The Mother Hen Who Scratches Your Soul: An Appreciation of Paul Farmer

IN 1999, Ghislene Jean Baptiste, then 36, began suffering from frequent, painful migraines and night sweats. No longer enticed by meat barbecuing on the side of the road, she had lost both her sense of smell and her appetite. When she looked in the mirror, she didn’t recognize herself: she was nothing more than skin and bones.

Like hundreds of other patients, she lined up to see the doctor well before the sun rose over the undulating landscape of the Central Plateau. After a series of X-rays and blood tests, Baptiste was diagnosed with TB and HIV.

“Paulo told me that I had a virus in my blood called HIV but that everything would be okay — that I would live a full life if I took my antiretrovirals (ART),” she said. “Every time I came to the hospital to do a TB test and pick up my medicines, I was given a food supply — milk, rice, beans, vegetable oil, flour, eggs. It never ran out. I took my medicines and ate well, and quickly recovered.”

On February 21 of this year, Baptiste woke early — around 4:00 a.m. — and put water on the boil before getting ready for work selling charcoal and wood. She turned on the radio and, when she heard the news, she collapsed.

“I couldn’t stop crying. Paulo was like a father for us Haitians. He loved us a lot and of course we loved him a lot for what he did,” Baptiste, now 59, said, sobbing into her lap.

“We have nothing anymore now that he is gone.”

When global health equity champion, physician, and anthropologist Dr. Paul Farmer passed away in his sleep in Rwanda, the news of his death reverberated painfully around the world. Tributes poured in for a man who had reshaped what it meant to treat health as a human right. As he would write in one of the 12 books he authored, “If access to health care is considered a human right, who is considered human enough to have that right?”

As a young medical student in the early 1980s, Farmer built a clinic in the remote, impoverished village of Cange, in the Central Plateau of Haiti, the poorest country in the Western hemisphere. In 1987, he went on to found with several friends an organization called Partners in Health (PIH), which grew into a vast network serving some of the poorest communities across the world. In Haiti, the organization, known by its sister name Zanmi Lasante, expanded to 15 clinics and hospitals across the Central Plateau and lower Artibonite, two of the most penurious parts of the mountainous country, employing 6,300 staff, almost all of whom are Haitian.

When I visited Cange in March, a trip that had been planned before Farmer’s death, it felt like all that I had read in the past several years on inequality, poverty, and poor health was playing out right in front of me. Cange is a small, picturesque village surrounded by rolling green mountains that sits on the edge of Lake Péligre, created by a hydroelectric dam, about a 30-minute drive from the town of Mirebalais. Farmer’s work in Haiti had inspired my interest in the country, and as a health journalist, I saw the village as important to helping me understand Haiti’s present.

I toured Zanmi Lasante’s hospital grounds, visiting the maternity, neonatal, internal medicine, surgery, emergency, ophthalmology wards, among others, and the on-site school and orphanage. Haitians travel here from all corners of the country. It is difficult to imagine what existed before this huge complex — and where people went when they were sick.

We visited Farmer’s humble pink and green ti kay — little home, in Haitian creole — perched on a cliff opposite the hospital with sweeping views of the countryside. Surrounding his home, referred to as his “nest,” were dozens of varieties of plants planted by Farmer himself. “He had a simple life,” one of his colleagues murmured. An air of sadness hung in the air.

Afterward, I sat by the pond next to the hospital’s church. Ever since I left Australia a decade ago, I have carried several of his books with me on my travels, making more room for these than for my clothes. The books, with titles like Infections and Inequalities and Pathologies of Power, are stained with coffee and red wine marks and filled with dozens of sticky notes that remind me of the link between structural violence and poor health. Here’s one: “[A]cts of violence are perpetrated, usually by the strong against the weak, in complex social fields. In each of these situations, a set of historically given and, often enough, economically driven conditions […] guarantee that violent acts will ensue.”

When he released a book on the West Africa Ebola outbreak, I had to draw a line at what I could feasibly carry. Even though I was down to just a handful of T-shirts, the book, at 688 pages, simply couldn’t fit. So, instead, I scribbled down my favorite quotes on a piece on paper. Here is one of those: “There can be no understanding of this medical wasteland, and its vulnerability to Ebola, without knowledge of [their] shared and distinct histories. […] In the health-care arena, many of the terms of current debates about what’s possible and what’s not were set in the era of colonial rule.”

Farmer was guided and inspired by liberation theology, which draws attention both to the suffering of the world and the forces promoting it. Aiming to redress those forces through service and remediation, he opted for focusing on the very poorest of the poor. After all, diseases more often than not have a knack for seeking them out.

“The idea that some lives matter less is the root of all that is wrong with the world,” he wrote.

Farmer didn’t believe there should be different treatment regimens for people in Boston or Haiti; he resented so-called experts who formulated health policy in Geneva or Washington while neglecting entirely the root cause of why some people were disproportionately sick in the first place.

When he and his organization began delivering high-quality medical care to the poor, including to impoverished people in rural Haiti, it was considered revolutionary. To Farmer, this reaction was absurd.

“It’s embarrassing that piddly little projects like ours should serve as exemplars,” Farmer told author Tracy Kidder. “It’s only because other people haven’t been doing their job.”

When lifesaving drugs for HIV became available in the late 1990s, many experts and health policy-makers debated how and where to use them. The ivory tower experts in Europe and the United States made it clear that treatment wasn’t an option for people in poor rural villages, arguing instead that the focus should be on prevention. Most of these poor people were Black. By focusing on prevention, such as the use of condoms, international institutions and organizations were able to abdicate responsibility and instead blame patients for their shortcomings. They were able to bypass rather than address the conditions — for example, lack of economic opportunities for women — that put certain people at risk.

In 1998, PIH launched its HIV Equity Initiative in Haiti, the first program in the world to treat poor rural people in an impoverished country. It chose its patients purely on medical grounds, not their ability to pay, making it the only organization at the time to provide expert care and treatment for free. While the drugs swallowed up most of ZL’s budget, Farmer believed that paying attention to individual patients’ needs was a moral imperative. These patients, many of whom were on their deathbeds, would have died without the medicines. The program hired and trained community health workers to deliver them, and then to help patients with ongoing treatment. The program also responded to patients’ pleas for nutritional assistance because, in Haiti, to give drugs without food was synonymous with lave men, siye atè (washing one’s hands and then wiping them in the dirt).

Farmer believed that if HIV treatment could be rolled out in the Central Plateau, where the Haitian creole proverb dèyè mòn, gen mòn (beyond the mountains, more mountains) succinctly summed up the country’s geography, then it could be rolled out anywhere.

Not everyone agreed. Many in the international community deemed such a project wasteful, arguing that it wasn’t “sustainable” or “cost-effective,” concepts that have come to dominate the global health field as a way of rhetorically managing inequality rather than actually addressing it.

“They had accepted, as rural Haitians would not, the notion that the poor world would remain poor and that people so unfortunate as to be born into poverty were out of luck when it came to receiving expensive but effective AIDS therapy,” Farmer wrote.

In 2001, when Farmer and colleagues published a groundbreaking study in The Lancet about their success in Cange, the administrator of the US Agency for International Development, Republican Andrew Natsios, insisted that Africans were undeserving of lifesaving medicines because health-care infrastructure was too primitive, and apparently so were their brains. “You have to take these (AIDS) drugs a certain number of hours a day, or they don’t work. Many people in Africa have never seen a clock or a watch their entire lives. They know morning, they know noon, they know evening, they know the darkness at night.” That year, 2.3 million Africans died of AIDS.

The belief that Africans were so dumb that they couldn’t possibly master taking their medicines on time became typical of the Bush administration, grounded as it was in racism and ethnocentrism. By now Farmer was used to such comments, which extended to Haitians, with their country being dubbed “the little Africa off the coast of Florida.”

