Diabetes patients are finally starting to beat Big Pharma’s price gouging

This article Diabetes patients are finally starting to beat Big Pharma’s price gouging was originally published by Waging Nonviolence.

T1International was born out of anger.

Elizabeth Pfiester had lived with type 1 diabetes since she was four years old. The daughter of a Monticello, Illinois railroad worker and library clerk, Pfiester and her family together had to learn the daily regimen of insulin injections, finger pricks for blood testing, and constant fear of blood sugar spikes and crashes. Fortunately, her dad’s railroad job provided solid health coverage, which got even better when Pfiester enrolled in the London School of Economics, where she qualified for the U.K.’s National Health Service program.

But Pfiester’s graduate studies and volunteer work at various diabetes advocacy groups showed her that everyone with her condition did not share her experience of consistent access to insulin and supplies. Even though injectable insulin was invented over a century ago by a University of Toronto research team who sold their patent for a dollar to ensure everyone in need could get the medicine, Pfiester learned that half of the eight million people in the world living with type 1 cannot consistently afford their insulin and supplies. That included the U.S., where a vial of insulin manufactured for about $4 was being sold for over $300.

For a person living with type 2 diabetes, inability to access insulin can be incredibly dangerous. For a type 1 patient, whose pancreas is fully unable to produce insulin, it is a death sentence. Even with good care, Pfiester’s diabetes has been difficult to control, leading to multiple frightening hospitalizations.

“In a lot of countries, I would not have survived long past my childhood diagnosis,” she said, which made her mad. “The more I learned, the more I was stunned by how little visibility there was for the fact that people were dying or struggling with intense complications.” So in 2012 she started writing and publishing a blog, sharing the research she uncovered and the lived experience of herself and others she began corresponding with.

The type 1 patients Pfiester connected with bonded not just over the struggle of living with the disease but also being largely ignored by the existing diabetes advocacy organizations led by researchers, physicians and professional advocates. “When patients talked about the situation we faced, it almost always circled around to the feeling that we did not have a voice, that no one was truly fighting for us,” Pfiester said.

The type 1 patients discovered that these large non-profits who were not calling out the insulin manufacturers on price gouging were building their budgets on massive donations from those same manufacturers. Research on advocacy groups showed that they took in more than a $6 billion in funding in pharma industry donations between 2010 and 2022. Over that period, the American Diabetes Association alone received more than $18 million in funds from insulin manufacturers Sanofi and Eli Lilly. When Pfiester and other patients questioned these practices, they were accused of being too shrill, not understanding the practical realities, or ignored altogether.

A blog was not going to be enough.

‘Nothing about us without us’

From a corner of the living room in a one-bedroom North London flat she shared with her husband John Rowley, Pfiester — then 25 years old — launched T1International. At first, it was not clear exactly how the new non-profit organization would push the cause of insulin and supplies access. But a few principles were non-negotiable. First, the organization would be patient-led. “We don’t want to create stratification between our allies and people living with the disease, but there is a sense of urgency and depth of understanding that comes from this being an inescapable part of our survival,” Pfiester said.

Previous Coverage

Diabetes patients are leading a new access to medicines movement

The ”nothing about us without us” mission of T1International was an ethical commitment and a response to the missing patient voice in the diabetes advocacy arena. (See this 2019 Waging Nonviolence article about T1International’s early advocacy.) But it is also a demonstrably superior strategic approach to achieving policy reform in the face of powerful opposition like the pharmaceutical industry, which spends tens of millions of dollars annually just on U.S. lobbying and political campaign contributions. Generations of social movement history show that the most dangerous foil to breathtaking wealth and power like this is advocacy led by the people most affected by the injustice themselves.

“There is always an important role for the expert, the policy researcher, for those gathering evidence,” said Diarmaid McDonald of the Just Treatment campaign in the U.K., a longtime supporter of TI1international. “But there will be very little change if you don’t have direct patient advocacy to decisionmakers.”

In fact, patients have taken on Big Pharma before — and won. The landmark HIV/AIDS treatment movement of the turn of the century was led by passionate, determined patients who made it clear to the world that they were fighting for their lives. As one HIV-positive activist said at a protest, “You are denying me drugs. Look me in the face and tell me to die.” Eventually, the multinational pharma companies cracked. Antiretroviral drug prices plummeted over 90 percent overnight, saving millions of lives.

