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.
Sex Discrimination Law Demands 'Respect'
"Now, if a patient divulges he or she is transgender, if the doctor consistently mixes the genders or misnames someone or treats anybody in unkind ways, [the transgender patient] has recourse to file complaints," said Villano.
The law does not require insurance coverage, but "basic respect," he said.
That is what 37-year-old Shane Morgan said was missing last August when he developed a urinary tract infection on a Friday. He couldn't get an appointment with his doctor, so he went to a grocery store clinic seeking antibiotics.
"I was in an open seating area and the nurse looked at the paperwork and looked at me and she said, 'You don't have a UTI, you have an STI (sexually transmitted infection)," said Morgan.
When he whispered to her that he was transgender, hoping they could speak privately about his female genitals he said the nurse was "very rude and uncomfortable" and refused to ask his symptoms or treat him.
"I am short, stocky, with a beard and am bald, but you can't judge a book by its cover," said Morgan, who has had his breasts removed and is on testosterone.
In the end, she said, "I am not comfortable with your anatomy," and handed him an over-the-counter product. "I was both shocked and floored," he said.
"Medical professionals take an oath to do no harm, and not providing care, regardless of what a person looks like, you could do them harm," said Morgan, who by Monday had a full-blown kidney infection.
As for Kallio, he spoke to hospital officials after both incidents of hostility, telling them he'd had "difficulty" communicating with them.
"In the first instance, I think the surgeon had a complex feeling of moral objection. A certain type of judgment and suspicion was made," said Kallio.
"He was an experienced surgeon and I needed the benefit of his opinion," said Kallio. "He didn't know what to call me ... and he had trouble with my transgender status. It was very overt, but at least he had the forthrightness to talk about it."
In the second instance, Kallio said the oncologist may have felt "de-skilled and defensive."
"Overall, they don't know what to do or how to handle your case," he said. "The endocrine stuff really intimidates them. They find your case terrifying and fear liability."
As a result of both incidents, he had to find new doctors. The experience was not only "demoralizing" but has likely affected Kallio's long-term health. So far, he has no idea if the cancer has come back.
"I have not been able to go back for follow up checks because I was forced into an HMO that does not accept the oncologist who is willing to treat me, so I will need to find another congenial provider who is willing to treat a transgender person," he said.
As for the new healthcare law and its ban on sex discrimination, Kallio said the clarification for transgender people is "a huge event."
"It is very important to me and other people that we don't face those kinds of obstacles," he said. "I am medically savvy with a medical background, white and speak English. If I have every advantage, it doesn't bode well for other people."