The US CDC identified four high-risk groups for the spread of HIV that included homosexuals, Haitians, hemophiliacs, and heroin users. The media labeled these people the “Four-H Club.” Only one of the groups was based on nationality rather than “risky” behaviors.

This official classification had a devastating impact on Haitians both in Haiti and around the world. It led to the eviction of thousands of Haitian Americans from their homes, the deterioration of Haiti's tourism industry, and job losses among Haitians living in the US and beyond. Even though decades have passed, the stigma has stuck to a certain degree.

As a medical student in the 1980s, Farmer also studied anthropology, publishing in 1992 his thesis as a book, AIDS and Accusation: Haiti and the Geography of Blame, part of which he wrote perched on the side of a mountain in Cange. He collected a rich trove of data to show that AIDS had almost certainly come from North America to Haiti and might well have been carried there by American, Canadian, and Haitian American sex tourists. Until his death, Farmer refused the idea that Haitians were responsible for the introduction and spread of HIV in the US, instead showing how colonialism, imperialism, and US policy had led to widespread poverty and unemployment in Haiti, facilitating a sex tourism industry.

The PIH’s HIV Equity Initiative, which began in Cange, ushered in a new era of global HIV/AIDS care, with its community-based model embraced across the world. The organization’s work also helped launch major global initiatives to fund HIV programs that brought ART to all corners of the globe, including the Global Fund to Fight AIDS, Tuberculosis and Malaria, known as the Global Fund, and the President’s Emergency Plan for AIDS Relief, PEPFAR. Today, Haiti has an adult HIV prevalence of 1.9 percent, and four-fifths of those who test positive are on lifesaving treatment. More than anything, Farmer and his colleagues proved that exemplary medical care could in fact be delivered in rural poor settings. Why should we accept anything less? After all, a rural farmer in Chad is just as deserving of high-quality medical care as a banker in Sydney. Humans are humans.

Bernadin Gracia, now 53, was one of the first patients to receive HIV drugs in Cange. When a dose of typhoid and malaria took him to the hospital with a terrible fever in 1998, Gracia was also tested for HIV.

“Paulo told me about HIV because I didn’t know anything about it,” he said. “He told me that everything would be okay because there were drugs to treat it.”

Gracia was hired as an outreach worker, a job he still carries out with great enthusiasm today. He and Farmer would walk for hours up mountains in the blistering heat or torrential rains to find patients in need of medical care. When Farmer was out of breath, Gracia would pass him a bottle of water and his ventilator.

“We would find very sick patients and carry them with us. Paulo used a lot of his personal energy to reach the sick. He was never tired and never complained,” he said.

“He was the only one who gave full value to the sick and poor. He cared for us.”

When Gracia heard the news of Farmer’s passing, his heart pounded so fast and hard he thought he was having a heart attack.

“I needed a lot of courage to accept [the news]. The work I’m doing in the field, I always did with him. Paulo was like the mother chicken who scratches your soul. If you don’t have a mother chicken, what happens?”

They shared their last words at 2:00 a.m. — not an abnormal time for the two to be working — when Farmer admonished Gracia that he was getting a bit old and should consider slowing down. Sadly, it was really Farmer himself who needed to take his own advice and slow down, as his close confidants had been warning him for years.

Partners in Health isn’t perfect nor was the man who was the face of it.  Farmer didn’t have all the answers to questions about poverty, inequality, and disease, but what he did was enormous: he inspired millions around the world to treat health as a human right and, in doing so, to treat every patient as a human.

We desperately need another such mother chicken to take his place.

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Sophie Cousins is a health journalist.

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Featured image: "PEF-with-mom-and-baby---Quy-Ton-12-2003 1-1-310" by Cjmadson is licensed under CC BY 3.0. Image has been cropped and desaturated.