without us on the slide you’ll see the url but hopefully you will also find that easily on the youtube um on the youtube description i i would like to pick up a few messages from that report which i hope you have time to read through and and and unpackage extremely rich in insights and perspective but i’d like to pick up a few lessons learned which are very complementary to the discussion we are having with the community of people living with diabetes and that is first of all meaningful engagement will activate agents of change to support more inclusive ncd principles policies programs and services that are then adaptable to national subnational and community contexts second people living with ncds are experts it’s time to walk the top by including people living with densities along the full life cycle of intervention design development implementation and governance third there is a clear call from the community to develop a framework that can guide ethical and meaningful engagement of people living with ncd and that can support who and its member states move away from tokenism into full participation also there’s a need and a call for more comprehensive landscape analysis and further research to generate additional data on opportunities challenges best practices and gaps that could be used as evidence to guide next steps to operationalize the co-creation of those effective inclusive and equitable responses to ncd’s mental health conditions and the risk factors and determinants and last we’ve heard this and we repeat it is very important intersectional differences such as comorbidities within and beyond ncd’s culture race and gender that can lead to the multi-layered lived experience were highlighted as an important strength of the value of engaging lived experience in designing those inclusive ncd policies and ensuring that they cater to that diversity and leave no one behind ultimately by leveraging its role in global public health who is ready to walk the talk with you and will support member states in doing the same this is an opportune moment both within the launch of the global diabetes compact and in our collective efforts to build back better to ensure people living with entities are central to the response events like today and the last and that of last month are crucial to mapping this path forward inviting other individuals with lived experience to join and co-create the solutions going forward including what we’ve mentioned on the who framework for meaningful engagement and the very important flagship global diabetes compact so i may come back to see if heather is joined us again um is able to join and present her perspectives heather i we will invite you if you can join later to come into another session heather but for now i’ll give the floor back to um to our co-chairs thank you so much thank you so much dr phones anserine and heather we look forward to hearing from you when you’re back that was a wonderful recap of the time spent together at the informal consultation on people living with diabetes that spanned over three days last month and it brought together over a hundred diabetes advocates from across the globe let’s move on now to the engagement opportunities which are divided into four panel discussions governance collaboration and partnerships country implementation and advocacy and education we will introduce each panel one by one the first panel that’s um coming up is the panel on governance led by david chipanta from unaids over to you david thank you very much thank you very much who director general taran steve atlan guy serene uh for your excellent remarks that really sets um up very nicely uh our panel which is about operationalizing the meaningful engagement of people living with diabetes in january 2021 this year a family friend asked me to carry for him his insulin from geneva to zambia this reminded me of friends who smuggled hiv drugs from europe and the us to zambia for many of us living with with hiv during the early days of the hiv epidemic 100 years since insulin was discovered i cannot imagine as the previous speakers have said that insulin and associated devices are not available at least not at a universally affordable price in the aids movement and this is what i know from living with hiv for the past 30 years we have actively engaged the difference governance mechanisms to bring down the prices of arvs and ensure that hiv treatment is available to everyone now and you all agree with me hiv treatment is available to everyone although pockets of inequality exists and some people are left out diabetes is different from hiv but similar in many ways in this session we will unpack the how and why people living with it with diabetes should be meaningfully engaged in the governance structures of the global diabetes compact starting from who from the global to the region to the countries and to the local it is my great honor to introduce our esteemed panelists mr alex silverstein who works from who works with the national health service in the uk welcome welcome alex mr bruno hellman from the international diabetes federation in brazil welcome mr silvana lucian from the from parho pan-american health organization welcome last but not the least mr lyda daniels chair of the national indigenous diabetes association in canada welcome my first question to all of you and i’ll ask you to be really brief maybe speak for about two minutes uh two three minutes uh my first question is how can people living with diabetes be included in the governance of the global diabetes compact at local national global levels i’ll start with with you alexa please uh feel free to draw from your professional base and and personal experience of uh of uh living and working uh in the field of diabetes alex please uh go ahead thank you very much david um so for me i work for the national health service in the uk and we work as part of a project transforming diabetes care for 300 000 people across north west london and we first put into legislation the need to engage people living with ncds and living with diabetes in decisions about their care um but that meant that we still had to work out how to do that and one of the things i created was this group called the partners in diabetes which shortens to pig so pid is also for those who know project management is what you create like a business case before you do any piece of work and we did that on purpose because we we wanted everyone who worked for the nhs to to understand that you speak to people uh with diabetes before you start a project to see where you can co-create and you can co co-engage together and that’s really worked well and enshrined in our group who self-organize themselves and they have monthly meetings via ms teams or zoom and they invite us along as doctors or clinicians and we come up with plans together thank you very much um alex we’ll go to mr bruno hellman thank you very much david uh so i was invited to to share some of the best practices of how operas operationalizing the the engagement of people living with but unfortunately i can’t share because there are not many to be shared so what i want to focus and really briefly is that we are here to celebrate the lives that insulin made possible but we can’t forget those who were lucky and privileged enough to be here today uh last year debla cho gave a really important step toward promoting meaningful engagement and meaningful involvement of people living with we must acknowledge the hard work that the gcm and the ncd department put into it and then that was follow later this month with the informal consultation of people living with diabetes the blade show have set the example and gave a really important step towards meaningful engagement of people living with diabetes but now it’s time to member states to put words into practice we are impatient of waiting and as alex said we must create mechanisms to guarantee from scratch from conceptualizing to monitoring and evaluating mechanisms sustainable mechanisms to mean fluid involve and engage people living with diabetes and other entities we can’t wait another 100 years to have insulin for all and comprehensive care if not now when thank you very much okay thank you very much thank you very much bruno uh we’ll go to siovanna thank you thank you david and i just want to start off by thanking bruno and tiara and newport and serene and all of those who are with us today who are living with diabetes and lending their insights and perspectives and also to congratulate my colleagues at who who are leading by example by including so many people living with diabetes in the global diabetes compact and i think we can all agree that this is a really important um moment for the simple fact that people living with diabetes are the true experts on what is needed to manage their disease and prevent complications and how to improve the quality of care we know that this is a disease where there’s a tremendous amount of self-care and family and community support that’s needed we also know that the way that the health services are organized and delivered and the health policies that are in place in communities that promote health all have an impact on patient outcomes and it’s only through the lived experiences of those that are living with diabetes and experiencing those challenges that we can better appreciate and fully understand on their health needs and the challenges and how to overcome them so who better to advise and be part of a governance of a diabetes initiative than those living with diabetes and the whole purpose of governance of a diabetes initiative is to ensure that people’s needs are met and that the initiative is sustainable and accountability is held throughout the process so it begs the question how do we ensure that and i would say that first as public health leaders we must fully acknowledge and recognize and respect and value that inclusion and engagement with people living with diabetes and their caregivers that they are a relevant part of governance and not only as informants but as those true change agents and change makers as we’ve seen already through the informal consultation last month and really harnessing that energy to overcome those big challenges that we know exist to improve care secondly we need to formalize that inclusion at the decision-making table right from the start with equal representation on the same level as input of professional experts and health authorities here at the pan-american health organization we work really closely with governments throughout latin america and the caribbean we co-design programs with our health authorities and we have started to incorporate and consider the consultation and involve the community and people living with with people living with diabetes but i would say we’re still at the early phases of having that as a principle and a standard operating procedure and i know that having this global diabetes compact and the consultations that who globally is leading will help us change the way we’re working um and ensuring that consultation with community doesn’t stop just in that program design phase but that it’s really meaningful throughout the process with evaluation and monitoring um the other important thing i want to emphasize is is having that stakeholder mapping that guy just talked about to identify that range and that diversity of people living with diabetes so that we can ensure the gender balance youth participation um diversity and ethnicity and lastly i also want to point out the need of providing the guidance and training and support for people living with diabetes for their active participation we know that there are certain people who are more activist oriented and who are much more eager to participate and extroverted in that sense but it’s equally important to provide the training and support for those who may not be natural activists but who have a very important role and passion to um to convey and be part of that governance process for diabetes initiative back to you david thank you thank you so much um siovanna i will go to the last but not the least uh liar daniels mr lio daniels please yeah you have the flow good day everyone it’s a big honor for me to be a part of this uh exciting opportunity um i’m the the chair for the national indigenous diabetes association i come to you today from treaty for territory the the home of the uh the the creed the soto the dakota lakota lakota and the assiniboine people of uh of the mid part of canada i represent the national indigenous diabetes association made up of first nations metis and inuit people from all across canada our board members are are part of a non-profit organization one of the things that uh that sort of strikes me um late in the game is being asked you know a few weeks ago to be a part of this uh being a person that has lived with type 2 diabetes i had a simple plan of eating less eating healthy and being active losing 60 pounds um gaining my my health back getting off insulin because i’m able to um fight it in in a way that’s that’s really um uh important for anybody that uh is pre-diabetic start planning helping to to to make them plan um um to to not be a diabetic and that’s the whole goal of nida in the sense that uh we look at all aspects of uh of of helping um our community members but what strikes me um about this compact is that we need to sort of take take it by the horns and realize especially with the indigenous people in not only um north america but latin america and overall um the americas with specifically the indigenous community we’re always left out and we’re the most suffering of of all um in all of canada and specifically within our first nations communities we’re seen as third world condition living members and uh it shouldn’t be like that we need to work together to look at um all the indigenous communities not only in uh in canada i always like to brag about the fact that we’ve been here for thousands and thousands of years we never had this problem of diabetes it’s mainly because of our lifestyle our nomadic lifestyle that we that we live for for that for that many generations where it came was through contact and uh and so we need to help our young people and help our people in the communities um look at this disease understand the disease make education available for that and um and i think nida is uh is the group to to be part of the governance to ensure that uh this uh group of people who are always the last to be looked at um is able to come to the forefront and uh and be addressed and uh and also um that we help that we need to help um those people that are are horribly dying from all the effects of type 2 diabetes but more importantly help the ones that are pre-diabetic and uh and that that we have a stake in making sure that that happens globally and uh we just