Facing my own ‘Groundhog Day’
The reality of access to insulin.
Helen Bygrave, Chronic Disease Advisor, MSF Access Campaign
When I first started working as an HIV doctor in a clinic in Uganda in 2001, no one there had access to lifesaving antiretroviral therapy. Instead, I spent six difficult months doing palliative care for my patients, knowing that the medicines that could save them were sitting on the shelves of the London hospital I had left behind.
Today, 20 years on, over 20 million people with HIV are alive thanks to their ability to access these drugs — a transformation brought about through a combination of dedicated activism, political commitment and the availability of more affordable generic medicines.
But now, I find myself facing my own groundhog day as history repeats itself and I am faced once more with people in my clinic who haven’t been able to get hold of lifesaving medicines for a disease for which there is an effective treatment — diabetes.
In April this year, a child arrived in a hospital in the Democratic Republic of Congo where MSF was fighting the Ebola outbreak. He was very thin and quite breathless. But it wasn’t HIV or Ebola as might have been supposed.
After examination, he was admitted for treatment with an acute life-threatening complication of diabetes called diabetic ketoacidosis (DKA) — what happens when the blood sugar shoots up out of control when there’s no insulin to control it.
The little boy was diagnosed with type 1 diabetes — the most dangerous form of diabetes unless it is controlled with daily insulin injections. He was given the insulin he needed to treat this emergency situation. But when the doctor in the hospital asked my colleague for MSF to provide ongoing insulin for when the child left the clinic, they were given the painful answer, ‘We are not set up to treat diabetes in this project’.
Curious, I asked colleagues for their experience of treating patients with diabetes and there were quite a few. I got my own reality check in a refugee clinic in Tanzania where people with type 1 diabetes were at least receiving insulin but were being asked to attend the clinic to receive insulin in person, twice a day every day, for the rest of their lives …
Diabetes is a big challenge, globally. It’s hard to get accurate figures, but it is estimated that there are 1.1 million children and adolescents living with type 1 diabetes. Half of these people do not have access to insulin.
So why is treatment not more available? Let’s backtrack a bit.
When Frederick Banting and colleagues at the University of Toronto discovered insulin nearly a hundred years ago, they were given the Nobel Prize in Medicine. The prize was awarded both for the discovery of the drug, and for the ambition to ensure that it could be widely accessed by those in need of the medication. This they hoped to achieve by selling all the rights to the medicine to the university for just one single dollar.
But today insulin prices are very high; the average price of the insulin used in humanitarian settings where MSF works is about US$ 190 a year for an average adult — an amount that is completely unaffordable for people with diabetes living in these countries who must often pay for their medicines out of their own pocket. And if you put that insulin in a pen to make it easier to inject — the usual method of administration in rich countries — the price can shoot up even six-fold.
So what has gone so wrong?
The answer is that three corporations have the market for insulin stitched up. Eli Lilly, Novo Nordisk and Sanofi — all three corporations enjoying multibillion-dollar profit margins — control 99% of the insulin market. And they have all managed to keep the prices high — and push them higher every year.
You’d hope that there would be a way around these high prices. It was the introduction of a number of affordable generic drugs, that brought the price of antiretroviral therapy down two decades ago by introducing meaningful market competition.
But there’s no similar competition from ‘generic’ versions of insulin to challenge the monopoly curently held by the three corporations. One reason for this has been that unlike the World Health Organization’s ‘Prequalification Process that helped stimulate the market for generic antiretrovirals, there has been no equivalent process to help ensure the safety and efficacy of generic versions of insulin — called biosimilars — though this is set to change next year.
“It’s clear that profiteering …is one reason millions of people who need insulin are shut out of accessing the medicine.”
We know too that the actual costs of producing insulin are low according to a study published in 2018. The study revealed that the production cost for older and the newer types of insulin (human versus long-acting analogue insulin) has been calculated to be US$3.35 and US$5.32 per 10mL vial, respectively. That works out at US$72 per patient per year for the older, human insulin, and US$133 per patient per year for the newer, analogue insulin — including a profit margin. Yet the prices governments pay for analogue insulin in low- and middle- income countries can reach nearly four times that figure.
When the corporations are charging such high prices and yet the production costs are so low, it’s clear that profiteering by the main producers of insulin is one reason millions of people who need insulin are shut out of accessing the medicine.
As a clinician, I also find it unfair that there’s a double standard emerging in how people are given their insulin between those in humanitarian settings and richer patients.
Currently, because of the price, insulin is made available only in vials to people in our clinics and other people with diabetes in low-income countries. That means much trickier injections every day with needles and syringes, which also need to be paid for. But for those who can pay more, there is the option of ‘insulin pens’ that make injections easier to do accurately, and are more convenient.
When we encountered people with diabetes in our clinics in the Middle East, who had previously used insulin pens before the region was plunged into conflict, we tried to put them back on syringes and needles, but they just looked at us incredulously and pushed us to find insulin pens. Good for them.
Finally, I want to be able to dream. Since that first trip to Uganda in 2001, I have witnessed people with HIV in many low-income settings getting access to antiretroviral treatment. I’ve seen how treatment for both drug-resistant tuberculosis and hepatitis C have moved from toxic ineffective regimens needing injections to increasingly effective and safe, oral short-course combinations.
There are now some very exciting products in the diabetes pipeline too that may mean no more injections and potentially much less blood glucose monitoring. But we must ensure these products will be made available to people in the places where we work, and not just to people in rich countries.
I live in hope that I will be around long enough to see the coming revolution in diabetes care transform the lives of people in MSF clinics, as well as people with diabetes on my old north London wards.