Elizabeth Pfiester was diagnosed with Type 1 diabetes at age four. To this day, she struggles with regular bouts of crashing blood sugar lows, which can trigger a seizure, and spiking sugar highs, which can lead to diabetic ketoacidosis. Like many others with Type 1, Pfiester has endured multiple emergency hospitalizations and near-death experiences.
All of which makes her a perfect leader for a fast-growing movement.
“Patients will be the moving force behind sustainable change for access to medicines, as they have throughout history,” said Pfiester, the founder and director of the advocacy group T1International. “Because, for us, it’s a matter of life or death.”
An access to medicines movement led by policy wonks, professional activists and health care professionals is not a recipe for success.
Popular anger about prescription drug prices is building, especially in the United States. Multiple polls show Americans naming medicine costs as the top issue Congress should tackle. The people know that corporations gifted with monopolies on government-discovered medicines are making breathtaking profits price-gouging the sick. Half of all Americans skip filling prescriptions or go without other care each year due to cost.
Consider the case of insulin, the medicine Pfiester and others with Type 1 — and many people with Type 2 diabetes — rely upon for survival: A vial of insulin that cost pharmaceutical corporations only about $6 to manufacture is priced as high as $300, an increase of more than 1,000 percent since the 1990s. As a result, one in four Americans with Type 1 diabetes is forced to ration their insulin, causing health emergencies and, too often, death. The three corporations that have cornered the global market report annual profits that are double the average of other Fortune 500 corporations.
In response, Washington-based advocacy groups are making drug prices a lobbying priority, and medical and economic researchers are issuing strongly-worded reports. Elected officials are introducing legislation demanding change. Yet, all of this sound and fury, and the grassroots frustration that has triggered it, has so far translated into little more than sound-bite rhetoric from leading politicians. To date, there has been no meaningful reform.
Why haven’t things changed? The pharmaceutical industry’s substantial lobbying and political campaign contributions certainly play a role in maintaining the status quo. But the history of social movements suggests another reason for the disconnect between public opinion and enacted policy: An access to medicines movement led by policy wonks, professional activists and health care professionals is not a recipe for success. The lessons of the civil rights movement, the labor movement, the anti-apartheid movement and beyond teach us that real change will only come when those most affected are leading the push.
Fortunately for the millions who struggle to afford the medicines they need, patients are rising. Foremost among them are people with Type 1 diabetes, many coming together under the banner of T1International, founded by Pfiester in 2014.
T1International has preserved an uncompromising patient voice by refusing all pharma donations.
Pfiester was once an enthusiastic volunteer with well-known diabetes patient advocacy groups like the American Diabetes Association and JDRF (formerly Juvenile Diabetes Research Foundation), and later worked for JDRF in the U.K. for a time. “Then I noticed that they all took large sums of money from the companies that sell insulin,” she said. The groups are not required to disclose all donor data, but the available information paints a picture of non-profit organizations dependent on donations from for-profit pharma corporations. The American Diabetes Association, for example, has admitted to taking over $18 million in pharmaceutical funding in 2017.
A recent New England Journal of Medicine report revealed that at least 83 percent of the largest non-profit disease and patient advocacy groups accept pharmaceutical industry donations. The researchers estimated that the number would be higher if the remaining groups disclosed donor data. As the study’s lead scientist, Matthew McCoy, told Kaiser Health News, “The ‘patient’ voice is speaking with a pharma accent.”
Unsurprisingly, Pfiester found that the major diabetes patient groups declined to bite the hand that feeds, refusing to point the finger of blame at their donor pharma corporations that enrich themselves by hiking up the cost of insulin. So, in 2013, while Pfiester was a student at the London School of Economics, she started a blog about the struggle people with Type 1 face and the corporate greed that fuels the crisis. Within a year, the blog evolved into the formal organization of T1International, which from the beginning has preserved an uncompromising patient voice by refusing all pharma donations. (Besides T1International, a notable exception to the phenomenon of pharma-dependent patient groups is Patients for Affordable Drugs, founded by cancer patient David Mitchell.)
On World Diabetes Day in 2014, T1International helped launch a social media campaign with the hashtag #insulin4all, a call to action that has defined a fast-growing movement. T1International patients have conducted multiple demonstrations outside pharma corporation headquarters, including one supporting a dramatic face-to-face confrontation between Eli Lilly executives and Nicole Smith-Holt, the mother of Alec Smith, a young Minnesota man who died in 2017 after rationing his Lilly-produced insulin.