want to be we just want to have a foot in the door and if we can do that collectively we can learn together and uh and and and help together which is our goal at night thanks thank you so much a liar um for me this is uh uh deja vu is really leaving the hiv epidemic um uh uh all over it’s about exclusion uh indigenous people have been excluded in many things and we see the results of that in hiv they are a big populations that are affected it’s about making the governance structures uh work for for all of us and i i think it’s a little bit different here because that who is taking the forefront is in the leadership and now i think i hear you bruno alex savannah that now what can countries uh do forward and and for me i’m really extremely uh touched that you are saying we can’t wait 100 years again for for for people to stop uh dying when we have insulin and the relevant um uh assistive devices are in place uh i’ll come back uh to each one of you now for any last minute intervention in less than one in less than one one minute we will start with you alex uh what is the key thing you would like people listening to this session to take away alex um i i think the key thing for me would be to start small and focus on what you feel people living with diabetes can make a meaningful impact on and and the way to find that out is just simply by asking them and if you bring them into the conversation and get them as close as to where the decisions are made the better the outcomes you will find for not just your health systems but for the very people in your local communities so let’s help create more partners in diabetes because you know we don’t have enough clinicians in the world to to manage diabetes people need to step up if we’re if we’re going to really uh fight the rise of ncds we need to be working as partners we need to be fighting this as partners and move from you know you said we did to we said and we did thank you thank you thank you alex um i see van sure thanks david so you know just talking and reflecting a little bit about the experience we had here at the pan american health organization and two initiatives where we made an effort to um involve people living with diabetes one was in developing a patient-led education program called the passport for healthy living and then the other was an advocacy campaign where we um created a platform for people to to have their asks to governments on on what would be needed to improve quality of care for for diabetes um and some of the barriers that we encountered through this experience was really not knowing how to find those right advocates and champions and having that right level of representation um you know some countries do have organized civil society and ngo representation and bruno is here as as a testament for that in one of the countries in our region um but other countries don’t have that level of organization so i think one of the things to address is how can we create those forums those networks and and create that um civil society opportunity um and and communication and relationship and then the other thing i think would be around communication because we felt that there was some moments where there’s distrust right because there isn’t that previous experience of um of meaningful contribution and and engagement and co-creating initiatives together so it does take time to build the trust and confidence and have the right language and a common inclusive communication it’s trial and error and um and we keep you know working at it to get it right but um but i think this global diabetes compact will really create the platform for rolling out in our region to have more inclusive consistent participation for people living with diabetes over thank thank you very much and silvana bruno please go ahead thank you very much david so i’d like to to make two points the first one it’s impressive how the global health community managed to to get together and to cooperate to fight cov19 and that took just a couple of months why the global health community has been taking so long to get together and fight the diabetes pandemic that have been affecting us for many years last but for but for not least i’d like to uh to reinforce again that me and many others who are here today and who are capable and to access insulin and comprehensive care are lucky and privileged and that we must assure that every person that lives with diabetes receives the right and the caring support to live with this chronic condition that unfortunately it’s still really deadly it can be control it can be we can live a fully and happy life with diabetes but for that we need to the commitment we need that the the member states to assure that they will join the conversation and work side to side with us because the community of people living with diabetes are red are more than ready to to join the conversation and more they’re ready to to put our hands on on on public policies to assure uh meaningful engagement of people living with to assure that the global targets on ncds will match but we need the room and we knew the space thank you thank you thank you so much bruno uh mr la daniels uh at least but not the least you have uh last but not the least you have the flow please well i’d like to make uh just a couple of comments one um we need to better the community education whenever we’re able to you know some of the things that i realize um looking at first nations and some of the isolated communities in in canada is connectivity to the internet and uh all of all of that that prohibits the opportunity for us to to get information down to the community we have some great community health workers right across the country but they need more tools to be able to do their job properly and one of them is we always we always work at developing a particular diabetes program in one of the halls in one of our communities but some people can’t even come to the to the community hall we need to make it so that people are able to to to sit in their own homes and be able to uh listen to people and and give uh the people that are in our communities that are right now restricted to their homes right now because of colbit uh the ability to to to hear uh role models and hear people who have done well for themselves um uh in fighting this horrible disease now saying that um when it comes to this uh this this diabetes compact that we’re looking at developing it’s important that we have proper representation um um including people that live with diabetes like myself um and i’m not saying that might be me from from from our organization alabama i work work so closely with awesome colleagues with the the national indigenous diabetes association but my co-chair robin looks after the the preventative side and and and the traditional medicine side of of what we need to do on the on the diabetes side and and looking at that as an opportunity to to to to heal our people and uh and we’ve used plants and medicines uh as medicine for for for generations and thousands and thousands of years we need to get back to some of those basics to ensure that uh we look at every means to help um all of our people um across turtle island or north america thank you thank you thank you very much daniella excellent um really uh excited you know excellent um uh information strong energy and and i think um as alex said if we want to work with people with people with diabetes if we want the best intervention let’s ask them we we have heard what people are saying let’s ask them but also let’s listen to them with that um i thank you all the panelists and over to you nippo and tara thank you so much david and our panelists um that was such a great discussion um i am very happy to hear more about like diversity and inclusivity especially amongst um first nation individuals uh with diabetes so we’re gonna roll into our next panel uh and this is going to be about collaboration partnerships and addressing barriers uh to access and the moderator for this discussion will be michelle farmer from ncd child here in the us michelle over to you great thank you so much tiara uh and thanks also to newport um your co-host for this uh this wonderful summit um i have the pleasure of introducing the panel uh of uh for collaborations and partnerships this is a panel of highly skilled well-informed people and i’ll give brief introductions for each one we’ll start with emma doble who has been working with the british medical journal since 2018 as their patient editor for education we have bridget mcnulty who is the co-founder of sweet life diabetes community and the co-founder for south african diabetes advocacy and diabetes alliance she’s been living with type 1 diabetes for 14 years and is a member of the international diabetes federation blue circle voices we have dr slim slamma who is a regional technical advisor for the world health organization in the eastern mediterranean region and dr slama provides technical assistance for non-communicable diseases and management in the 22 member states of the eastern mediterranean region and this region uh affords him the opportunity also to work with several areas that are facing humanitarian crises to strengthen the provision of health care for people living with chronic diseases including diabetes and finally we have dr catherine duggan who is the chief executive officer for international pharmaceutical federation and from her uh position she is responsible for visionary leadership support development and advocacy across 144 member organizations and over 4 million members of the fip so welcome to all of the members of my panel i’m going to start with one question that i will ask each of uh my panelists to uh respond to and that is how can collaborations and partnerships help people living with diabetes to meaningfully engage with the compact with the global diabetes compact so i’ll start with emma thanks michelle i think this is a really important question and and for me i really think back to what does partnership really mean and to me it really means trust it means openness and it means transparency and in order to have you know a good partnership we need all three of those traits in there and for me that is how we address that some of the barriers is in using those three traits so the first thing i think i would really ask for is that all of the the people with living with diabetes have a seat at the table in all of our organizations and all of the work that we do um whether that’s with the compact but also within our own local communities i hope that all of the the countries and organizations involved really open their doors to people living with diabetes and ask them to take a seat at the table and to really involve them in all aspects of the work in implementing this compact i think the second thing is to really know and understand what the barriers are for people living with diabetes to really meaningfully engage with this work and i think in order to do that the most simple way really is to ask the people living with diabetes what the barriers are for them to get involved and to really implement this in their own communities i think the third thing would be to really provide support and to ensure that partnership with people living with diabetes is prioritized by all of those involved in the compact and that can be from everything and supporting people living with diabetes to go into their communities to work with their own communities and also to provide resources tools and and also the financial support for um people living with diabetes to do so thank you great thank you so much emma bridget over to you thanks michelle for me the most important part of this question is the meaningful engagement part so as people living with diabetes we know that we’re often called on to share our stories of what it’s like to have diabetes and how it affects our experiences but we’re all also professionals in our own right so diabetes isn’t our only identifier it’s just one part of us we could be digital strategists or doctors or accountants or lawyers and i think if we can meaningfully engage both as people with diabetes and people who are professionals that could go a long way and then the other thing i really see an opportunity for here is breaking down the silos of good work that we’ve all been doing so in my work with the south african diabetes alliance we brought together all the diabetes organizations associations and companies in south africa to sit around the table with the national department of health and share what work we’re doing and what we discovered is that everyone has great intentions and everyone’s doing great jobs but we’re doing them in silos and if we can all come together as a global community for diabetes and share the work that we’re doing we can break down those silos as emma said we can we can work together with transparency and we can start building a future for diabetes together but the missing ingredient for that is obviously funding because otherwise we all have great ideas but they stay as ideas and if we can move beyond that with funding i think we can have a really powerful impact great thank you so much bridget a lot of a lot of great ideas that you’ve shared with us uh next we’ll go over to slim uh slim what are your thoughts on this question about partnerships as a vehicle for meaningful engagement for people living with diabetes thank you michelle and i’m very happy to be among you uh tonight uh just wanted to grant also all the colleagues from this part of the world that on the second day of ramadan ramadan kareem to all of you and i’m really delighted including for people living with diabetes that are fasting in this part of the world um i think the the partnership aspect from a director point of view have already a bit highlighted by a guy in the previous some introductory remarks and the last panel i think uh i really invite you again to uh get access to that um uh report of the informal consultation that for me i think we have set some of the element of the agreement around meaningful engagement and i come from a region i have been here i mean uh more than seven years and a half now in this uh region where half of the countries have in conflict uh political instability so meaningful engagement is beyond i think uh patient voices i think it’s really about human rights and accountability and claiming the rights and sometimes very difficult in an environment that politically or even from a cultural perspective do not ask people about expressing their need and voicing those needs so i think uh we have an unique opportunity through the compact and order platform for programmatic areas on ncd to create i think uh a space and i think some of the ingredients have already been listed by previous uh speakers in the first and this panel one is rory to relient the power towards argento change and this actually starts and i was very pleased to see in all um the intervention recently attended the narrative from patient from very care oriented to lived experiences what a fabulous wording i think to start with i think changing the narrative start by having a concentrate on how we phrase things and how we frame them i think lived experiences is for me a very nice way to start is to change this bringing also the consensus on how we discuss the issue the second aspect is diversity and inclusiveness and as i mentioned um we are constantly in the emerald region uh one of the region with uh most of the falsely displaced population refugee how you include all those marginalized population and we have example through um for instance the mcd alliance chapter in the region have had a original consultation that was really even looking at uh inclusiveness uh even reaching out to like refugee and syrian refugees in different i mean countries in the region and trying to keep a pers on what is happening what are their needs how do they i think uh voice their needs and how can we support them the second aspect i think that is really critical and some of the colleagues have already mentioned it is creating uh an engagement framework which is really critical for w2o in particular because all type of informal or formal consultation with who have to be somehow formalized i think creating that engagement framework as a guy and the colleague from the global coordination mechanisms has mentioned i think is is is the key uh element and for that actually uh we need so to create like we have done recently and i really like the informal consultation because uh to give power we need also to create a protective environment where voices can be shared and experiences can be shared in a protective environment and specifically for people that have not been used to do that whether because of the political context or because of the health literacy or an ability to express their voices i think we need to build that capacity sound like some colleagues so created the space and building capacity for me would be the other one the other element and the last point is engaging for a purpose in other words um there is a need really to have specific ask about what we want to change and how are we going to do about it what are the targets and being able to track progress over time we usually do that with our member states because we are a member state driven organization where we are there to serve actually population and people so i think that voice from uh people that are agent of change uh to us specific project and to give you to example now i mean one that is very timely because we’re entering ramadan in the region we are starting to work with some organizations like da and the international diabetes federation on diabetes during ramadan and as i mentioned many of people living with diabetes are fasting how can we provide guidance for safe fasting what are the practices of people around the globe that are in muslim countries and practicing their the past and ramadan how can we help them i think he’s starting by just experiencing uh by um supporting people living with diabetes expressing their needs but also the expenses individually so i think these are some of the ingredients that are foreseeas being important uh in in collaboration and partnership is creating an environment engaging but also having a clear focus in term of interventional program that you would like to uh to work on over to you great thank you so much slim uh catherine what are your perspectives on partnerships for meaningful engagement of people living with diabetes thank you so much michelle i must just say first and foremost it’s such an honor to be part of this panel and to have listened to the previous one as well thank you so much uh to emma bridget and slim for your insights and thank you michelle for your your questions so i think it’s worth us just going back to the partnership thing and i think the whole of the the past year if we were going to use it for any good because of the harms that it’s caused to our um communities and societies i think it would be that we need to work together and that for me as a chief executive of a not-for-profit organization that has a vision that everyone should benefit from access to safe and affordable medicines in pharmacy what a salutary tale tonight has given us because seriously we need to get that we need to get that right not only in vaccines during covid but also look it’s 100 years since insulin has been developed so let’s get that let’s get the access to in insulin a bit better um by the way may i just say um a huge uh ramadan korean to everyone and also slim i’ve just been reflecting on your thoughts and how all of our pharmacists out there based in all our communities could possibly help with the message of how we may uh support people who are in with living with diabetes but maybe having to fast because of different uh beliefs and customs and festivities and that that doesn’t uh preclude ourselves from thinking about just uh muslim societies only but everyone everyone has times where they may need it so i promise you we will work in collaboration to think about how pharmacy can help you with that and actually michelle really all of this is about organizations like my own thinking about how we can support the patients and the public that we’re listening to tonight to achieve that better endeavor so i will keep on feeding in as we go through the discussion here tonight but i promise you we will take some key messages home for fip as a federation thank you so much catherine you know i’d like to ask one follow-up question to just briefly for um for the time the remaining for our our wonderful panel um what would be your strongest recommendation going forward so that we can have stronger partnerships uh supporting the global diabetes compact you know we can’t overlook where we are today not only uh in the standpoint that catherine has brought up that you know in a hundred years ago we’ve uh discovered insulin but we’re still struggling with access to medicines equally around the world but we’re also struggling with uh a global pandemic of covet 19 there are many humanitarian crises uh due to uh strife or due to natural disasters so that we have to develop and strengthen our partnerships in the context of where we are today so i’m going to start with uh emma um what’s your strongest recommendation for where we need to go so we could make sure that the global diabetes compact has a the best impact that it could possibly have i think that from my side that the most important thing is to have people living with diabetes at the seat of a table for every element of what we do in diabetes care and that goes through all our different government organizations anything that we have that is about people living with diabetes there should be a seat at that table for somebody living with diabetes to be involved and actively involved in all elements of the planning delivery and implementation of that thank you so much emma bridget what about you so i love this question because it feels like there’s so much opportunity when we look forward to the next hundred years of where we could end up and even if you look at where we are this evening we are so all so easily globally connected we’re from every corner of the world and yet we’re all able to speak to each other about a topic that we’re so passionate about that is very exciting to me and i think when we look at what covert 19 has done particularly in south africa in my experience it’s really shown a spotlight on diabetes because diabetes is one of the top co-morbidities and there’s an opportunity there because people have realized that diabetes is urgent and that we can’t wait and we need to start taking action with diabetes now and i think it’s also given us a lingo that we all understand now this lingo of flattening the curve so when i look at diabetes in south africa it’s the number one killer of women in south africa which is outrageous because it’s not a lethal condition as we all know but we have this opportunity we’re definitely on the upward trajectory of the curve things are getting worse and worse and if we can intervene now if we can intervene with diabetes education and with access to the right medication and with this global diabetes compact and make a real difference we can flatten the curve of diabetes it doesn’t have to get to the top of that curve and we don’t have to have all these people dying of a condition that no one should ever die of and so i would say if we look forward to the next hundred years if we can have flattened the curve of diabetes we will have done something remarkable and necessary and if i look specifically at what the global diabetes compact offers there are these eight action areas and each of them are so beautiful and and the vision and the concept for each of them are so beautiful and i really want to make sure that we are all aware of the fact that beauty is not enough we have to get super practical and like i would say probably down to getting a working group around each of those eight areas where we take one step on the journey to seeing that vision come to life but we have to start with a really practical first step and of course there has to be funding attached to that the magical funding great that’s a great suggestion bridget you’re right we’ve we must uh have sufficient funding for meaningful uh next steps um now uh briefly slim um and then catherine what are your recommendations i think uh i agree with just what uh bridgette mentioned uh we have seen also with the covet panemic in in this region uh uh that i really added to the burden of pre-existing i mean conflict instability weak health system federal state so all this there is an opportunity to build better but to build better with much more inclusion i think we have in the region different initiative also on health as a bridge for peace or other element to reinforce health system we have seen many countries that are uh on the journey of universal head coverage trying to reform massively i was in pakistan recently where a new uh essential benefit package is being rolled out progressively so there are different entry points um for the country to build back better but i think on the aspect of meaningful engagement um i really would like to look from original perspective on how we would for instance operationalize the recommendation of the report that just been released on um nothing on us without us what does it mean for our region to take one step uh ahead and say one by one and say what does it mean in practice what does it mean in term of uh meaningful engagement inclusiveness stakeholder marketing framework all those elements that actually are being highlighted in the report i will invite all the colleagues to look at them and reflect from original perspective on their own country perspective what can i do to advance and and contribute to this global effort this is how i would see i mean the way forward for me in term of recommendation just take it from this informal consultation from the voice of people around the world that have told us i mean very interesting uh suggestions have been made i think we need to personalize them and this is our accountability of double show that this is not just one important complication but just the first step on the long learning together over to you thank you so much slim and catherine i think michelle um so much has been said by my previous colleagues but i have to say you know you can produce reports that have great intents and and then it’s down to all of us to implement them michelle it’s not down to who who have done the consultation and have thought through all of those eight action areas and for my federation if we have a vision for a world where everyone benefits from access to safe and affordable medicines and what are we gonna do to make sure that actually happens michelle we have to take some accountability for that and i have to say you know um uh the coved pandemic has given us much pause for thought and it’s caused a lot of trauma in so many of our countries but one of the big things is that if you don’t have a healthy population they can’t work and they cannot contribute to the um success of that country so our governments need to listen to this really loud and clear and for a hundred years we’ve had insulin available to us we’ve had other therapeutic advances available to us and who knows what’s down the track and if we don’t allow equitable access to those medicines through all ports of call and i will i will describe to you michelle all the ways that pharmacy can help you my goodness me if we don’t all stand up shoulder shoulder on this endeavor i think we’ll miss a chance um of course communal communicable diseases like covet cause us a great big um acute crisis but we have all the ncds and diabetes is our first and foremost pause for thought so i will commit that pharmacy not just community pharmacy who can help with prevention and the way in which we can access our communities to help keep them healthier and even when they are being treated with um diabetes that they can be as healthy as possible but all of our constituencies from drug development to drug delivery drug manufacturer all of those elements of pharmacy we will stand shoulder to shoulder in this endeavor i think it’s time i think the pandemic has opened our eyes to the fact that inequity and inequality in access is no longer tolerable because it doesn’t keep our societies viable and the business and the business elements of our governments will understand that thank you so much catherine that was a very powerful recommendation you know i and i want to thank my entire panel i learned a lot from your contributions here you know i’m hearing that you know we can’t just say build back better we must take action we must start now to make the difference for the next 100 years that we will work together collaboratively embracing the leadership of those with lived experiences for an inclusive process inclusive partnerships that will be action oriented for which we will be accountable and that we will include people living with diabetes as informed and valued colleagues not just a tokenism representation for storytelling but really providing meaningful leadership and engagement side by side with businesses with the world health organizations with civil society we will do this so that we will have a united and integrated approach through the global diabetes compact i want to thank my panel you’ve given me a lot to think about and i think that we all will work together being prepared to take action going forward so thanks very much and i’ll turn to all of my panelists and i will turn the floor back to our co-chairs our co-host new poor and tiara thank you thank