Treatment DENIED: Cross resident with breast cancer disqualified for Medicaid program because he is a man

Raymond Johnson checked himself into the emergency room last month for a throbbing pain in his chest.

The 26-year-old was stunned when the doctors delivered his diagnosis -- breast cancer.

Uninsured and unable to pay for costly surgery and chemotherapy, the Cross resident followed the advice of his patient advocate and applied for a Medicaid program that covers breast cancer treatment.

A few days later, Johnson got another surprise. He was denied for the program because he is a man.

The Breast and Cervical Cancer Prevention and Treatment Act, a federal law enacted in 2000, uses Medicaid funds to cover treatment for breast cancer or cervical cancer patients who otherwise wouldn't qualify for the state and federally funded health insurance program for the poor and disabled.

Patients must meet a host of eligibility requirements. According to the South Carolina Medicaid agency, Johnson met all except one: Men aren't allowed.

"Cancer doesn't discriminate, so this program shouldn't discriminate," Johnson said.

The state Medicaid agency agrees.

On Friday, the department called the federal policy "discriminatory," and for at least the second time in two years is calling on the Centers for Medicare & Medicaid Services to change it.

"We are again urging CMS to reconsider," the S.C. Department of Health and Human Services said in a statement. "It's a very clear example of how overly rigid federal regulations don't serve the interests of the people we're supposed to be helping."

The Centers for Medicare & Medicaid Services did not return calls seeking comment.

The federal department's guidelines for the breast and cervical treatment program say women must be diagnosed through "early detection" programs funded by the Centers for Disease Control and Prevention, another federal agency.

In South Carolina, such screening is offered to uninsured women between the ages of 47 and 64 who meet certain income guidelines.

The Centers for Medicare & Medicaid Services neither recommends nor covers routine breast cancer screening for men, meaning they "may not be considered screened" under the treatment coverage program, according to its guidelines.

The Health and Human Services Department questioned the requirement more than two years ago, when it attempted to extend Medicaid coverage to a man who had breast cancer.

The Centers for Medicare & Medicaid Services responded in a January 2009 letter, saying: "In order to change the eligibility requirements, Congress would need to change the law."

Teresa Pischner, a "Breast Nurse Navigator" with Roper St. Francis Healthcare where Johnson gets chemotherapy every two weeks, said an amendment should be considered.

"It was shortsighted to exclude men who meet the same eligibility requirements," Pischner said.

The American Cancer Society estimates that 2,140 new cases of breast cancer in men are diagnosed annually in the U.S.

In South Carolina, 16 men with breast cancer diagnoses have applied for coverage through the Medicaid breast and cervical cancer program since 2007. Three of them met all the eligibility requirements but were denied because they were men, said Jeff Stensland, Health and Human Services spokesman.

About 1,180 women are enrolled in the treatment coverage program, according to the department's most recent figures.

A spokeswoman for the American Cancer Society's lobbying group in Washington, the Cancer Action Network, said that before federal law established the treatment coverage program in 2000, early detection efforts caught breast and cervical cancer in uninsured women, but those patients still had insufficient money to pay for treatment.

"The intent of the law was to fill that gap," said Mona Shah, associate director of federal relations for the network.

Male breast cancer patients and patients with other types of cancers will be eligible for private health insurance once federal health reform is fully implemented in 2014, Shah pointed out. She said it is unclear what will happen to the Medicaid program for breast and cervical cancer in the coming years.

As it is, though, health care providers must cobble together resources to treat Johnson and other men in his position, said Pischner, the nurse navigator. Patients pay what they can but rely heavily on hospitals' charity care, free or discounted medicine from pharmaceutical companies and other donated services, she said.

Johnson sees doctors and a surgeon at Trident Medical Center in North Charleston and gets chemotherapy at Bon Secours St. Francis Hospital in West Ashley.

Both are more than an hour from his family's trailer in Cross, so he received gasoline cards from Share Our Suzy, a Columbia nonprofit support group for breast cancer patients, to help him pay for transportation to treatment.

Even before his diagnosis, Johnson had trouble finding work laying tile, his trade. As a cancer patient, it's even tougher, he said.

"I've been spending a lot of time sitting down, and I'm not a sit-down person," he said.

Send us your breast cancer stories

Has your life been touched by breast cancer? If so, as part of October being Breast Cancer Awareness Month, The Post and Courier would like to hear from you.

Tell us about your experience with breast cancer, whether it was you, a friend or a family member who received the diagnosis. What is the worst part of the disease? What lesson did you learn that could help someone else?

Stories must be less than 350 words. Photos of you or your loved one are welcome and appreciated.Send your story by Sept. 20 to lgough@postandcourier.com with the subject line 'breast cancer.' Please include your name, address and phone number.