T1International’s second founding principle was a no-compromises refusal to accept a penny of pharma industry money. Pfiester and others had witnessed pharma-funded patient advocates pulling their punches often enough to know the impact that industry donations could have. “Once you’re getting money, you pretty well know that if you start criticizing the company, you’re not getting another grant,” said Sharon Batt, professor of bioethics at Dalhouse University in Nova Scotia, Canada.

The decision to shun the most reliable form of advocacy funding limited T1International’s resources from day one. But it also was liberating. Without the conscious or even subconscious fear of upsetting their funders and informed by the daily survival struggle of its patient leaders, the organization immediately began demanding bolder reforms than other groups dared to propose. “T1Iinternational, being independent and genuinely patient-led, has been able to take positions ‘left’ of mainstream access to medicines organizations and has helped to move the Overton Window,” said Christopher Morten, director of Columbia Law School’s Science, Health and Information Clinic.

Morten and his students have worked with T1International on efforts to release the intellectual property and licensing stranglehold that pharma companies try to place on insulin and other essential medicines. Those efforts include pushing for publicly-manufactured insulin. “Ten or even five years ago, patent reform was the horizon of many people’s imaginations, which means folks were still thinking of relying on markets and for-profit actors for medicines and other health care,” Morten said. “Now public pharma and other more transformative reforms are not just under discussion but happening. T1International is one of the patient groups that led this charge — probably the patient group that has had more to do with the groundswell of public insulin efforts than any other.”

The lack of pharma money to fund a large staff had another positive effect: it forced the organization to rely on its fast-growing network of type 1 patient advocates. Living with the disease can be exhausting and stressful, but thousands of patients have organized into T1International chapters or affiliates across all 50 states and over 20 countries. Sa’Ra Skipper of Indianapolis is one of those patients. As young adults, Skipper and her twin sister Shelby, who also has type 1, were forced to share their insulin, which cost them $1,000 per vial. Shelby almost died as a result. “People with lived experience can provide the most compelling examples of the problems, since we live with the life-and-death consequences every day,” Skipper said.

Advocates like Skipper lobby lawmakers and regulators, and they conduct social media campaigns including the viral #insulin4all campaign that dates back to 2014. They support price-fixing litigation against the insulin manufacturers and have created working groups for communities of color affected by insulin access and families who have lost a loved one due to insulin rationing. The families group is led by Nicole Smith-Holt, whose 26-year-old son Alec Smith died in 2017 after rationing the insulin that cost him $1,300 a month once he aged out of his parents’ health insurance. T1International advocates have been featured in media profiles and interviews in outlets including New York Times, the BBC, CBS News, and in a documentary “Pay or Die.”

Both Skipper, who helped create the communities of color group, and Smith-Holt have testified in front of Congressional committees. In December of 2021, Skipper met with Joe Biden in the White House. “Working two jobs, sharing insulin from the same vial — in America?,” Biden said in his public remarks following their meeting. “Shame on us as a nation if we can’t do better than this.”

“That was surreal,” Skipper said. “When I was first invited, I felt like an imposter or that I was trauma dumping. But then I realized that I had a responsibility to others who weren’t there, and I was carrying their stories with me.”

‘Patients over profits’

As pressure on pharma companies increased, they responded by issuing a series of dramatic announcements of new plans that appeared to solve the insulin crisis. Media and lawmakers would react with glee to announcements of price caps and corporate patient assistance programs. But the patient experience served as an instant fact-check on Big Pharma press releases, and other advocates learned to turn to T1International to interpret the true impact of high-profile pledges.

“Often patients are the only ones who discover that flashy promises of discounts or new programs don’t affect the reality they are living with every day,” said Dana Brown of Democracy Collaborative, which advocates for public alternatives to the for-profit pharma industry.

So, no, so-called $35 insulin price caps are nothing of the sort. Despite excited statements coming from the highest level of government, these limits only applied to co-pays for those who have insurance, and then only after deductibles are met. Neither Nicole Smith-Holt’s son nor Sa’Ra Skipper’s sister would have been helped by co-pay limits, since they worked jobs without insurance coverage. Discounted medicines announcements also don’t mean much when patients report months later those medicines are not available in their local pharmacies. Many patients are not eligible for the coupons or vouchers issued through patient assistance programs. The programs also have coverage limits, and they open the door to creepy corporate data collection on applicants. “Focus on the list price,” became the core T1International talking point.

