EADSG 2018 (East African Diabetes Study Group Annual Congress)

March 10-14; Kigali, Rwanda; Day #1 Full Commentary – Draft

Executive Highlights

  • On our first day in Kigali for the Congress, we visited the Rwandan Diabetes Association’s (RDA) office to speak with Director Mr. Crispin Gishoma. Mr. Gishoma gave us the rundown on the dire state of diabetes in Rwanda, the economics of care in the interesting universal health coverage system, challenges to optimal diabetes care, and more. One of RDA’s chief roles is to provide test strips to type 1s, while insulin is generally apportioned by the government.
  • Before the conference kicked off, Team Novo Nordisk CEO and Team Type 1 Foundation President Mr. Phil Southerland led type 1 youth from all over East Africa on an inspiring two-mile bike ride. He followed this act with a remarkably inspiring speech at the opening ceremony, where he emphasized that all people with type 1 diabetes are champions and called for the establishment of a sustainable, global fund for type 1 diabetes by 2021 (quickly followed by one for type 2).
  • We’re closely following a developing story: Since December, RDA hasn’t been able to provide strips for its youth. Through extensive negotiations with engaged representatives from the Rwandan Ministry of Health, Mr. Gishoma, Mr. Southerland, and others believe the state may be close to adding testing supplies to its formulary for type 1s – a move that would literally save lives. Stay tuned.
  • We attended an insulin therapy workshop, where speakers and attendees discussed African diabetes epidemiology, insulin storage and syringe reuse, and even DIY hybrid closed loop. We also had a most interesting interview with Tanzania Diabetes Association Chairman Dr. Andrew Swai on investment in diabetes vs. infectious diseases, his recollection of Tanzania a number of years ago when culture wasn’t so diabetes-promoting, and community-based screening and prevention.

Greetings from Kigali, the capital city of Rwanda! We’re on the ground at the fourth annual East African Diabetes Study Group, where we’re trying to soak up as much as we possibly can about diabetes and diabetes care/prevention in this developing country: How big is the diabetes burden? What are healthcare and access like? What are challenges to optimal care and prevention? What unique cultural factors contribute to the epidemic? What sort of philanthropic, public, and private investment is needed to improve the situation here? To procure this information, we’re leaving no stone unturned, visiting sites, speaking with patients and local providers, interviewing KOLs from various East African countries, and of course, sitting in on the conference talks and symposia.

Since we’ve arrived, a fascinating and potentially game-changing narrative is unfolding in front of our eyes. As it currently stands, Rwandan children with type 1 diabetes can procure insulin through the state’s universal health insurance, but strips are not provided. The Rwandan Diabetes Association (RDA), an extraordinary organization run by the extraordinary Mr. Crispin Gishoma, has carried the burden of supplying testing supplies to Rwanda’s type 1 youth for a number of years. However, since donors ran out of funds in December, the RDA has been left without strips, and Rwanda’s type 1 children are in danger. Rwanda’s Ministry of Health has a strong presence at the meeting, and we understand that after several lengthy conversations with stakeholders, they are intent on adding strips to the formulary for type 1s.

This is very much a developing story. This evening, we left the convention center with the ball in the court of potential industry partners, who are exploring the feasibility of supplying strips at a cost acceptable to the Ministry, and the Ministry, who is further discussing internally. Tomorrow might yield a very exciting and precedent-setting decision – we so hope it does, as children’s lives depend on it.

This is a different sort of coverage from what you’re used to … let us know what you think!

Detailed Discussion and Commentary

Rwanda Diabetes Association Headquarters Visit

In our first excursion after getting settled in Kigali, we ventured to the Rwanda Diabetes Association (RDA) headquarters, a small facility on the side of a bustling street, to meet with Director Mr. Crispin Gishoma. He was gracious enough to show us around, explaining that RDA houses two physicians, two lab techs, management offices, and a pharmacy – mostly insulin in a fridge, some strips, BGMs, lancets, needles, and syringes.

Mr. Gishoma’s father François founded the Association in 1997 after a turbulent diagnosis with type 2 diabetes. While François was able to cover the major costs of care – including receiving a kidney from Crispin in a procedure in Europe – and is doing well today, he realized that most Rwandans don’t have the same economic status. We’ll dive more into the extent of poverty and need in this region below, but for now, keep in mind that 2.5 years of dialysis and the transplant set the elder Gishoma back 1.8 million Rwandan Francs (nearly $6,000, according to fxtop). 

Crispin (henceforth referred to as “Mr. Gishoma”) is a remarkable man who, although he doesn’t himself have diabetes, took over the organization in 2012 and has made it his mission to support the Rwandan diabetes population the best he can with what limited resources he has at his disposal. The burden as a percentage of the overall population is actually quite low compared to the US and other countries, at “just” over 3%, according to RDA. While that equates to almost 360,000 individuals, RDA falls short of being able to reach all of them. Since 2000, the group has seen ~1,540 type 1s (~1,000 currently of an estimated 2,000 in Rwanda – pretty solid penetration), but only ~8,700 type 2s (~2% of the total type 2 population, by our math). Even still, Mr. Gishoma and his 17 colleagues struggle to deliver supplies and education to the patients fortunate enough to come their way.

