HIV Patients Face Anguished Choice: Dodge Protests or Go Without Medication

Thousands of Haitians living with HIV struggle to get their treatments as demonstrations rage. The coronavirus only adds to that stress.

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HIV Patients Face Anguished Choice: Dodge Protests or Go Without Medication

Anne Myriam Bolivar, GPJ Haiti

Myrna Démosthène, 43, says the sociopolitical crises in Haiti made it so hard to get her medications that at one point, she had only a three days’ supply left. “I hope to never go through such an ordeal again,” she says. “I have never been this concerned for my life.”

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PORT-AU-PRINCE, HAITI — To get his HIV medications, Savior Louis has dodged demonstrations that often paralyze his neighborhood in a suburb of Port-au-Prince. Protesters block roads and hoist barricades. They burn tires in the streets.

Buses stop running. Ambulances can’t ply the chaotic streets. Health centers are inaccessible.

Haiti’s capital has seen steady protests for three years, as the country’s people have clogged the streets to rail against corruption, police violence, economic inequality and a lack of government services.

The once-daily protests, which now continue mostly on weekends, have upended virtually every part of Haitian life. Businesses closed. Some nongovernmental organizations suspended their work. And tasks both ordinary and urgent — such as getting one’s HIV medication — became an exercise in courage.

“Either we go without our medication and deal with the consequences,” Louis says, “or we risk our lives.”

Protests have raged throughout Haiti since 2017, after the government proposed tax increases and following a corruption scandal in which high-level officials allegedly stole more than a billion dollars. Separately, government investigators have accused Jovenel Moïse, who became president in February 2017, of money laundering and other financial improprieties committed before he took office.

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Anne Myriam Bolivar, GPJ Haiti

GHESKIO, one of the country’s largest HIV/AIDS treatment programs, has set up distribution points to make it easier for Haitians living with HIV to pick up their vitamins, antibiotics and antiretroviral medications. More than 3,000 patients have used the points.

By 2019, the protests were less frequent but no less fierce. More corruption allegations dogged Moïse, as protesters demanded his departure. Today protesters still want Moïse gone. They also seek arrests of other allegedly corrupt officials, and call for an overhaul of Haiti’s health care, education and justice systems.

The country’s spending on health care ranks among the world’s lowest. The United Nations reports that about 38% of Haitians 15 and older are illiterate. And the justice system has suffered from a host of problems — from prison overcrowding to alleged police killings of civilians, including protesters.

“This is a real movement to demand the end of a system of socioeconomic exclusion that has been in place in this country for over 200 years,” says André Michel, a lawyer and spokesperson for the Democratic and Popular Sector, a coalition of opposition groups. “This system benefits a rich minority and leaves out the mass of poor people.”

Christalin Joseph, president of Konade, a pro-government political party, says the protesters’ demands are unreasonable.

“The right to demonstrate is democratic, but the demands must be fair,” he says. “The question of the resignation of the president is political blackmail. Jovenel Moïse took office on February 7, 2017, and his term will end on February 7, 2022, so there is no way out of it.”

Amid the strife, ordinary people try to carry on with their lives. And among those are Haitians living with HIV.

As many as 180,000 Haitians may be living with HIV/AIDS. Between 62% and 83% are aware of their medical condition, and a majority of those patients receive treatment.

“Either we go without our medication and deal with the consequences or we risk our lives.”

Along with the social unrest, the coronavirus pandemic has added to the stress of people living with HIV. According to the Ministry of Health, COVID-19, the disease caused by the coronavirus, has killed more than 230 Haitians.

Because businesswoman Merilia Morel is both hypertensive and HIV-positive, she says she always wears a mask and washes her hands regularly to stave off the virus.

“It is stressful, the fact that we don’t know who is infected,” Morel, 56, says. “I have to protect myself and my family. I apply all the precautionary measures, and I never neglect my [HIV] medication, which is my oxygen. I cannot do without it.”

Dr. Marie Marcelle Deschamps, secretary-general of GHESKIO — one of Haiti’s largest HIV/AIDS treatment programs — says the political turmoil has kept many patients from accessing enough medication for their treatment cycles.

Bernard Liautaud, a doctor and researcher at GHESKIO for three decades, says if patients don’t take their medications, “the virus will multiply and destroy the whole defense system of the patient, and they may even die.”

When GHESKIO officials realized patients weren’t showing up for their treatment, they went to their patients.

In a move apparently unique to GHESKIO, the organization contacted patients in their database and told them of distribution points where they could collect their medication. More than 3,000 patients used the points.

“I have to protect myself and my family. I apply all the precautionary measures, and I never neglect my [HIV] medication, which is my oxygen. I cannot do without it.”

They included people like Myrna Démosthène, 43, who lives in Martissant, a neighborhood in south Port-au-Prince. Démosthène, a small woman with a big personality, has lived with HIV for seven years and renews her medication every six months.

She says that before she moved to Martissant, she traveled more than 100 kilometers (62 miles) for her medication. Sometimes protests crippled bus service. As the unrest stretched on, her supply of medication dwindled to three days.

Finally, she learned of a GHESKIO distribution point in Fontamara, a Port-au-Prince suburb 3 kilometers (1.9 miles) west of Martissant.

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“I hope to never go through such an ordeal again,” she says. “I have never been this concerned for my life.”

A Fontamara distribution point also saved Louis, who has lived with HIV for 24 years. He resides in Fontamara and used to walk 3.4 kilometers (2 miles) to pick up his medication, enduring smoke from burning tires.

The distribution point was closer. “It was easier,” says an upbeat, pleasant Louis, who always wears a hat to protect himself from Haiti’s searing sun. “But any time we’re in the street, it’s a risk.”

Liautaud says it was hard to fix the right time slots for deliveries and to find drivers willing to take medications to some of Port-au-Prince’s toughest neighborhoods. But in the end, they managed.

“For a country like Haiti,” he says, “this is one of the few occasions which can be considered a success.”

Anne Myriam Bolivar is a Global Press Journal reporter based in Port-au-Prince, Haiti. Born and raised in the Sud department, she reports on a wide range of issues, from agriculture to social development.

Translation Note

Emeline Berg, GPJ, translated this story from French. Click here to learn more about our translation policy.