you michelle i’m sure um all our viewers who have been watching this will agree this was a very insightful panel discussion thank you michelle for moderating it beautifully and uh thank you to our panelists emma bridget slim and catherine um wonderful points there really really uh lots to chew on and lots to think about like michelle mentioned um also ramadan wishes to all our friends across the globe um our third panel neck coming up now is on country implementation and the moderator for this panel discussion is jill farrington from the regional office for europe of the world health organization over to you jill thank you so much and thank you for the honor of being able to join you this evening and to be part of this event and the panel we’ve had some great panels before us but we also have a great set of speakers and with great experience to share with you if i introduce the different uh speakers that we have this evening we have christopher boyer who is the project manager for the first type 1 diabetes registry in the in the caribbean which is the ian wooznum type 1 diabetes registry and she’s also a pa a patient advocate and spokesperson for diabetes and chronic non-communicable diseases we have uh idiots more cantora who is from the african diabetes alliance based in uganda she’s the co-founder of the alliance which is a patient support organization that empowers people to disarm diabetes daily in africa and she herself has experience of type 1 diabetes for 16 years and is a nutritionist by profession and diabetes educator we have my colleague from the southeast asian office of w.h.o dr gampo dorji he’s the technical officer for non-communicable diseases based in new delhi in india and he is supporting 11 member states in ncd service delivery and the management of non-communicable diseases including diabetes and finally we have professor kaushik who is a consultant physician and the chief executive officer at the sri hindu mandal hospital in dharasalam tanzania and amongst several appointments he’s also the general secretary of the tanzania diabetes association the tanzania ncd alliance and a member of the board of the world diabetes foundation so we have a great set of panelists who have both professional and personal experience of diabetes who are active within their communities within their countries and internationally and we look forward to the different perspectives and the experience that they’re going to share with us our panel is focusing on country implementation and that’s both country implementation of diabetes programs but how we are also implementing this engagement of people living with diabetes how are we actually putting this into action moving from dialogue to action and the question that i’m going to ask to all panelists first is what are the challenges that they’re finding in implementing at country level both the programs but also in terms of engagement and i’m going to start first with crystal so crystal can we have your comments on this question thank you hi everyone it is so great to be here so let’s draw a line in the sand it could be beach sand desert sand or even snow now stand right in the middle turn your head to one side it is your perfect diabetes landscape environment and life and on the other it’s not when you turn your head to the left access to quality health care is almost non-existent and to the right specialist visits expert care where pushing boundaries and clinical trials are the norm you see vast differences in education from those who don’t understand the basics of diabetes or even what type they have to those who are carb counting and even looping on their own you see families who are completely destroyed where finances decide what health decisions are priority and where burdens cause its structure to crumble to situations where families unite cool resources and thrive as you turn your head to the left both those living with the disease and their family members lose their jobs as stigma and the burden of constant care takes over their lives in contrast to those who work in environments that fully support and understand them you see those who are celebrated for their impa at the policy level to those who are told they don’t matter you see situations where type 1 diabetes does not want to be grouped with type 2 diabetes and vice versa as the stigmas make it harder for them to be accepted to situations where all forms of diabetes celebrate and support each other you want to cry when you see amputees kidney disease dialysis premature death but then you swivel and see those with diabetes living full life sometimes healthier than those without you see those experimenting with new insulins awesome technologies and free care to those who ration store insulin below ground test their sugar only a few times a week due to lack of supply and worry from dose to dose you see privilege and inequity at the forefront from those who use and access to diabetes online community to its fullest and those who don’t even know about it or this day that we are celebrating even exists on my island only 165 square miles long along my line in the sand there are many faces looking to the right in search for a better future the challenges are diverse the people are by the thousands it’s time to close the gap blur the line and build an equitable future for all thank you so much crystal that was such a rich picture of the realities of living with diabetes for people and for their families and and really strong examples of the challenges they face can i turn now to edis can we have your comments on that question um hello everyone um thank you so much for the opportunity and thank you for everyone that’s discussed before me it’s been quite an engaging discussion really getting us to think um i think one of the biggest challenges that we have in country implementation here is um a lot of misinformation which is a big problem because a lot of people have so many myths and they truly believe these things so in addition to that there’s a lot of fear connected to diabetes a lot of people believe it is a death sentence whether or not you try your best to manage it they believe once you have it you’re gone so there’s a lot of fear associated with it and because of that people are not willing to go for testing people are not willing to you know uh to go to uh health care centers just the idea that they could have diabetes just the fear is so great that they’d rather not know and that’s where the biggest challenge is because the lack of proper information is a big big challenge um another issue that a lot of patients do find is um number one there’s a very diverse difference in access in care a bit amongst all the countries uh in sub-saharan africa there are so many differences so that um the the experiences are so different as well and finding um definitely the patients do have a huge role that they play usually when patients come together that is when um they start to thrive you know when they find their community they start to thrive so um trying to and unfortunately the communities are few and they’re not well supported either so uh trying to find and engage patients really really well would be a big help um it’s also um unfortunately uh there’s very little imp sorry a funding in in education and awareness creation and food and nutrition for example and these are big things that can actually help people prevent diabetes or prevent complications and um without that knowledge a lot of people are going to struggle you know because without any lifestyle change a lot of the time diabetes does not get managed well so um getting um some uh funding for some of these things would be really would go a long way to help people who are already low usually um disadvantaged and you know looking for simple solutions these are simple solutions that we could use to help a lot of people um you know keep away from the detriments of diabetes um another thing i think we really need is having a united front as people working in diabetes are working together would be amazing because even the leadership being diverse being visible you know the thing is a lot of the time people are struggling in villages or wherever they may be and they can’t find people to go to for help for support so trying to find ways to be mo become more visible so the people that need help know when you go to this place you can actually get assistance um i think those are some of the things i would say would be the challenges yeah thank you thank you edith you’ve given us a a really good list i mean you’ve covered areas such as the misinformation the fears the myths but also right over to issues like access to education funding and and being united together if i turn now to gampo would you like to add from your perspective on this question what are the challenges that you’re seeing in the different countries in which you’re working thank you jill and uh good uh evening everyone it is good uh late night here from new delhi it’s such an interesting uh discussion and i would like to throw some light on some of the challenges and implementing diabetes program uh primarily from maybe southeast asia regional perspective we have heard this in the earlier discussions and it came out multiple times that access equity to diabetic services is an issue and a big issue and in order to sort of address this uh from my perspective i feel that from population and public health perspective attention to the primary health care approach uh to integrate diabetes services as an integral part of the service is the key and we already know that there are already existing deficiencies there although the governments are taking very incremental steps into improving primary healthcare system thus current systems especially in low and middle income countries mostly are not geared towards providing people-centered uh diabetes services by which i mean you know there’s no recall reminder follow-up mechanisms and in the process overall at the national level the program accountability management are also weak and there’s no proper indicators to measure the coverage of services and there are control rates for glycemic control rates of the programs so there are a lot of areas there the national programs and the the health service delivery systems are challenged with so we must recognize that this these are amenable and we must pay a very focused attention to improving this part of the the health service delivery system to ensure that we improve access and equitable diabetes services on in on the part of the engagement of the people living with the diabetes and people living with other ncd conditions i checked with my friends in the country offices this afternoon just to assure myself and what was common theme emerging from their voice was that the concept of engaging people with the conditions or with lived experience is very new fairly new in the southeast asia region at least and we have a huge opportunity there’s a huge gap there but with compact launch i think it gives us a special amputees to move forward and i was i’m already thinking some interesting steps from here on thank you over to eugene thank you camper so you’ve drawn attention to the access to services and the weak uh health systems but also recognizing that in some regions in some countries engagement with people with diabetes is actually a concept or a way of working that that they may not be used to okay can i move to uh kaushik uh from tanzania and ask if you have any thoughts or comments to add on this question i can see you’re connected but maybe you need to yeah right sorry thank you very much uh jill thank you very much and thank you for inviting me to be part of this panel uh responding to your question regarding uh what are the challenges in implementation at the country level uh i will look at it from four four points of view uh i would start with uh first of all i would start with component of health system and i would say the policy at the programmatic level second thing i would look at from the health system approach of what can we deliver at the health system and the third i would look at the dimension of looking at people with the disease or how would they be able to access or actually get the care which they require so if you look at the policy in the programmatic level i think most of the countries have been late in starting the national programs they have started programs but that very small levels initially at initial levels and most of these conditions have been managed at the tertiary care or secondary care hardly any services have come down to the primary care second is that diabetes was never a priority initially in a developing world and you would say that probably diabetes was the disease of the rich but basically diabetes currently affects whether it’s rich or poor but it affects everyone and the third is a dimension of children or people with the type 1 diabetes where they require insulin which is life-saving so if you look at resource allocation the resource allocation for non-communicable disease was very low and especially if you look into non-communicable disease priority would be hypertension and diabetic diabetes would be bottom of the list again how would the health system respond so if you have a person with diabetes if he goes to the primary care there will be no diagnostic equipment you would have no medication you would have to go to a secondary care or a tertiary care so again transport cost of going to the trust to the service to seek a service would be a big challenge human resources for health again hardly any trained people at the primary care or the secondary care at tertiary care you would have the experts or you would have people who have been trained so challenges of getting human resources for health or managing people with diabetes giving them a clinical care giving them the comprehensive component would also be an issue and finally if you are able to tackle that then supply chain would be an issue in a sense that are you actually able to take your products or are you able to take the commodities to the last mile in a sense that are you able to supply insulin are you able to supply the strips are you able to supply the syringes to the last stage in addition to that there is a social dimension social dimension is the cost of going to the clinic able to basically family able to afford providing the services or provide providing the commodities purchasing and then finally you have the challenge within the socio-economic component within the family is that are you able to sustain because this is a lifelong medication the lessons we have to learn from is is from the hiv program and if you see it from the hiv program you find that one you had an unique identity number for each of the patient was registered and if that patient was able to access clinic anywhere in the