Below, read about the RDA’s dire test strip shortage for type 1s, standards and economics of healthcare in the state, societal challenges of living with diabetes, the provider perspective, and RDA’s need for software infrastructure.

Shortage of Test Strips

RDA is the lone supplier of test strips in the country for people with type 1 diabetes. Since previous funding sources ran dry in December over what we understand to be a communication mix-up, RDA needs $250,000 to supply ~1.1 million test strips for the type 1 lives it cares for this year. The math comes out to ~1,000 type 1s testing three times per day and assumes ~$0.23/strip.

UPDATE: Mr. Phil Southerland told us that the country’s Ministry of Health has agreed to supply strips, but that might take ~six months to rev up. He also noted a distributor who could offer strips at $0.05 a piece; theoretically, RDA could need an investment as small as $30,000.

At the moment, kids with type 1 either have no means of checking their blood glucose or are rationing supplies. And while Mr. Gishoma has approached Partners in Health, Life for a Child, governments, pharmaceutical companies, he has yet to secure any funding … and he emphasized that help is needed right now.

Type 1s in Rwanda are trained to be products of routine: eat the same thing every day, give the same two doses of premixed insulin in the morning and at night, keep activity levels somewhat constant every day, and test blood sugars ~three times every day. Screw up one cog in that delicate equilibrium, and as you can imagine, problems arise quickly. Troubles are amplified by widespread food insecurity – some patients lack carbohydrate to rescue a symptomatic low or even to prevent a non-symptomatic low if they are being cautious.

Access is better for type 2s at the moment, both because most don’t need to test as frequently and because Insulin zum Leben – the German Diabetes Association-run “Insulin for Life” – continues to provide for them.

Similarly, insulin is much easier to come by for patients who need it (relative to strips). RDA has a stockpile of more than 7,000 vials under (refrigerated) lock and key at its headquarters, provided by IDF’s Life for a Child. Even in times when RDA’s stores are depleted, patients can procure from public hospitals for a co-pay of ~$7.

Fascinatingly, RDA has a policy of providing supplies and medication for all children, regardless of means. People whose families could afford insulin and strips are still offered them. Why? Mr. Gishoma believes that kids from different socioeconomic backgrounds have a lot to learn from each other, and offering support to everyone ensures that they meet and exchange ideas. He told the story of a child with type 1 who came from a wealthy family. His father was putting too much pressure on him to manage his diabetes “perfectly,” and the kid couldn’t handle it. During a diabetes camp, he interacted with less well-off kids, and was afforded the chance to understand how lucky he was to have a father who cares and follows his blood glucose. “If professionals tried telling him that he was lucky, he would think we were lying.” We didn’t hear a counter story of a poorer child benefitting from meeting a wealthier child, but we could see lifelong friendships forged where the less wealthy child benefits financially. Since there is a shortage of strips and medication, the strategy of giving to the rich and the poor could be controversial, but Mr. Gishoma is convinced that the pan-economic peer support is rationale enough.

Economics of Diabetes Care in Rwanda

Rwanda is fairly unique amongst its neighboring countries in that it has universal healthcare run through the Ministry of Health – according to a New York Times article from 2014, premiums are paid on a sliding scale such that the wealthiest pay the most and the poorest don’t pay at all. Mr. Gishoma told us that patients typically pay ~$3.50 per year for health insurance, which is a fairly large lift for many. Within this reimbursement structure, co-pay for covered drugs is ~10%. While a vial of insulin costs the system just over $80, the patient covers $8. Considering that the $3 buy-in is a heavy lift for many, the cost for insulin is highly significant. Fortunately, RDA is able to supply insulin for most people who see them – that is, an estimated 1,000 type 1s and 200 type 2s.

Common drugs for type 2s are unsurprisingly those that have gone generic – namely metformin and sulfonylureas. Despite the low cost, at least compared to newer brand-name type 2 medications, Mr. Gishoma pointed out that expenditure adds up. It’s not just the fact that an agent like metformin is basically taken for a lifetime (the main source of spend), but he told us that many patients can’t afford the ~$1.75 average transportation cost to get them to the supplying hospitals over a sustained period. Needless to say, both RDA management and doctors expressed great excitement at the prospect of DPP-4 inhibitors, SGLT-2 inhibitors, and GLP-1 agonists going off-patent within the next five years.

Following a drawn-out advocacy campaign spearheaded by RDA, district hospitals finally implemented A1c testing a few months ago. In private hospitals, the cost to the patient is ~$14 – the Ministry of Health hospitals haven’t yet set a price, but Mr. Gishoma informed us that it will be covered by insurance. This is obviously a huge win, as would be the next step of setting up prediabetes screening posts across the country in the interest of prevention.

Mr. Gishoma couldn’t tell us exactly the extent of the complication burden in Rwanda, but he is very worried about the coming load. Prior to 2005, healthcare was so poor in the country that a diagnosis with diabetes typically meant that the individual would die in the next couple years. Now that care has improved, people are going to live longer, but the complications will be many. This will be extremely problematic, he explained, as Rwanda’s health system is not prepared to tackle complications yet. It is a precarious transition period that will leave many facing the macro and microvascular consequences of diabetes. At this point, Mr. Gishoma said that the most common complications seen in the RDA clinic are neuropathy (leading to leg amputations) and retinopathy. He reported that kidney complications are actually quite rare, but dialysis is offered at six centers in all of Rwanda for ~$1,400 a month – all out of pocket. In Mr. Gishoma’s solemn words, “for someone who comes to see me with kidney issues, I have nothing to say.”

