As Puerto Rico Battles Hurricane Season, HIV-Positive Folks Begin To Brace For The Worst

Alongside stigma, a historic lack of adequate funding has also impacted the quality of HIV care on the island.

The Medicaid and CHIP Payment and Access Commission said in a June 2019 report to Congress that a 55% federal medical assistance percentage, the percentage of Medicaid program expenses paid by the federal government, and a capped allotment of funds in Puerto Rico have created what the bloc called “chronic underfunding” of Medicaid on the island. According to the report, Medicaid covered roughly half of the island’s population in 2017.

And according to data provided by the Health Resources and Services Administration, which administers a federal program known as the Ryan White HIV/AIDS Program, the funding provided has stayed relatively consistent on the island.

That consistency, HRSA spokesperson Elizabeth Senerchia said, is partly due to certain Ryan White funding being awarded based on living HIV/AIDS cases and on the federal appropriation, which Senerchia noted doesn’t take healthcare coverage in any jurisdiction into account.

But in light of that “chronic underfunding” of Medicaid services on the island that the Commission described, consistent Ryan White money could still leave a funding gap.

The island has also recently been facing a mass exodus of medical professionals, which leaves Puerto Ricans on the island with fewer and fewer healthcare options. As a specialized population in the medical field, people living with HIV have been seriously impacted by that dwindling number of doctors, said Naiska Guzman, coordinator for San Juan–based HIV clinic Center for Life.

The Puerto Rico College of Physicians and Surgeons told the Congressional Task Force on Economic Growth in Puerto Rico in September 2016 that, at the time, more than 4,000 physicians had left the island in the decade prior, shrinking the number on the island from 14,000 to 10,000.

Of the doctors who haven’t left the island, Guzman also said many have switched to more lucrative specializations or retired.

But as was the case for Diaz León, medical providers can create hurdles of their own. Diaz León said that when his government insurance plan, which he uses to pay for his HIV treatment, had expired, his doctor’s office didn’t tell him that his accompanying private health insurance would not cover his HIV treatment.

He said he was able to use connections in the government to get an appointment to renew his government insurance the following day. Oftentimes, those appointments can take a month or two, he said.

“I have been lucky because I have connections, but then that makes me think about all those people who aren’t as lucky as me or who don’t have the means in terms of time or transportation or information or the connections to fast pace this type of procedure,” Diaz León said.

Natural and Unnatural Disasters

Roughly three years after hurricanes Maria and Irma hit the island, and months after massive earthquakes rocked the southern part of Puerto Rico, experts and the public have said the local government’s response to and readiness for natural disasters is still failing its people.

Helga Maldonado, a regional director of Escape, a nonprofit organization that works to prevent child abuse and domestic violence in Puerto Rico, told BuzzFeed LGBTQ in February that the government hadn’t learned from its mistakes and said the island’s health department was “invisible” in the areas impacted by the January earthquakes.

The response, Maldonado said, was particularly frustrating given the government’s heavily criticized actions following 2017’s deadly hurricanes. Many Puerto Ricans say that it was the community organizations and activists, not government officials, who have been the primary sources of help after the disasters.

“All they’ve done is throw paper towels at us,” Maldonado said, referring to President Donald Trump’s infamous visit to the island after the 2017 storms.

Elaine C. Duke, former acting Homeland Security secretary under Trump, told the New York Times in an interview published in early July that Trump had also brought up selling the colony after the catastrophic storms in 2017. Duke said in the interview that the idea was never seriously considered after Trump had raised it.

In June 2017, six members of the Presidential Advisory Council on HIV/AIDS stepped down in protest, and months later in December, the Trump administration fired the remaining council members. The council was eventually restaffed in March 2019, one month after Trump pledged to reduce new HIV infections by 90% in the next 10 years.

The CDC website states that as part of that plan, the San Juan municipality in Puerto Rico was designated as one of 57 “geographic focus areas” that will be given additional resources to fight the epidemic.

Rodríguez-Díaz said that while the initiative provided more resources to those fighting the epidemic, in practice, those efforts have been hampered by infrastructure on the island that isn’t equipped to expand so quickly. He added that the recent spate of natural disasters and ensuing recovery efforts have only slowed down the process of actually using putting those resources to work.

Anselmo Fonseca, the program manager for Puerto Rico initiatives at AIDS United, said he was trapped in the mountains for days and lost 15 pounds after the 2017 storms.

Fonseca spoke of hourslong lines for gas and ATMs, $200 withdrawal limits, and empty grocery shelves. He said a generator, a hybrid car, and stockpiled cash and medication helped him weather the storm as best possible. He, like many, have had to rebuild after the disasters without any help from the government.

For other HIV-positive Puerto Ricans like him, Fonseca said help from the government seems unlikely.

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“All they’ve done is throw paper towels at us.”

“Clearly, we’re going to be, again, an afterthought,” Fonseca said, referring to the current state of the island as hurricane seasons continues, adding: “Keep in mind that COVID has basically left folks poorer, so most are still just trying to get by.”

For people living with HIV to survive in Puerto Rico, particularly amid continuing disasters, Fonseca said basic necessities like medication are essential. But disasters, natural and otherwise, have made securing that treatment difficult for many.

“It’s a slow recovery process and I’m able to, but there are thousands more unlike me who are unable to and have no access to any dollars to help and have to rely on the kindness of organizations.”

Fonseca said some survivors of the earthquakes who are HIV-positive were too afraid to go inside their damaged homes to get their much-needed medication. For each of these people, and the others living with HIV on the island after the disasters, the virus only adds to their struggles, he said.