country they would be able to get the we medication not have a unique identity number or a unique identity uh of an individual who has been diagnosed with diabetes or any of the non-communicable disease so the same person might be seeking care at four different facilities and getting four different medications so that is a challenge there which you have and you need to have a consistent program which is actually treating these patients and what is happening to them in addition to that you have what we call as the comorbidities with diabetes and probably in patients who are attending the hiv clinics patients or attending the tb clinics patients are attending the hypertension clinic whether we are making enough efforts to diagnose people with undetected diabetes and currently with the kovite 19 you can see that many of the patients who came to the hospital and the clinics were those who are undiagnosed with diabetes and came with very high levels of blood glucose which probably they never knew that their diabetes and that caused about quite a significant comorbidities and finally the question about empowerment of the people with diabetes are we empowering adequately enough so they can fight for their rights and if you see is that i believe that hiv world had activism in advocacy while in diabetes world i think we have been very docile we have no activism and that is why we have not been able to get our way around thank you very much thank you very much you’ve covered a whole range of things one of the things i take away is what you were saying at the beginning about countries having been late with implementation and layton putting a priority on the work of diabetes and then organizing the systems accordingly in the time that we’ve got left i’d just like to be able to go back to each of the panel members and to see if they’ve got any further thoughts on what are some of the opportunities for overcoming the challenges that either they’ve mentioned or that they’ve heard um other colleagues and panelists mention i mean in the consultation previously there were suggestions around designing more inclusive programs co-designing and co-creating some of the different initiatives but i wonder if there’s anything that you would uh like to add in terms of solutions let’s start first with crystal again thank you thanks so much jill so as a patient myself who works in communities with persons with diabetes i believe it’s essential for the global diabetes compact to partner with community-based organizations and local groups in small villages and towns to engage the grassroots community and build a movement for change yes more and more systems have increasingly targeted diabetes by implementing various programs however little work has focused on what types of interventions are likely to succeed among the poorest people with limited resources these groups have special challenges and research and programs designed in more advantageous populations cannot and should not be generalized here we need to meet them where they are even if it’s within non-traditional spaces such as churches and barber shops or corner shops and village shops as we have here in barbados and design programs that fit their unique needs considering their culture and language building these small resource limited community groups and organizations and training them so that they all meet the minimum requirement for diabetes management and care is essential these small groups are where big change in tiny pockets around the world take place educating them empowers the people they serve and provides them with the tools they need to better understand how to live and thrive as best they can in their world and not ours as everyone has said people living with diabetes are an underutilized resource we need to work with them on the ground to co-create programs there is one way to look at something until someone with lived experience shows us how to look at it with new eyes we need to tap into the eyes ears minds hearts of those on the ground with lived experience there is beauty there there is power there there is knowledge and creativity there that is where the real change begins thank you well some great quotes to take there let’s start small it can lead to big change and that’s where the beauty and the power is but also targeting uh and tailoring uh to the needs of the the poor and the disadvantaged can we move on to edith would would you like to add yes please um so i think um in our communities um in africa a lot has to be done to educate the masses because that’s where the biggest challenge is so that requires better communication better education and empowerment because you can’t educate people that well you can educate them but rarely will that education manifest into actual impact if they’re not empowered to use that education so um it’s a whole overhaul of the system um enabling patients to actually uh make the changes that they need to make um another another another one i think would be really having a a vibrant leadership would be amazing because like i said before if patients are looking for solutions but they can’t find them and the only option is to go to the medicine man or to go to the herbal the herbal doctor or to go to you know the the local the local i guess herbalist and those are the only options they have majority of people are getting um issues health issues because of that a lot of people are abandoning medication for those horrible concoctions because the medications are too expensive because of misinformation so it’s a whole overhaul and trying to really engage people living with diabetes people who are even scared to admit they have diabetes it because accepting um your reality sometimes it’s part of um actually taking the change making the change that you need to make um so yeah i think um also uniting our efforts as people um working in the diabetes space is also very important because that’s how you know you you’ll really create a supportive system because um when you advocate in as as as a lone person it’s very tiring it’s very um it’s very it’s and it’s not motivating you know but when you have a team of very engaged people wanting to you know make change create change and you’re working on it together then each of you really adds energy and and and we learn from each other and it becomes quite an interesting space to work in yeah thank you very much thank you very much i’m getting messages that we are running short of time and i would like to check if we have time to collect any further comments perhaps or whether the co-chairs would like us to revert to them uh tiara can we continue or would you like uh us to close our panel let me continue um very briefly with um gambo and kashyyyk yeah thank you so much maybe if we move uh gampo a sentence a couple of sentences anything that you want to add that’s not been covered because we are short of time now yes jill thank you moving forward and some of the solutions i think is from the regional office in southeast asia region i would i would work with my director to create this same level of enthusiasm and understanding among our focal points at the ministries of health to unpack the global diabetes compact and we could create a regional mechanism this is one immediate thing that we i feel as a solution and the second is on the engagement of people living with diabetes and ncds we could we could network with the crncd airlines which i think is a lot of opportunity to again work together and see how we can create provisions there to have more regional engagement of people living with diabetes and with lived experience thank you can i just check if she wants to add a sentence yeah yeah just to tell you regarding the opportunities that i think as a member association or if you look into the people with the disease if you look at people with diabetes just to tell you about the opportunities then for example with the transient diabetes association we have been able to work with the ministry of health we have been able to basically put in an end advocacy program and we have started the national ncd program which the implementing partner is a tanzanian diabetes association with the tanzanian city alliance and working with the ministry and trying to settle the program within the public sector at the at the secondary tertiary and the primary levels at the same time empowering the people with the disease and getting peer educators who basically start working with the patients in the at this diabetes services and providing the training to the health care providers so where you have a multi-stakeholder approach whereby you are able to work with the ministries you are able to work with the infrastructure which is already existing i think it becomes much much simpler to put it put in the programs initiate the programs and make this program sustainable because if there is no sustainability of the program as soon as the donor funding ends the program tends to die out so it is always better to work it takes its own time to sensitize the ministry it takes it times to do adequate advocacy with the powers-to-be but then once your advocacy does work then the programs become sustainable and they work over a longer period of time thank you so much and thank you to the whole panel we’ve had some really great ideas we’ve gone from very small initiatives with individuals in the community all the way up to how we could change things at the regional level and across multiple countries so thank you so much for your ideas your commitment and your passion in your answers i i’m very conscious of the time so i will pass back to um our co-chairs thank you and thanks to the panel thank you jill and our parents for that great discussion and believe it or not everyone we are coming on to our next and final panel and this discussion centers advocacy and education addressing stigma and other barriers and the the moderator for this discussion will be miss johanna roston from the world obesity federation here in the united states joanna over to you thank you so much tara and thank you to all of our fantastic speakers to excellencies ministers of health dr tedros uh dr axelrod nicholson and and bonus for your fantastic um support in organizing this as well as the government of canada and we’re really um delighted to be here today uh for what will be the final of this incredibly uh exciting um and transformative set of panels um also i should add ramadan kareem to our colleagues from all around the world today we’re going to be speaking um to advocacy and education particularly to overcome stigma and misconceptions around um diabetes so um i am as as uh tara said i’m the um johanna walleston i’m ceo of the world obesity federation and i’ve been working in um ncds for 25 years in early days of ncd alliance and world heart federation and others but more specifically i’m also a person living with ncds for 30 years i’ve been in remission thankfully from ms for 20 years and i’ve also lived with cancer so i am both a a patient and a professional like many of us around the table um our interest in um as world obesity federation is very much because obesity shares uh so many comorbidities with other diseases and there’s a huge correlation between diabetes and obesity and we also share a target in the 2025 plan around zero increase in prevalence of diabetes and obesity which we we know is is a a challenge um so i guess i just wanted to make a quick observation before really getting to um the meat of today’s session which is our fantastic panelist which is that i think there’s been um in my professional life and my life as a patient it seems to me there’s been two game-changing periods and the first one was really when the ncd community formed around the four initially the four main diseases four risk factors and that’s was interestingly enough led a lot by diabetes when with a diabetes resolution in the 2000s which then sort of uh paved the way for the um the start of the ncd alliance which i was part of and the um and the kind of global ncd movement um and now i think diabetes is leading the way again by really placing people at the center in a way that i think it’s really is long overdue and i think we’re all here because of that um and i think you can our passion is measurable and our effectiveness if you match that passion with um all that lies before us is is beyond measure so i think um it’s an exciting time to see this voice of lived experience um if you don’t take away anything else from today or at least from what i’m saying what guy phone has said that we have patient experts here is so important that phrase patient experts not patients as last minute invitees or tick a box but patient experts around the table nothing for us without us and i do commend that report to you as well it’s fantastic so um without further ado i’m just going to quickly introduce our brilliant speakers and then i will have a couple of questions and dialogues so first the person who i think has has uh had the most disruptive sleep in getting here is uh renji shebelia from diabetes australia uh living with type 1 diabetes a professional who is also does a lot with language and stigma and is going to talk to us about that and i do believe it’s 4 30 in the morning if i’m not mistaken so bravo renzo you uh got up in the middle of the night to be here and um have been here valiantly we also have a patient advocate from kuwait and the u.s allison ibrahim who is an educational consultant patient advocate and speaker involved with world obesity federation ncd alliance and wh o and a great partner to all of our efforts then it’s jean-marie dungu who is a regional officer for africa the world health organization team lead of the ncd management uh ncd integration into communicable non-chemical disease management for the afro region and a person i have had the privilege of working with for a number of years who has been working in all 47 countries in the afro region and then finally um emma clayton who is our global policy and advocacy manager for life for a child uh uk also an individual living with type 1 diabetes so broadly we are going to um would like to just um ask the panel to each respond quite broadly to sharing your perspectives um on uh on on how lessons that you’ve learned regarding um barriers to care so sort of perspectives and lessons learned on on on barriers to care including stigma for people with uh diabetes and how we might be able to um overcome those so renzo if we can start with you um recognizing that you are particularly focused on language and the importance of language and so thanks joanna and before i start i’d like to acknowledge the traditional owners of the land where i am that’s the waranjari people and pay my respects to their elders past present and emerging and pay my respects to any indigenous people watching today um i am