On the plus side, the government is scaling up services for diabetes in health centers, focusing on increasing access and quality of care. Everyone we interacted with spoke extremely highly of Rwandan president Mr. Paul Kagame and his involvement. Said one young RDA doctor from Burundi, “the best part about Rwanda is anything is possible with the government.” Dr. Gishoma added: “Whenever [Kagame’s] involved in something, things change. Now he’s involved in NCDs. I expect much from that. I have high expectations. Now he’s involved. Whenever he’s involved, things move faster. We think we have a chance. During campaigns, he’s now supporting campaigns on prevention.”

Challenges to Optimal Diabetes Management

Many of the barriers to optimal diabetes care in Rwanda are similar to those in the developed world (to a greater extent), though some are fairly unique.

We must say, we heard some absolute horror stories related to stigma and discrimination of people living with diabetes in this country –stories that could bring tears to anyone’s eyes. RDA interns relayed a gutting story of a little girl living in the countryside whose mother passed away. Her mother had been helping her procure supplies and manage her diabetes, and upon her passing, her father chased his daughter out of town. She eventually made it to Kigali, where she showed up to the RDA clinic for help. Mr. Phil Southerland told us similar stories of families driving their children with type 1 diabetes out to the middle of the forest and leaving them there to die. It’s easy to view these parents as villains, but think about their options: they can pour all of their resources into one child while neglecting the others, or they can provide for the others and let the “burdensome one” die. It’s an even more twisted version of the classic “trolley problem” (would you push someone in front of a train if it meant saving five people who were further along the tracks?).

In a more moderate version of entrenched stigma, Mr. Gishoma explained, “being ill is viewed, casually speaking, as ‘being weak.’ A man would not beg for help and be weak. Diabetes is not just a disease, it’s more than that” (this story resonated a lot more than the first two as something that could be seen in every culture). Stigma is a serious obstacle to optimal diabetes management everywhere, and throwing resource scarcity into the equation only makes it worse.

Another huge issue faced by many Rwandans, but particularly detrimental for people with insulin-dependent diabetes, is food insecurity. Mr. Gishoma shared that the malnutrition rate for children under five years of age is a whopping 40% (a 2016 World Food Programme report clarifies that 40% applied to rural areas, while it was 27% in urban areas). Kids generally take one shot of insulin in the morning and one at night, and – on a good day – are able to test their blood sugar three times. Without being able to make adjustments to insulin throughout the day, food and exercise are likely the main tools to bring blood glucose back in range. It’s difficult enough to keep glucose in range using only three individual points every day, now amplify that challenge by removing foods that could quickly raise blood sugar. We didn’t find stats on preventable hypoglycemia deaths, but the scenario is a recipe for disaster. We wonder how easy it would be, in addition to supplying additional strips, ensuring that every person on insulin has easy access to glucose tabs…

Lastly, we were surprised to hear Mr. Gishoma estimate that “more than 50 people with diabetes in a room of 100 would raise their hands if you asked how many go to traditional healers.” He continued: “Once it becomes a huge burden for the family, they look for other ways to deal with it. Once they come back to the clinic, if they’re lucky to come back, sometimes they already have really bad complications.” Notably, they seek traditional help on top of whatever the RDA can offer them. Mr. Gishoma said the healers provide a liquid to drink, but didn’t know what the ingredients are specifically. In the interest of innocent until proven guilty, we’re not yet ready to completely write off the benefits of a healer’s elixir, but we are skeptical, especially since any resources given to the healer can’t be allotted to proven remedies.

Do (the Very Few) Providers in Rwanda Feel More Successful than Those in the Developed World?

The clinic at RDA itself has two doctors, five nurses, and two lab techs. Neither of the doctors are endocrinologists, though they still specialize in diabetes. According to Mr. Gishoma, there are two endocrinologists-in-training in Rwanda. For fully-licensed doctors, a quick search turned up just Dr. Charlotte Bavuma, an endo practicing in Kigali (she also naturally heads up the local organizing committee for the EADSG meeting). Both of the doctors-in-training work for the government and were trained in Europe, the US, and Kenya. There are med schools in Rwanda, but Mr. Gishoma said they don’t have programs for diabetes – “who is going to train them?” This endocrinologist:patient ratio needs to go up (as a side note, we learned that the ratio is close to ~1:100 in Guinea – 64 healthcare providers working on diabetes to 6,200 adults with diabetes). The government needs to establish training programs in a hurry if it wants to give its people a fighting chance.

