Jay Kallio, a former EMT who is disabled with kidney failure, rheumatoid arthritis and now cancer, has struggled to get good medical care, but being transgender stood in the way.
At the age of 50, Kallio transitioned from female to male, but never had gender reassignment surgery, only hormone treatment. "I accept my body as I was born," he said.
But when a suspicious lump was found in his breast and tested positive for cancer, the surgeon was so shocked that Kallio's body didn't match his gender identification -- not knowing whether to address him as "he" or "she" -- that he couldn't bring himself to tell his patient the grim biopsy results.
Now the U.S. Department of Health and Human Services has said that under the Affordable Care Act, it is against the law to discriminate against transgender and LGBT patients in federally funded healthcare programs.
The policy follows a landmark 2010 U.S. Equal Employment Opportunity Commission ruling on sex discrimination in the workplace. LGBT and transgender advocacy groups pursued a clarification from HHS for harassment and gender stereotyping in healthcare settings.
Kallio, who is now 56 and lives in New York City, learned "accidentally" that he had breast cancer when the lab technician called to ask how he was doing with his diagnosis. "Which diagnosis?" Kallio asked, horrified.
And it happened a second time, when the medical oncologist was "hostile" and refused to advise him on treatments.
Later, Kallio, said the doctor apologized: "I don't think it interfered with the quality of your care."
In fact, it did. Having to find new doctors delayed the start of chemotherapy beyond the so-called "therapeutic window" for his particularly aggressive form of breast cancer.
"Our community needs medical providers to know what their obligations are and passing a law is the strongest and clearest way to do that," said Mara Keisling, director of the National Center for Transgender Equality.
The U.S. Census and other federal agencies do not keep track of data pertaining to gender identification and many who are transgender do not go public. But NCTE estimates that between .25 and 1 percent of the population is transgender.
A 2011 NCTE survey, "Injustice at Every Turn," paints a bleak picture of life as a transgender person in the United States. It revealed harassment in education, employment, housing and health care, as well as in the government and prison systems.
The survey also found that one in five transgender people has been denied care by a medical providers including doctors, clinics, hospitals and ambulance drivers.
"We are so vulnerable when we are sick," said Kallio. "I was at the point where I was going to forgo treatment. I had greater trust in the natural course of my cancer than with my providers. No one should be treated like that when they face a potentially terminal diagnosis."
In one of the most egregious cases, a transgender woman who was in a car accident in 1995 and was left unconscious on a Washington, D.C., street, died because hostile firefighters delayed lifesaving measures.
The 24-year-old hairdresser, Tyra Hunter, was born male, but had lived as a woman since she was 14.
"As they removed her clothing, they found the anatomy wasn't what they were expecting and they ceased to provide care," said NCTE spokesman Vincent Paolo Villano.
In 1998, a jury awarded Hunter's mother $2.9 million in damages, determining that the fire department staff had violated the 1977 Human Rights Law.