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  Ethics Matters

No Free Lunch: Managing Care, Paying for Research

by Jeffrey P. Kahn, Ph.D., M.P.H.
Director, Center for Bioethics
University of Minnesota

Pressure is mounting on health care insurers and managed care companies to pay for their subscribers to participate in clinical trials or other medical research. For many patients, to participate in research like a clinical trial testing a new kind of chemotherapy means paying what can be huge costs out of pocket. This is because while some of the costs of research are paid by drug companies or government research programs, a large part are charged to the subjects or their health care insurance-costs that payers are reluctant to bear.

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But in a break from the longstanding policy by many health insurers not to pay for "experimental therapy" or research, it was recently reported that United Health Care is planning to pay for their subscribers to participate in some cancer research. This will expand medical care choices for patients and physicians, as well as increase the pool of potential research subjects.

Why should the companies that pay for our health care also pay for participation in research, and are these new costs justified in a time of increasing health care costs?

Don't throw good money after bad

Health insurers are wary of paying for any unproven medical care, and for good reason. They are responsible for allocating resources wisely--resources that are collected from subscribers and then paid out according to need and other factors. Spending tight dollars on care that doesn't work doesn't make sense on a number of levels: it's bad for patients, and it's bad for insurers and their subscribers. But of course the difficulty is in knowing what care "will" work, and that is where research comes in.

When research is the only potential treatment

Unfortunately, sometimes there is little or no effective treatment for an illness or disease, and promising research may offer hope along with the opportunity to learn for the future. When standard approaches don't work, it makes sense to pay for research participation as part of patient care, so long as patients understand that research is meant to gain knowledge, and only secondarily may benefit them directly.

Research can be health care, too

When a patient enters a clinical trial, while the particular combination of drugs given, or a device used may be new or untested, the rest of the medical care they receive looks much like they would receive as part of "standard" care.

So blanket policies that deny payment for research participation miss the point. For patients who would receive other care, the only extra costs imposed by research are those over and above those of regular medical care. No doubt these costs can sometimes be substantial, but it is wrong to suppose that all research participation adds layers of new costs to health care. And if patients are lucky enough to realize direct medical benefit from being in research, its value for individuals should be clear.

No patients, no medical research

As more medical care is paid for and delivered in the context of managed care, rules that restrict research participation will impact whether and how research can be carried out. While our changing health care system cannot afford to pay for unlimited research participation, neither can it afford to deny all access.

Biomedical research depends on a number of factors to succeed, not the least of which is patients to participate. In fact, increasing concern over the shortage of patients for cancer clinical trials prompted the National Cancer Institute to ask Congress last year for funds to guarantee that eligible subjects would not be turned away.

Improved access to research will be good for patients whose health it might advance, for those it will offer additional hope, and to payers and society in the form of better health care in the future. But these benefits aren't free. Research programs should bear some costs, but they should be shared by systems committed to serving health care needs, and that will reap the benefits of research. Only by recognizing that research is an important part of health care can our system avoid going morally bankrupt even though the bottom line says otherwise.

Should the companies that pay for our health care also pay for participation in research, and are these new costs justified in a time of increasing health care costs?

Post your opinion here.

Visit the
"Ethics Matters" Archive
where you'll find other columns from Jeffrey Kahn
on a wide range of bioethics topics.

"Ethics Matters" is a biweekly feature from the
Center for Bioethics and CNN Interactive.

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