Puerto Rican HIV Activists Continue Post-Hurricane Maria Fight Despite U.S. Indifference and Local Corruption

Flying into Luis Muñoz Marín International Airport, the passengers cheered as the plane landed, a tradition many Puerto Ricans acknowledge. Many were coming to visit family, others for a vacation, but overall, everyone was there to enjoy summer in San Juan. As I walked the streets of Santurce, San Juan's art district, I saw murals on buildings that were left after the annual art competition, called Santurce Es Ley. I also couldn't help but notice the abandoned storefronts on the ground level of some buildings. The smell of the aftermath of Hurricane Maria remained strong. Despite the mounds of gravel and debris and emptied buildings, people still came out to celebrate and eat; mofongo and tostones were in abundance. People were having a great time, despite what had happened nearly a year earlier.

This coming Sept. 20 is the one-year anniversary of Hurricane Maria, a natural catastrophe that completely devastated the island and caught the Federal Emergency Management Agency (FEMA) and Puerto Rican officials with their pants down. According to FEMA's July 2018 report, "The Nation faced an unprecedented 2017 Hurricane Season. ... Ultimately, the lessons learned ... will contribute to FEMA's efforts to work with our partners to help people before, during, and after disasters."

But the "lessons learned" were at the cost of thousands of lives. As many as 4,600 deaths are thought to have been associated with the direct impact and aftermath of Maria, and until recently, nearly 1,000 households in Puerto Rico remained without power. People have not yet recovered from the aftermath of Maria. Teal-blue tarps covering hundreds of homes are visible when flying over the island. If a hurricane like last year's were to hit again this season, these homes would be completely demolished.

What do these natural disasters mean for people living with chronic illnesses, such as the approximately 17,000 people living with HIV on Puerto Rico? Puerto Rico is facing a health care crisis, and it began before Hurricane Maria hit. As reported by Drew Gibson for TheBody last year, "Puerto Rico ranks in the top 10 among U.S. states and territories for total HIV cases and has an HIV death rate higher than any other state or U.S. territory." One would think that being a commonwealth of the most powerful country in the world would have benefits when it comes to health care and recovery from natural catastrophes, such as the one that took place in September 2017; however, that is certainly not the case for Puerto Rico.

Federal spending for Medicaid for the 50 U.S. states grows as need grows, but these funds are capped for Puerto Rico. Under the Affordable Care Act, Puerto Rico was given a one-time federal grant of $6.4 billion for health care spending for fiscal years 2011-2019. But that money was spent as of April 2018, although half of all people on the island rely on Medicaid.

Yet, the HIV community remains resilient. "I have been able to continue [HIV] treatment; I do not know anyone who has had problems," said Dianne Michelle, a 69-year-old Afro-Latin transgender activist in San Juan. "The problem lies with the issue of electricity to do everyday tasks. There are places that lasted four months without electricity, and others still have no power a year later. I believe the government of Puerto Rico should be more attentive and sincere when we deal with these natural catastrophes."

Michelle is now a mentor for other transgender people and people living with HIV on Puerto Rico. She remembers the fear on the island after AIDS became known and began to take root on the island. People saw it as leprosy, and patients were left in corner hospital beds to die alone. She remembers that the first regimen to treat HIV was a set of ten pills.

Eventually, Michelle was able to continue her life with HIV and went to school for cosmetology. She would host homeless LGBT youth in her home after they were kicked out for being who they were. Many of these youth were sex workers, and even though she never chose to do sex-work herself, she tried to support youth as best she could by providing a roof over their heads. Michelle is now a prominent figure in San Juan. She is an activist in the LGBT community and well respected by her peers. And she has strong words for how the Puerto Rican government has responded to the current infrastructure devastation.

"This government does not care about the people; it's a daily crisis, she said. "We have no sure future for Puerto Rico."

Related: Help People Living With HIV in Puerto Rico Recover From Hurricane Maria

Health care coverage is only one aspect of the ongoing challenges. Community organizers on Puerto Rico told me that they feared that the closure of pharmacies on the island since the hurricane will jeopardize the health of people living with chronic illnesses, such as diabetes, HIV, and asthma. In recent years health care providers on the island have done a phenomenal job at containing the HIV virus -- only 523 new HIV cases were reported in 2016; however, the Medicaid funding crisis could impact overall health care access and impact this progress.

As Michelle pointed out, the lack of health care and other infrastructure is partially the result of corruption by Puerto Rican government officials. In 2016, Ricardo Rosselló -- son of the former governor of Puerto Rico -- came into office. His political party, New Progressive Party (NPP), advocates for the statehood of Puerto Rico, an action the people of Puerto Rico strongly oppose (many want to become completely independent of the United States). In the early '90s, when Rosselló's father was governor of Puerto Rico, the NPP was involved in embezzlement with HIV/AIDS NGOs and non-profits.

According to Anselmo Fonseca, community organizer for Bill's Kitchen (a nonprofit that provides food and other support services to people with HIV), the Rosselló legacy has caused great pain to people living with HIV in Puerto Rico. Fonseca is a long-term HIV survivor. He lost his partner to complications from AIDS in 1991 and was diagnosed with HIV in '95 after moving to Puerto Rico.

"The [HIV] stigma does exist, but we emerged as activists after finding out our status," said Fonseca. He consistently called out the corruption in Puerto Rico's government during the early '90s when the AIDS crisis on the island was at its peak. San Juan AIDS Institute and two other non-profits created to help HIV patients were caught diverting money to the NPP. Jose Granados Navedo, former house vice president of the NPP, resigned after admitting that he took a $200,000 political donation from an AIDS Institute official. Another NPP senator, Freddy Valentin, was arrested on charges of extortion and money laundering.

Ricardo Rosselló, the current governor, is a social and fiscal conservative who opposed same-sex marriage and is against gender studies in public schools. He has also supported the privatization of public utilities and other government functions in a non-transparent manner that raises conflict of interest issues. Meanwhile, it took 11 months for electricity and other basic services to be fully restored to Puerto Rican neighborhoods.

It comes as no surprise that, given the infestation of corruption found in the political party affiliated with former Governor Rosselló, Rosselló Jr. would also be caught up in an ordeal affecting the HIV-positive community of Puerto Rico, among others. Despite these tragedies, the people living with HIV in Puerto Rico stay hopeful and strong, even after all these years living with the virus.

Giuliani Alvarenga is a UC Berkeley alumnus who double majored in English and gender & women's studies. He is a Sidley Austin Pre-Law Scholar and wrapping up his two-year clerkship with Munger, Tolles, & Olson before he begins law school.