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 can be viewed here. Part Two:
Persons living with Type 1 diabetes continue to struggle, but the advocacy has seen some significant progress. 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.”
James Elliott of T1International (Photo: Robert White)
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.
“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. 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,” Pfiester said. “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 says. “This is not to say external experts, volunteers, politicians, clergy, and well-meaning people have no role. But their role is one of support.”
Patients Have Defeated Big Pharma Before
Social movement history backs up Elliott’s analysis. As he and Pfiester 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 1980’s and ‘90s led by the AIDS Coalition to Unleash Power, or ACTUP, and then the global access movement of the turn of the century led by organizations like the Treatment Action Campaign of South African were led by patients.
They, like current activists with Type 1 diabetes, 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 says. “It is not an abstraction for us, and that is what will carry us to serious and lasting change.”
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