So T1International kept pushing. Its most visible actions were repeated demonstrations outside the Indianapolis headquarters of Eli Lilly and Company, one of the three major global insulin manufacturers. Patients and loved ones marched with signs saying “Greed Costs Lives” and rebranding the company as “Killy,” finagled tickets that allowed advocates to crash Lilly shareholder meetings, and confronted company executives face-to-face. The protests were covered by National Public Radio and other media.

In 2019, a candlelight vigil outside the Lilly headquarters featured family members of loved ones who died from lack of insulin sharing the stories of their loss, clergy offering prayers and finally a tearful Smith-Holt being arrested for intentionally trespassing while reading out the names of the deceased loved ones. T1International has returned to Lilly in the years since, holding press conferences with the company logo in the background and marching around the building chanting “patients over profits.”

Yet the other pharma giants seemed bullet-proof. Despite all the negative attention, Lilly alone made $6 billion in profits in 2022. “For years, it felt like we were getting nowhere,” Smith-Holt said. “Legislators and others were taking meetings with us, and all kinds of people wanted to talk about the problem. But we were not making any movement toward the ultimate goal.” As recently as March of 2023, the list price for a single vial of insulin was still nearly $300, with many type 1 patients needing the equivalent of two or three vials each month. Deaths of type 1 patients who rationed their insulin continued to mount.

Then T1International started to win.

‘An issue that couldn’t be avoided any longer’

The biggest victory happened in March of 2023, when Eli Lilly announced it was slashing the U.S. price of its generic insulin to just $25 a vial, a whopping 70 percent decrease. The two other major insulin manufacturers, Novo Nordisk and Sanofi, quickly followed suit with even bigger reductions. The Lilly announcement was made while T1International staff were meeting on a video call. When the news was relayed, Pfiester’s reflexes kicked in. This was just more shadows and mirrors from the drug companies, she said. “The others on the call had to keep insisting to me, ‘No, it’s really the list price,’” Piester recalled. “It still has some limitations, but this felt like an affirmation of what we had been doing all those years.”

That affirmation came from all directions. The New York Times article on the news said Lilly’s announcement was “seeking to quiet an outcry about excessive drug prices” and quoted Pfiester. The Washington Post cited “intense public pressure” and interviewed Skipper. “By creating the pressure and making the demand for affordable insulin mainstream, T1International’s work helped make it an issue that couldn’t be avoided any longer,” Dana Brown said.

The nationwide insulin price cut came amidst a growing pile of state-level wins. In Smith-Holt’s home state of Minnesota, her years of personal lobbying and testimony and media appearances had led to the Alec Smith Insulin Affordability Act, signed into law by Gov. Tim Walz in 2020.  The law includes access to emergency insulin and long-term price reductions. Seven T1International state chapters helped convince legislators to cap insulin co-pays in other states.

T1International patients have advised the state of California in its plans to partner with non-profit drug manufacturer Civica Rx to manufacture its own supply of low-cost insulin. They work with Maine and Michigan on those states’ own plans for publicly-produced insulin. In August, Medicare announced newly-negotiated prices for insulin that reduce prices for Medicare beneficiaries by as much as 76 percent.

These are U.S.-based victories, though. In some places around the world, insulin costs still swallow up more than half of the average family income. “After the U.S. price cuts were announced, we had some awkward calls with international advocates in places like India and Tanzania,” Pfiester recalled. “They were very happy for the U.S. advocates, but it left unsolved the problem of affordability in their communities.”

Most diabetes organizations avoid those uncomfortable conversations by focusing on the needs of patients in the Global North. That plays right into the hands of the pharmaceutical industry, Chris Morten said. “Drug companies follow the script of capital overall and try to divide coalitions,” he explained. “In this case, they will say that if we lower the price of medicine in places outside the U.S., then Americans will have to pay more for innovation.”

T1International rejects that script. They work with patient advocates who helped win the right for students in India to check blood sugar and administer insulin during school exams, who eased the importation of insulin in Panama, and convinced Palestine’s government to provide free insulin pens.

Sub-Saharan Africa has been particularly ignored by many medicine access advocates, says Vivian Nabeta, founder and executive director of the Sonia Nabeta Foundation. The foundation is named after Vivian’s sister, who grew up in Uganda and died from complications of type 1 at age 24. T1International and the Nabeta Foundation have trained patient advocates in Uganda, Ghana and South Africa. “We are working together to ensure that people living with type 1 in Africa finally have a voice and presence on the global stage,” Nabeta said.

