Tips for Families Fighting for Coverage of Pediatric Cancer Treatments

February 1, 1996
Volume 10, Issue 2

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.

When it comes to reimbursement for cancer treatments, the bravenew world of managed care may seem like the La Brea Tar Pits.Through its Ombudsman program, the Candlelighters Childhood CancerFoundation has made it a top priority to help families of childhoodcancer patients navigate this treacherous terrain. At the Foundation's25th anniversary conference, Grace Powers Monaco, jd, mentor toGib Smith who directs the Candelighters Ombudsman Program andDirector of the Medical Care Ombudsman Program of the MedicalCare Management Corporation, described some sure-fire methodsfor prying money out of recalcitrant insurance companies.

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

Moreover, certain words are almost guaranteed to kayo a claim.In one case, it finally became medically possible to reconstructa survivor's orbit years after she'd had retinoblastoma. The doctormentioned in the correspondence that "this will have a wonderfulcosmetic effect," said Monaco, and "that one word kickedthe whole thing in the dumpster." (Candlelighters intervenedand an "enlightened" and grateful company agreed thatsurgery 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, saidMonaco, because the insurance company will automatically assumeit refers to a compassionate IND (investigational new drug) anddeny it as experimental.

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

Defense Against Insurance Company Foot-Dragging

One great defense against insurance company foot-dragging is whatMonaco called the "getting smart parent syndrome." Whena claim is denied because a treatment allegedly is experimentalor investigational, the parent should write a letter to the companyasking why. The letter should ask for citations to the policylanguage, the company's rules and the literature that was reliedon in denying the claim.

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

"Sadly, there are some few companies that deny everythingunless pushed," she added. "If coverage is denied afterreason and pressure, don't be discouraged; if we have the casereviewed by independent pediatric oncologists and they agree thatthe care is medically necessary, dollars to donuts, we can getit paid for. Even specific exclusions for bone marrow transplantsmay be beatable."

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

The bottom line, according to Monaco, is that "it is notthe intent of companies to preclude coverage of medically necessarytreatment.Therefore, if their policy language is such that it'sbehind the times and a treatment has become recognized, or standardof care, we have found they will listen to reason and includeit."

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