Over the weekend, six members of the Presidential Advisory Council on HIV/AIDS (PACHA) resigned in protest of the American Health Care Act bill, saying Trump “doesn’t care” about people living with HIV. Founded in 1995, PACHA advises the president and the Secretary of Health and Human Services on healthcare policies that will combat the spread of HIV and help people living with the virus. Unlike Senators Clinton and Sanders, Trump declined to meet with council members during his campaign, and took down the Office of National AIDS policy site after his inauguration.
“What did it for me was the passage of the AHCA,” through the House of Representatives, Scott Schoettes, a lawyer with LGBT nonprofit Lambda Legal and a former member of PACHA, told Gizmodo. Schoettes’ resignation prompted five other members to leave as well. Now 15 remain. They feel the healthcare bill, passed by the House, then rewritten in secret and awaiting senate approval, would be catastrophic for people with HIV.
In its bid to lower the federal deficit by reducing the amount of money the government spends on healthcare, the AHCA reworks and in many ways, weakens Obama-era protections for people with preexisting conditions, including HIV/AIDS. While Speaker Paul Ryan famously promised that “people will be better off with pre-existing conditions under our plan,” the AHCA would let insurers put people into separate “high risk pools,” which can raise their premiums and copays on prescriptions. Of the 1.1 million people living in the US with HIV, only around 40% have access to lifesaving medications. If premiums and copays go up, that number is likely to drop.
“Given how little actual facts, actual science, [or] health policy expertise played in the formulation of the bill that passed through the house,” Schoettes continued, “I became aware that this was not an administration with which I could actually work and be effective.”
From the resigning members’ open letter published in Newsweek:
The Trump Administration has no strategy to address the on-going HIV/AIDS epidemic, seeks zero input from experts to formulate HIV policy, and—most concerning—pushes legislation that will harm people living with HIV and halt or reverse important gains made in the fight against this disease.
While many members of the public are unaware of the significant impact that HIV/AIDS continues to have in many communities— or that only 40 percent of people living with HIV in the United States are able to access the life-saving medications that have been available for more than 20 years—it is not acceptable for the U.S. President to be unaware of these realities, to set up a government that deprioritizes fighting the epidemic and its causes, or to implement policies and support legislation that will reverse the gains made in recent years.
Grissel Granados, who coordinates youth HIV prevention at the Children’s Hospital Los Angeles, joined PACHA during the Obama administration and had hoped to see policies that made preventative care easier for transpeople, people of color, and undocumented immigrants. All of whom face higher HIV transmission rates, and numerous barriers to healthcare access, even if they don’t necessarily have more unprotected sex.
“It just didn’t feel right for me anymore to stay on the [PACHA],” Granados told Gizmodo. “I didn’t want to feel like I was in any way related to this administration and the terrible things that they’re doing.”
Now 30, Granados contracted HIV perinatally from her mother and has been living with the disease her entire life. New research suggests that, with access to treatment, life expectancy for people living with HIV could soon approach parity with those without the disease. But Granados explains that the AHCA isn’t equipped for the decades long, comprehensive care necessary for people living with HIV for entire lifetimes.
“Because HIV impacts your immune system, if your HIV isn’t under control, it can also make you vulnerable to other illnesses,” she said. “It’s not just about seeing a doctor for HIV between two to three or four times a year. It’s also about seeing other specialists a lot of the time. Those copays quickly add up. If you’re not eligible for Medicaid, have higher premiums or aren’t eligible for insurance, it really becomes a problem.”
Even more dangerously, the Wall Street Journal reports insurers could, via the AHCA provision scaling back the ‘essential benefits’ mandate, re-impose lifetime limits on coverage, which were banned by the ACA.
This sets a finite cap of say, $1 million, on the total amount of money insurers dispense to one person over their entire life. People with HIV are living longer than ever. But as Granados explains, under the AHCA, they’d be much more likely to reach or even exceed their insurance cap because of the frequency of treatment and doctor visits, leaving them especially vulnerable as they reach old age, typically the time where most people require the bulk of medical care in their life.
“By that time, what’s gonna happen? It’s a nightmare to think we won’t have access to healthcare when we need it the most,” she said.
Both Schoettes and Granados agree the ACA wasn’t perfect (many people with HIV routinely were told they earned just enough to disqualify them from cheaper coverage plans), by most metrics of success—the number of people tested for HIV, number of people with HIV referred to care, percentage of people no longer at risk of transmitting the virus—they were making progress. That’s what’s at risk.
“We were seeing gains,” Schoettes said. “That’s our biggest concern, is that if we reverse what we did with the ACA, we’re going to reverse those gains.”