Yaa is struggling to keep a reliable Wi-Fi signal from Ghana, but Mohammad logs in on time from Kuwait. Anna had to relocate to a café in Austria to get connected. Johnpeter was hoping to call in, too. But he is in a rural part of Tanzania today, and an internet connection is nowhere to be found. The group Skype call has gotten off to a bumpy start. But no one ever said that building a global human rights movement would be easy.
Finally, Yaa and Mohammad link up with Apoorva from India, Anna from Austria and Karyn from the US. The call’s agenda is all about activism, but as the conversation winds down, the host, Elizabeth Pfiester in the UK, pivots to a personal farewell: “I hope everyone is having a smooth blood sugar day today. Mine has been kind of rocky.” The line is quickly abuzz with good wishes for Pfiester, and a lot of empathy. The heat is playing havoc with Mohammad’s sugars, it turns out. Apoorva’s levels are out of whack due to some exam-related stress; Karyn is recovering from a kidney infection that pushed her sugars high.
They have all been there, and that is the point. Everyone on the call has Type 1 diabetes, and all have committed to serving as volunteer advocates in their communities, with their work coordinated through a group called T1International, founded and directed by Pfiester.
The popular image of a crusading health care advocate is usually embodied by a compassionate physician or a determined researcher. In that scenario, patients are portrayed as the passive — often helpless — beneficiaries of the professionals’ selfless calls for better care. It’s not a good match with the model of a successful social movement, where those most directly affected are on the front lines. That was the structure of the civil rights movement, the anti-apartheid campaign and the labor movement, among many others. So T1International aims to flip the usual health care advocacy script, this time putting patients in the lead roles.
It is an important model. So far, enormous grassroots frustration with the price of prescription drugs, especially in the US, has translated into sound bite rhetoric from leading politicians, but precious little meaningful reform. Beyond the substantial lobbying power of the pharmaceutical industry, this disconnect between public opinion and enacted policy may be due to access to medicine advocacy being mostly led by policy wonks, professional activists and health care professionals. But now, the megaphone is being seized by the patients for whom drug pricing is a matter of life or death.
Founded in 2013, T1International focuses on advocacy by and for persons with Type 1 diabetes, a condition where the pancreas is completely unable to produce insulin, a hormone necessary to keep blood sugar levels in check. A person with the more common Type 2 diabetes has a low-functioning pancreas, so they may or may not need regular injections of insulin. By comparison, the estimated 30 million persons worldwide with Type 1 diabetes have no room for error: A consistent outside source of insulin is necessary for their daily survival.
In theory, this shouldn’t be a big problem. Injectable insulin has been around since the 1920s, when a University of Toronto research team led by Frederick Banting won the Nobel Prize for discovering how to extract insulin from an animal pancreas and inject it into a human. Banting and his colleagues sold their insulin patents for a dollar each, aiming to get the medicine distributed as far and wide as possible. As recently as the late 1990s, the standard 10 milliliter vial of the most modern form of insulin, a synthetic version of the original animal source, was priced at less than $30.
Then, starting around the turn of this century, prices started to rise dramatically. The three companies that dominate the global manufacture of insulin — Eli Lilly and Company, Novo Nordisk and Sanofi-Aventis — began ratcheting up their prices, almost always in lockstep with each other. (These companies are being sued and investigated for antitrust violations.) That same vial of insulin that cost $30 in the late 1990s has a list price of nearly $300 today. The companies keep the cost of insulin production a tightly held secret, but it likely costs them only a few dollars to manufacture the same amount they sell for hundreds of times that cost. Insulin pulls in global revenues of $26 billion and rising, and the three companies report annual profits that are double the average of other Fortune 500 corporations.
An endocrinologist writing in The New York Times calls this business model a “racket.” Insulin to treat Type 1 diabetes can cost half the average family income in some countries. Even in the comparatively wealthy US, many patients are forced to skip doses and ration their supplies, often leading to emergencies and even death.
The Unique Power of Patient Advocacy
Elizabeth Pfiester was only four years old when her parents, a railroad worker and part-time library clerk in Monticello, Illinois, noticed something was wrong. The little girl was losing weight when she should have been growing, had extreme thirst and struggled with flu-like symptoms. Pfiester was hospitalized, where her parents were taught the mechanics of daily injections, finger pricks for blood testing and administering emergency shots of glucagon if needed.
