Treatment for Rare Disorder

Re “Hard Choices in a Genetic Calamity,” Aug. 25: Today’s medicine will increasingly reflect new genetic treatments and hope. The insurers do not want to pay for untested treatments or for hope. Hope is not a sound business practice. There is no clear definition as to when treatment becomes something more than an experiment.

Especially in rare diseases like Sanfilippo syndrome, there is less incentive for drug company research and clinical trials.

We cannot, however, leave victims of rare diseases to die simply because research on their illness is not cost-effective.

Dr. Mark Lipson of Kaiser Permanente, California’s largest insurer, is quoted as saying that the decision to refuse to pay for the Bennett children’s stem cell transplants was medically justified.

It is never justified to refuse the only lifesaving treatment available when that treatment is chosen by the patient or his or her parent.

It seems that this dilemma is perfectly suited for the insurance industry, whose job is to spread the risk--and costs--of catastrophe. This will have to be the topic of legislative efforts.

Bernard W. Freedman

Santa Monica

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Buried well back in your article about the unfortunate family whose three children suffer from Sanfilippo syndrome and whose health insurer--Kaiser Permanente--turned them down for a risky bone marrow transplant was the revelation that three independent pediatric consultants retained by the California Department of Managed Health Care unanimously agreed with Kaiser Permanente.

Isn’t that how HMO reform is supposed to work when disputes about controversial procedures arise between health insurers and their members?

And why didn’t the doctors at Duke University offer to make research funds available to pay for what everyone acknowledges is clearly an experimental, unproven treatment for a rare disorder?

Harold N. Bass MD

Northridge

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I am absolutely appalled that the medical community cannot come together to help the Bennett family.

The medical community can provide medical transportation for conjoined twins and their family from a foreign country and medical services (doctors, surgeries, nursing, therapies), hospital care and a place for this family to live while their babies stay in the hospital. All for the sake of science.

Now, let those same doctors, nurses and hospitals stand up for a U.S. family for a change.

Maria Jones

Huntington Beach