In Depth

Everyone with type 1 diabetes should have access to insulin. How can we make it happen?

Lack of access to vital diabetes supplies around the world is a massive problem. A recent publication by Health Action International stated that in many low- and middle-income countries “people with diabetes are either forced to purchase insulin in the private sector at its full price, use less than the prescribed amount so that their supply lasts longer, or go without.”

In order to address these issues we need to have a good understanding of their scale and nature – unfortunately, we don’t. For example, the publication mentioned above represents some of the only data we have on global insulin prices, but it is sadly lacking in detail and does not explore costs of other diabetes supplies such as blood glucose test strips or syringes. Although the paper was published in 2015, the data is from 2010 (and earlier) and was collected by willing and able individuals in each country. This means that individuals in hard-to-reach areas where access to insulin is most problematic were probably not able to participate. It’s unlikely that the situation is fully and accurately represented.

The International Diabetes Federation (IDF) should hold the most comprehensive data on diabetes around the world, but their Diabetes Atlas says that in Africa “…data to estimate the numbers of children with type 1 diabetes remain very scarce. There is an urgent need for further epidemiological research and improved data collection systems in the Region.” This desperate need for more research and data has been noted again and again in past reports. Back in the 2010 Atlas, the IDF raised the same issue about African, stating that there is a ‘’great need for further epidemiological investigation in the region.’’ It is never mentioned how the IDF intends to address the situation, and they recently confirmed that they do not carry out any primary research for the atlas. If the IDF is not prioritising this data collectio, who will?

“people with diabetes are either forced to purchase insulin in the private sector at its full price, use less than the prescribed amount so that their supply lasts longer, or go without”

Those few studies that have addressed the issue – such as David Berran’s 2011 article and his earlier work with the International Insulin Foundation – ask as many questions as they answer. Although it’s excellent that this research exists at all, there is great room for improvement. Researchers have not fully explained their methodologies or identified how their findings may be skewed. For example, people with type 1 diabetes in hard-to-reach locations often die before diagnosis. Of those that survive, few will have the opportunity to record their experience. How do researchers take note of these issues in their reports? And how can we be sure that we have a comprehensive picture of the situation?

It is not fair to expect these researchers and entities to cover every issue. There simply is not enough time or money for a small group of people to reach everyone and explore every detail of the situation. This leads to another big problem: lack of funding. Many people and powerful organisations in the diabetes community seem to recognize that lack of access is one of the most pressing global diabetes issues. However, very few of them seem willing to allocate money or resources towards more research or to support initiatives that are working to solve the myriad and complicated problems of access to insulin and supplies. But what could be more worthy of funding?

insulin vial

Exacerbating the situation is a lack of collaboration. Where efforts and finances could be combined, they are wasted on similar research. At least two pieces of research related to access to insulin are currently being carried out by two separate entities; it is unclear how, or if, they will complement each other. It’s encouraging to see these efforts being made, but the lack of coordination and sharing of knowledge is worrying.

Despite the gaps in our data and knowledge, one thing remains obvious: there is a crippling lack of access to insulin and supplies throughout the world. War in Syria and the subsequent refugee crisis have grabbed headlines around the world, but what is less well known is what happens to people with type 1 in those situations. A T1International story by a man in Syria noted, “…if someone is able to find work at all, the income is not more than $100 per month, but diabetes supplies and insulin cost at least $150 per month.”The situation is not much better in many countries where war is not occurring.

People with type 1 diabetes in hard-to-reach locations often die before diagnosis. Of those that survive, few will have the opportunity to record their experience

In Sierra Leone, 70% live below the poverty line and there are only two doctors per 100,000 people (in the UK there are 280 doctors per 100,000). Not surprisingly, the average life expectancy for a child with type 1 diabetes in sub-Saharan Africa is less than a year. Regional differences within countries are vast, so some areas of a country will have almost full access, while others have next to nothing. In an interview with T1International, a doctor in Rwanda said that “for the vast majority of patients who are either unemployed or live on subsistence agriculture without any money to spare, [the cost of diabetes supplies] is substantial.” Many people with type 1 diabetes who manage to secure insulin still can’t afford regular blood glucose testing.

We have only a partial understanding of the complex factors that lead to a lack of access from country-to-country and region-to-region. Without a deeper understanding, the problem is impossible to solve. What can be done? For a start, we can question the existing research and push for more funding to be allocated to understanding and solving these problems. We can also encourage collaboratio, transparency and accountability. It is vital to share and learn from each other. It is vital that there are coordinated research efforts, which will lead to a clearer understanding of the problems and more specific and sustainable solutions.

The only way solve such overwhelming problems is by speaking out, working together, and supporting each other.

By Elizabeth and John Rowley.

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Elizabeth Rowley is the Founder and Director of T1International. She was born in the United States and has lived with type 1 diabetes for over 20 years. Elizabeth moved to London in 2011 to complete her Master’s degree in International Development and Humanitarian Emergencies at the London School of Economics and Political Science. It was during her course of study that she began to address the fact that many people with type 1 diabetes are fighting for their lives daily due to lack of supplies, care, treatment, and education. Elizabeth is confident that by working together we can find creative and sustainable solutions to the complex problems faced by people with diabetes.

John Rowley is a town planner who works for the Campaign to Protect Rural England. He was diagnosed with type 1 at the age of 23 and remembers thinking at the time how amazing it was to have such great care provided for free by the NHS. It wasn’t until several years later that it struck him how difficult it must be to live with diabetes in places without free and accessible medical care. John has been involved in most aspects of T1International since the very beginning.

If you’re interested in working to improve access to insulin, visit www.t1international.com to learn more.

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