In support of an agenda that includes mandated transparency for drug corporation development and manufacturing costs, emergency insulin access without a prescription, and insurance co-payment caps on insulin, people with Type 1 have testified in Congress and in multiple state legislatures, defied U.S. law with high-profile importation of insulin from Canada and conducted civil disobedience in front of pharma headquarters, all while building a network of more than 30 volunteer-led U.S. state chapters. T1International conducts the world’s largest type 1 diabetes access survey, and their work has been featured in the New York Times, The Lancet, NPR and CBS News.
This activism must be patient-led if it is going to be successful, says James Elliott, a T1International trustee living with Type 1. “We have seen so many health campaigns come and go, on insulin as well as other issues. The ones that last, that have impact, are always driven by people who are actually living with the condition,” he said. It is not enough to simply add in patients to an existing organization, or pull them onstage at a press event to share their stories, Elliott added. “Having non-patients trying to organize on behalf of patients is like a car factory being organized by a group of labor professors from a different state. It’s just not going to work.”
The struggle continues, but there has been progress along the way. Multiple state legislatures have passed transparency and emergency insulin access laws, Colorado has adopted an insulin co-payment cap, and T1International is helping advance the big-picture solution of public manufacturing of insulin. “Every success we have had is because people are speaking their truths, sharing their stories, and demanding better for themselves and their fellow patients,” Pfiester said. “Without patients in the lead, our authenticity would be in jeopardy.”
Patients have beaten Big Pharma before
Yet the path to patients making an impact is often not a smooth one. T1International pays a financial price for not accepting corporate donations that fuel other patient groups. For several years, Pfiester worked for little or no salary, and still runs the organization out of the living room of her apartment. Pfiester and her colleagues also face the need to manage their disease along with their activism.
“Ultimately, organization must come from within the patient community, by the patient community.”
“Advocacy is exhausting, even without a chronic condition in the mix,” Pfiester said. “Living with Type 1 diabetes means lots of ups and downs and health challenges. The mental load of Type 1 diabetes means we are thinking and worrying about our blood sugars 24/7. So, to have that weight on top of the worry of accessibility and affordability — plus to choose to fight for ourselves and others — is a lot to take on.”
Unfortunately, allies in the access to medicines movement sometimes add to the load. Many times, the health care advocacy model mimics the care and discovery models, which highlight the expert physician or determined researcher. In that scenario, patients are the passive — often helpless — beneficiaries of the professionals’ selfless calls for better treatment. They are expected to share their compelling stories, express their gratitude, and leave the strategizing to the experts.
“Often, patients are not taken seriously in advocacy circles, which is infuriating on many levels,” Pfiester said. “Unless we also have certain degrees, our experiences are often diminished or not taken as seriously as ‘experts,’ despite the fact that we actually live and breathe our health condition. Patients are rarely in the room, part of discussions and strategy planning for policies or campaigns that impact us directly.”
Elliott echoes this frustration. “Ultimately, organization must come from within the patient community, by the patient community,” he said. “This is not to say external experts, volunteers, politicians, clergy, and well-meaning people have no role. But their role is one of support.”
Social movement history backs up that analysis. As Pfiester and Elliott both point out, it was patients who won the access to medicines movement’s signature victories. The HIV/AIDS treatment campaigns, first the U.S. movement of the 1980s and ‘90s led by the AIDS Coalition to Unleash Power, or ACT UP, and then the global access movement of the turn of the century led by organizations like the Treatment Action Campaign in South Africa were led by patients. Like current activists with Type 1 diabetes, they made it clear to pharmaceutical corporations and the politicians who protected them that this was a fight for their survival. As one HIV-positive activist said at a protest, “You are denying me drugs. Look me in the face and tell me to die.”
Those patients ratcheted up the public pressure, “naming and shaming” their oppressors through demonstrations, media campaigns, and creative public advocacy like staged murder trials outside the gates of pharma corporations and the delivery of body bags to the White House. Eventually, the companies and the governments cracked. Antiretroviral drug prices plummeted over 90 percent nearly overnight, saving millions of lives.
Pfiester and T1International are following a similar script, in part because they honor the lessons of their predecessors, and in part because patient advocates have no other choice. They know that the corporations they confront are not going to happily surrender their insulin windfall profits. Instead, the companies are weaponizing the dollars they have extracted from people with Type 1 diabetes, diverting some of the billions raked in from insulin price-gouging to pay for lobbyists and political campaign donations and PR blasts.
But Pfiester and Elliott insist that the corporate millions cannot match the power of a movement led by people directly affected “Patients speak from a place where they know the issue because they live the issue,” Elliott said. “It is not an abstraction for us, and that is what will carry us to serious and lasting change.”