“As a long-term survivor, you know there’s various things that you have to deal with, and first that’s having enough bottles of water, enough canned goods, and your medication,” he said.

Without medication, a viral load will begin to increase in roughly two weeks, said Margaret Hoffman-Terry, chair of the American Academy of HIV Medicine board of directors. And based on early data from Columbia University, that is exactly what happened on the island.

Following Hurricane Maria, the average viral load was 11% higher than before the storm, according to a study written by Columbia University associate professor of sociomedical sciences Diana Hernandez that analyzed data of people living with HIV from the San Juan metropolitan area who also have a history of substance use.

A rising viral load isn’t the only risk, however. Hoffman-Terry said people living with HIV run the risk of becoming resistant to the ingredients in their medications each time they go off — or lose access to — their medication.

Rodríguez-Díaz said many people living with HIV told him after the hurricane that their treatment and care were not impacted by the storm. But upon investigation, he found another story.

In the aftermath of the hurricanes, people living with HIV who ran out of their medication would reach out to others living with the virus and would share medication while they were figuring out how to get a refill, Rodríguez-Díaz said.

“[Their survival] wasn’t because we as a system or as providers did something extraordinary,” Rodríguez-Díaz said. “It’s because they figured it out.”

Diaz León experienced that firsthand when he saw LGBTQ+ people and people living with HIV posting on social media seeking out medication after theirs had run out.

“We are in a day and age that shouldn’t be happening,” he said. “It was scary to see that in general people’s health could be in jeopardy because of our structure, meaning our political structure.”

But the island’s struggles aren’t only the fault of the Trump administration or its inadequate response to the compounding crises on the island.

A highly criticized financial oversight board, tasked with overseeing the restructuring of the island’s billions in debt, is a product of the Puerto Rico Oversight, Management, and Economic Stability Act, also known as PROMESA. The law was signed under President Barack Obama in June 2016. According to MacPac’s June 2019 report, Puerto Rico’s debt in 2017 comprised $74 billion in bond debt and an additional $49 billion in unfunded pension obligations.

Many on the island, however, see the board as just another symbol of the island’s colonial status. The US Supreme Court ruled in June 2020 that the unelected members of the board had been properly appointed by the president.

Stigma, Shame, and Syringes

As storms, hurricanes, and a lackadaisical government have impacted the quality of care for people living with HIV, many experts and advocates said internal and external stigma plays a huge role in how — and if — people access care, as well as the quality of that care.

Naiska Guzman, the coordinator of the Center for Life clinic, said some patients living with HIV — weighed down by stigma — even refuse to tell their doctors about their condition. Doctors who blame patients for their diagnoses can also be particularly emotionally damaging, she said.

“HIV is not a punishment; HIV is a condition like diabetes or cholesterol,” she said. “People don’t ask how you get cancer when you say you have cancer, but if you say you have HIV, people question you. We need to talk openly about HIV. If we don’t talk about HIV, the stigma is going to continue to be a barrier.”

That stigma, and government neglect, were on full display during the first stop of a two-hour needle exchange in San Juan with outreach workers Antonio Cintron and Raphael Torres this past February, who were once addicted to drugs themselves. The pair are a part of a local harm reduction group called Iniciativa Comunitaria.

On that hot, late morning in mid-February, a middle-aged HIV-positive man slowly shuffled to the back of Cintron’s nearly 30-year-old white Pontiac. Wearing only bright blue athletic shorts and black socks with no shirt, his brown skin was riddled with ulcers, scars, and scabs. Cintron said the man is the de facto leader of a group of other people addicted to drugs that live in the abandoned house from which he emerged.

The shirtless man dumped a plastic jug of used syringes into a red biohazard box and in kind received a plastic shopping bag full of condoms, clean needles, tourniquets, and other tools that are crucial to safely injecting drugs at the house. In a gravelly, strained voice, he said in Spanish that he had no ID and had no way to access important services he desperately needed, such as referrals to HIV care and drug treatment programs.

Over the two hours spent on the needle exchange, people simultaneously experiencing homelessness and addiction to drugs spoke of a condition only worsened by natural disasters. They flowed from abandoned houses and overgrown lots; they lined up for 20 clean needles each, condoms, and tourniquets. Many, but not all, had open sores, sunken faces, and loose clothes. One man dropped off used needles on his way to work at a local car dealership.

“We will be seeing the effects of this pandemic in our participants for a long time.”

Alex Serrano, the director of community relations at Iniciativa Comunitaria, said the group nonetheless continues its needle exchange and harm reduction work amid these compounding disasters.

Serrano said that since the start of the pandemic, the group set up a portable handwashing station for needle exchange participants, limits the needle exchange routes to Monday mornings, and additionally passes out COVID-19 information to participants.

Before Tropical Storm Isaias reached the island, Serrano said the group was also giving out information about the storm and shelters.

Serrano said he was one of more than 400,00 people who lost power on the island after Isaias, and amid all these dogpiling disasters, he said some treatment services, particularly detox services for people living with drug addiction, are hard to come by.

The people Iniciativa serves are Puerto Ricans at their most vulnerable, and almost everyone who Cintron spoke with said that if they could access treatment — if they had the money, IDs, or just plain help to do so — they would.

“This is so new for all of us,” Serrano said. “We will be seeing the effects of this pandemic in our participants for a long time.”

For Díaz León — and many Puerto Ricans like him who are living with HIV — recovering from the latest disaster and preparing for the next, whether it be natural, political or both, mirrors what brought him back to the island back in 2017: hoping for the best and taking things one day at a time.

And wondering if meaningful help will ever arrive.