We couldn’t help but notice a stark contrast between an RDA doctor’s demeanor and that of most of the endos we talk to in the US and EU. In response to us asking how successful he feels on a scale of one to ten, he said: “I see 5-10 patients per day. I feel very successful. I used to work in a district hospital, where it was see patients for two minutes each, keep them coming. Here, I get to help them, and I get to know them, get to know their family, and I get to see the difference I make. It’s rewarding.” This is a world away from endos in resource-rich nations who often report being overworked, underpaid, and feeling like they don’t have the tools they need to help people – yet their toolbox includes drugs that are glycemic-dependent and cardioprotective, apps, remote monitoring, and smart insulin delivery.

To us, this is a classic example of the “last mile problem”: Rwandan HCPs are able to literally save lives by bringing patients from nothing to insulin and three strips per day, and the patients are incredibly grateful. In countries where supplies and medications are easily accessed by most, it’s a much more difficult a task to improve blood sugar and improve quality of life than it is to give someone the tools to stay alive. This is not to trivialize the amazing work that providers do around the world – they are true heroes – but it is easier to see how doctors in Rwanda would feel more successful despite more limited toolboxes. We wonder how care will change when those glycemic-dependent drugs start to go generic.

No Infrastructure In Place to Track Diabetes in Rwanda

A far too common answer from Mr. Gishoma during our interview was “I don’t know.”

“I don’t know” how many people have diabetes-related complications and what the prevalence of each is, how many type 1s there are total in Rwanda, how many type 2s there still are in Rwanda, how many type 2s in Rwanda are on insulin and other medications (metformin, SUs)…how many people who have been through the clinic are still alive. This is not for a lack of curiosity or desire to know, but RDA lacks the software infrastructure necessary to track much of this data – so they don’t know. Type 1s are visited quarterly and pretty well-tracked in a spreadsheet, but type 2s are a different story; Mr. Gishoma pointed out three meter-high stacks of dusty manila files, each containing information on a single patient. Very little of the data is up to date, and none of it is stored on a computer. In the interest of demonstrating strong ROI from outside investment, the sooner a database is set up, the better. Mr. Gishoma agrees, indicating that it is a top priority for him (though it is hard to rationalize prioritizing data aggregation over directly saving lives now).

Opening Ceremony

Team Novo Nordisk CEO Phil Southerland Inspires Hope, Calls for Sustainable, Global Fund for Diabetes by 2021

In an inspiring talk to commence the opening ceremony, Team Novo Nordisk CEO Mr. Phil Southerland shared his moonshot dream: to establish a sustainable, global fund to give everyone with type 1 diabetes in the world the basic tools they need by the year 2021. “Let’s say, by 2021, the 100th anniversary of insulin’s discovery, that we won’t have to talk about access anymore. It’s been done in HIV, malaria, TB, and we’ve almost cured polio – we can do it.” He called on everyone in the room to write to people who can help – be it the White House, the Gates Foundation, or anyone else – join together, and make a lot of noise. Type 1 is the right place to start, he believes, because people are dying from a lack of insulin right now. By starting with them, the Fund could save lives immediately, and also serve as a sort of “innovation sandbox” for governments dipping their toes into diabetes care before taking on the much more daunting task of providing for the much larger type 2 population. We’re curious how big the fund would have to be to cover the roughly-estimated ~4 million type 1s in the world. How about if type 2s are included? Whatever it is, even if greater than the $15 billion apportioned by George W. Bush to combat AIDS in 2003, it’s surely less than the $1.3 trillion spent on diabetes in 2015 (direct + indirect costs). And it’s definitely smaller than the projected 2030 costs of $2.1-$2.5 trillion. This investment needs to happen. A strips and insulin investment in type 2 is needed, but in our minds a sustainable investment would more closely follow the Cities Changing Diabetes blueprint: Healthier foods, safer and more ample exercise options, less stress, etc. We wonder if the small country of Rwanda and its ~2,000 type 1s and ~358,000 type 2s could serve as a case study. If donors are hard to come by, what if a miniature test-fund were set up here, outcomes were tracked meticulously, and Rwanda demonstrated a serious ROI? We agree completely that this vision has to be the goal.

  • Mr. Southerland also had a smaller dream: To have type 1s from Rwanda attend a Team Novo Nordisk biking camp and return home “as ambassadors, as heroes, and heroes make hope.” Heroes may make hope, but champions (every child with diabetes) can’t become heroes, he pointed out, if they don’t have access. Team Novo Nordisk is full of heroes, and Mr. Southerland wouldn’t have it any other way: “If you offered me a cure today, I wouldn’t take it. That’s the best part about me. Diabetes only chooses the champions…Men with diabetes in your countries, they’re my brothers. Women with diabetes in your countries, they’re my sisters. And family fights for each other.”
  • As background, meeting RDA founder Mr. François Gishoma at IDF 2009 in Montreal was where it all began for Mr. Southerland. He asked Mr. Gishoma, a type 1 himself, if he and six teammates could bring test supplies to Kigali when they arrived for the Tour du Rwanda race. Later that year, they brought 400 meters and 37,000 strips – enough to cover every type 1 in the country – in their bike bags. He recalled children being delighted to have a toy for the first time in the BGM, and parents were crying tears of joy because they knew their kids had a chance to live longer. In 2011, the team brought 250,000 more strips. Since then, the Team Type 1 Foundation has been the only provider of strips for type 1s in the country, and the number of type 1 patients has grown ~4-5x from 400 in 2010, by RDA’s estimate. Even so, Mr. Southerland stressed that it’s not enough because it’s not sustainable (and we would add, limited to type 1s in just one country).

