World Diabetes Day

WHO commemorates World Diabetes Day annually on 14 November. This year’s WHO campaign, “Diabetes across life stages,” stresses that diabetes can affect people at every age. As part of this effort, on 14 November WHO launches its first-ever recommendations on care for women with diabetes in pregnancy.

In recognition of this, MPP News spoke to two women who have lived with Type 1 diabetes throughout their lives, and  who have also recently given birth.

MRIDULA KAPIL BHARGAVA

MRIDULA KAPIL BHARGAVA is a public health professional with over 11 years of experience in public health and diabetes advocacy. She is the Founder-Director of the Diabetes Fighters Trust, an eight-year-old organization advancing diabetes awareness and empowerment in India, and serves on the Medicines Patent Pool’s (MPP) Community Advisory Panel (CAP) as an expert on diabetes.

ALYSON BANCROFT

ALYSON BANCROFT has worked at diabetes camps in the USA, Latin America and the Caribbean, and is currently the Director of Legislation, Policy and Alliances for the NGO Patients for Affordable Drugs, based in Washington DC. She previously worked at a funder that made grants in global diabetes care and also sits on MPP’s CAP as an expert on diabetes.

Intensive glucose management during pregnancy is needed, as, because of hormonal fluctuations and changing insulin needs, maintaining near-normal glucose levels during pregnancy is extremely challenging.

Both hyperglycaemia and hypoglycaemia are associated with serious complications, such as macrosomia, preterm birth, neonatal hypoglycaemia. To obviate these, access to continuous glucose monitoring (CGM) and insulin pump therapy (CSII) is ideal, as are hybrid closed-loop systems (automated insulin delivery) where feasible. Furthermore, structured education and support for frequent self-monitoring and insulin adjustment are paramount.

WHO has set 2030 Diabetes Coverage Targets, including universal access to affordable insulin and self-monitoring for people with Type 1 diabetes. WHO is also launching updated guidelines for monitoring and managing hyperglycaemia in pregnancy, an area where women in many low- and middle-income countries (LMICs) still face substantial challenges. The experiences shared by Alyson and Mridula underscore how critical such guidance and accessible treatment options will be.

Mridula and Alyson were both diagnosed around the age of four with Type 1 diabetes in the early 1990s. But as Mridula grew up in India, and Alyson in the USA, the medical treatment they received was markedly different. They have also both recently given birth, which further highlighted the differences in approaches towards diabetes managements in their two countries.

“I now wear a medical device on my body that reads my blood sugar every five minutes,” explains Alyson. “Even before that, if I wanted to check my blood sugar 10 times a day by pricking my finger, I could do that.”

Health facilities were four to five hours away

Conversely, Mridula grew up in one of India’s smaller cities, and now lives in Delhi. Growing up, she says, “Doctors’ facilities were not that great. My family and I had to travel to Delhi, which would take us around 4-5 hours just one way.”

“Every day I would take insulin injections four to five times, and prick my fingers to check blood sugar levels. That’s not easy at all for the parents or the child. It’s exactly like a trauma because parents feel like as if their child has no hope, especially back in1992.”

She reflects on how people living with diabetes have long faced their challenges in isolation. ” There wasn’t any Internet back then or WhatsApp groups and the like,” Mridula points out. “There were no communities to connect doctors and patients, so no diabetes’ educators.”

Recent studies estimate that over 101 million people, or 11.4 per cent of the population of India, have all forms of diabetes, and 136 million have pre-diabetes.

Huge stigma surrounding insulin

But despite these figures, Mridula reports that diabetes remains poorly understood in India, even among doctors and other medical professionals. “Despite India being known as the diabetes capital of the world, a significant stigma around insulin persists.”

There is a small but telling indication of this ignorance in the language used when discussing the condition. “Many people think that changes in lifestyle can reverse diabetes – but that word ‘reverse’ is itself wrong,” she explains. “It can only be put in remission. It’s an autoimmune condition.”

It’s hardly surprising, then, as Alyson points out, that misconceptions exist across many LMICs. “Some believe that only the very young or very old people get diabetes or have diabetes.” Alyson’s own experience bears out at least one common misconception: when working in Haiti, a teenager with Type 1 diabetes found it difficult to accept that Alyson could have diabetes – because Alyson herself is so tall.

A struggle to access affordably analogue insulin in India

Both Alyson and Mridula are clear about why diabetes is so under-addressed in LMICs. Mridula says that, “In India, I still struggle to access affordable analogue insulin. Biosimilars exist in the market but are not preferred by many. Analogue insulins act much faster, sometimes within minutes whereas human insulin can take 30 to 40 minutes to start working.”

She also makes the point that the ignorance surrounding diabetes had another impact on her when pregnant. “I really struggled     understanding how to manage Type 1 diabetes with pregnancy,” she says, “because in India we do not have any guidelines. Besides my doctor’s guidance, I had to depend on the western guidelines from the American Diabetes Association, from books and authors from the western world.”

