Last month, I attended a meeting with the Helmsley Charitable Trust folks in New York, brainstorming with some community leaders on how we can best work together to make life better for people with type 1 diabetes everywhere. One of the folks I met on that trip was Merith Basey, the young, enthusiastic Director of International Operations at the Virginia-based non-profit organization AYUDA (American Youth Understanding Diabetes Abroad). Some things that Merith told me about diabetes in the Third World were eye-opening, to say the least. Not just how much they need help, but how help often comes in the wrong forms.
Don’t miss today’s inside look from Merith on what’s happening with diabetes advocacy in the neediest countries:
A Guest Post by Merith Basey, AYUDA
As we all know, diabetes today is a global epidemic — affecting an estimated 366 million people on the planet. Readers of this blog will be no strangers to the challenges of managing diabetes wherever in the world they may live. These challenges can be greatly exacerbated in low and middle income countries, where an overwhelming 80% of people with diabetes live and where a lack of education at the primary health care level is often coupled with poor access to medical supplies (due to poor access to health services, inequities within the health system, insufficient or non-existent drug supply system and inability to pay).
Given the current global economic crisis, the dual burden of diabetes combined with unemployment can push people more deeply into poverty and poor health wherever in the world they live. For young people aged 15-24, who in 2009 made up almost 40% of those without work, living with or being at risk for diabetes in these countries can be particularly burdensome. They can often live for extended periods with undiagnosed diabetes and their decreased quality of life and lost productivity can remain unrecognized by many, including their governments.
Over the past eight years with AYUDA, living and working in type 1 diabetes communities across Latin America, I have witnessed first-hand the everyday realities that many children, young people and their families face when trying to manage the condition, particularly when confronted with the dual challenges of access to affordable medication and supplies, and access to appropriate education and support. Two main challenges remain at the core:
A lack of insulin and diabetes supplies
Despite what people may believe, more than 90 years after the discovery of insulin, children and young people in many parts of the world still die or suffer preventable complications as a result of a lack of insulin. Even though insulin is listed in the World Health Organization (WHO) Essential Medicines List, the IDF recognizes that, “it is still not available on an uninterrupted basis in many parts of the developing world.”
Furthermore, the cost of insulin and test strips is often disproportionate to the average monthly income for a local family, i.e. in developing countries, paying for insulin and testing supplies each month represents a much more significant proportion of a family’s paycheck than it would elsewhere. Since test strips alone can cost up to $1 each, testing even a couple of times per day can be almost impossible in countries where a large proportion of the population live on less than $2 per day. There are also vast inequities within countries, for example a person diagnosed with type 1 diabetes in rural Mozambique has a life expectancy of less than 2 years, whereas someone living in the country’s capital Maputo, would have a life expectancy closer to 20 years.
That said, many people without health insurance in high-income countries like the United States can also end up paying high prices for their insulin
and testing supplies, particularly at a moment in the country’s history where 46.2 million are now living below the poverty line. As a result, increasing numbers of people cannot afford to correctly adhere to their insulin therapy and consequently are at increased risk of hospitalization with DKA. A recent study in the U.S. reported that a “lack of money or transportation to obtain insulin” was the reason that a third of patients entering hospital with DKA had halted their own insulin therapy.
With the growing numbers of people living with insulin-dependent diabetes, including an estimated rate of 78,000 new cases of type 1 diabetes per year, the global need for insulin (and other diabetes supplies) will continue to increase.
Over the past decade in the field of HIV/AIDS, strong pressure from HIV activists and NGOs meant that life-saving anti-retroviral drugs were reduced from more than $10,000 per person per year to less than $100 per year, due in part to a price war between branded pharmaceutical drugs and significantly cheaper generic drugs. Activist pressure helped to shift government policy so that pharmaceutical companies were forced to run things differently, making drugs much more affordable for both people and governments.
In diabetes, the leap to affordability is still yet to come. Despite human insulins such as NPH and R being off-patent (i.e. being available as a generic, or non-brand name version), newer branded analogue insulin (eg. Lantus, Humalog, Novorapid etc), is still on-patent, which means that although the WHO recognizes that analogue insulin provides “no clear advantage over human insulin,” the higher costs of analogue insulin are considered to inflate the cost of all insulins.
Myths create cost disparities
In addition to high costs of insulin and diabetes supplies in general, there are often many myths surrounding diabetes, including the widespread misconception that simply the use of more expensive insulin will translate into better health. As David Beran, Advisor to the Board for the International Insulin Foundation highlights, “in government tendering schemes, generic companies have the added disadvantage of no brand recognition.”
There is understandably a desire and pressure amongst parents to seek what is perceived to be the best diabetes care for their children. In some of the type 1 diabetes communities in which I have worked in Latin America, you can often see the repercussions that the high prices of some branded drugs and supplies can have for families who cannot afford them. While many families or young people can manage their child’s or their own diabetes well on a non-branded regimen of NPH and R (without the additional expense of branded insulin), others struggle to pay for branded insulin unnecessarily. It is not uncommon in some communities to see siblings of children with type 1 diabetes refuse food at home from time to time through concern that the money would be better spent on their brother or sister’s diabetes supplies.
A lack of education is just as dangerous as a lack of insulin
For diabetes, access to insulin and other diabetes supplies is both obvious and critical, but living a full and productive life with diabetes is not assured without appropriate diabetes education and support. Unfortunately, over the years I have continued to witness the tragic and preventable consequences of a lack of diabetes education that can be equally debilitating as a lack of insulin.
The founding of AYUDA was in fact inspired by a young boy in Quito, Ecuador, who despite having access to insulin, was never in control of his diabetes. What was missing from the equation was the diabetes education component and just as importantly, a community for him and his family to connect to and learn from. Today, through partnerships with transparent local diabetes organizations, AYUDA is dedicated to developing and implementing sustainable diabetes programs using a youth-to- youth model. Through increasing access to diabetes supplies, coupled with locally appropriate, culturally sensitive diabetes education, our goal is to ensure no child dies or suffers preventable complications as a result of type 1 diabetes and furthermore that he or she is empowered to live a healthy and happy life with diabetes. As an organization AYUDA is dedicated to collaborating with local diabetes communities to develop and implement sustainable diabetes programs. AYUDA’s peer learning model uses international volunteers as catalysts for motivating local young people with diabetes to live happy and healthy lives.
Despite the many advances that we see every day in medicine, the disparities in global healthcare spending for diabetes continue to be vast, with only 20% of global healthcare expenditures for diabetes going to low and middle income countries. As a result, it is fundamental that urgent action is taken with regard to increasing affordable access to diabetes treatment, education and support, in a sustainable and locally appropriate manner.
Wow. Thank you, Merith! For more on what AYUDA does, watch this video: