Remembering Ti Joseph: Patient, Friend, and HIV Advocate

Posted on Apr 1, 2016

Remembering Ti Joseph: Patient, Friend, and HIV Advocate
Joseph Jeune at his home near Lascahobas, Haiti, roughly one year after he was diagnosed with tuberculosis and HIV.

Joseph Jeune used to carry a folded pamphlet from the World Health Organization in his back pocket. It described the international body’s "3 by 5 Initiative," dedicated to getting 3 million people on antiretroviral therapy (ART) for HIV by 2005. On the left was a picture of a wide-eyed, emaciated patient who teetered on the brink of death. On the right was the same man, this time smiling, 30 pounds heavier, and proudly balancing his niece on a sturdy hip. The transformation was breathtaking.  

“‘That was me!’” Jeune would say while pointing to the pictures, according to a doctor who knew him well. “‘Look how sick I was!’” And whenever someone brought up the same poster in conversation with him, he proudly and playfully boasted, “‘Yeah, I’m a star.’”

Jeune was a star to his family and friends, and particularly to his doctors working in clinics supported by Zanmi Lasante, as Partners In Health is known in Haiti. The illiterate peasant farmer and shoe shiner turned community health educator was an iconic symbol of the power of ART and the importance of delivering it to patients all over the world—regardless of income or social status. His recovery, and resulting fame in the global health world, earned him a platform from which he advocated for the compassionate care of poor people living with HIV and tuberculosis.

The treatment Jeune received brought him another 13 years of life. Many would say that was too little time for such a grand personality. Ti Joseph, or “Little Joseph” as he was affectionately called by the PIH doctors who loved and cared for him, died on January 21, 2015, at 37.

Lazarus lives

Jeune (left), seen here in March 2003 shortly after his diagnosis, got up from his hospital bed within weeks of beginning treatment.
One year later, Jeune (right center) stands between his parents near their home in Lascahobas, Haiti.

Jeune’s family had already hired a carpenter to build his coffin when they saw his health drastically decline more than a decade ago. The man methodically sawed and hammered away, all within earshot of Jeune, who lay skeletal and lethargic on the dirt floor of his family’s hut near Lascahobas. His parents had tried everything to cure the mysterious illness that slowly ate away at their eldest son. His father sold their crops, land, and livestock to pay for the services of a traditional healer. None of the treatments worked.

“I kept getting worse,” Jeune told PIH Co-founder Dr. Paul Farmer, who later retold the story in his book, Partner to the Poor. “My mother, who was caring for me, was taking care of skin and bones.”

Having heard about Jeune’s case, a PIH community health worker visited the distraught family and urged them to bring him to the public clinic in Lascahobas five miles away.

On the afternoon of March 17, 2003, Jeune arrived at the PIH-supported clinic on a makeshift stretcher carried by four men. The trip had taken four hours on foot under the punishing sun of the Haitian dry season.

Dr. David Walton, a fifth-year medical student at the time and current PIH board member, was there to admit Jeune, who was dehydrated and emaciated. Jeune and his brother spoke of a litany of symptoms that had persisted for months. Cough, intermittent fevers, diarrhea, weight loss, weakness.

“The laundry list of things that cause a young man to look skeletal in rural Haiti is very small,” Walton says. “It’s HIV. It’s TB. It’s both. It’s diabetes. It’s malignancy or some other zebra, some rare thing.

“We suspected he probably had HIV or TB, and that it was untreated.”

While he awaited test results, Jeune was admitted to a nearby hospital. His diagnoses came in short order; he was HIV-positive and had a form of TB that could be treated with first-line antibiotics.

My mother, who was caring for me, was taking care of skin and bones.

Jeune wasn’t an easy patient at first. He barely gagged down his drugs and shot surly responses at caregivers those early days in Lascahobas. He was depressed, hopeless, and sick of being sick. “I’m dead already,” he told them, “and these medications can’t save me.”

But Walton and his team, consulting with Farmer, were persistent. Jeune started a daily regimen of medications for his HIV and TB. His appetite returned within six weeks. He got up from his bed and walked around the ward. His true personality soon emerged. He became once again the outgoing jokester and avid storyteller his family and friends knew and loved.

With that, Jeune joined a growing number of Haitians who had access to lifesaving ART and had risen, much like the biblical Lazarus, from their deathbeds.

Up until the late 1990s, most people who were HIV-positive and lived in poor countries simply didn’t have access to the cocktail of medication that stalled the virus’ advance in the body. In 1998, the average cost of a year's supply of antiretrovirals in the United States was more than $18,000. That was simply too high a cost to pay, in the opinion of global policymakers, for the many thousands of people who needed, but couldn’t afford, it.

This policy wasn’t just founded in budgets; it was strongly backed by prejudice that extended to the highest rungs of international development. Andrew Natsios, who led the U.S. Agency for International Development at the time, was infamously quoted saying that Africans ''don't know what Western time is. You have to take these [AIDS] drugs a certain number of hours each day, or they don't work. Many people in Africa have never seen a clock or a watch their entire lives. And if you say 'one o'clock in the afternoon,' they do not know what you are talking about.''

PIH refused to share that opinion. So in 1998, staff members began providing ART free of charge to HIV-positive patients in Cange, Haiti, through what it called the HIV Equity Initiative. The impact was nothing short of a miracle. Formerly moribund patients got up from their sick beds and returned to their former lives. They became instant advocates for universal access to ART and penned their personal testimony in the Cange Declaration, which rebutted global policy and buoyed the hopes of other HIV-positive people around the world.

An international icon

A community health worker visits Jeune at home in 2014 to ensure he takes his treatment.

 

By September, Jeune had returned to his home and gained 45 pounds. His TB was cured. And he religiously took his ART. He was doing so well that he started taking classes in community health education at the Lascahobas clinic. PIH offered him a job and he soon became a jack-of-all trades there.

“He was an extrovert in the truest sense of the word,” says Walton, who became a close friend and took pictures of Jeune—with his permission—throughout his treatment. “In a time of significant stigma, he was always very open about his disease.”

So when Farmer approached Jeune about sharing his before-and-after pictures with the World Health Organization, where fellow PIH Co-founder Dr. Jim Yong Kim was working at the time, Jeune jumped at the chance.

“‘Show my pictures. Tell my story. I want people to be able to have the same opportunity for treatment that I did,’” Walton remembers Jeune saying. “He was a really fiery advocate about health equity, particularly around HIV.”

And that’s how Jeune, a peasant farmer and shoe shiner from a tiny village in Haiti, became the face of the WHO’s roughly $5 billion "3 by 5 Initiative." His before-and-after pictures were printed side-by-side on all manner of promotional materials, including pamphlets, which the WHO sent to ministries of health everywhere from Russia to South Africa, and Haiti to Indonesia.

“There’s no question that Joseph Jeune’s before-and-after pictures changed the way many, many people thought about the possibility of ART in Africa and other parts of the developing world,” says Kim, who led WHO’s "3 by 5 Initiative" and is now president of the World Bank Group. “It changed the hearts and minds of the White House, the HIV docs at Harvard, and folks around the world when we put them into the World Health Report in 2003.”

There’s no question that Joseph Jeune’s before-and-after pictures changed the way many, many people thought about the possibility of ART.

“Those photos were iconic,” Walton says. “Ti Joseph knew it, he loved it, but he didn’t love it because he was a narcissist. He loved it for what it represented, which is for others like him who had been so viciously ignored in the past to really have a chance to gain access to treatment.”

PIH staff soon discovered the extent of the campaign’s reach. Farmer remembers traveling to Kenya with Ophelia Dahl, a PIH co-founder and current board chair, to advocate for the use of ART in rural areas. They visited a clinic run by nurses in a remote community on the shores of Lake Victoria, where running water and electricity simply didn’t exist. On the wall was the WHO poster with Jeune’s images.

“Look! There’s our patient,” Farmer remembers saying to his hosts. They kindly corrected Farmer, explaining that the man was Kenyan. But Farmer insisted. “No, he’s Haitian.” And he pulled out his laptop to show them the original images.

“It didn’t matter to the people who were looking for treatment whether he was Haitian, or Kenyan, or Malawian,” says Dahl. “He was a symbol to them of what it is to be very sick and to be hopeful about getting well.”

Two years after the campaign’s launch, PIH Chief Medical Officer Dr. Joia Mukherjee had a similar encounter in Rwanda when a community health worker learned that she knew Jeune. The woman was clearly touched. “’I want to meet Joseph,’” Mukherjee remembers her saying. “’He’s my hero!’”

A fiery advocate

The summer of the WHO campaign’s launch, Jeune spoke to nearly 700 patients, health care providers, and policymakers at the 10th International Seminar on Health and Social Justice in Cange. He talked about his HIV-positive diagnosis and his miraculous recovery after being placed on ART.

Mukherjee remembers Jeune standing in front of a poster of his before-and-after pictures, sharing his story with a receptive audience. He also poked fun at himself, saying that he looked like a “dead man” and a “corpse.” That was Ti Joseph.

“He understood that he was an example,” Mukherjee says.

If you don't have anything to eat and you have HIV/AIDS, you've got two diseases: HIV and hunger.

That was just the first of several appearances Jeune made, locally and on an international stage, to share his story with the world. He left Haiti for the first time in August 2006, when he spoke alongside Farmer at the International AIDS Conference in Toronto, Canada, about the importance of providing food to HIV-positive patients as part of their care.

"If you don't have anything to eat and you have HIV/AIDS, you've got two diseases: HIV and hunger," said Jeune at the time. “These medicines, when you start taking them, they whisper in your ear, ‘You need to eat, you need to eat.’ They make you hungry.”

Jeune eventually became an invaluable HIV/TB peer educator upon whom PIH staff in his community relied. He spoke to patients, in groups and individually, about his recovery and the importance of adhering to their medication.

“I care as much about my medications as I do about myself,” Jeune once told a reporter about his ART. “There may be other illnesses that can break you, but AIDS isn’t one of them. If you take these pills, this disease doesn’t have to break you.”

A medical miracle

Forty-five pounds heavier after one year on ART, Jeune has his strength back and returns to his daily life, including running errands for his family around Lascahobas. 

 

Dr. Martineau Louine, who once directed the HIV/TB program in Lascahobas, remembers Jeune as a fierce patient advocate who never minced words. A specific conversation stands out from one of his first days at the clinic.

“When it was Ti Joseph’s turn to see me in consultation,” Louine recalls. “He told me, ‘You know, Martineau, you spend too much time with patients for consultation. You have to go quickly, because you have a lot of patients.’”

Jeune was a straight shooter, and he demanded the same of others. He didn’t rest until he had an answer, whether it was for a patient he mentored or himself. That’s why, when he complained of an intermittent cough, night sweats, and fever, he told Louine about it during one of his regular HIV check-ins in early 2008.

“I thought of pneumonia or malaria,” Louine says. “I tried to give antibiotics, to give medications for malaria. But every week he kept on returning to see me with the same complaints.”

Suspecting TB, Louine ordered a sputum culture for Jeune. But it was negative. A chest x-ray revealed something new. He consulted with Walton and then with Farmer for advice. Farmer suspected it was multidrug-resistant TB, and recommended Louine perform further tests to confirm his hunch.

Sure enough, Jeune had contracted TB again. This time, it was a nastier form of the disease. Louine knew he needed to be hospitalized in Cange, an hour’s ride away. So he offered to pay a neighbor to farm Jeune’s beloved maize and bean crops.

The solution worked for about three months, and then Jeune wanted to return home to Lascahobas. “Ti Joseph was a really strong person,” Louine says. “When he decided to do something, it was really difficult to convince him to do the opposite.”

It’s an amazing story medically to survive AIDS back then and to survive TB the first time around and then MDR-TB.

Louine anxiously welcomed his patient. He remembers telling Farmer that he didn’t know how to treat such a complex case. Not skipping a beat, Farmer replied: “’Martineau, I think you are not curious,’” Louine remembers his mentor saying. “It’s a great opportunity for you to know how to treat MDR-TB.’”

And with that, Farmer arrived in Lascahobas on a Sunday to sit at Jeune’s bedside and explain, in detail, what to expect from and how to respond to the medications’ harsh side effects. Two years later, in 2010, after many injections and hundreds of pills, Jeune was cured.

“It’s an amazing story medically to survive AIDS back then and to survive TB the first time around and then MDR-TB,” Farmer says.

A big loss

Healthy and stable on his ART, Jeune returned to his full life. He worked his fields. He fell in love. He had a daughter, who never contracted HIV thanks to his dedication to treatment, and a new home in Lacolline. He dreamed about his future (and about how he desperately wanted to learn to read). He provided guidance to patients. And he visited the Lascahobas clinic for his regular check-ups.

It was on one such visit in late 2014 that Jeune again complained of a fever, cough, and chills. The on-call doctor screened him for TB, but the lab exam and chest x-ray both came up negative. Something wasn’t right. So the doctor recommended he be hospitalized for further tests.

Jeune knew what that meant and refused. After all, how was he going to take care of his family or his fields from the hospital? The doctor didn’t insist; he assumed there would be time to convince his patient.

The greatest thing is that his life was not in vain.

But after 13 years on ARTs, after having twice conquered TB in various forms, Jeune had no more time. He died in his home at 2 p.m. on January 21, 2015.

News of Jeune’s death slowly spread around his community, then Haiti, and then across oceans. Farmer was in West Africa helping battle the rampant Ebola epidemic when he heard his friend had died. He thought at the time that it should have been 30 years, not 13, that Jeune had gained.

Still, “it gave some of us strength,” Farmer says, “because everybody had given up on Ti Joseph except for family and the medical people who came to know him very well.

“It’s a big loss,” he adds. “We all loved Ti Joseph.”

Mukherjee was in West Africa too when she heard the news. A Sierra Leonean community health worker confessed that the poster with Jeune’s pictures had inspired her to continue living following an HIV diagnosis, thinking that if “’my brother did it, I can do it too.’”

That was the thing about Jeune; he popped up when you least expected it. His posters, and his legacy, remain alive.

“The greatest thing,” Mukherjee says, “is that his life was not in vain.”

 

 

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