November 12, 2019
USA: the insulin affordability crisis and advocacy
The insulin affordability crisis in the US goes on. How is advocacy working to protect individuals dependent on their lives for insulin?
By Elizabeth Snouffer
Insulin affordability is a crisis in the United States. The retail list price for three vials (30 mL) of any fast acting analog insulin is $1025 US. Double that price if you include long acting insulin. Most adults and children with type 1 diabetes and type 2 diabetes use 20-50 mLs per month, either in vials (multiple injection) or pens and pumps which are more expensive forms of therapy. Insurance policies in the US have prescription deductibles (often ranging from $3000-6000), where once paid out, 20% more or less is required as payment. For people over 65 years on assistance, a Medicare coverage gap or “donut hole” forces people to pay for their insulin. Uninsured people with diabetes have the toughest time. Most of the deaths by rationing have occurred to young adults unable to pay the thousands of dollars required for insulin. However, many families with insurance across the US are struggling. It’s not clear just yet how many people in the US have already or will suffer further complications or early death.
Politicians, healthcare providers, industry and diabetes stakeholders can’t avoid the insulin affordability crisis in the USA. Insulin manufacturers testified before Congress, offered couponing, generics and assistance programs or hotlines without success. Thousands of news stories, including obituaries, have been written and broadcast. Doctors worry about caring for their patients. Vigils and protests have occurred across the country. People with diabetes are fighting for fairer pricing.
At this moment in time, US advocacy for the person living with diabetes who is dependent upon insulin is critical. Do I pay rent or buy insulin? is often quoted by people struggling to manage the cost. Polarization now exists in the US diabetes community. The division reflects those who work with industry (accept money) and those who don’t. Division hurts advocacy. DiabetesVoice.org asked the most visible diabetes advocates working on behalf of people in the US, for a response to the following question:
We received 3 responses out of 31 invites.
The T1International Team
One of T1International’s founding principles is our refusal to accept money from the pharmaceutical industry. We have seen time and again that patient advocacy organizations and advocates that do work with these companies are often less willing to criticize the insulin manufacturer’s practices – practices that are contributing to patient deaths. While there are plenty of players in healthcare that contribute to our broken system, the problem starts at the top, with list prices set by manufacturers. Many of the deaths that we have seen in the U.S. diabetes community are among the uninsured, and though pharmaceutical companies are more than willing to place blame elsewhere, it is not PBMs or health insurance companies who are at fault when the uninsured are dying.
Pharmaceutical companies often tout their helplines and coupons, but these programs form a patchwork system that is not working for patients. Studies have shown that one in four Americans are still rationing their insulin, and in June 2019 alone, at least four Americans died due to the exorbitant cost of insulin. Eli Lilly, Sanofi, and Novo Nordisk know patients are dying. Eli Lilly’s Mike Mason met with Nicole Smith-Holt in May 2018. The companies also knew about studies that highlighted the high number of patients who have been rationing in the United States. Despite knowing about the growing crisis, it took mounting pressure by advocates and investigations by Congress before these companies suddenly chose to offer “half price” alternatives, which are still substantially more expensive than analog insulin formulas are in many other countries.
It should be noted that the pharmaceutical industry also actively lobbies against legislation in the United States that would make healthcare more transparent and help to lower drug costs. For example, PhRMA and BIO, trade groups representing companies in the pharmaceutical industry, sued the state of Nevada after they passed a drug price transparency bill. Political action committees (PACs) backed by the “big three” also donate hundreds of thousands of dollars to politicians who fight against legislation that would help to end the insulin price crisis.
In light of the practices and actions of the pharmaceutical industry, it is hard to believe that Eli Lilly, Novo Nordisk, or Sanofi have the best interests of patients at heart. All the PR stunts and repetitive talking points in the world don’t change the fact that while these companies are making the insulin patients need to survive, they are also taking advantage of patients who need insulin by driving up list prices and threatening lives. We have and will take part in conversations with pharmaceutical companies to suggest solutions – as long as those conversations are about how to lower list price. T1International will never accept donations from the pharmaceutical industry, and until we see genuine, good faith action to end the pricing crisis that they started, we will not work with these companies either.
T1International is a non-profit run bypeople with and impacted by type 1 diabetes for people with type 1 diabetes. The T1International team developed this response, led by Allison Bailey, U.S. Advocacy Manager, with support from the Trustees.
Jane K. Dickinson
In my work so far I have neither directly partnered with nor outright avoided Pharma. Were opportunities to arise, I would absolutely collaborate with anyone and everyone to improve our situation with regard to insulin pricing and device accessibility. I believe it’s important for every “stakeholder”/”player” – whatever you want to call those of us who take any sort of interest in diabetes – to be part of the discussion when it comes to advocating for people with diabetes. From what I’ve learned about the whole medication/device situation as it currently stands, there are many entities involved and pharmaceutical manufacturers are not solely responsible for where we find ourselves. I’ve seen the “algorithm” and it’s a complicated, confusing nightmare. In some ways it seems this would be the place to start – make it not just transparent, but break it down into simpler parts and chip away at fixing them one by one. It goes back to having appropriate representation at the “table” and figuring out a plan that works for the most possible people, most of the time. I see collaboration as the only way to engage in open and productive conversations.
