MIAMI (CBSMiami) – A college student who is fighting cancer is also fighting his insurance company.
Last year, Manny Alvarez, 23, was diagnosed with alveolar soft part sarcoma.
"It's a very rare cancer and the doctors pretty much told me it's about as rare as getting hit by lightning," he explained.
"There's less than 100 cases diagnosed every year in the United States," said Dr. Breelyn Wilky, a sarcoma specialist and Manny's oncologist at Sylvester Comprehensive Cancer Center.
Dr. Wilky told CBS4's Maggie Newland that Alvarez's cancer is so rare, there is no standard treatment, but after he had surgery for a tumor in his knee, researchers found a drug combination that killed tumor cells. Now they want to see if that drug combination will also shrink the tumors throughout his body.
"We don't know for sure that just because it works in a test tube it's going to work in a person," said Wilky. "All we're asking is just a little bit of time to try it."
But she says Alvarez's insurance company, Florida Blue, won't pay for the $266,000 treatment.
"I provided them with the data. Unfortunately because these drugs are not approved for sarcoma they were unable to provide coverage," said Wilky.
A statement from Florida Blue reads:
Florida Blue strives to provide our members access to the highest quality medical care. This includes access to pharmaceuticals that are clinically proven and approved for specific treatments by the U.S. Food and Drug Administration (FDA).
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. 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.
Members have the right to appeal if they feel their proposed treatment is inappropriately denied. This process includes an internal review of the case by Florida Blue medical professionals, as well as an independent external review by physicians who are experts in the particular medical field. If a case goes to external review, Florida Blue will re-evaluate the appeal once that expert review is received.
With any denial of coverage, Florida Blue works closely and directly with the members and their physicians, providing thorough documentation and medical justification based on available clinical studies and research.
It is important to note that Florida Blue regularly monitors and evaluates new advances in medical and pharmaceutical treatments. We are continually updating our coverage policies based upon ongoing medical research and evidence-based conclusions.
Dr. Wilky says she appealed the decision and Alvarez's family will appeal as well.
"I think we'll find a way," said Alvarez. "That's been my whole process in the year and a half since I've been diagnosed I think there's always a way I've just got to find it."
Meanwhile friends have set up a website to raise the money for his treatment. If you'd like to help click here.
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