Manny Alvarez: College Student In Heroic Fight Against Rare Cancer — But Guess Who’s Not Helping

Manny Alvarez is a 23-year-old student at Florida International University in Miami who, last year, started to find strange lumps appearing on his arms and legs. When he went to have the odd but painless growths checked out, Alvarez got the worst possible news.

Not only did doctors tell Manny that the growths were malignant cancerous tumors, the type of cancer that he had was one of the rarest forms known to medical science. In fact, in the entire United States, only between 15 and 80 new cases turn up each year, according to the medical site WebMD.

“It’s a very rare cancer and the doctors pretty much told me it’s about as rare as getting hit by lightning,” Alvarez, who was just 22 when he found out that the cancer had spread to his lungs was now in the deadly Stage Four, told CBS Miami News.

The cancer known as Alveolar soft part sarcoma, or ASPS, “is among the least common sarcomas, representing 0.2-1 percent of large studies of soft tissue sarcomas,” WebMD says.

In fact, ASPS is so rare that even modern medicine has no known effective treatment for the disease. Chemotherapy and radiation are the standard procedure, but ASPS has proven resistant to both.

But when doctors treating Manny Alvarez removed a large tumor from his knee — a tumor so large that it risked breaking his bones and resulted in the young man needing a knee replacement — they found that a new combination of drugs was actually highly effective in fighting the cancer cells.

When they experimented on the tumor on a laboratory, they killed the whole tumor. That’s when the doctors decided that Manny’s best chance of beating the disease that he’s been bravely battling for the past year was to try out the experimental formula on the ASPS tumors that still remained in his body.

This sounded like a great idea to Alvarez and his family. In fact, it sounded like a great idea to everyone. Everyone, that is, except Manny’s insurance company, Florida Blue. The treatment that may save Manny’s life costs about $260,000 — and the insurance company won’t pay.

“At times, our members and/or their physicians inquire about the use of experimental drugs or drugs that have not been adequately tested and approved for a particular use,” the company said in a statement.

“Florida Blue’s team of physicians conducts a thorough review of the proposed treatment. Based on their medical expertise and scientific evidence on the effectiveness of the treatment, they either approve or deny the request.”

The Manny Alvarez story comes less than two months after the case of Levi Ross, a high school student with a rare form of cancer, also received national publicity when his insurance company refused to pay for his life-saving surgery.

Manny Alvarez is appealing the decision — but otherwise he says he’d rather put his energy into fighting the cancer than into a frustrating battle with his insurance company. His friends have started a crowdfunding page, asking strangers to help out where his insurance company refuses. So far, they’ve raised about $87,000. But there’s still a long way to go.

[Image: WFOR-TV Screen Grab]