Writer Sam Dylan Finch is looking for a surgeon. Finch is transgender, and his plan to undergo gender-affirming surgery has become urgent due to the GOP's progress toward repealing the Affordable Care Act (ACA) and the Trump administration's hostility towards transgender people.
"My timeline kept getting pushed around because of other health problems that I was having," Finch says. "It wasn't concrete before the election, and further, I was willing to wait longer if it meant getting the best possible surgeon. My priority now is to get top surgery as soon as possible, even if it means choosing a less-experienced surgeon in favor of getting surgery sooner."
Finch isn't the only one who feels rushed to take advantage of the healthcare available to him now, out of fear that it will soon be taken away. Anxieties about the future of health coverage have run high ever since the election, and the ACA replacement bill passed narrowly by the House of Representatives this week has only made the outlook more bleak for many Americans. The bill, called the American Health Care Act (ACHA), would eliminate taxes that helped subsidize insurance for millions under the ACA, drastically cut Medicaid spending, and let states apply for waivers allowing insurers to deny coverage for preexisting conditions and essential health benefits like preventive services, mental healthcare, and maternity care. "In the past several months, there hasn't been a day that goes by that I don't come across a patient who is coming in for services for fear they are going to lose part or all of their healthcare," says Deborah Nucatola, Hawaii medical director for Planned Parenthood of the Great Northwest and the Hawaiian Islands.
Christy Valentine of Valentine Medical Center in New Orleans, Louisiana, has seen a similar sense of urgency. "Normally you have to convince people of the importance of something like a mammogram. Right now, they want everything—well visits, cancer screenings, immunizations," she says. Many patients are looking for more. "I see lots of people, moms and other caregivers especially, thinking way down the line and preparing their families for the worst-case scenario," Valentine adds. "It's good to see people connect to their healthcare, but it's sad to know that they're doing this because they think they're going to lose it. They're waiting for that day when we go back to the haves and the have-nots, and they're preparing to be a have-not."
Nucatola recounts the story of a patient who had an abnormal Pap smear followed by an abnormal colposcopy (a biopsy of suspicious cervical tissue). Despite being aware of these test results for a year, the patient continually missed appointments for treatment intended to prevent cancer. "When she finally came in for the treatment, a procedure called a LEEP, she flat-out stated during the procedure that she was there to 'finally get this taken care of while I still can,' saying, 'who knows what is going to happen now that Trump is president,'" Nucatola recalls.
The ACA most famously prevents insurers from charging people more or denying them coverage because of preexisting conditions. It also prohibits discrimination on the basis of race, national origin, sex, age, and disability. The department of Health and Human Services issued a rule in 2016 asserting that, under this provision, insurers could not discriminate based on gender identity or pregnancy termination. A federal judge in Texas later blocked that portion of the rule, dealing the first blow to the ACA's nondiscrimination policies. The AHCA weakens these protections almost to the point of nonexistence. Unsurprisingly, many of those scrambling to access care now are the people who have the most to lose if the proposed law is enacted.
Many of the procedures patients are requesting are related to reproductive health. Following the election, medical providers across the country reported a surge in requests for intrauterine devices (IUDs), one of few contraceptive options available with the potential to outlast the Trump presidency. The demand wasn't just theoretical—the number of doctor visits coded for insertion or management of an IUD have risen steadily since November 2016. In January 2017, the most recent month for which data is available, IUD-related visits were up 30 percent over the same time last year. Contraception is considered an essential health benefit under the ACA; under the AHCA, states could apply for waivers to allow insurers to deny contraceptive coverage.
Brittany McElwee, an editor who lives in Washington state, says she and her husband decided that he would get a vasectomy—something they had discussed but not planned to do immediately—in case of changes to their health insurance. McElwee's husband is in the military, so the couple has comprehensive health coverage now, but he plans to leave next year. McElwee currently uses Implanon, a hormonal birth control implant that prevents pregnancy for up to three years. Her implant expires this summer. "We decided to take control of the things in our power. We're afraid that I won't be able to get affordable birth control in the future, and we know we don't want kids. It wasn't a big leap to decide that the vasectomy we always knew would happen should happen sooner. If we decide later in life that we want kids, we'll look to adopt," she said.
Having a baby is an expensive prospect in the US: A 2015 study found that hospitals charge anywhere from under $2,000 to nearly $12,000 for low-risk vaginal births. C-sections can cost twice as much, and add in prenatal and postpartum care and the tab can run up to $50,000. Under the AHCA, states could free insurers of the obligation to cover prenatal and newborn care, and a past c-section birth could be considered a preexisting condition, resulting in denial of coverage.
Rebecca Wender of Brooklyn, New York, gave birth to her first child in 2016. She and her husband are both freelancers—she a massage therapist and dancer, he a photographer—reliant on insurance purchased through the exchange. Though the couple has considered having another child, if the ACA is repealed, they will not be able to afford the birth. "It's very difficult to have a clear conversation about what we want because we feel like everything is hanging in such a precarious balance and we don't know when the scales will tip," she says. "As an older woman on the baby-having scale—I'm currently 38—any future pregnancy will likely be under the current administration so I feel pretty paralyzed right now."
That sense of paralysis is common, and troubling to Valentine. Though many of her patients have reacted to the possibility of losing health insurance by trying to take advantage of their coverage while they have it, Valentine says others simply feel hopeless. "I was talking to a patient about her preventive care and she just stopped me and said, 'These screenings are for cancer, right?' When I said yes, she responded, 'But if you find something and I lose my insurance, then what do I do? You want me to know I have cancer but then not be able to treat it?'" Most of Valentine's patients are on Medicaid and Medicare. Because Louisiana was a late adopter of the ACA's Medicaid expansion, many of those people gained health coverage, some for the first time in their lives, at a moment when the future of Medicaid became very uncertain. "This a complex system, and we were just teaching people how to use it. Before, they were using the system the way they knew how, they way their mom used it, they way their grandmother used it. They were going to the emergency room instead of to a primary care provider, and only going in when they were already sick," Valentine says. "Now people feel like, why do this? Why learn if it's about to go away?"
The sudden pressure to get healthcare before it is out of reach has inspired frustration, anxiety, and despair. "I'm angry that this administration and so many lawmakers don't care whether or not I live or die," Finch says. "And I'm terrified for all the folks out there whose lives hang in the balance. What do we have to do, what do we have to say to prove that our lives are worth protecting?"