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.