HACKENSACK, NJ-- Tough economic times can be blamed for the current game of roulette played by health-care insurers when it comes to coverage of experimental or off-label treatments, said Grace Powers Monaco, JD, director of the Medical Care Ombudsman Program, Medical Care Management Corp. Bethesda, Md. But overeager physicians, patients, and patient advocacy groups must also share some of the blame for the current tug of war, she said.
HACKENSACK, NJ-- Tough economic times can be blamed for the currentgame of roulette played by health-care insurers when it comesto coverage of experimental or off-label treatments, said GracePowers Monaco, JD, director of the Medical Care Ombudsman Program,Medical Care Management Corp. Bethesda, Md. But overeager physicians,patients, and patient advocacy groups must also share some ofthe blame for the current tug of war, she said.
Independent reviewers, such as Medical Care Management Corp.,can often help resolve disagreements (see below). The companyprovides case review services for employers, insurers, and managedcare plans on a fee basis, and pro bono for patients who cannotafford to pay. Ms. Monaco is also founder of the Candle Lighters,an advocacy group for parents of children with cancer.
The problem goes back to the early 1980s, when the federal governmentstopped including patient support care costs in grants for studiesof new therapies, she said at a conference, sponsored by the NorthernNew Jersey Cancer Center, Hackensack Medical Center.
By 1986, she said, payers realized that patient supportive carecosts were being passed on to them. They responded with more rigorousenforcement of exclusion clauses, especially regarding autologousbone marrow transplantation (ABMT) for adult lymphoma patientsand later for breast cancer and other indications.
Compounding the problem, Ms. Monaco said, was the tendency bysome physicians to oversell the case for ABMT. The media pickedup the story, and patients, many of whom were medically ineligible,begin clamoring for transplants.
Unfortunately, some patient advocacy groups may be exacerbatingthe situation, she said, "by always assuming that the patientis right." As a result, physicians and patients may be atcross purposes with each other," she said, pointing to casesin which patients have inappropriately sued physicians for notproviding experimental care (see the first case history ,below).
Some physicians, perhaps out of fear of such lawsuits, have lackedthe courage to deny patients' requests for inappropriate treatments,Ms. Monaco said. When the decision is made to go forward witha costly experimental treatment, instead of facing economic issueshead-on before treatment, physicians may take the ostrich approach:"Let's just bill the charges and see if they will pay forit."
Ms. Monaco maintains that many managed care plans will pay fortreatment in meaningful clinical trials, but some may look forexcuses not to pay, such as the fact that patients signed informedconsents (case history 2).
She stressed the importance of physicians' letters written onbehalf of their patients, but warned, "Don't write a letteruntil you know the contract language. Write truthfully about thepositive aspects of the treatment and why it is necessary forthis patient." Unfortunately, a carelessly written lettercan "shoot the patient in the foot" (see case history3). Ms. Monaco also noted that in the process of writing the letter,it sometimes becomes clear to the physician that this is not theright treatment for the patient.
She urged improved communications among all the interested partiesand made several recommendations:
A mother whose young son was diagnosed with a brain tumor waspreparing to sue the oncologists providing care, claiming thatthe tumor had been found late and her son's treatment was inappropriate.
Medical Care Management Corp. was consulted on a pro bono basis,and the organization sent the child's medical records to fivetop pediatric oncologists. The mother had already engaged a lawyer,who planned to use a professional expert witness who was not apediatric oncologist.
The experts consulted by Medical Care Management Corp. agreedthat the child's tumor had been diagnosed early rather than late,and that appropriate therapy had been initiated within a weekof diagnosis.
A child who was being treated for Wilms' tumor had relapsed onceand his physician recommended BMT. The insurer initially turneddown the request because the child was part of a national clinicaltrial, and his family had given informed consent, acknowledgingparticipation in the clinical trial. The managed care companyrequested a paid review from Medical Care Management Corp. Reviewersdemonstrated that the procedure was "standard care"for the child, that it had had been shown to be medically effective,and that participation in the trial was to further refine informationon efficacy. The managed care plan agreed to cover the procedure.
A teenager had survived retinoblastoma in infancy, but had losther eye as a result. Now, 15 years later, technology is availableto give the young woman an acceptable eye. Her physician wrotea three-page letter describing the medical necessity of the reconstructivesurgery, but in the last paragraph noted that it would be "cosmetically"valuable for her.
The case was initially reviewed by a "lay" reviewerat the insurance company who saw the buzz word "cosmetic"and turned down the request.
The patient requested a pro bono review by Medical Care ManagementCorp. After the review, the insurer reconsidered, paid for theprocedure, and was grateful that the error had been caught andcorrected. The patient now looks and feels terrific.