going to talk a little bit about language i’m going to talk about um how that is just so important when it comes to communicating about diabetes and to people with diabetes um i work for diabetes australia and we launched a position statement about this 10 years 10 years ago now but that wasn’t the start of this conversation that came very much from the community and this is why it’s so important to listen to people living with diabetes we heard from the community that language is stigmatizing it blames it shames it judges people it means that people are likely to not want to seek care because they fear what how they will be perceived so we know that there certainly are specific words specific ways that diabetes is spoken about that has in a lot of ways given diabetes i guess an image problem and a great example of that is if we were to perhaps be in a cafe where there were three jars um with three different charities for people to leave their loose change in diabetes probably would be the one that the least the fewest people actually donate to people think that diabetes is brought on by ourselves that it’s laziness that it’s a condition that we deserve to get because we weren’t active enough now this is regardless if we’re talking about type 1 or type 2 diabetes there is huge stigma perhaps there is more stigma when it comes to type 2 diabetes because of the lifestyle implications that we hear so much about and i really would like to challenge people when we just talk about that um that lifestyle factor when it comes to type 2 diabetes so thinking about language is really important but also remembering this isn’t about tone policing the words that people with diabetes use we can use whatever words we want to describe our condition however when we’re looking at organizations when we’re looking at the media when we’re looking at health professionals and researchers being really mindful of just how those words have so much impact is really critical in ensuring that people feel empowered rather than feeling stigmatized fantastic that’s incredibly helpful for um for us and it’s very applicable to um to other diseases that that we’re all um uh grappling with as well so thank you very much for that um and next we are going to hear from um allison ibrahim who will give her his perspective as an advocate and also perhaps allude to her recent experience of um covid in two different countries on two continents and how that has actually even deepened her her understanding of um of the role of the individual with lived experience allison thank you hello everyone uh thank you very much to the global diabetes compact and to the world health health organization for this wonderful opportunity and event um i’m allison tennis in ibrahim i’ve been living in kuwait for the last 28 years i’m equating citizen and an african-american um obviously a community that is also very uh under served and that would be both on the north american continent or many other places in the world as well as the original continent um i’d also like to recognize ramadan myself as a muslim and say mubarak i like them all shahar to all my brothers and sisters and to everyone for ramadan the original intermittent fasting um as a retired educator and devoted patient advocate i know that people living with diabetes may often have comorbidities and in my case i have multiple um as a person living with type 2 diabetes and as well as obesity hand in hand for nearly 20 years i’ve lost 60 pounds and have been able to get a little bit of control into my health it’s very encouraging though to witness the growth of acknowledgement and to practice from the distinguished medical community we need you with us it’s um also people living with diabetes have life-saving information to share through experiences our voices when acknowledged will present opportunities for us all to directly participate in our health when we are more aware and sharing the understanding of diabetic markers such as education on care and treatment and equally as important caregiver training which i more recently found out myself was life or death i don’t know much about insulin but i had a father who was insulin dependent so things like that and the learning opportunities are so important with attention to areas such as association between type 2 diabetes like johanna was talking about and obesity um the positive impact of wider support through the effort efforts of who places in organizations like the world obesity federation ncd alliance and the launch of this global diabetes compact with the global diabetes summit that we’re all attending today with support from the governments including canada who’s our sponsor and as other governments that are here today that we advocate educate and train and empower in this way is life-changing to establish relationships with our health care team we’ll all gain medical realizations listening to our bodies offers opportunity to learn and with the onset of covet 19 these past 16 months have been challenging at best the need is strong for cooperation equity and access johanna mentioned to you about the fact that i’ve lived between two cultures and i’m here in the united states because i lost two family members over these last few months not to covet but to ncds with that i also had to get medical insurance for myself coming from kuwait a country that is universal health care provided freely to all including primary secondary and tertiary care including medications and ongoing treatment it was a shock to the system to come home i pay 750 a month for medical insurance that covers me to a primary level which i’ve never seen the doctor since october telemed in kuwait i’ve seen the doctor at least a dozen times during the pandemic these opportunities make or break a health care health care for for an individual or people living with diabetes we have to become more interested in opportunities for global alignment and joint advocacy to focus on methods of building back better these experiences that i’m having are real and i need help and you can’t do it alone and we aren’t getting very far without support um i just want to also say that um the building this bridge between what w.h.o is offering us with the global diabetes compact and bringing in people living with diabetes as voices for their own care and attention is monumental and i can’t thank you enough for that and i wish you all wonderful wonderful rest of the summit and i look forward to talking to all of you and again in the future thank you thank you very much allison excellent and now it’s uh my great privilege to represent dr jean-marie dungu who will speak about some of the myths and misperceptions with a particular focus on on type 1 diabetes through his work in in many countries in africa thank you thank you very much joanna i’m very honored and pleased to be part of this conversation on diabetes uh sharing the perspectives and lessons from the african region i will start as you rightly said by one diabetes and i will expand a bit to all form of diabetes so with type 1 diabetes the stigma is twofold we all know about it as in it involves children but also the parents who out of lack of awareness occasionally pass blame and miss an opportunity to stand with the child and support them in the journey we have identified three pillars making the foundation of the stigma in type one diabetes first it’s a high level of an awareness of the teaching ins and school staff on diabetes we saw lack of support and a lot of injection related stigma in schools as it’s sometimes confused with injecting drugs in boarding schools injections are done in hiding by the patients the second pillar we identified here in the region is huge treatment gaps with poor access and sustainable supply of insulin the unavailable necessary cold chain and blood glucose testing capacity results in an in and out of hospital patterns for the child that further fuels the stigma and the third one is about myth and misconception about the origin of type 1 diabetes abound and in africa most border on witchcraft spiritual connection and bad women all which fuel stigma uh to type one diabetes this myths and misconception about diabetes foster and sustain stigma and blame that eventually affect the self-esteem of the child leading to failure to thrive most broadly to help with understanding of stigma and discrimination in people living with diabetes regardless of the type of diabetes as well as thinking through where and what the interventions the advocacy and education interventions could be various dimensions were observed i will set two of them the first one is the social ecological dimension which includes four components the public policies such as national and local laws and policies that could be drivers or discriminating practices or that could be facilitators of anti-discrimination the second component is organizational factors including organizations themselves social institutions workplace the third one is community factors which includes cultural values norms attitudes in the community but also interpersonal factors which relates to family friends social networks and the last one is individual factors in line with the knowledge of the patient attitudes and skills so that’s the perspective and lessons i would like to share with regard to what’s happening in our region advocacy and education should take into consideration the pillars making the foundation of stigma but also the two dimensions i described over back to you thank you so much very helpful okay and now finally last but not least we are going to speak with emma and if you could just um broadly speak about um unique perspectives and lessons learned and uh and also within your experience with um type 1 diabetes how do you ensure a strong narrative with the best possible evidence um so you can address differences and commonalities and commonalities between type 1 and type 2 and what are some of those challenges in translating those messages at the grassroots versus global level some sort of a couple of different questions thank you thank you joanna um firstly i would just like to say that this is indeed a great honor to share this space with fellow advocates and practitioners having just marked 23 years of having type 1 myself and to follow on from jean-marie’s focus life for a child’s work and activism has centered around creating evidence-backed advocacy for increased provision of diabetes care in less resourced countries and for young people in these contexts they struggle to access even the most basic components of care and when the struggle is present and it is far too present they risk developing dangerous and premature acute complications and chronic ones too these are ones that obstruct them from thriving these are ones that prevent them obtaining the basic human rights of leading safe and healthy lives these are ones that even in some cases prevent them from living these are avoidable risks these avoidable risks can be in part linked to a lack of evidence on the true number of young people living with diabetes mortality and morbidity estimates cost-effective interventions and how lack of access to care plays out in terms of health outcomes the lack of data in this area has consequences and these consequences put roadblocks in the way of making change for young people who currently face unaffordable access to the diabetes care they need i mean i think in other words nothing can be changed until it is faced and that is where life for a child adds advocacy value by helping to craft evidence for use within local settings we’ve carried out epidemiological data on the incidence and prevalence of diabetes and youth most recently in bangladesh and eritrea and published studies that show really that intermediate levels of type 1 diabetes care are indeed cost effective as per who choice in six countries including azerbaijan bolivia mali pakistan sri lanka and tanzania thank you thank you so much emma so that was a really interesting range of of discussion of of interventions ranging from renzo’s around language narrative and and some of the um some of the discrimination that occurs there allison’s lived experience and also perspective um working uh in a in a country with uhc in a country without universal health coverage emma really really useful to hear um that sort of the role stigma is playing among young people but also how you weave a common narrative and thank you jamali for um really highlighting the role of parents um which i think is has probably um and and caregivers as well we could we could um extrapolate um and looking um in particular just how do we how do we get over some that’s how do we understand the context of it better things enormously valuable so we have one final round of quick questions for which is really what would be one recommendation you’d make moving forward around this broad issue of addressing stigma and other barriers um overcoming those so i’m gonna go in the same order again if if i may and say renzo what would you be your one recommendation so we’re talking focusing on language there is so much out there so i feel that you know it’s really important that we can provide some solutions here there are language position statements that have been developed around the world now so finding those and using those as a very simple guide that um organizations can use individuals can use um if you’re if you’re a person with diabetes and you’re being interviewed in the media have a copy of that to give to the journalist and insist that they use words that are not stigmatizing that they don’t paint you as a victim that that they use words that are empowering it’s actually it doesn’t need to be all that difficult there are ways that we can make these small changes and that’s how we can really change that perception of diabetes and start to reduce that stigma on a broader scale so that’s just a really quick but quite simple tip yeah thank you very much um allison what would be your one recommendation um my one recommendation would be that we could start focusing a little bit on lifestyle as well if we’re going to talk about advocating for education and training that incorporating like behavioral interventions such as self-monitoring self-motivating self-kindness keeping a positive focus and outlook to keep and share empowering messages as ways of helping to build up people living with diabetes and focus on themselves listening to the doctor following medications limiting stress fear and anxiety i know that’s very difficult during these days and times we we try to find the best ways we can and that’s that’s it thank you great thank you thank you johanna allow me to make two points the first one is about health promotion on diabetes health promotion on diabetes if holistic is all rounded and can serve as an entry point into promoting wellness in the