But the struggles continued. There is still uncertainty about the cause of hard-to-control diabetes, sometimes called “brittle diabetes.” But Pfiester is in that category: she is subject to regular incidents of crashing blood sugar lows, which can trigger seizures, and equally dangerous highs, which can lead to diabetic ketoacidosis. She almost died several times — once during a low blood-sugar induced seizure when a counselor at a camp for children with diabetes failed to administer an emergency glucose shot properly; and once when she went into high blood-sugar related diabetic ketoacidosis due to a chest infection.
The good news was that the necessary testing, insulin and professional treatment for Pfiester were covered by the solid health insurance associated with her father’s job on the railway. But as Pfiester went off to college, she knew the clock was ticking. Young adults in the US who have Type 1 diabetes and are fortunate enough to be covered under their parents’ health insurance are still always aware of a looming deadline: What is going to happen when they are deemed too old to be covered by their parents’ insurance?
In 2017, Alec Smith of Richfield, Minnesota, aged off of his mother’s insurance. The only options available through his full-time restaurant job or the Affordable Care Act exchanges were high-premium, high-deductible plans, leaving him to pay $1,300 a month out-of-pocket for insulin and supplies to treat his Type 1 diabetes. Smith couldn’t afford that, so he started rationing his insulin and tried to further control his blood sugar with a careful diet. Last June, he was found alone in his apartment, dead from diabetic ketoacidosis.
Pfiester’s enrollment in a graduate program at the London School of Economics made her eligible for treatment there under the UK’s comprehensive National Health Service program, sparing her that aging-out scenario. “I will never forget the first time I went to the pharmacy with my prescriptions and picked them up, walking out in awe because there was no co-pay, extra fee or anything,” she says.
Pfiester began writing a blog about Type 1 diabetes, with her graduate studies helping push her focus toward the international problems. Some estimates are that half of all persons with Type 1 diabetes globally do not have consistent access to insulin. In many countries, children with Type 1 regularly die before they reach adulthood, and a lack of insulin is the leading reason why.
At the same time, Pfiester was working with some of the major diabetes advocacy groups. But she did not see them paying much attention to the crisis in poorer countries, or even to the dramatic rise in the cost of insulin. “I started to notice that most diabetes organizations — especially the big ones like the American Diabetes Association and JDRF (formerly Juvenile Diabetes Research Foundation) that I had supported previously — took large sums of money from the three companies that sell insulin,” she says.
The groups are not required to disclose all donor data, but a recent New England Journal of Medicine report revealed that at least 83 percent of the largest nonprofit disease and patient advocacy groups accept pharmaceutical industry donations, a number that would almost certainly be higher if more donor data was disclosed by the remaining groups. In 2015, the American Diabetes Association alone received $2.5 million from insulin manufacturer Eli Lilly.
The major diabetes patient groups avoiding the insulin-pricing crisis created a vacuum in which T1International was born. Pfiester’s blog evolved into a formal nonprofit organization that refused any pharma industry donations and committed to leadership by persons with Type 1 diabetes, not well-meaning health or advocacy professionals. As Pfiester points out, the signature victory of the global health movement — the turn-of-the-century HIV/AIDS treatment activism that defeated the pharmaceutical industry and won access to cheap antiretroviral medicines — was led by patients. “There is a unique power in hearing from people directly affected by a crisis,” she says.
Turning Lived Experiences Into Activism
T1International’s world headquarters is located in a corner of the living room of the second-floor flat Pfiester shares with her husband John Rowley outside Cheltenham, 100 miles northwest of London. When John leaves each morning for his job as a planner for the Cheltenham Borough Council, Elizabeth settles in front of the multiple screens of her computer and phones. On a recent visit, she was juggling Skype and email conversations, while trading Facebook messages with a US activist and WhatsApp voice messages with a Kenyan advocate.
