By: Keren Landman
The death of global health visionary Paul Farmer on February 21 came at a bleak moment for the world. In the wake of a badly botched pandemic response, the world’s most vulnerable face threats from a changing climate, rising regional violence, and the specter of the ripple effects of armed conflict in Europe. It can feel like a particularly hard time to find hope.
And yet a recurring theme across the deluge of obituaries and remembrances from colleagues and admirers of Farmer is his unrelenting optimism about delivering sophisticated medical care to the world’s poorest people.
Farmer’s rejection of cynicism and sense of moral clarity were foundational to his immense contributions to global health: He founded and grew the global health care delivery nonprofit Partners in Health to provide a high standard of care and treatment to everyone, regardless of their ability to pay. He also created a cultural movement within global health by teaching, writing, and speaking about the need to realign humanitarian work around moral rather than financial imperatives. His efforts helped prompt watershed changes to government spending and international agency guidelines with measurable impacts on illnesses and deaths.
But less well explored is how Farmer created a paradigm shift amid systems so resistant to change. The organization he co-founded stood up resilient health facilities and systems in some of the world’s poorest and most traumatized countries, and the institutions whose policies and budgets he helped change are not known to be nimble.
How did he succeed where so many others failed?
Luck and timing might have been on Farmer’s side, but clear patterns underlie some of his greatest successes in defying hopelessness and bringing about sustainable social change. For everyone grieving this premature loss of a warrior for the poor — and others just learning about Farmer for the first time — his life offers lessons on how to help people in need and create the communities we want. It can serve as a roadmap back to hope.
1. Engage communities in designing the solutions to their problems, and don’t blame them for their lack of resources
Farmer’s career began in the 1980s in a rural, arid part of Haiti called Cange, where he co-founded a clinic in collaboration with a local Anglican priest and another volunteer. In 1988, after three of the facility’s tuberculosis patients died of their disease despite free treatment, he asked its community what had gone wrong.
The clinic’s professionally trained health care workers felt the failures were the fault of forgetful or superstitious patients. However, other community members placed the blame squarely on poor living conditions: Without enough food to eat, access to clean water with which to take medications, and funds for travel to the clinic, people would not survive their disease, they said.
In response, Farmer’s team revised the clinic’s model around a core of accompagnateurs, community health workers trained to provide medications, health education, and support to other community members. Within the accompaniment system, these health workers helped identify and provide for patients’ basic needs. In short order, people stopped dying of tuberculosis.
Accompaniment now forms a cornerstone of the programs run by Partners in Health (PIH), the global health nonprofit Farmer co-founded in 1987. From its early days, the organization did things differently than many other donor-funded global health programs: Of the 18,000 people the organization employs, 99 percent are from the countries in which they work. That’s a far cry from the ethos of “parachuting in” that has defined some of the most maligned and ineffective relief work of the past several decades.
Farmer and PIH’s other founders grounded its mission in social justice the belief that people’s access to resources should not determine their access to a full package of medical care and social support that met their needs. Their concept of health equity might have seemed radical at the time — and while Farmer wasn’t particularly religious, many of his ideals were rooted in leftist liberation theology.
The framework’s focus on upstream causes of poor health — the systematic inequities he called “structural violence” — helped refocus the attention of reformers on the funders and policymakers. Their decisions determined a community’s health far more than the behavior of its individual members. The resulting pressure on pharmaceutical companies and multilateral institutions is what ultimately led to the furthest-reaching changes in Farmer’s lifetime, including revisions to the World Health Organization’s guidelines that expanded access to treatment for multidrug-resistant tuberculosis, and the establishment of PEPFAR and World Bank funding to support global access to HIV treatment.
2. Be willing to work within existing power structures, even if you don’t like them
Farmer’s respect for the concerns of his poorest patients was grounded in the skills he learned as a medical anthropologist, said Arthur Kleinman, his mentor and collaborator at Harvard Medical School — that is, what he learned about their everyday lives and worlds. But so was his willingness to engage with the donors who kept his organization afloat, the bureaucrats whose decisions helped expand its model, and the country and local health officials whose cooperation allowed his work to build capacity.