Jane K. Dickinson, RN, PhD, CDE is a Program Director/Lecturer, Diabetes Education and Management at Teachers College, Columbia University, New York City, USA.
Many people in the US diabetes sector came to know me through my work in THE BETES®, a performing arts initiative that I founded to focus on whole-person health and care. We centered the importance of the connection between body, mind and mental health in the experience of chronic illness, complications and disability. After experiencing one of our programs, Mark Heyman, a well known clinical psychologist and person with diabetes, spoke of how impactful our work was. This was a common response: our programs were deeply transformative for the majority of the thousands of people with chronic illness, caregivers and clinicians who experienced and participated in them. I cherish these engagements to this day.
To fund my work, I was advised to do as the majority of U.S. diabetes nonprofit organizations do: attain corporate sponsorships from the diabetes industry. This meant attending the big diabetes conferences and setting up business meetings. It meant navigating complex ethical scenarios that arise from partnering with for-profit partners on mission-driven work. It also required thinking about the agendas of these funders.
Let me be clear: these corporate sponsorships made my work under THE BETES® possible. Some of the partnerships were very fruitful, and (almost) mutually collaborative.
But these contracts also meant something else: they required a certain silence from me. It took me a while to not only understand this, but to realize that it was happening. To make this silence crystal clear, let me share two moments with you:
In 2017, before I knew the extent of the insulin affordability crisis in America and wasn’t yet informed about its causes, I was composing a social media post about the soaring price of insulin. My hands froze above my keyboard when I realized that I was choosing my words very carefully with an eye to one of our sponsors, Novo Nordisk. In that moment, I realized how the influence of being aligned with industry takes hold. It often isn’t direct, but instead hidden and subtle, though profoundly palpable. This influence is often revealed by what is not said, rather than by what is. Another example of this is when the current CEO of JDRF, Aaron Kowalski said to me earlier this year that “the pharmaceutical industry is taking advantage of a corrupt [health] system” but did not say that the pharmaceutical industry’s behavior is itself corrupt and demands strong legislative action. The distance between these two positions is staggering and leads to very different advocacy actions.
As my hands hovered above the keyboard, I recalled what the funder had said to me back in 2015: “We want to leave an imprint on your organization.” In retrospect, what a bone-chilling warning that was.
Industry, the root causes of the crisis were never discussed. In fact, they were actively misconstrued, with blame placed on PBM’s and “other countries not paying their fair share.” What also was never vocalized was the extent of the pain being inflicted on people with diabetes in the U.S. by government-granted pharmaceutical monopolies that enables their unrestrained pricing to continue.
In 2019, after gaining much needed education and #insulin4all activism, I presented at the American Association of Diabetes Educators (AADE) annual conference. This time, I brought a small red sign. It said “Patients Over Profit”, a slogan that sets a clear moral compass for the purpose of medicine and healthcare. When I saw a well-meaning industry-aligned patient advocate in the hall, I invited him to hold the sign and take a photo. In response, he said to me:
“Now, you know I could get in trouble for holding that sign.”
How has stating that patients are more important than profit become controversial?
The response of this advocate echoes the predicament I found myself within when composing that social media post, and the main reason why I turned away from my own organization. I refused to be in that position. Worse, I never foresaw that I would be. The difficulty is that many patient advocates have tied their own economic livelihoods, and their identities, to the community that has formed around the economic interests of the pharmaceutical and biotech industries. There is nothing inherently problematic about this, except for the fact that these companies are engaged in abusive behavior against the very community they claim to serve.
There comes a point when silence about this becomes unacceptable. Where staying silent about the structural violence that these companies are inflicting on our community outweighs any benefit, any noble cause. For me, that moment came when I realized that my voice was no longer free. Nor could I pretend that I was serving the mental and social health of the diabetes community while staying silent about how families and lives are being broken, how communities are being vacuumed of resources. How lives are being destroyed!
This is about our right to life. What we have in America is a brutal system of abuse of patient communities by industry, and the price of staying silent about the abuse of power is ones integrity.
Marina Tsaplina is an interdisciplinary performing artist working in the field of the medical/health humanities and socially engaged art. She is an Associate of the Trent Center for Bioethics, Humanities and History of Medicine at Duke University where she serves as lead artist of Reimagine Medicine. She lives in Brooklyn, New York, USA.
Elizabeth Snouffer is Editor of DiabetesVoice.org