The global advocacy has its own signature victory, too. The World Health Organization’s Essential Medicines List is used by many countries to determine which drugs its health systems will purchase and circulate, making the list a determining factor in what care is available in thousands of communities across all continents. Long-acting insulin analogues, which improve quality of life because they can be dosed just once a day, were long absent from the list.

When they began to investigate why, T1International advocates were stunned to learn that some influential diabetes experts were actually discouraging the WHO from adding long-acting insulin analogues to the list, presumably for cost reasons. This echoed the early years of the HIV/AIDS crisis, where scholars and physicians argued for a focus on prevention while arguing that the available life-saving treatment was impractical and too expensive.  

So T1International flooded the WHO with statements of patients who testified to the huge benefits of long-acting insulin. One of those advocates, Sobia Aziz Siddiqui, a representative of one of T1International’s advocacy partners in Pakistan, said, “If I could use and have access to long acting insulin analogues, my life would definitely be more smooth and less scary.”

In October 2021, the WHO responded, adding long-acting insulin to the list. “This was a huge step away from two-tiered health systems, where the rich get ‘good’ insulin and the poor only can access the older, less effective forms,” Pfiester said. Last year, T1International’s continued lobbying led the WHO to add it to the list again, this time including disposable and reusable pens with cartridges for human insulin.

Not fast enough

Placement on the WHO essential medicines list does not always translate into affordable access, a problem T1International’s “Fight for 5” campaign targets. The goal is for the out-of-pocket cost for a patient’s insulin and supplies in every country to cost no more than five percent of the country’s median income. The campaign represents a concession to reality that Pfiester admits does not sit comfortably with her and others whose national health systems do not charge for prescriptions.

“Ideally, we would have universal health coverage, and no one would have to pay at all for the medicine and supplies they need to survive,” she said. “But that does not seem to be coming soon in a lot of areas in the world, so in the meantime the five percent cap is something we can aim for and measure.”

Meanwhile, T1Iinternational is not shying away from calling for systemic solutions. Recognizing that even the dramatic 2023 U.S. price cuts can be reversed whenever the companies choose, T1International’s legislative agenda centers around a price cap. For example, the Insulin for All Act sponsored by Sen. Bernie Sanders and Rep. Cori Bush would limit the price of insulin to $20 per vial, regardless of insurance status.

But, with just three companies manufacturing 96 percent of the world’s insulin, supply gaps are a real danger, perhaps especially if prices are controlled. Enter T1International’s work supporting public manufacture and distribution of insulin. It is a stance that has put an extra hurdle in front of its fundraising efforts. Most philanthropic foundations trace their origins to capitalist excess, so even many funders who are concerned about the cost of medicine don’t like talk of bypassing the for-profit system altogether.  

Like most advocacy groups, seeking these philanthropic dollars is a perpetual concern for T1International. For some in the organization, that concern is compounded by the fact that Pfiester is finally following through on a long-planned step away from her role leading the organization.

“I don’t know if there is another person alive who could have accomplished what Elizabeth has,” Dana Brown said. “Anyone with type 1 can tell you that just trying to manage the disease itself is exhausting. But somehow she managed as a very young woman to have the guts to go after what she saw was this huge unmet need in the world. When she started to make it happen, everyone flocked to her.”

Pfiester herself is not worried about the transition. She praises fellow type 1 patient and T1International policy and advocacy director Shaina Kaspar, who is stepping into the executive director role. More importantly, says Chris Morten, the democratic, diffuse, patient-led character of T1International means it will survive the departure of even its founder. “Elizabeth has allowed others to lead, and that is the best kind of leadership,” he said.

Even on the eve of her departure, it is not in Pfiester’s nature to claim victory. When asked to reflect on her tenure and accomplishments, her first response is to point out the number of people globally who still struggle because they can’t access insulin and supplies. Finally, she allows that the 2023 U.S. list prices drop and the WHO adding long-acting insulin to the Essential Medicines List were gratifying victories.

But she says it is the less visible wins that resonate even more. “Day to day, hearing from diabetes community members that they have a place where they feel safe and supported means so much, and it is great to hear whenever an individual or organization is rethinking their pharmaceutical industry ties,” she said. “Giving folks the tools they can use long into the future feels like we are on the right track. … Even if the change isn’t happening fast enough!”    

This article Diabetes patients are finally starting to beat Big Pharma’s price gouging was originally published by Waging Nonviolence.

People-powered news and analysis

Source: https://wagingnonviolence.org/2024/10/diabetes-patients-finally-starting-to-beat-big-pharma-price-gouging/