Rwanda State Minister for Public and Primary Health Care: “Government Support? You Have It.”

State Minister for Public and Primary Health Care Dr. Patrick Ndimubanzi reassured Mr. Southerland and EADSG faculty that they have the full support of the government – “you have everything you need.” The rhetoric in the remainder of the Minister’s talk was equally encouraging, as he touched on the importance of sustainable diabetes care, prevention, and integrated care “at the very lowest levels of the health care pyramid.” From what we understand, his presence and strong words of commitment at the ceremony, on top of Dr. Gashumba’s appearance at the bike ride (see below), are two of the strongest indicators that the government is stepping up to better provide for its people with diabetes. As it stands now, insulin is on the national insurance formulary, but strips are notably excluded – that’s where RDA adds the most value. This may be changing, and soon. We’ve been hearing talk of extensive meetings of up to 2.5 hours between non-profit stakeholders, Health Ministry representatives, and industry, and it sounds like all parties want to have strips on the formulary and a supplier chosen by the end of the Congress! This could be a HUGE change in the tide for type 1 diabetes in Rwanda, even setting the precedent for Africa at large. Our fingers are tightly crossed that a deal can be accomplished. Our hats go off to the East African Diabetes Study Group, whose organizing committee (especially Drs. Kaushik Ramaiya and Silver Bahendeka) strongly pushed for the bike ride with Team Novo Nordisk, potentially bringing diabetes to the top of the Ministry of Health’s agenda (and giving the participants an experience they won’t soon forget).

Insulin Therapy Workshop

Africa Diabetes Epidemiology: 15.5M Adults Diagnosed, but $3.3B Spend in 2017: ~$213/Person vs. $11,600/Person in US

Tanzania Diabetes Association Chairman Prof. Andrew Swai gave an overview of diabetes epidemiology in Africa, highlighting impaired ability of constituent countries to invest in prevention and treatment. IDF estimates that there are 15.5 million adults with diabetes in Africa ages 20-79 years-old; a whopping ~69% are undiagnosed. By 2045, the number living with diabetes is expected to reach 40.7 million, more than doubling. Among East African nations, estimated 2017 prevalence ranged from 1.4% (Uganda) to 6.6% (South Sudan). Diabetes is the attributed cause for 6% of all mortality in Africa, and 77% of all deaths in people under 60 years are diabetes-related (the highest proportion in the world). Mean expenditure per person with diabetes in many countries is remarkably low, up to ~$150 in Kenya, and down to ~$44 in Burundi. According to Prof. Swai, Tanzania spends 5% of its GDP on healthcare, or $50 per person per year. Compare that to ~$9,400 per person per year – ~190x higher investment – in the US in 2014. The whole of the African diabetes population spent just $3.3 billion on healthcare, the lowest from all regions, in 2017 (<0.5% of worldwide diabetes-related expenditures for ~4% of global diabetes prevalence), while the US alone spent $348 billion on its 30 million people (48% of diabetes-related expenditures for ~7% of prevalence). Per person, that’s a disparity of ~$213 vs. ~$11,600.

  • IDF doesn’t break out this data, but our bet is that most of the spend in the US is on costly complications, whereas we don’t believe many African nations (if Rwanda is any indication) have adequate infrastructure to offer this expensive care. Here arises a fundamental barrier to investment: If a country isn’t directly incurring the astronomical costs of diabetes complications, incentives to pour money into prevention are not so readily apparent. The African Union may be able to save a portion of its $3.3 billion diabetes spend next year by investing in access to healthy foods, building cities to be safer for exercise, and tools and medication to manage existing diabetes, but those input costs are surely much greater than $3.3 billion. A more adequate characterization of indirect costs (a recent study says $20 billion total in Sub-Saharan Africa in 2015) and a calculation of ROI over time – constructing sidewalks alongside roads could cut down on costs for a number of years – would make for a more attractive investment environment.
  • Adding fuel to the fire is an interesting analysis sourced from the international Drug Price Indicator Guide showing that from 2003-2014, a 10-ml vial of U100 insulin cost the least (median) in upper middle-income countries (>$4), and much higher in low-income countries (>$10). We’re not sure about the possible causes – perhaps higher distribution costs – but the trend is very concerning.

Workshop Topics Span the Gamut: From Syringe Reuse, Ordering the Correct Needles, to DIY AID in Kenya

Nairobi-based endocrinologist Dr. Mohamed Gaman introduced many in the audience to the concept of automated insulin delivery (showing Beta Bionics’ iLet, Medtronic’s 670G, and UVA’s DiAs systems). He has ~80 patients on pumps in his hospital, and he believes he is a pioneer in the push for DIY closed loop systems in Kenya. After his talk, he told us “I want to figure Nightscout out – it’s a little difficult, but we’ll get it” (write us if you would like to get in contact with him – he’s receptive to outside help!). His hospital also has a unique pump loan program for pregnant women, which three have participated in so far. Given evidence supporting a CGM-first paradigm, we’re a little surprised by the focus on pumps (mostly MiniMed Veo in his practice), but it does sound like Dr. Gaman intends to bring patients straight to automated insulin delivery as soon as he is able to master setup. Still, countless patients in the region might find CGM+MDI more appealing and of course cheaper. We are actively working on figuring out how local KOLs think about these advanced technologies – when do they expect them to enter the region, and what are the main barriers? Stay tuned!