entire life cycle continuum and in management of ncds and infectious disease alike we should use information technology to support health literacy and diabetic patient empowerment we should develop incentive for diabetic patients education prevention early detection and lifestyle change my second point is about key success to the to the compact it will be alignment and united action across the public private and philanthropic sectors with a deliberate attempt to meaningfully involve people living living with diabetes in policy deliberation and advocacy operational arrangements which drives results government transparency and accountability thank you great wonderful thank you so much and emma what would be your one recommendation thank you joanna um so i’m a person living with type 1 diabetes but i’m also a professional skilled in public health health economics and data so i suppose it might be easy to look at me and think oh of course she can speak on this she’s a professional but i really want to instill that the bedrock of my skill set is having diabetes and you know and think about in thinking about balancing strong narratives as agents for change my message is this advocates should not be afraid to step outside of their traditional lanes they should know that they are allowed and encouraged to bring data and advocacy into evidence-based approaches i really think that i think we can all agree having diabetes is a prerequisite enough and i think just finally i think the hard work really does begin when we think about implementing these evidence-based tools to drive change and we should be encouraging a melting pot of on-the-ground implementers to carry these messages through to local lawmakers so really the recommendation i have is to have a rethink about our lanes so that trailblazing local advocates are able to understand and disseminate what may have been told to them as being too high level you know advocates have power to change the game in their settings and country leaders they listen to them and when country leaders are aware of the true number of children and young people needing to be forecasted for and that more of them are dying than they think and that those surviving struggles still to access basic diabetes care how could action not be driven thank you thank you so i think just to summarize first of all just thank you to such a fantastic panel and um just to summarize i think the the the recommendations are again languages i would i’d suggest for adding images too i think the pictures that we use the people uh have a huge um influence as well um and there was a very interesting correlation between lifestyle and um and sort of life course that between germany and and allison in terms of the individual as an agent of of change and the and and contri and diabetes as an entry point to a holistic ncd approach um and of course emma speaking about to the patient expert point completely agree the reason i consider myself an expert is because of not all the years i’ve worked or studied but lived at living with ncb’s has been my experience and i think all of you living with all the people here who are living with their affected by diabetes are the uh the true uh vital voices at the at the center of this table um so with that i think we want to just thank you celebrate the global diabetes compact celebrate this increased motivation thank the diabetes community for once again leading the way for um and and saying you know we’re not we’re not going to come to these meetings 10 years from now and say we need to be more like hiv and community and have strong patients we are the people living with we are the people who can drive this alongside our friends colleagues allies in who in all the different sectors so i just want to reiterate that this is a shared effort and this is an exciting moment uh and with that i want to thank who very much for inviting us as well and i’m ready to to turn this over then thanks said tara okay um so our fourth and final panel for today was a very rich and interesting discussion moderated expertly by johanna and our panelists renza who incidentally celebrating her 23rd diabetes anniversary today alison who shared her experiences about the health care system across continents as a person with diabetes and a caregiver jean-marie who who touched upon stigma and emma who spoke about access and costs in low and middle-income countries now as we draw to the end of this wonderful segment from today’s global diabetes summit it is my pleasure to introduce the deputy director general of the who dr susana jacob to share her closing remarks the 100th anniversary of the discovery of insulin is a painful reminder that one-third of people in need around the world still cannot get access to insulin at the same time this occasion presents a window of opportunity to invigorate new and meaningful partnerships and collaborations to bring diabetes care and medicines to all who need it people living with diabetes must be able to enjoy their rights as equal citizens in every country global citizenship confers rights on each of us to have equal access to essential services such as diabetes care testing and medicines universal health coverage should become the foundation of the right to access health through the global diabetes compact whoo will seek to mobilize partners to propose global coverage targets for diabetes to the world health assembly wages final decision-making body with the current covid19 pandemic and more individuals paying attention to the global health agenda together we have an opportunity to be ambitious fundamentally their people and communities living with and affected by diabetes should be further engaged in decision making and die a service delivery more people living with diabetes gain access to treatment and more undiagnosed people are tested this co-creation of solutions will build a community that will walk the talk of action on diabetes together with us we welcome your insights on shaping global guidelines for engagement that persons living with diabetes and other stakeholders can adapt to strengthen the governance of the compact at regional national and local levels we hear your calls to fully embed and advocacy commitment from all partners backed by a rigorous data-driven approach is essential in achieving this goal you have shown us that your actions encourage governments to develop ambitious national diabetes responses your involvement changes the language around diabetes reduces stigma and focuses on the commonalities between type 1 and type 2 diabetes while at the same time acknowledging the nuances we acknowledge the need to develop better educational and health literacy tools for people living with diabetes their families and communities that can be adapted across cultures and contexts we want to ensure you to feel part of what we aim to achieve with the global diabetes compact ensuring that people with lived experiences on the past present and the future together 2021 can be the year to build a global coalition for bringing diabetes care to all who need it and begin building a truly inclusive approach to supporting people living with diabetes around the world thank you thank you deputy director general and now i have the pleasure of reintroducing dr svetlana axelrod and also dr benty michaelson to provide further closing remarks thank you very much really fantastic discussion and a lot of new opportunities for us new future steps that will have to be going on and i’m really want to thank all the participants especially our co-chairs moderators so for all the panels and of course the panelists itself for this very interesting discussion and we view from the different angles how it is important to support people living with diabetes and how we should work more closely and work more closely with the member states to support them in their activities to fight against their diabetes to find to be intensities so i’m really excited of this fantastic meeting the first segment was a high level but the second segment was also very very important because we’ve got this interactive discussion when we’ve got these new uh thoughts new experience how we should work on it and how we should make our future development on the diabetes and what we can do so really i’m very excited thank you very much all the colleagues and uh from double reacher and all uh panelists and moderators for this productive discussion i just want to highlight maybe a couple of three thoughts that was already mentioned by uh deputy director general susana jacob uh in her final words and maybe just to say that we are just in the middle of our way and we should join all our capacities to do more work to support the countries to support the communities to support the people while leaving the densities and of course we will do all our best to make this successful so that is that is our future and uh of course it’s uh very important that we will collaborate in different platforms and of course we want to engage young people to do this work we want to engage also the people who are living with diabetes and of course we want to engage all civil society uh to be the part of this discussion i don’t want to speak too much because it is a late time for for geneva and it will be followed by the third segment i want now maybe to ask my colleague bentham nicholson and also to say thank you very much bente for this fantastic meeting that you uh give us the opportunity to to join me as a director of the global entity platform and thanks once again for this productive and fruitful discussion over to you benton thank you very much and what a day and what a segment so it’s such an honor to be leading the double ho global diabetes compact together with all of you this is really a co-leadership and i load when some of you several of you actually said this is a game changer so i just want to bring us a little bit back so of course we do this in the context of code 19 pandemic and it is an unprecedented effort to mobilize resources and political will to meet the health needs of people living with ncd so the tragedy has also become an opportunity and since the pandemic we must realize and i think more and more leaders of governments heads of states and governments see that people living with diabetes have been among the most affected of the covet situation and the crisis is far from over indeed the speed of the infection is now even increasing so the covet 19 pandemic is over most immediate challenge but we cannot ignore the significant fragilities that has been highlighted especially for people living with diabetes for many small island development states and least developed countries the effects of diabetes are deadly reality already as we have heard today from many of you and also from the heads of states speaking before so we need to really learn now we need to learn very fast and we need to reverse this dangerous trend and that is why we launched the global diabetes compact today so the increasing premature mortality the lack of access to medicines and technology the covet 19 and 100 years of insulin so it’s a once in a generation opportunity for bundling bold and creative diabetes solution so that’s why i’m so happy that you all of you and many many more people around the planet know are willing to be co-leaders co-create solution and bundling solutions already existing and i think we don’t need to be afraid to put multilateralism to the test i mean the reason why so many heads of states and ministers actually joined us today is the proof of that so we need to issue a call in may 2021 for really a multi-million commitments to be delivered each year to include ncd into uhc and primary healthcare so together with you and together with all the that has been on the journey so far experts uh colleagues all over the globe like we have seen today from the regions from the countries from p from the colleagues working on medicines and technology health systems and and also communication which is important we have seen and we have listened and the the the way we have listened is also nosotro materializing into eight asks for all those who want to join the compact so the first act is to unite and you have spoken to it today collaboratively unite stakeholders include people with living with diabetes around a common agenda and scale of advocacy advocacy is important also to integrate integrate diabetes prevention and management into primary health care in uhc and also to triple country support innovate we need to close the research in normative gaps and we need to spur innovation we had people online today who stand ready to help and support with innovations we need to treat and many of you have mentioned the importance of coverage targets we are working on that now we are also working on global price tags we need to be sure that we improve access to diabetes diagnostics medicines health products and especially insulin in low and middle income countries the fifth task is to track we need data we need to develop the coverage targets and track them we need to establish a basis for accountability and also to be able to trace and improve we need funds to improve we need to educate and i have listened to you through all about the three days of consultation which was really for me a game changer and also today to promote health literacy and education and the last one is power ahead build back better based on the experience from the covet 19 pandemic and the need to build preparedness and social security we need to be prepared for the next pandemic but even more important we need to change so that people are living with diabetes and are at risk for diabetes can thrive and live healthy and prosperous life so thank you so much for being part of this journey being part of this solution seeking endeavor thank you so much back to the cold chairs i guess thank you uh thank you dr mickelson and uh thank you dr axelrod for your thoughts and uh for creating and leading the global diabetes compact along with people living with diabetes i’d now like to call upon our three keynote listeners for today um in order sana ajmal from meeting pakistan followed by lyon osirenko from the idf nigeria and minister clara morin dalcal from the um she’s the minister of health from the metis national council over to you sana thank you yara and your poor nwho for giving me this chance um it is such an honor to be here today and wow how does one go after vendee my heartfelt congratulations to w.h.o and to bendestine for the incredible work that they have done ramadan kareem to all muslims and a very happy diversity to renzo so today is definitely a day of celebration and let me be clear why today is not a day of celebration because insulin was discovered hundred years ago because when we think about that it becomes a day of painful reflection hundreds of thousands of