This was bad enough but, “having a child while living with diabetes,she continues, “I lost all my savings. There’s no insurance, nothing that I can claim back. I use this insulin pump – and the running cost of my car is cheaper than this insulin pump.”

Alyson makes a wider point about health provision in LMICs. “The global health architecture historically has focused on infectious diseases,” she explains, “which presents some difficulties when it comes to targeting NCDs. So not only is there a lack of availability and affordability for drugs, but often healthcare providers haven’t had the requisite training. And when you do have specialists, they are often overwhelmed or don’t talk to each other within the healthcare system.”

Taking three times the normal amount of insulin during pregnancy

Like Mridula, Alyson found that managing diabetes when pregnant was especially challenging. She recounts that she was, “taking three times as much insulin, and I was taking metformin, which typically people with Type 2 take. I was taking both the long-acting insulin as well as a short-acting insulin in my pump.

“But all the while I knew that my circumstances were ultimately much better than most people living with diabetes, certainly worldwide, and even in the United States. I want everybody to have access to the things that I did during pregnancy.”

Both Mridula and Alyson have had diabetes for all their lives. But some women develop diabetes only when pregnant, ‘gestational diabetes’. At any given moment, it is estimated that 14 per cent of all pregnancies globally are affected with gestational diabetes, although the rate of diagnosis is much lower than this.

And as Alyson makes clear, “Blood sugar levels are even more important when pregnant because it has implications for the baby’s development. But that can be difficult because getting the blood sugars you need is even harder because of all the hormones in your system. Especially towards the end of pregnancy, the placenta can drive so much insulin resistance. I was taking three times as much insulin during the final weeks of my pregnancy.”  

Mridula also speaks directly to her own experience. “My pre-pregnancy of around 34 units of insulin per day, went up to 100 units per day,” she says simply.

Gestational diabetes should fall within remit of maternal and child health

Gestational diabetes is different from both Type 1 and Type 2 diabetes, and is first diagnosed during pregnancy, typically in the second or third trimester.  Those with gestational diabetes are more likely to develop Type 2 diabetes later on in life, but as Alyson suggests, “gestational diabetes should fall more within the remit maternal and child health, rather than primary care.” The challenges for those with gestational diabetes are the same with type 1 or type 2 diabetes, but, as Alyson continues, the flexibility of quantity is really key during pregnancy. When it comes to checking blood sugar levels, insulin or other medications just aren’t going to be at your disposal in LMICs.”

Both are keen to set out how they believe this lack of access can and must be reversed. In Mridula’s case, the changes she would like to see are very specific, and have already been submitted to the government of India.

“Our first demand is a national register of people living with type one diabetes,” she says. “If we don’t have it, how are we going to create any kind of policy?”

Analogue insulin should be placed on India’s national and state EMLs

“The second demand concerns an Essential Medicines List (EML). India has 29 different states and each state is like a country on its own. We have more than 1300 languages and dialects. We want the analogue insulin to be placed in our national and state EMLs.”

The third demand is for insurance, and for CGMS strips to be available at very reasonable, very cheap prices and subsidised.”

Alyson is clear that for expanding access in LMICs, “Community involvement is a key part, whether it’s with ministries of health or others within the global healthcare system. We should use existing protocol health centres and not reinvent the wheel. We’ve seen how infrastructure for HIV and AIDS has been used for all sorts of health conditions in a very efficient and cost-effective way. It’s a blueprint that works, and can be applied to training professionals or even with information sharing.”

Both are also adamant that access to the best drugs available for LMICs needs to be expanded. MPP aims to play a key role in this.

MPP can help with availability and affordability of medicines for patients living with diabetes and obesity

While we need to answer all the scientific questions on the safe use of medicines during pregnancy, we also need to address access as soon as we can. “When we’re trying to achieve greater availability and affordability,” says Alyson, “for both insulin and GLP-1s, increased competition is a big part of it – and so is MPP’s approach. MPP is looking into GLP-1 receptor agonists – although they are not yet recommended during pregnancy – and that is really essential. Tech transfer is really crucial as well, increasing manufacturing capacity of producers in other countries.”

Her words are echoed by Mridula, “MPP can also play a big role connecting companies and expediting the whole process.”

Both Alyson and Mridula also stress, above all, that diabetes is not just one moment, but a lifelong journey. ” No one should be left behind. All people with diabetes deserve access to care and that goes through from children up to the oldest adults. It’s about supporting parents of newly diagnosed children,” concludes Alyson, “empowering teenagers to self-manage their diabetes confidently and ensuring adults receive ongoing education and access to modern therapies. It’s really important that we create health systems that allow for that.”

Ends.