A Death Sentence — Changing the Outlook of Type 1 in Developing Nations
Beyond Type 1 is a proud sponsor of Marjorie’s Fund, providing funding for their outreach programs in some of the greatest need regions of the world. Our partnership is a central part of the Beyond Type 1 portfolio to provide those living with Type 1 everything they need to manage, live + thrive with Type 1 diabetes today, ensuring a cure tomorrow. To learn more about the work of Beyond Type 1, visit HERE.
Dr. Jason Baker, Assistant Professor of Medicine and Attending Endocrinologist at Cornell Medical College in New York, is a Type 1 diabetes patient and the Founder of Marjorie’s Fund, a non-profit that emphasizes the need for medical care and education for the most neglected populations of Type 1 adolescents and adults. Working within the means of local governments in sub-sahara Africa and parts of Asia, the group teaches skill sets that can be used in local economies so that the individual with Type 1 can “not only survive but thrive.”
With vital supplies like insulin and testing strips being extremely expensive and scarce, Marjorie’s Fund provides classes that help patients understand what their blood glucose levels will do with certain native foods in order to improve their diabetes management. Working with local governments, they continue to raise awareness of the Type 1 population needs in some of the poorest areas of the world. A large part of their work focuses on removing the stigma of Type 1, which is often seen as a death sentence and thus renders the condition as hopeless so care needless.
As an adult Type 1 diabetes patient, Marjorie advocated for things to be different. She suffered greatly and eventually died due to diabetes complications that could have been prevented with better resources and education. Before she passed, she inspired doctors and patients alike to keep fighting for the improved lives and care for people living with this condition. Her advocacy continues through the fund and its programs; her message has not been forgotten. And here is Dr. Baker to help tell it:
BT1: How long have you been involved in the global diabetes health initiative?
JB: I started to get involved in global health work in medical school. My first project was not diabetes related. I was 25 and I had just done a global health rotation in Tbilisi of the Republic of Georgia where I got pretty sick that summer. Back in Atlanta, while doing my surgical rotation, I started to lose weight and ultimately landed in the hospital with Type 1 (my third year of medical school). I think I’d contracted a GI bug that put me on the Type 1 trajectory and ultimately in global health.
Essentially after that, the second global experience I had was in Ghana and I spent the summer doing work with radiology. Living with diabetes, I was starting to understand what it was like to be Type 1 in resource-poor settings. Then I went to residency (at NYU) and was really busy; I didn’t have as much time to do global health work. As a fellow at Einstein in endocrinology though, I went to Uganda and it was on one of those first trips that I met Marjorie.
BT1: How does Marjorie’s story address a neglected demographic?
JB: In Uganda, I got to know people with Type 1 more intimately. This trip was a real eye-opener. I quickly realized, if I’d been born there, I would be dead. I met Marjorie and was really moved by her story and what an amazing educator she was. It broke my heart to see the complications she’d developed. after that, I traveled to other places that also opened my eyes to diabetes work, but I stayed in touch with Marjorie and essentially watched her decline. I started to fundraise for her to pay for dialysis, and I realized that we needed to do a lot more in terms of diabetes. It doesn’t prevent anything paying for dialysis.
I wanted to reach out on a wider scale in order to help prevent what happened to her from happening to others. It’s really that original experience with Marjorie (along with my personal experience) that I recognized more needed to be done. That’s how Marjorie’s Fund was born.
I was struck by the fact that most people in the Type 1 community were focused on kids. I was diagnosed as an adult and I was surprised by how many were struck at an older age with the illness. Of course it’s important to focus on youth, and they were doing a good job since the kids were growing up, but there was no plan for when they were adults and out of the programs that supported them as kids.
We asked, “What happens to Type 1s in these areas of the world when they grow up, and how can we give them a chance to make it?” We want to teach them how to use resources that they have whether they are adequate or inadequate. And how to teach healthcare systems how to best take care of Type 1s and how to best enable Type 1s to take care of themselves and be their own doctor.
We also work on advocacy work and how NGOs that are foreign based like Marjorie’s Fund can step back and look elsewhere to help. We want to make sustainable change so governments can take over where we leave off.
BT1: You’ve been in Uganda, Rwanda, Ethiopia, Ghana, India, Republic of Georgia, Qatar and Haiti. What have you found in terms of need? What do you think is important to convey to nations with more resources about Type 1 diabetes on a global scale?
JB: I think one of the biggest things that’s lacking is glucose testing supplies. Insulin is obviously essential, but if you don’t know how to dose it appropriately, it is useless and can be even deadly. I think it’s the biggest overlooked issue — be it in the US or other places — the ability to follow your blood sugar. The affordability of test strips and insulin is nearly impossible some places. Even in the United States, if you look at the cost of insulin in many communities (in senior communities who are on Medicare, for example) who can’t get CGMs covered nor get access to test strips.
The resources tend to be allocated mostly to children, but the majority of Type 1s are adults.
Type 1 and 2 is expensive especially if we have complications. We focus on areas outside of the US because there is a compounded problem with those people because the lack of resources and the passion and willingness to use those resources when they have them. It’s not just about helping those people in these other countries but there is an exchange of help.
Every time I come back I am even more motivated to care for myself, because I have a sense of obligation from what I have and I want to share that motivation and obligation with my patients here.
