Editor’s note: Merrill Goozner is an award-winning journalist and author of “The $800 Million Pill: The Truth Behind the Cost of New Drugs”

I recently received word that Alessandro Liberati, the Head of the Italian Cochrane Network, passed away from multiple myeloma, a cancer of the bone marrow. The Cochrane network is a worldwide collaboration committed to conducting comparative analyses of medical interventions. In a recent letter to The Lancet, Liberati noted his own experience in searching the medical literature in hopes of identifying what would be the best treatment for his own disease. He noted:

I looked at the ’epidemiology’ of myeloma studies on ClinicalTrials.gov. On July 31, 2011, a search using the term ’multiple myeloma’ identified 1384 studies. Of these, 107 were phase 2/3 comparative studies. However, in only 58 of these studies was overall survival an endpoint, and in only ten of these was it the primary endpoint. No trial was a head-to-head comparison of different drugs or strategies.
Multiple myeloma is just one of many cancers that researchers at pharmaceutical companies believe will be susceptible to ’targeted’ drugs, some of which are now in clinical trials. But those trials aren’t designed to prove them superior to existing therapies. They usually are tested in addition to existing therapies. That leaves patients and physicians in the dark about what drugs to use first or in what combinations to maximize a patient’s chance of survival.

Liberati concluded one of his last communications this way: ’Patient advocacy groups in myeloma spend millions to support research, hoping to promote better care. With public support they should be in a strong position to call for a redefinition of the research agenda, in the interests of patients.’

Patient groups should be, but will they be?

A quick perusal of public filings for the leading U.S.-based advocacy group, the Multiple Myeloma Research Foundation, shows that the bulk of its funding comes from pharmaceutical industry sources. All are intimately involved in MM treatment. Millenium (Velcade or bortezomib for MM); Onyx (carfilzomib for MM, now in clinical trials) and Celgene (Revlimid or lenalidomide for MM) last year donated $1.1 million, $3 million and $1.2 million, respectively, to the group’s $25.7 million budget.

The single largest donation ($5 million) came from William Bowes, the 82-year-old general partner of U.S. Venture Partners in Silicon Valley and until a few years ago was considered one of the 400 richest men in America, according to Forbes Magazine. He is a long-time investor in biotechnology companies whose major venture capitalist ’wins’ over the years included Amgen and Xoma Ltd., where he sits on the board. Xoma is developing a lymphoma therapy.

If the pharmaceutical industry’s narrow research agenda is the problem, can a patient advocacy group primarily funded by pharmaceutical companies effectively advocate for changing that agenda? I wouldn’t count on it.

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