Raymond Johnson got the shock of his life when doctors diagnosed him with breast cancer. Not only was he one of the very few men who develop breast cancer each year, but he was also denied health insurance coverage because he is not a woman.
Men are not covered for breast cancer treatment according current Medicaid rules. They make up an estimated 1 percent of all breast cancer cases reported every year, according to American Cancer Society statistics.
Cancer advocates are now rallying behind Johnson and other men diagnosed with breast cancer to change current insurance laws.
Like many women, Johnson discovered a suspicious lump on his breast prior to the diagnosis. He waved it off as nothing, thinking it would eventually go away.
However, when he started experiencing severe chest pain early July, he knew something was wrong and went to the emergency room.
The doctors, just as perplexed as Johnson, first misunderstood his pain, believing it stemmed from his heart. Johnson then showed doctors the lump on his chest area.
He was immediately rushed into a biopsy procedure to diagnose the mass. Within a few days, Johnson was notified that he had breast cancer.
“I didn’t even know men could get breast cancer,” Johnson said in an interview with MSNBC.
“I’m young. I didn’t think anything bad could really happen to me.”
Johnson told reporters he earned a living as a tradesman making about $9 an hour. He worked for a small business that did not provide health coverage for its employees. With a bad economy, he only worked about 30 hours a week, he said in a recent interview.
Like many Americans today, he could not afford private health insurance.
Not sure how he was going to pay for the treatments with his low income, which included chemotherapy and surgery, Johnson applied for Medicaid but was rejected based on his qualifications. He was a single, childless man with no former disability.
Since he didn’t qualify for traditional Medicaid, he was urged by the hospital where he is receiving care to apply for help under The Breast and Cervical Cancer Prevention and Treatment Act.
The statute gives states the option to provide medical assistance through Medicaid to those whose income was 200 percent of the poverty line and had been diagnosed with breast cancer through the Centers for Disease Control and Prevention’s National Breast and Cervical Cancer Early Detection Program.
Upon applying for the aid however, he was rejected again because the program only covers women.
According to state records, this is not the first time the South Carolina Department of Health and Human Services has tried to get coverage under The Breast and Cervical Cancer Prevention and Treatment Act for male patients.
Two other men have also met the act’s criteria, but were denied coverage because they are men.
South Carolina’s Department of Health and Human Services said in a statement that the decision to deny coverage was “really wrong” and has tried on several occasions to get the federal government to change the gender restrictions, without any success.
Johnson was on his own.
However, just as hope seemed lost, Johnson met a compassionate cancer advocate.
Susan Appelbaum, a patient advocate for a local cancer center, told Johnson to appeal the rejections and she would look for other means of aid, according to a report by ABC.
“Breast cancer is not exclusive to women,” Appelbaum shared with ABC. “I know there’s not near as many cases [in men] but it’s certainly an issue to think about. What this 26-year-old man is going to endure, with chemo and radiation and surgery, we’re talking about hundreds of thousands of dollars.”
“This boy is never going to recover financially.”
Already stacked with bills totaling more than $4,000, Johnson is facing the pain of cancer treatment and the financial stress of mounting medical bills.
Appelbaum told ABC that she and her center would help shave off some financial burden for Johnson. Her group is also reaching out to lawmakers and the other communities to have the medical coverage extended to men.
“Cancer doesn’t discriminate, so this program shouldn’t discriminate,” Johnson told reporters.
The National Cancer Institute estimates that 2,140 males were diagnosed with breast cancer in the United States within the last year. About 450 males died after being diagnosed with the disease.
Johnson and other advocates say they are working so the federal government will recognize the need to lift the gender restrictions placed on the supplemental breast cancer programs.
In an email to msnbc.com, a spokesperson for Centers for Medicare & Medicaid stated, “We are working with the CDC and South Carolina to see what options may exist to address this situation. We are committed to ensuring that all individuals who should be eligible for this program have coverage.”
Commenting on the situation as well and the lack of male coverage for breast cancer, Darryl Mitteldorf, the director of the Malecare cancer support group, told The Christian Post, “This is a struggle and a horror.”
“As you imagine, it’s a challenge in this environment where the incidence of male breast cancer is not well understood,” Mitteldorf shared. “[Though] we have good supporting data to back up our demands for male breast cancer to be included in Medicaid...[it’s] a struggle we face. We’re not in welcoming times for expanding insurance coverage.”
“Obviously this is not an easy situation,” he added.
“Whether its breast, lung, or brain, any cancer...excites fear that no one should have to struggle with. When you’re not capable of paying for treatment that might extend your life, this is a tragedy that no society let alone the United States of America should tolerate.”
He said he hopes that Johnson would reach out to his support group, where they would do their best to help him get community support or find a doctor or a clinic that would work pro bono for him.