us around the world still cannot access it today is a day of celebration because of who’s commitment to change the way we have been handling diabetes healthcare today’s the day when after a decade of tireless advocacy i see an important stakeholder the who moving away from tokenism and listening to our lived experience and promising purposeful inclusive transformative and proactive engagement so what are the key takeaways uh for me from today’s discussion i i’ll begin with what i’ve seen in pakistan so pakistan is a country where the gap between those who can afford and those who cannot is huge starting with loss of a workday to visit a public sector hospital every month to the travel costs involved to the lack of trained healthcare professionals and to the out-of-pocket costs for insulin and trust steps being unaffordable for so many or you may be just required to make do with whatever insulin is available for free whether it suits you or not do there being no resources in the multiple languages spoken in the country to the complete lack of empathy and awareness where people who are poverty-stricken even find it hard to get charitable donations because of the concept that diabetes is self-inflicted or that diabetes care is a person’s own responsibility let me remind you pakistan is one of the top 10 countries where charity takes place these are only some of the huge gaps that need filling but we’re trying to bring a change through use of technology so one can’t even begin to understand the widespread issues a landscape of which was very beautifully painted by crystal by only looking at the high level data alone it’s so important to put the daytime perspective of the lived experience to actually hear the data speak and i’m so sure that every country has its own different challenges but there’s a lot in common too and only with a diverse but united group of people living with diabetes from around the world as partners can we actually address these challenges globally as well as locally so changing the narrative is the key takeaway because that changes everything valuing people with diabetes as experts and not only seeing them as patients starting with involving us in decisions about our care in co-design development implementation and governance to ensure equitable access equitable and accessible care uh this is the game changer who can put the needs of people living with diabetes better at the decision table than people living with diabetes themselves and not only this but speaking about us and making sure that all materials and communication are in the right non-discriminatory non-judgmental language so to end it up advocacy has its exhaustion effect and we were getting impatient of waiting who has promised us a game changer and re-energized us so thank you so much everyone thank you very much thank you very much i don’t hate you this is amazing and i want to say thank you i feel honored i feel blessed that in my lifetime i see a change a change happened while i’m still alive not just my children’s time because coming from where the country where i am in nigeria this is uh it’s a miracle it’s a prayer answer to a lot of us uh listening to all the the head of states the ministers speak today i am overwhelmed and um and i’m i feel and i strongly feel that 2021 is a year of a positive change in the lives of persons living with diabetes from what i saw and what i had and what we have agreed from all the discussion that’s happened here today and all the all the uh presentation done from the first segment to this very second segment i i feel that today is a is a history making day because we all have become one family we have one common problem which is diabetes and we have agreed today to make a positive change and it’s very simple and we decided to change the narrative getting the the people who are living with diabetes like me who as they were they would type two gestational first and then change it uh we all have spoken and we all have contributed so much but no one spoke about gestation which is really the real reason why most of us are here um a gestational diabetes really need to be captured along with all the solution that is being provided here primary health care primary health care is what all the leaders spoke about that’s where they started from that’s where the change started from primary health care is what most people are suggesting and that is what i think is i’m also suggesting i’m going to take back to my government that we should uh we should insist that this global diabetes company that we have launched today is carried from we truly through the the eye and the voice of those living with it and i want to thank everyone the first partner the second planet also the governance everyone contributed so much and i want to also advise that but you have to look into those who already have the success rates like in in singapore in uh in uk uh in in in kenya they’ve already implemented some successful method that maybe we copy that and and and and um users as they as a guide to the rest of countries who have not started anything yet but in my country my president is not here we are 150 million i i i know nigerians are all over the world and we are affected by diabetes many i lost quite a number of persons in this country and all due to diabetes so i would want and i will plead that this particular this uh diabetes comfort that will launch today is enforced on on government i don’t know not by force but it’s mutual that it is it is embraced by government who are agreed and monitored not just like we did with the hiv we wouldn’t want it to go that way the hiv was really mismanaged by some developing countries but like mine i know the success rate is good but it could have been better diabetes shouldn’t be around our wage like we have started well involving places living with it there should be monitored it should be guided it should be they should be accountability by the government so i will want to say thank you to who and when they er been there dr vida you are amazing you you make me feel feel blessed each time i hear you talk thank you very much everyone thank you jack thank you my family thank you my family because we i feel we are related i feel connected i feel blessed and i want to thank all the government who have already implemented something uh on ground that i would i am making a plea that i’m going to make a positive change towards my government in doing something about diabetes whether they like it or not because i have you on my back thank you very much god bless you greetings i don’t know if you can hear me or not you can thank you okay thank you uh thank you for the opportunity uh to provide some remarks with the representatives of pakistan and nigeria at this global diabetes summit i’d also like to join with others in applauding the world health organization and the government of canada for organizing and co-hosting this conference on the 100th anniversary of the discovery of insulin here in canada i’m speaking on behalf of the metis national council as my capacity as minister of health of the metis national council let me take a moment to provide a brief background on the metis people in canada the metis nation are a distinct indigenous people as defined in section 35 of the canadian constitution the metis nation emerged with its own collective identity language culture way of life and self-government in the historic northwest prior to canada’s westward expansion following confederation today there are more than 420 thousand metis people in canada regarding takeaways from here we have heard in this segment many experiences from different individuals living with diabetes in different parts of the world meaningful engagement with communities and education is fundamental to reduce diabetes in the world it should start with a better understanding and respect of people’s self-determination culture history and governance loyal daniels of the national indigenous diabetes association here in canada talked about the need to help our young people both pre-diabetic and diabetic and that education is so important i couldn’t agree more because they are our future generations and we have to do everything we can to ensure they are aware of how to help avoid diabetes and we need different tools to reach our young people young canadians have a 50 50 chance of developing diabetes and you can be assured that the percentage of young indigenous people is even higher that has to be our priority in addition collaborative and creative partnerships with communities are needed to identify respectful and culturally competent research strategies and health interventions to decrease existing diabetes rates among diverse populations around the world diabetes and chronic diseases share common risk factors and conditions including economic and physical conditions that influence and shape behavior in terms of engagement and experience metis people believe that in order to properly meet their unique health care needs major structural changes must be made to the design and delivery of existing health care approaches increased metis nation involvement in the health and wellness area will ensure the provisions of culturally grounded and holistic well-being approaches to health thus all parties believe that a forward-looking agenda on prevention and health promotion has the potential to achieve long-term transformative changes to the health conditions of metis finally i thank you again for the opportunity to participate in this event medici and thank you thank you to our wonderful keynote speakers for your closing remarks i want to invite heather kova back up here earlier we had some technical difficulties and heather is going to give her recap on the people living with diabetes informal consultation from last month heather hello yeah four okay thank you uh my connection uh i had some connectivity challenges there but i’m back now i thank you for this opportunity um i was part of the uh consultation for people living debaters and i am glad uh to say that um it was a very uh deep and insightful um conference we had so many discussions and i am happy that most of the things that we discussed and agreed on were also echoed in this discussion today just a few takeaways uh we discussed the issue of the availability and affordability of insulin and we noted that insulin is not available to most people with type 1 diabetes as well as to over half of the people typed with their who need it so the resolution was that there is still a lot of um advocacy that needs to be done in that area we need to make sure that um issues of affordability and accessibility are addressed and that issues of research and innovation are also uh addressed and discussed we also had issues to do with discrimination and this discrimination the emphasis was on type 2 diabetes because most of the time type 2 diabetes is the cause of fetus are related to lifestyle choices so that is where the root of the discrimination and we agreed that most um healthcare practitioners and even journalists the media and the general public there’s still a lot of education that need to go around for us to be able to address that stigma and discrimination and then um also issues to do with the type of advocacy strategies that we need to employ in order to keep speaking for people with diabetes and high level advocacy was highly encouraged the type of advocacy where people with diabetes engage policy makers engage government officials and advocate on on high levels uh so most of all i would like to thank the wu for giving us the platform people living diabetes it is good that we can come together and be able to to have a say and to have an influence on the decisions that affect us and i can say that previously we were always on the menu we were always discussed but now we are also on the table attacking of that menu so i thank the who and i hope that they will keep providing platforms for people with diabetes to be able to come up together and to discuss issues that affect them thank you very much thank you so much heather for sharing your perspective from last month’s consultation everyone i hope that you’ve been inspired by today’s conversations and by all of our speakers to all of our speakers thank you so much for participating today all of you have illustrated beautifully why the lived experiences of people with diabetes matter for the global diabetes compact and this is a tremendous initiative to improve access and care for people with diabetes around the globe some of the takeaways that i’ve gotten from today’s discussions include of course not tokenizing people with diabetes going from mere storytelling to including us in the formation of regional specific frameworks addressing stigma especially against people with type 2 diabetes and also addressing the use of language as renza mentioned earlier the importance of widening access to diabetes education and meeting people with limited resources where they are as personal mentioned earlier and i would also like to echo something that lao mentioned in our first panel today which is why it’s important to make sure that first nation and indigenous individuals individuals with diabetes who are often overlooked in discussions about diabetes to be represented well in this compact so as we move forward with next steps we also have to remember that indigenous people really need that kind of representation in this group as well as providing advocacy training for people living with diabetes there are so many advocates whether online or offline who are very interested in sharing their voices but need help on how to do that and we can give that kind of training to make sure that they can have an impact at all levels of society finally alongside nepur it has been a pleasure and an honor to co-chair this event i’m very much looking forward to the action and next steps that the global compact diabetes compact takes and i will kick it over to my co my co-chair nipple for for the last remarks thanks tiara in my really quick thank you list i’d like to thank the government of canada and the world health organization for inviting us to co-create the global diabetes compact we’re going to be the change together i echo johanna when she said diabetes is leading the way again i’d like to thank my wonderful co-host today tiara from across the globe and thank you to all our speakers and all our participants your passion really shown through in in what you spoke thank you to all our viewers as well for joining this segment and a quick reminder the third segment for people living with diabetes which is 100 years of insulin celebrating its impact on our lives organized by the university of toronto can be accessed through the registration link in the description box of this youtube channel thank you once again and have a good day ahead you