  • After the talk, we chatted with a young Tanzanian med student who has type 1 diabetes and asked him what he thought of the DIY reference. He considers himself lucky to be able to supplement government-supplied test strips with enough so he’s comfortable and to be on a basal-bolus regimen, but his eyes opened wide as he exclaimed: “I’ve never heard of that before. Oh my god, that would be so great.” We hope that he and others like him all over the world can have access to these tools sooner rather than later.
  • One of the most-debated topics during the workshop was whether or not it is okay to use needles more than once – a pertinent question, since a BD rep said that 90% of East Africans use syringes to deliver insulin. Conference Chair Dr. Silver Bahendeka frankly said that his patients do reuse them, even though the research shows they shouldn’t in the interest of sanitation and lipodystrophy avoidance. An RDA nurse told us that patients use each syringe roughly six times, since they are given 10 per month. The conversation went on for a long while, though it was clear throughout that everyone was on the same page: Reuse should be avoided, but in many cases, it cannot because of cost.
  • Another question pertained to how patients should transport and store their insulin once they take it from the hospital. Multiple doctors reported that they’ve seen patients carry vials on ice packs, and then store them in the freezer at home (a clear denaturation hazard). One former Novo Nordisk employee firmly told others that a vial can simply be put in a bag, not exposed to heat and sunlight, and not jerked around. A provider from Uganda jokingly retorted that avoiding jerky movements in a “third-world country” is easier said than done “unless you have a chopper” – commenting on the state of the roads and modes of transport – but the former was more referring to avoiding constant jerky movements when transporting large quantities over long distances. Dr. Lutz Heinemann and colleagues recently blew an alarming whistle on seriously low and variable insulin concentrations in U100 regular and NPH vials – and that was in the US! The former Novo Nordisk employee believed without a doubt that this has to do with cold-chain (which he used to help oversee in India), i.e. before the patient even touches it, but we’d be interested to see a comparison to vial concentrations in East Africa.
  • Delegates even spent considerable time debating simple communication procedures: One told a story of a patient who had been injecting insulin into her belly button because she saw the classic abdomen injection rotation diagram and thought that it was circling the target. A BD rep stressed to hospital and health system admins in the room that “if [they] want the right product, [they] had better know how to ask for it.” She commended the Ethiopian government for ordering the correct syringes each of the past three years. The other entities? One ordered 21G, 1.5” needles – “that’s the size of a nail you use to put shingles on your roof, not something we want in our patients.” Others asked for 29G or 26G needles (not recommended, and not a product BD sells, respectively), and one specified on the order form that “whoever will come with the lowest price will get the supply.”

Roche CDE on Lack of Progress in DM, Clinical Inertia, Disproportionate T1 Focus, Early Education

Roche’s Ms. Kimberley Graham, a lightning rod of a speaker with deep-running passion and expertise, called attention to a number of areas where the diabetes field is not succeeding. In just 15 minutes, she tackled a lack of progress in diabetes outcomes, lack of proper information dissemination, clinical inertia, a lack of focus on type 2, and more.

