For Raymond Johnson it was bad enough being diagnosed with cancer when he was just 26 and with no health insurance, but his shock was only aggravated when he was denied Medicaid, because rules say men are not covered for breast cancer.
Johnson, a construction worker from Charleston, S.C., is one of the roughly 2,000 men who develop breast cancer each year -- just 1 percent of all breast cancer cases.
But doctors say even though the numbers of cases may be small compared to the number of women who get the disease, what male breast cancer patients suffer is no less real.
When Johnson developed the lump, he said 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.
But then over the July 4 weekend, he said, 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."
Johnson said he was shocked, because he'd never had health issues before, but more than that he was concerned about how he would pay for treatment.
"I get paid $9 an hour, I don't know how I'm going to pay for it," Johnson said he told his doctors.
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.
He and his family met with Susan Appelbaum, a breast cancer navigator and patient advocate for the Charleston Cancer Center, and he told her he had applied to the Department of Health and Human Services for Medicaid.
On July 11, he called Appelbaum to tell her he'd been denied coverage because he's a man.
"I told him to appeal and, in the meantime, I started to reach out to the community and anyone that could give me advice on how to help him," Appelbaum said.
Medicaid told Johnson that the supplemental breast cancer coverage is for women only and that it's written as such in the https://www.cms.gov/MedicaidSpecialCovCond/02_BreastandCervicalCancer_PreventionandTreatment.asp target="external">Breast and Cervical Cancer Prevention and Treatment Act of 2000, Appelbaum said.
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 these benefits apply 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.
Though health care reform may change Johnson's position because single, childless men and women will then be eligible for Medicaid if they make under a certain income, for now, Johnson is left on his own.
Dr. Marisa Weiss, the founder of Breastcancer.org, told ABC News there is definitely something wrong with the situation.
"We treat people, including men, with breast cancer who have Medicaid all the time," Weiss said.
When there's an unusual case with HHS, she said, it's 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.
" I've never had a male denied national insurance [because] of their gender," said Weiss, who is based in Philadelphia.
Appelbaum, who has about 100 patients that she counsels from diagnosis through treatment, surgery and into cancer survivorship, said Johnson is the only male breast cancer patient at the Charleston Cancer Center. In her career, she said, she's only had one other male breast cancer patient.
"Breast cancer is not exclusive to women, I know there's not near as many cases [in men] but it's certainly an issue to think about," she said. "What this 26-year-old man is going to endure, with chemo radiation and surgery, we're talking about hundreds of thousands of dollars. This boy is never going to recover financially."
Appelbaum said that while the Center will be able to help with some of his finances for breast cancer treatment, the bills for his chemotherapy and eventual surgery will be astronomical.
Johnson, who was sent to the not-for-profit Roper Saint Francis Hospital for treatment, said his bills have already added up to about $4,050 since July.
"It's stressful on me and my family, especially now that I can't work because of what the chemotherapy does to my body," he said.
He is scheduled to get chemotherapy once every two weeks for the next two months, after which he will receive chemo once a week for 12 weeks. Surgery to remove the lump will be arranged soon after that.
So far Johnson has applied for Medicaid twice, and he said that both times representatives have told him his applications were rejected because they're not able to provide a man coverage for breast cancer treatment.
Johnson said the case workers have told him they would research how they can possibly cover him and that he should follow up with them.
In the meantime he keeps getting bills almost every time he gets the mail, he said. Appelbaum said she's contacted community leaders and lawmakers in Congress hoping for a change.
The only positive response she said she's received has been from the office of Rep. Tim Scott, R-S.C., providing her with names of local organizations and individuals who might be of assistance for now.
"It's always one day at a time," she said. "We will continue to try our best because we want to help people, it's our job. For now we'll put Raymond on a payment plan, even if it's only $5 per month that he's able to afford, we'll take it, and we'll never send him to collections."