WRITTEN BY: Elizabeth Pfeister
Editor’s Note: This piece is a part of Focus On Access, a content series sharing resources and perspectives on insulin pricing in the United States. Explore the full series here.
Tell us about your history with diabetes and the founding of T1International
I have had Type 1 diabetes since I was four years old. I’m 31 now, so it’s been over 25 years. I grew up in the U.S. and I was lucky to always have good access to the things that I needed for my diabetes.
Pretty early on I started thinking about what life with Type 1 diabetes was like in other parts of the world, especially in places where health systems are not stable. I studied International Studies in college and then I came to London in 2011 to do my master’s degree in International Development. It was then that I really dove deeper into insulin access globally, including the cost to patients, affordability issues, and accessibility.
I knew that people were still dying because insulin, supplies and care weren’t available to them. I felt that no one was really addressing the issues in a way that put patients first and pushed for long-term, sustainable change. I started collecting information to put on what was originally a simple website. I then found myself connecting with people all over the world through different conferences and meetings — and thanks to the wonders of the internet. I eventually realized that I was educating people about these issues, but more was needed. Working directly with people with Type 1 diabetes all over the world made me see there was a real need for patient-led advocacy. There was not really any organization or group that was representing patients fully and fighting for access. There were especially not initiatives that were free from pharmaceutical industry funding.
So in 2013, we became an official organization, I brought on a board of trustees, we set a strategy, and I suppose the rest is history. Now we have links with people in over 60 countries around the world, and strong advocates that we work closely with in many of those countries. We are doing both US-focused access work and global work.
What is T1International’s mission?
We believe that life with diabetes is complicated, but access to affordable insulin, supplies and care should not be. T1International advocates for people with Type 1 diabetes all around the world. We’re an organization made up of people with Type 1 that advocate for – and alongside – people with Type 1 diabetes. We give people the tools to stand up for their rights and fight for long-term, systemic change so that no one has to rely on donations, or suffer because they can’t access what they need.
Can you tell me about some of the work that you’re doing on insulin pricing issues in the United States, specifically?
Things have really ramped up in the past year-and-a half in terms of media coverage and in political action. It’s fantastic to see that insulin pricing is increasingly in the spotlight, but so many are suffering and dying that we know how essential it is to push for meaningful, long-term change.
One of the things that we try to do at T1International is focus on the most vulnerable communities and highlight and fight for people who are often hit hardest by these access issues. So for example, when it comes to struggling with the cost of insulin, people without insurance are often hit the hardest. We’ve been sharing stories, making statements, protesting, pushing the media, and fighting for political attention on the insulin price crisis for many years.
In 2018 we started our Chapter model. We now have 23 Chapters covering 26 states, with more on the way. Our Chapters are run by volunteer advocates who are connecting with each other to learn about insulin pricing issues and pushing forward legislation to improve the lives of people with Type 1 diabetes, specifically related to access and affordability of insulin. Chapters are getting media exposure about the issues. They are contacting and meeting with their local representatives in the state legislature to inform them about the insulin price crisis and asking them to take action to address it. You can read our latest Chapters update on our blog. It’s incredible to see the advocates, many who are very new to advocacy, achieving real change.
As an organization we’re also inputting on the federal level as well and fighting for transparency and lower prices across the board. Transparency is a first step, but a vitally important one to ensure we know how to best address and solve this crisis.
And our patient-led activism is working. Recently Eli Lilly announced that in response to criticism of high prices, the company will sell a version of Humalog insulin for $137.35, or half of the current list price. We are pleased to see this result after relentless efforts by non-pharma funded patient advocates to ensure the list price of insulin goes down. It shows that our voices have power, and it also shows that these companies have the power to make insulin vastly more affordable at the drop of the hat. An estimate for the cost to produce a vial of analogue insulin is about $6 at most, which means Eli Lilly and the other insulin manufacturers could make this life saving drug even more affordable while still making enormous profits.
This is a significant win for the #insulin4all movement, but it shows that Eli Lilly, Novo Nordisk and Sanofi can and should be offering genuinely affordable prices to all who need insulin to survive. This is certainly only the beginning and it does not get Eli Lilly off the hook for their price-gouging. T1International and those in the #insulin4all movement will remain vigilant until insulin is truly affordable for everyone.
What makes insulin access in the United States so difficult?
Having worked in and studied health systems all over the world, I fully agree with what a lot of folks say — that the system in the USA is broken. I agree that it’s one of the most complex systems in the world and that everything is so hidden and opaque that it’s difficult to find clear answers to the ‘’why?’’ question. I would also say that pharma companies can get away with these high prices because of the way that the system is set up.
T1International does a cost survey every two years to explore the price that people pay out of pocket for their insulin and supplies. We did one in 2016 and again in 2018. Although people in the U.S. are paying the highest dollar amount for their insulin and supplies, people in every part of the world spend huge portions of their monthly income. This demonstrates that the insulin companies will charge whatever they can get away with.
