People with diabetes around the world, and increasingly in the U.S., are unable to afford the outrageous costs of insulin and diabetes management supplies needed to stay alive. “Why is this the case?” so many ask. And why is there no generic version of insulin, which would – in theory – be cheaper and make insulin more affordable? In short, although biohackers are working on the Open Insulin Project, which would make the life-sustaining hormone more affordable and accessible, an absolute generic version of insulin is not easily possible.
Insulin is a live hormone (rather than a molecule), so making a generic version is much more complicated and expensive than just duplicating a chemical molecule to make aspirin, for example. Instead, what is called a biosimilar has to be created. In essence, the creator will make the same cake (drug) as another company, but with a different recipe.
Companies making generic versions of drugs do not have to go through the same complexity of human trials as the original drugs before getting approval from a drug regulator. Biosimilars, on the other hand, are complicated to produce so regulators say that they need to be tested almost as thoroughly as a completely new product. Because of this, there is little market incentive to produce a biosimiliar. So, essentially, the only big biosimilar insulins on the market, or in the works, are produced by the ‘big three’ insulin makers, Eli Lilly, Novo Nordisk, Sanofi, who dominate about 90% of the market.
We have seen how list prices of insulin have been rising in lockstep with each other. The list price of Humalog in the USA was $274.70 per a vial, as of May 2017. This is a price increase of 1123% since June 1996.
Some of the big and powerful insulin manufacturers are “supporting” people with Type 1 diabetes around the globe by providing donations of insulin to communities in need. These donations can save lives, but they also hold clinics and patients hostage. The beneficiaries of these donated essentials become completely reliant on the insulin companies to continue their generosity.
Patients who are recipients of these donations often find themselves in dangerous situations when a company decides to discontinue support. On other occasions, the quantity of vials of insulin donated or test strips provided has been significantly reduced.
Patient assistance programs offered by insulin manufacturers as a solution to the high cost often only benefit a small number of people who must meet very specific program eligibility requirements. Even meeting the criteria does not guarantee eligibility for a program. Angela Lautner, a person living with type 1 diabetes, said, “The last time I tried to use Lilly’s patient assistance program, I had just been laid off. Even though I had a lay-off notice and documentation, they used my income up until that point to show that I could not benefit from the free access.”
So what real solutions are there? The advocacy group I founded, T1International, is working towards solutions that allow everyone to have long-term, unrestricted access to essential insulin and supplies, as well as other aspects of diabetes care.
This means that, rather than provide donations of insulin and diabetes supplies, which isn’t’ a long-term solution, T1International works closely with the people most affected by the issues in their country or their town so that they can lead plans for local solutions. The Diabetes Access Advocacy Toolkit gives anyone interested in advocating the tools to create a plan and stand up for their diabetes rights. This resource is the first of its kind for the diabetes community related to the issue of access to medicine and care.
The toolkit includes real-life advocacy case studies and is made up of five sections to guide the user through various stages of the process, including goal setting, planning your action, ways to take action and put pressure on the target, and evaluate your efforts. The toolkit is free to download online, but the group has also printed 500 hard copies to share with its partners and advocates around the world.
T1International works with global advocates around the world and trains them to use the toolkit and carry out an advocacy plan. Local T1International advocates have already successfully pushed forward pharmaceutical transparency bills in the USA, such as SB 265 in Nevada, and improved access to blood glucose testing strips in Kenya. The impact that one trained advocate has will be amplified repeatedly as they share their skills with others. With support from the diabetes community, advocates around the world can achieve their specific advocacy plans. One step at a time, we will see access improve for everyone worldwide.