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A man with breast cancer is denied treatment because he is not a woman

Dominika Osmolska Psy.D.'s picture

A 26-year-old man diagnosed with breast cancer cannot get treatment without putting himself into astronomical debt. That’s because he does not have health insurance and because Medicaid, the government program for the poor and uninsured, will not pay for his treatment because he is not a woman.

The shock was bad enough for the young Raymond Johnson, a construction worker, to receive the ultra-rare diagnosis of breast cancer as a man. But his shock – and doubtless, his indignation – only deepened when he discovered that all avenues to having it treated without incurring massive personal debt were closed to him.

The case is a classic study of the corrosive consequences of our health care system, such as it is. It shows in stark clarity precisely how the poor are least served by it, and how the lack of health insurance leads to catastrophic outcomes that will cost someone – usually the victim – enormous money which could have been saved with early intervention.

Johnson earns $9 an hour on his job in Charleston, S.C. When he developed a lump on his breast, he ignored it, thinking it was just a cyst and wanting to avoid the cost of a doctor's visit. Besides not having health insurance, he said, his job for a small construction company does not allow him to make ends meet as it is.

Over the July 4 weekend, however, the lump caused an unbearable pain and he rushed to the emergency room.

"They thought it had to do with my heart, but I showed them the lump and they sent me to get a biopsy," Johnson said. "That Tuesday, I was notified I had breast cancer."

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The young man had never had any health issues, so the diagnosis was a complete shock. After that shock abated, Johnson was confronted with the practical realities of how to pay for his treatment. Though Johnson wouldn't normally qualify for Medicaid in the state of South Carolina because he is a single, non-disabled man with no children, he was advised to apply for a special supplementary program created specifically for those diagnosed with breast cancer whose income is 200 percent of the poverty line ($21,780 per year) -- even those with no dependent children. What Johnson didn't know is that the program, created by the Breast and Cervical Cancer Prevention and Treatment Act, is women's only.

He was sent to the Charleston Cancer Center to seek treatment and arrange for surgery to remove the baseball-sized tumor, according to his medical records at the center. While there he connected with a breast cancer advocate and patient navigator who helped him apply to the Department of Health and Human Services for Medicaid.

On July 11, he called to tell her he'd been denied coverage because he's a man.

Medicaid told Johnson that the supplemental breast cancer coverage is for women only and that it's written as such in the Breast and Cervical Cancer Prevention and Treatment Act of 2000. Jeff Stensland, public information officer for South Carolina's Department of Health and Human Services, agrees that the situation is "really wrong" but says that they can't get around this "overly rigid interpretation" of the Act, which specifically states that the benefits apply only to women with breast or cervical cancer. South Carolina DHHS has urged the federal government to change their opinion to allow the program to cover men, but has been told on "numerous occasions" that it is only for women, says Stensland.

Although health care reform may change for single, childless men and women who will then be eligible for Medicaid if they make a certain low income, for now, Johnson is left on his own.

Dr. Marisa Weiss, the founder of Breastcancer.org, said there is definitely something wrong with this particular situation. "We treat people, including men, with breast cancer who have Medicaid all the time," Weiss said. She added that unusual cases like Johnson’s are a matter of being persistent, making several calls, and speaking to a lot of people until you reach the right one that will take the case, she said.

While we hope that will turn out to be the case for Mr. Johnson, it is truly an insult and a wrong that he should have to do this while he his fighting for his life.