For the first fifty years of his life, New Yorker Jay Kallio had no problem getting the healthcare he needed. A volunteer EMT since age 15, he knew the medical community inside and out. When he came out as transgender and transitioned at age 50, though, his experience with doctors and nurses changed wildly—and almost cost him his life.
“I have this very stark before and after experience,” says Kallio. “It’s totally different being a transgender person trying to access care.”
At age 53, Kallio found a lump in his chest. After a biopsy, his doctor diagnosed him with aggressive, necrotic breast cancer. But no one contacted Kallio to tell him this diagnosis. Kallio found out “virtually by accident,” when his radiologist called to ask him how he was coping. “I said ‘What diagnosis?’”
Stunned, the radiologist scheduled Kallio for a mastectomy consultation—but the surgeon delayed his appointment for weeks. When he informed the cancer center that he would be seeking care elsewhere, his surgeon told him he had a “real problem” with Kallio’s “transgender status.” “When you’re removing a cancer that is so aggressive it would kill me, you want that done right,” said Kallio, “not by somebody who thinks you’re a freak or your life isn’t worthwhile.” (Kallio later learned that the surgeon was a major donor to anti-gay political candidates.)
Kallio found another surgeon for a successful mastectomy, but faced hostility from his oncologists once they found out he was transgender. He again found treatment elsewhere, but the delays compromised his care and demoralized him. To make matters worse, he was turned away from several breast cancer support groups because of his transgender identity. “It made going through chemo a very isolating, lonely experience,” he says.
Kallio’s case is not unique. Every day, transgender Americans face discrimination, disrespect and hostility from both medical center staff and insurance providers, pushing many at-risk patients to delay medical care or put it off altogether. But if all goes as planned, the Affordable Care Act will transform medical care for transgender people.
The transgender community is plagued by epidemic levels of workplace discrimination, which contributes to widespread unemployment among transgender people. That has long put employer-based coverage out of reach for many transgender people. The few who could afford it sought coverage in the individual insurance market, which was frequently a dead end, since many plans considered trans identity to be a pre-existing condition disqualifying them from coverage. If unemployed trans people looked to government programs like Medicaid to access healthcare, they often learned that they were ineligible (low-income adults without children or disabilities are rarely eligible for Medicaid).
Those who could get on a policy often struggled to obtain coverage for their care, whether it related to their transition or not. Most plans refuse to cover “transition-related care,” which one might assume includes counseling, hormones and surgeries. However, insurers have saved on their bottom lines by categorizing any treatment transgender patients receive as transition-related, from estrogen pills down to antibiotics for fighting the common cold.
Mara Keisling, executive director of the National Center for Transgender Equality, cited a trans woman who broke her arm playing softball. She was insured through an employer plan so assumed that her hospital services would be covered. When she received her bill in the mail, however, she learned the company refused to pay for the treatment: since she obtained the injury playing in an LGBT softball league, they reasoned, the injury was “transition-related.” In another case, a transwoman suffered a coronary event due to prolonged stress caused by dealing with her insurer. The company’s first reaction was to admit to its role in her condition—then use the identical justification in refusing to pay for her EKG. The insurer reasoned that since refusing to pay for her transition-related care necessitated the treatment, the EKG itself was transition-related. “One friend of mine is anemic,” Keisling continued, “and her insurance refused to cover her treatment because she had ‘transsexual blood.’”
The Affordable Care Act will end many of these absurd exclusions. In 2014, the Patient’s Bill of Rights will prevent insurance companies from denying coverage based on pre-existing conditions. What’s more, the ACA will bring Title VII federal nondiscrimination protections to the healthcare field. The Department of Health and Human Services, responding to both pressure from LGBTQ advocacy groups and precedents set by recent federal court cases, recently confirmed that this policy will ban discrimination based on gender identity. This will not only help transgender and gender non-conforming people obtain coverage but will also outlaw the discrimination Kallio and so many others have suffered when pursuing treatment. Considering that one in five transgender people have been refused medical care based on their gender identity, these discrimination protections are critical.
Another major ACA win is the funding for LGBT cultural competency trainings. While many Americans find a trip to the doctor unpleasant, the National Transgender Discrimination Survey found that one in four trans people has been verbally harassed at a doctor’s office or hospital, and a small but striking 2 percent have been physically assaulted while attempting to receive medical care. “Trans people have a lot at stake when they go to the doctor,” says Dru Levasseur, a transgender rights attorney at Lambda Legal, where a transphobic physician or staff person can make an already vulnerable experience unbearable. “Many trans people we see end up waiting and going to the emergency room instead of going to a doctor’s office because they are so traumatized by providers who aren’t respectful.” Others will drive for hours on end to reach a clinic they can trust.
The cultural competency trainings, which have already been implemented in big-city health departments like New York’s, teach staff to provide respectful care oriented to LGBTQ patients’ needs. Among those receiving training is the now-tripled staff of the National Health Service Corps, which places physicians in underserved areas across the country.
“A lot of our models for ‘doing it right’ when it comes to cultural competency are in community-based health clinics in urban areas,” said Levasseur, “so there’s a gap for people who are living in rural areas who can’t go to clinics in New York or San Francisco.” Providing trainings to Corps members should improve trans healthcare experiences across the country. The law is also providing aid directly to LGBT-friendly community health centers and, to better assess what resources transgender patients need, is mandating that HHS includes sexual orientation and gender identity in its national data collection efforts starting in 2013.
The most important piece of the ACA for transgender people might also be the most contentious: the Medicaid expansion. Extending Medicaid eligibility to all people under 133 percent of the federal poverty level (around $14,000 per year for a single person) is great news for transgender people, who are four times as likely as the general population to live on less than $10,000 per year but are routinely ineligible for Medicaid. As of January 2010, for instance, low-income adults without dependent children—a demographic transgender people largely fall under—could not qualify for Medicaid in forty-three states. Single trans people are among the 16 million Americans who will be newly eligible for Medicaid in 2014.
The future of this provision is uncertain, particularly in red states, but many doubt that even the most ideologically driven legislators would leave billions in federal money on the table. “Trans people are exceptionally good at exerting their rights,” Keisling said, assuring that even if Governor Perry and Co. reject the expansion, the spark for healthcare equality will not be stamped out. “We’re not going to stop until all of the discrimination stops,” she continued. “We’re just going to keep fighting, particularly against the government’s discrimination against transgender people.”