As Senate Republicans are tying a bow on their health-care bill, the text of which they will reportedly release this week, advocates of people living with HIV and AIDS—among the country’s most reliant on access to affordable care—are ramping up efforts to resist what they fear will be damaging changes in the proposed legislation.
“You can’t argue or convince someone to have empathy for others,” Scott Schoettes, a former member of the Presidential Advisory Council on HIV/AIDS, told me by phone. “The President cares mostly about winning and that involves trying to get legislation passed. That’s all he’s focused on when it comes to the American Health Care Act. There’s been very little thought given on how it will affect people on the ground, like people living with HIV.”
Schoettes, who was appointed to the council in 2014, resigned last week along with five other experts over President Donald Trump’s Administration’s perceived lack of a strategy to address the ongoing epidemic. He chronicled his grievances in a scathing opinion piece published in Newsweek last Friday.
The Trumpcare bill is reportedly being crafted in secret by Senate Majority Leader Mitch McConnell and 12 other of the Senate’s most conservative, white male republicans. This is actually a boon for Schoettes, who is at the moment attempting to meet with as many of the party’s moderates ahead of the vote on the bill, which is slated for as early as next Thursday.
“The good news is that they’re free; they’re not actually engaged in the writing of the bill because everyone has been locked out of seeing what’s in it,” said Schoettes. “There’s a reason we resigned the council now—it’s to try to jump into the debate. I hope that these more moderate senators—who will have great say in what will be in the bill—will meet with us so that when we all see what’s in it they can actually respond to it and hopefully make it better.”
Schoettes, who is HIV positive, is particularly mindful of how transformative Obama’s Affordable Care Act has been for people living with HIV and AIDS. “For years, people living with HIV were unable to buy insurance, either due to their pre-existing condition, or lack of affordable coverage, which locked them out of the individual insurance market.” By contrast, under the current law, health insurance companies can’t refuse to cover people with preexisting conditions or charge them more.
Schoettes also cites the ACA’s expansion of Medicaid to millions of low-income Americans as vital to people with HIV/AIDS, pointing out that “a tremendous percentage of people living with HIV are living at or near the poverty line.”
As HIV Project Director at Lambda Legal, which advocates for LGBTQ people and people living with HIV, Schoettes has written successful amicus briefs—documents filed in cases by non-litigants with a strong interest in the outcome—when there have been challenges to the ACA before the United States Supreme Court. “It’s taken us so long to get here,” he said. “It’s so scary to think that we’re going back to a pre-ACA for people living with HIV.”
Even before Trump took office there were warning signs his administration would be less than interested in discussing effective HIV/AIDS policy. Schoettes recalls that HIV advocates had met with members of both the Hillary Clinton and Bernie Sanders campaigns during the 2016 primary season but were unable to get a meeting with then-candidate Trump’s campaign.
That climate of indifference has remained through to this day. When the council last met in March, Schoettes recalls seeing a representative from the White House in the audience as opposed to taking a seat at the table alongside the council members to participate in the discussion. According to Schoettes, this was the closest high-level HIV/AIDS advocates have come to actually meeting with the administration.
All of this, he says, is particularly ominous as it relates to the pending legislation. “The Trump Administration has no strategy to address the ongoing HIV/AIDS epidemic, seeks zero input from experts to formulate HIV policy, and—most concerning—pushes legislation that will harm people living with HIV or halt or reverse important gains made in the fight against the disease,” Schoettes wrote in his piece for Newsweek.
Most concerning, he says, is the national apathy regarding the virus. “This is still going on. People forget that and think, ‘Oh we took care of it.’” In fact, according to the Centers for Disease Control and Prevention if the current HIV diagnosis rate persists, about one in two black men who have sex with men (MSM) and one in four Latino MSM in the U.S. will be diagnosed with HIV in their lifetime. These are astounding statistics given that new HIV diagnoses overall fell nearly 20 percent from 2008 to 2014.
Jeffrey Crowley, who served from 2009-2011 as the Director of the White House Office of National AIDS Policy and Senior Advisor on Disability Policy for President Barack Obama, says that one of the biggest contributors to the nation’s overall progress in responding to the HIV epidemic has been the expanded access to coverage under the ACA, mostly through new Medicaid coverage. This is helping to get more people into care, on treatment and virally suppressed. People whose viral loads reach “undetectable” levels through proper treatment have been shown to be non-infectious to others.
“Unfortunately, repealing the ACA would pull the rug out from under the national response to HIV and would create an inflection back toward rising infections,” said Crowley, now Program Director, Infectious Disease Initiatives at Georgetown University Law Center’s O’Neill Institute. “At a time when we are experiencing success in responding to HIV and when we urgently need to respond to the growing opioid crisis, enacting the [GOP’s] American Health Care Act or any similar repeal law would be devastating to the health system upon which all Americans depend.”