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Tips for Families Fighting for Coverage of Pediatric Cancer Treatments

Tips for Families Fighting for Coverage of Pediatric Cancer Treatments

When it comes to reimbursement for cancer treatments, the brave new world of managed care may seem like the La Brea Tar Pits. Through its Ombudsman program, the Candlelighters Childhood Cancer Foundation has made it a top priority to help families of childhood cancer patients navigate this treacherous terrain. At the Foundation's 25th anniversary conference, Grace Powers Monaco, jd, mentor to Gib Smith who directs the Candelighters Ombudsman Program and Director of the Medical Care Ombudsman Program of the Medical Care Management Corporation, described some sure-fire methods for prying money out of recalcitrant insurance companies.

"Managed care makes it difficult for families that often have complicated health technology care needs," said Monaco. But even something as simple as the ill conceived language in a letter to the insurance company can sink a claim. In any correspondence, the doctor, if medically possible, should echo the criteria outlined in the insurance contract, said Monaco.

Moreover, certain words are almost guaranteed to kayo a claim. In one case, it finally became medically possible to reconstruct a survivor's orbit years after she'd had retinoblastoma. The doctor mentioned in the correspondence that "this will have a wonderful cosmetic effect," said Monaco, and "that one word kicked the whole thing in the dumpster." (Candlelighters intervened and an "enlightened" and grateful company agreed that surgery was medically necessary.)

"Your doctor must not use the words 'experimental' or 'investigational' in any correspondence," Monaco emphasized. "Compassionate" is another word that will certainly undermine eligibility, said Monaco, because the insurance company will automatically assume it refers to a compassionate IND (investigational new drug) and deny it as experimental.

If a child is receiving treatment through a clinical trial, that does not necessarily mean the treatment is experimental, Monaco explained. "It may not even be in the nature of investigational. Usually a POG or CCG protocol is involved and the docs are certain that the therapy is going to benefit the child; the head-to-head [comparison] is just fine-tuning. We know the therapy is going to benefit the child."

Defense Against Insurance Company Foot-Dragging

One great defense against insurance company foot-dragging is what Monaco called the "getting smart parent syndrome." When a claim is denied because a treatment allegedly is experimental or investigational, the parent should write a letter to the company asking why. The letter should ask for citations to the policy language, the company's rules and the literature that was relied on in denying the claim.

On top of that, request the names and curriculum vitae of any physicians reviewing the treatment, internal or external to the company, Monaco advised. "You may get a phone call in 2 days saying, 'Oh, we made a mistake.' The company is acknowledging that they didn't investigate your claim (which they have an obligation to do) or they had it reviewed by someone unqualified to review this specialty."

"Sadly, there are some few companies that deny everything unless pushed," she added. "If coverage is denied after reason and pressure, don't be discouraged; if we have the case reviewed by independent pediatric oncologists and they agree that the care is medically necessary, dollars to donuts, we can get it paid for. Even specific exclusions for bone marrow transplants may be beatable."

Even denials of coverage for very new treatments do not have to stand, said Monaco. "The literature they [the companies] rely upon is 6 months to 2 years behind what your cutting edge docs know about. We have had a variety of cases where we knew that articles would come out in the next 6 months that would demonstrate that what your child was going to get is the standard of care. The physicians got permission of the authors to have the data released to us to share, under agreement of confidentiality, with the health plan."

The bottom line, according to Monaco, is that "it is not the intent of companies to preclude coverage of medically necessary treatment.Therefore, if their policy language is such that it's behind the times and a treatment has become recognized, or standard of care, we have found they will listen to reason and include it."

The Candlelighters Childhood Cancer Foundation is located at 7910 Woodmont Avenue, Suite 460, Bethesda, MD 20814-3015; phone: 800-366-2223 or 301-657-8401; fax: 301-718-2686.

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