The control here in the US and the care is poor even though we have so many resources here and I think one of the reasons is because of burn out. How do we keep people invigorated and motivated? And I hope to get more US people involved and let them see what’s happening globally. We can help others, but then also inadvertently help ourselves.
BT1: What’s the situation like in some of these poor-resource areas?
JB: You walk into some of these dark and humid huts with chickens and cows roaming around. And you see these people with Type 1 smiling as they pull out their test strips and insulin from a hole in the ground, trying to keep their supplies cool on a hot summer day. They’re doing everything they can to take care of themselves and some are wildly successful at it.
I think it’s so moving, and I am moved to motivate. With a diagnosis there’s depression and anxiety, which is even harder to deal with, and it’s difficult to refer them to a counselor who gets it.
Many patients who are diagnosed feel like they are already dead. Their families feel that way as well. They don’t think they are worth investing in. This isn’t what happens to everyone, but it happens to many.
BT1: The mission of Marjorie’s Fund is “to empower adolescents and adults living with Type 1 diabetes in resource-poor settings to not only survive, but to effectively manage their diabetes and to thrive.” You are doing this through education, resources and research. In terms of education, what is the biggest thing you stress to under-privileged populations in terms of diabetes management?
JB: Use the resources you have to the best of your ability. We try to create situations that can work realistically with the resources they have. Part of the education program that we developed gives them a lot of test strips to check BGLs with certain foods, so that they know what one food will do versus another. When they don’t have as many strips, they can guess and hopefully know. We really emphasize the nutrition piece — students do their own cooking and keep diabetes diaries, so they can record how food impacts their blood sugar. It’s all trial and error for these people.
We also emphasize monitoring as best as they can and promote low-carb foods, (which is difficult in a high starch society). We also promote being positive and “out of the closet” with their Type 1 diabetes, because there is more shame and stigma surrounding it in poorer nations.
I met recently with a brother and sister in Rwanda who were taken to a witch doctor to try and get rid of their Type 1. In India, I met a man who’d lived with it for five years and wouldn’t tell his wife, because he was worried she’d divorce him. There, you are considered unmarriable with Type 1. He eventually came out and told her. She didn’t divorce him. There’s just a lot of misinformation out there, and we want to help people feel as brave and empowered as we can through education.
BT1: You mention lifestyle interventions. What are you suggesting in these resource-poor regions?
JB: Stay more hydrated.
BT1: How would dehydration affect someone with Type 1?
JB: Many are chronically hyperglycemic because they are dehydrated. They could flip into DKA more easily and become acutely ill because of this. Staying hydrated helps control blood sugar levels.
BT1: In terms of resources, how accessible is insulin to these populations?
JB: It’s not. Basically, the majority of any insulin in these populations is donated. If it’s available, it’s highly marked up and of unclear quality. In Rwanda, they do have a national healthcare system, and you can get it, but you typically have to travel far because it’s only in a few hospitals. It’s a combination of not having it, or it being too expensive, or if it is available, it’s too far away.
Typically, the insulin they have is the cheaper NPH and regular (Mix Tard). Sometimes people won’t take NPH because they don’t want to have low blood sugars. If you take NPH, say twice a day and it peaks, and you’re without food, you’ll go into deadly hypoglycemia.
We see a lot of death from hypoglycemia, more because the lack of access to test strips, and also because of the higher utilization of insulins that peak like NPH.
BT1: In terms of research, why is an epidemiological database important?
JB: We have to understand the populations we are trying help in order to design interventions and have an informed argument to present to their governments so they can help them. When you try to approach the local governments, they want data, and unfortunately the data is not there to get them to care enough. It’s our obligation to record what we are doing, so we can better help.
It’s also another piece of the big picture — there is little data on whether people were exposed to a virus or toxin and it hasn’t been looked at in any organized fashion. Ultimately, that could help us all to understand when and why Type 1 happens. We are a small organization, so don’t have the ability to be involved in extensive research like that, but it can open the door for those types of studies to take place.
BT1: Marjorie was diagnosed at age 3 with Type 1 and although she died from T1D complications at 29, she is considered one of the “lucky ones” in developing nations. How is that?
JB: She’s the lucky one because she would have died soon after she was diagnosed had she not been fortunate enough to be put into contact with one of the leaders of Type 1 in Uganda who had access to test strips and insulin. Ultimately, what she was plugged into was not enough to help her and prevent kidney failure. She was kept alive by this access; however, like so many others, she grew into inevitable complications. By the time she reached her 20s her entire family was working to help her and the costs were astronomical.
BT1: You mention that Marjorie, before her untimely death at 29, went around Uganda speaking to healthcare providers and patients about how to better manage Type 1 diabetes, hoping to change the healthcare system there, despite limited resources. What did she propose?
JB: She would talk to some Type 1s, but she mostly talked to healthcare providers, doctors and nurses. We met at an educational conference where she was speaking. The nurses and doctors were on the front lines of Type 1, (and diabetes in general) and she was a face to the problem. Marjorie was introduced as “This is your patient; ask her your questions.” She shared what it was like to live with Type 1 diabetes both physically and psychologically. It isn’t the norm to share your health complications in Uganda. Her sharing changed many people’s views on type 1 and helped caregivers manage their patients better.
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