It’s a lot to juggle, but Pfiester admits to near-obsessive attention to organization and detail. She laughs about her “perfect spreadsheets and project charts” as she opens her computer screens to color-coded rows corresponding to each advocates’ tasks and accomplishments. Pfiester’s sister Chelsea says that the everything-in-its-place approach is less a character quirk than a prerequisite for survival for her sister, one that applies to other patient advocates. “Keeping meticulous track of her blood sugar and counting her carbohydrates has been something Elizabeth has had to do every day of her life,” Chelsea says. “She knows what it’s like to be in the danger zone, where really tragic things can happen.”
To physician and health advocate Kate Armstrong, that realization gives Pfiester a special impact in global health circles and illustrates the important role for patient advocates. “I think that lived experience of struggling with a chronic illness and recognizing how others are even worse off in other settings is what drives her,” Armstrong says.
But Armstrong, who launched CLAN in response to her own son’s struggle with the chronic disease Congenital Adrenal Hyperplasia, says that uncomfortable conversations are an unavoidable part of being an advocate from the patients’ perspective. “Liz understands that, too. She is willing to say the things that make the room fall silent and leads to everyone feeling awkward,” Armstrong says. “But they are the truths that need to be told.”
Hence the endless cycle of T1International Skype calls, texts, emails and tweets. When Pfiester completes a full day working with advocates and allies in Europe and Africa, she turns her attention to T1International’s many supporters in North America. But she is not likely to be joining them there anytime soon. Although Pfiester misses her family support in the US, any return to her home country would mean going back to a place where health coverage for chronic diseases like hers is uncertain and expensive. When asked about the prospect of her sister returning home, Chelsea struggles to respond. “The health care system here is just so broken. So, as of right now, it’s not in the cards….” She takes a moment to compose herself. “And still, you hear people saying the US is the best country in the world….” Her voice trails off, and she has to stop again.
For Patient Advocates, the Struggle Is Never an Abstraction
On World Diabetes Day in 2014, Pfiester and T1International helped launch a social media campaign with the hashtag #insulin4all. The message has been featured in countless online memes and protest posters, has racked up over a million views on Twitter alone and has helped define a growing insulin-access campaign. It has been featured in two T1International-led demonstrations at the headquarters of insulin manufacturer Eli Lilly, the second one featuring a dramatic face-to-face confrontation between Lilly executives and the mother of Alec Smith, the young Minnesota man who died last year after rationing his Lilly-produced insulin. T1International conducts the world’s largest Type 1 diabetes access survey, the group’s work has been featured in Foreign Affairs, The Lancet and on CBS News, and the organization’s viewpoint has been solicited in venues from the United Nations to state legislatures to Yale University.
But Pfiester insists that the organization’s most important work happens in settings with far lower profiles, where T1International’s volunteer advocates organize for change, buttressed by group discussions, individual trainings led in person and online by Pfiester, and a detailed advocacy toolkit. From Kuwait to Kenya to Kentucky, patient advocates have pushed for better access to test equipment, anti-discrimination policies, and, of course, more affordable insulin.
When Ghana’s national insurance program supported only one vial of insulin per patient, even when the patient’s prescription called for several more, Yaa Bimpeh and others with Type 1 mobilized. “Elizabeth and T1International give us the tools we need to reach our governments. It is a megaphone that lets our voices be heard,” Bimpeh says. Petitions were drafted and delivered to the country’s ministry of health, and public pressure was ramped up. Last year, the one-vial limit was overturned.
Yet, challenges remain. Bimpeh, a nurse, has had a poorly treated Ghanaian teenager with Type 1 die in her arms, and several others have come close. When Pfiester hangs up from the Skype call with Bimpeh and the other advocates, she turns her attention to a new inquiry from a young woman from Jamaica. The woman is struggling with her diabetes in a country with too few trained specialists and limited access to supplies. She reports that she is losing at least one Jamaican friend a year to diabetes.
Pfiester receives calls for help like these every week. But when advocates are also patients, such tragic stories are never abstractions. “It’s very easy to feel and think how it could have been me,” says Pfiester. “I wouldn’t have survived long past my diagnosis had I been born in some of the countries we work with.”
So, she has a message for all who have a health condition, especially if they or others are struggling to afford the medicines they need: “First, make sure your health is taken care of. Then, if you have the energy, join us to advocate for changing this broken system.”