  • Ms. Graham highlighted that poor outcomes (and high A1c) have persisted at the population level despite new therapy classes (like SGLT-2s and GLP-1s). She alluded to the irony that people in the diabetes field continue to gather at conferences and scientific meetings to discuss what’s not working and why, while expressing excitement for what’s coming next. While we appreciate her frustration – reminiscent of type 1s who have been told for years that “a cure will definitely come in the next 10 years” – we don’t really agree with Ms. Graham. Firstly, SGLT-2 inhibitors and GLP-1 agonists are still relatively new classes of drugs, with extremely low penetration relative to their potential impact. To think they would have made a dent in population-level diabetes outcomes already, particularly in the developing world, is overly optimistic – once they go generic and are options for a wider population for longer periods of time, that’s when we may see them begin to bend curves. And what about prophylactic applications? We also think Mr. Graham overestimated the number in the field who view these therapies as silver bullets, which is surely low considering the well-recognized complexity of diabetes etiology. Where we do agree with her 100% is that the lavishness of diabetes events (the expensive dinner parties, “swag bags,” entertainment, exhibits) could be better spent with a more direct investment in people with diabetes. Sure, the meetings have to have sheen to attract high-profile guests, but imagine the impact if those hundreds of thousands of dollars went to providing basic supplies to people in need? What if, instead of the arms race towards who can have the biggest, most eye-catching booth with the most moving parts, companies agreed to take out a small area with pamphlets, reps, and a sign that reads in plain black and white text: “The money that would’ve gone into this booth is being used to allow XXX people with diabetes in a developing country wear CGM for a year.”
  • “I have type 1, and I love hearing from people with type 1, but 95% of people with diabetes are type 2. I wish we had someone with type 2 come up and share their struggles, as opposed to people like us who get diagnosed and immediately get put on the optimal treatment.” Again, we disagree with part of Ms. Graham’s sentiment here – there are vast numbers of people with type 1 who don’t receive best practice diabetes care, and who struggle to access essential medicines (so “immediately” getting put on “optimal treatment” seems like a stretch). She does make an important point, however, that type 2 diabetes needs much more emphasis and investment. Stigma is a much greater beast in the type 2 world, broadly-speaking, and it precludes people from sharing their stories. It precludes the formation of a real community.
  • Ms. Graham emphasized that we must break down the misconception that insulin initiation signals failure for people with type 2. “From the time of diagnosis, let type 2s know that they will end up on insulin,” she suggested, echoing advice we’ve heard from countless thought leaders. “It’s inevitable, it’s not failure, and it is a brilliant drug. The biggest takeaway here is take away the fear of insulinization.”
  • Ms. Graham pointed to a one-year study from Dr. Bill Polonsky’s group (n=500), presented in 2011, that showed structured testing in type 2s not on insulin to be remarkably useful. Structured testing allowed patients to understand what food and drugs were doing to their blood glucose, which is an important piece of promoting patients’ engagement and self-efficacy. According to Ms. Graham, it is “a huge disservice” if providers hold on to this knowledge without imparting it on patients. She shared another example: “I talked to a patient who was not aware she could increase her own dose without consulting her doctor. This doesn’t work in a world where the typical response from a doctor is ‘come see me in three months.’ We need to hand over the power to the patients and enable them to make changes. How? We need to speak to them in a different manner, that they understand, and meet them where they are.”
    • “Who uses GPS? Once you plug in your destination, you get a plan. But you can’t get a plan without knowing your origin. SMBG is the GPS of diabetes. Without knowing where you are, you can’t have a plan to get to where you want to be.”
  • In a shoutout to outcomes beyond A1c, Ms. Graham characterized hypoglycemia as “the most dangerous glycemic abnormality.” We focus on “highs, because we can fix them with drugs,” Ms. Graham explained, but added, “we need to focus on hypoglycemia.” We certainly agree. With these comments, Ms. Graham touched on a key theme of the conference overall, since test strips and SMBG are pieces of the puzzle when it comes to reducing hypoglycemia and keeping blood glucose in range. Similarly, advanced drugs like SGLT-2s and GLP-1s offer A1c reductions without hypoglycemia risk, and one day these agents will be generic and more accessible around the world.

Preconference Bike Ride with Type 1 Youth to Raise Awareness

The main pre-conference attraction was a Phil Southerland-led, two-mile bike ride from the Kigali Convention Center to Amahoro National stadium for kids with type 1 diabetes. The goals of the event were (i) to raise awareness about type 1 diabetes in the city (everyone wore matching shirts), (ii) motivate the kids to stay active, and (iii) remind them that diabetes doesn’t have to hold them back from doing incredible things in life. Unfortunately, only 20 of the 50 pre-ordered bikes showed up (and one hour late), but there were only a couple of kids left bike-less, and those that did get one wasted no time to begin showing off, seeing who could pop the biggest wheelie. Riding alongside them were Mr. Southerland, Mr. Crispin Gishoma (RDA Director), Uganda’s Dr. Silver Bahendeka (EADSG Chair), Tanzania’s Dr. Kaushik Ramaiya (CEO, Shree Hindu Mandal Hospital), Tanzania Diabetes Association Chairman Prof. Andrew Swai, and importantly, Dr. Diane Gashumba (Rwanda’s Minister of Health). Dr. Gashumba’s presence was quite notable, as it was the biggest presence the government has ever had at an RDA event.

At the end of the ride, there were a number of brief speeches, none more important than Dr. Gashumba’s. She first thanked the organizers for all they are doing to combat diabetes, and reiterated the government’s interest in fighting NCDs: “We want to invest in prevention – it’s cheaper,” she said. “I want to assure you that in Rwanda we are very, very intent to offer the best treatment for people with diabetes. We’ll keep pushing to make sure all you need is available.” According to those who have interacted with the government for quite some time, this was a victorious endorsement, though it sounds like there is still much to be desired from government intervention.

Mr. Southerland was also asked to give an impromptu speech. He congratulated the riders on a job well done – he had to work to keep up with the front of the pack. He pointed out that he lived in their shoes – even though he lives in the “world of CGM” now, he once had to deal with limited strips and sub-optimal insulins. As he found out early on, “it’s all about nutrition and exercise. Ride your bikes.”  The main message was one of devotion: “Just know, that there are caring people here who won’t let you down – Crispin, François [the Director and Founder of the RDA, respectively]. We will come up with plans to help you test your blood glucose, have insulin, and think about diabetes less. You are the future of people with diabetes in this country. If we talk loud, be proud, we can be heard, and we can make noise. The more noise we make, the more that can happen.” Lastly, on a personal note, he invited the kids to reach out to him at any time – “if you have any questions, I’ve made every mistake you can with diabetes. I’m around. Ask.”

The event didn’t exactly go off without a hitch, but smiles all around (a staple, from what we can tell, in Rwanda), encouraging words from the government, and inspiration from a professional cyclist with type 1 – not a bad way to kick off the fourth annual EADSG meeting!