In the U.S., they can get away with charging hundreds of dollars per vial. Of course there are other players that are also benefiting from the high prices, but these companies are at the top of the chain. They could lower the price to $5 tomorrow if they wanted. They have that power. But instead, people are dying from rationing their insulin while they bring in billions of dollars in profits, continuing to put profits over people.
What do you think needs to change in the United States, to improve people’s ability to access and afford insulin? What would be a good first step?
We feel strongly that transparency is the best first step towards finding the best solutions to this crisis. All players keep passing the blame: the pharma companies are blaming PBMs, PBMs are blaming pharma companies, and insurance companies also get blamed. It’s time to shed some light on what’s happening so we know how we can best tackle this issue. That’s what a lot of the T1International Chapters are pushing for as a first goal, as we saw in Nevada with the transparency legislation.
As referenced above, a recent study showed that the cost to produce a vial of analogue insulin was somewhere between approximately three and six dollars. Yet insulin is being sold for many, many times that amount per vial. If we could get actual answers for the cost it truly takes to produce a vial, and the amount of profits that are made on each vial, that would show us whether the blame passing is legitimate or not. Spoiler alert: we know it’s not.
There is a piece on our website covering eight reasons why the cost of insulin is so expensive. It illustrates how so many factors are influencing the system to push the costs up and prevent real action. We need to tackle each of those issues in its own way in order to properly address the problem. Unfortunately there is no one thing that would fix things perfectly, but shedding light on the issue, the true facts, and pulling back the curtain is going to help us get a lot closer to the ultimate fix.
In an ideal world, what does insulin access look like for people with T1D? Is there a country whose model would be good to emulate?
I grew up in the U.S., but I now live in the UK, and I have access to the National Health Service (NHS). I pay my taxes, which are completely reasonable amounts, and I am covered. If I need medicine, care, or treatment, I have access to it. I do not have to wrangle with insurance companies, spend hours on the phone querying bills, or wondering when am I going to get my medications. I go to my doctor for a prescription and then I can go to the pharmacy, pick up what I need, and I don’t pay anything. The first time I experienced this, I was in awe.
The system isn’t perfect here in the UK, but its multitudes better than the U.S. system. Health is viewed as a human right here in the UK. I would choose the NHS anytime over the U.S. system. If we can get to a place where health is seen as a human right in the USA, whatever form that may take, then people with Type 1 diabetes won’t be dying.
Short of nationalizing healthcare, is there any fix that can be made within the current system in the United States to improve access?
In a broader sense, the people that are causing insulin to be so unaffordable need to be held accountable. In the system that we have, so many politicians are bought off by big donations from pharmaceutical companies. If you look at who funds your Senator, for example, more than likely the big insulin manufacturers and other big healthcare companies fund them. Therefore they stay quiet on the issues or fight in pharma’s corner rather than fighting for patients. Instead of representing their constituents, many politicians are representing corporate interests. So having stricter regulations in that sense would make a difference.
Do you think there are any ways that patient advocacy groups can work together with industry on issues of affordability and access?
It is important to distinguish between taking funding from, and working with, industry. Sometimes there’s a bit of both happening. For T1International, this presents a conflict of interest. Even if a company isn’t overtly controlling the actions of an advocacy organization, they will be — even subconsciously — influenced in the way they respond to certain issues and they will be much less likely to criticize their donor. Studies on this issue have shown that this issue is real and quite problematic. This is why T1International accepts no funding from pharma companies or any organization that would compromise our ability to advocate for patients.
When it comes to working with the industry, we are always open — to some extent — to dialogue with them. One of our advocates, Nicole Smith-Holt, met with Eli Lilly executives last year. She had a very candid conversation with them about her son dying from rationing his Humalog insulin. They showed sympathy and promised to do better, but they did not follow through. This shows us that dialogue can only go so far. Platitudes and empty promises are not enough when people are dying because the cost of insulin is too high.
These companies know what’s happening. They know people are dying. They know the prices that they’re charging are unacceptable. Until legislation changes and there are laws in place that require these companies to act differently, it is highly unlikely that they are suddenly going to become benevolent and choose patients over profits. They have their shareholders to account to, after all. So working together with industry can only get patients so far, and going in circles while people are dying is not going to solve things.
What are some ways to get involved with advocacy around insulin access?
Join your State Chapter! We have a map on our website where you can see if your chapter is up and running. There are links to get involved. Most Chapters have been started by people who haven’t done advocacy or gotten involved politically before. It’s amazing to see what they’ve achieved in a short period of time. They are genuinely making change and it’s a hugely refreshing perspective to see in state level politics and advocacy. If you don’t have a chapter we can talk to you about starting one.
Our website also has lots of resources. There’s information about how to contact your representative, facts, and guidance. Learning as much as you can to understand the issues will allow you to educate others and those who represent you. If you don’t have time to volunteer, you can donate in support of our Chapter work and our global work to push for sustainable solutions to the global insulin price crisis.
Focus on Access Editorial Disclosure: The position presented above is solely that of the author. Other than fact-checking and formatting, Beyond Type 1 has not edited the content of this post. Additionally, T1International was a 2016 Grantee of Beyond Type 1.
Originally posted HERE