PIH, and Farmer himself, clashed with international players like the World Bank and the World Health Organization over policies that prioritized cost-effective interventions where larger investments could have saved more lives.
Although Farmer was often the most visible face of his organization’s work, some of Partners in Health’s most important work was done by his co-founders. In the agency’s early days, late-night conversations in Boston between Farmer, his PIH co-founder Jim Kim, and his co-volunteer in Haiti, Ophelia Dahl, led to a shared vision and mission among three people with different strengths. It was Kim who actually convinced the World Bank to broadly expand access to treatment for multidrug-resistant tuberculosis, and it was Dahl’s work that helped communicate PIH’s work and raise funds to support it.
Farmer felt it was necessary to work within existing governments and power structures, even when they were flawed. This was a matter of pragmatism, said Joia Mukherjee, chief medical officer at PIH: “We might want to blow up the system; we might want to just shout and holler. But at the end of the day, we are standing in front of a person who needs food, a person who needs medicine, and it’s not at all about our politics,” she said. “It’s really about getting people the lifesaving medicines and care that they need.”
The organization’s willingness to collaborate on long-term projects with the institutions others saw as obstacles ultimately led to changes within systems, among them the global embrace of community-based programs to treat HIV and tuberculosis.
3. Get the data you need to tell a good story
The early 2000s saw seismic shifts in global health funding to expand access to lifesaving medications. In the years prior, some of the most convincing data arguing for the change came from PIH’s work in Peru, which it conducted in defiance of global health practice at the time. There, 75 people treated for multidrug-resistant tuberculosis using the community-based accompaniment model had an 80 percent cure rate. That’s higher than the cure rates among patients in the United States, and it was enough to eventually convince the decision-makers in global health that treating the disease in the world’s poor was feasible. In a 2017 documentary about PIH — and in the organization’s communications materials — a young man from the hills of Lima, an early recipient of the therapy, is depicted before and after treatment, serving as vibrant and vital proof of concept.
The cured patients in Peru made a compelling story, an example of what actually changes minds, says Heidi Behforouz, who worked with Farmer when she was a medical student. “Most people, when you tell a story, respond,” said Behforouz, now medical director at Housing for Health, a county health organization in Los Angeles that helps provide supportive housing for people with complex medical conditions. Stories help make the stakes of inaction clear and definable to people who lack an empathetic imagination or exposure to the people suffering the most as a consequence of a policy failure, she said. “If you get lost in the gobbledygook, it feels too big.”
4. Get comfortable with some discomfort
To Lisa Hirschhorn, who met Farmer in the 1980s when they were both caring for people living with HIV at a Boston clinic, he was many things: “a role model, a teacher, an accompagnateur, a partner, and sometimes, a goad.” His willingness to endure and encourage some discomfort on the part of colleagues in pursuit of the ultimate goal was sometimes off-putting or intimidating; for people who couldn’t commit to his vision, it might have been hard to keep up, says Hirschhorn, now a professor and health disparities researcher at Northwestern University’s Feinberg School of Medicine. He was also willing to tolerate enormous personal discomfort himself, including months away from his wife and children, and hours of travel, often with inadequate personal supplies.
But for those who could overcome these hindrances, and for so many others, he remains a North Star. Mukherjee said PIH has been called “gold-plated”; told it does too much; told its work is not feasible or sustainable. “But those calls have never come from the communities we serve,” she said.
“The provision of health care in many places in the world is abhorrent. It’s dangerous. And the fact that we won’t accept it puts us in some squabbles with people who think that’s the best we can do,” said Mukherjee. “And we will, all of us, die on that hill, all 18,000 of us and the many thousands and thousands of people Paul has trained.
Source: VOX