Interviews

Dr. Andrew Swai (Chairman, Tanzania Diabetes Association)

Q: We were very impressed by that India primary care diabetes education group, wouldn’t that be amazing in Tanzania?

Dr. Swai: Yes, we’ll be working with them in Tanzania. They are giving us their curriculum for free. And we are offering it to our physicians for free. People wouldn’t pay to come to it. Their friends in Malaria, HIV, and TB are incentivized, so people in diabetes want to be paid too. We will not do that. We treat people with infectious diseases not because we love them, but because we don’t want them to spread what they have. If you have diabetes, it is just you. With HIV, you will infect others, you will infect children. The treatment we are giving them is more of prevention. That’s the problem with NCDs. And they’re more lifestyle-related. We need to educate them. In the 1980s, type 2 diabetes was truly rare in Tanzania. Over the last 30 years, rates have gone to 9% in rural areas. Many things have changed. When I was young, it was one hour from home to school walking. We used to have tires that we’d push along the road and run after them. When you go back home after school, you had to fetch water, one mile from home. Now, water is there. That’s not a blessing now. There’s no physical activity now. We used to keep cattle in our houses, so we had to walk a kilometer to fetch grass for them, and we’d carry it on our head. For a harvest, plantations were some distance from their home. We’d put it on our head, bring it back home. We don’t do it anymore. People go to the market. We have motorbikes. We use motorbikes for the shortest distances now.

Q: But we’re probably not going to go back to those days, so what do we do now?

Dr. Swai: My children, I used to take them to school in the car every morning. But there were neighbors not as well off as me, and their children walked to school. We must make streets safe so they can walk. In US schools aren’t even safe. The issues of safety on the roads is huge.

Q: Where do we get that investment, to modernize infrastructure and make roads safer? You were telling us yesterday that you were recently on a run, and a bus going the wrong way on the road hit you and you hurt your knee – there were no sidewalks!

Dr. Swai: Right, it would have to be new roads being built, these are the specifications. In rural areas, divide the plots for people to build, ensure there are open spaces for people to play. Even in cities, leave open spaces. People can’t exercise now. With type 2 diabetes, we can do something about it. As part of our program – we’re writing a proposal now – one of things we are writing up is screening. It’s not treatment – if you exercise, it will go away. There are many things you can do about diet. Maize is refined today. Why do that? When I was young, we didn’t refine it, we just ate it. Now you give that to children, they wouldn’t want to eat it. It’s training yourself, you can eat maize with husks. We can say we don’t want machines that remove the husks. The government can implement those measures. There are also cultural issues – if a man is skinny, people think the wife is a bad cook. In the US, soft drinks are not allowed in some schools, and in some places, ads for them are not allowed until the evenings. You can protect the people. Coke is everywhere here. It’s everywhere, even in the schools.

There are things we can do. We plan to implement screening. Then lifestyle measures. If the government treated diabetes with basic drugs, that would cost a quarter of our total administrative budget. That won’t happen. The only option is prevention. We know the things that we can do.

Q: Where will the screening be implemented? In markets?

Dr. Swai: Community health workers. Two people in every village will be responsible. You train them, they go to district hospital for one year. They learn what they should be taught about health. Then they go home, and it’s then their responsibility to take care of people in the village. That includes screening for blood pressure and diabetes. Take blood glucose, blood pressure at least once a year. And we can work through the patients, they are teachers.

For type 1, you have very few. If they were given insurance by the government so they can get insulin, syringes, strips, it would cost 0.05% of Tanzania’s national budget. That’s possible. Children should get all of that for free.

Q: We’ve heard that coverage halts at 25 – is that true? Are there plans to change that?

Dr. Swai: Novo Nordisk, Roche, they give us syringes, lancets, insulin, etc. for free for type 1s up to 18 years. Then, IDF Life for a Child takes over from ages 18-26 or 27. Thereafter, you’re on your own.

Q: That’s horrible, what is the mortality rate after IDF coverage is over?

Dr. Swai: We don’t know. I’d guess nearly one third die after five years.

Q: It’s hard to imagine just throwing your hands up in the air and condemning them to die after giving them life for their whole lives…They’re also at the peak of their productive lives – there’s an economic argument too.

Dr. Swai: Someone has to die. Who dies? You have people with malaria, HIV, TB, pregnant mothers… And you only have so much money. Someone must die. Who do you choose, a kid with HIV or someone with diabetes? You have to pick the one with the infectious disease. It’s not because we love them, it’s for prevention.

Q: [Pause] Wow. Yesterday, you were talking about a community health intervention. Who would spearhead that, the community health workers?

Dr. Swai: Exactly. They must work in a group. For a single person, it won’t work. You need incentives, they have that in a group. That is one aspect. It must be group work with incentives. You can add incentives. If diagnosed with diabetes, you go to national insurance, and you need treatment. Because it’s national insurance, everyone is paying for it. If you get them to exercise, get them off meds, everyone gains. One incentive we’re playing with is to request nationwide insurance to give people lower premiums if they lose weight and reverse their diabetes.

Q: What gives you the most hope?

Dr. Swai: That it can be done. We can motivate people. Behavioral change. I did it myself.

 

-- by Brian Levine and Kelly Close