From Faith in Healthcare (https://faithinhealthcare.org):
Faith in Healthcare is grateful to the terrific social movement weekly publication Waging Nonviolence for publishing this article by our editor. We offer it here to Faith in Healthcare readers in two parts. Part One:
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,” says Pfiester, the founder and director of the advocacy group T1International. “Because, for us, it’s a matter of life or death.”
Elizabeth Pfiester of T1International leads a demonstration outside the headquarters of insulin manufacturer Eli Lilly and Company
Popular anger about prescription drug prices is building, especially in the U.S. 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 persons 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 U.S. people 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 plays 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.
Patients Rising
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.
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 says. 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 adds. “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.”
Next week, Part Two: How Patients Defeated Big Pharma Before
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