Saturday, September 06, 2008

StandUp4Pharma?

Many people in the US watched a telethon carried on all three major television networks meant to raise money for cancer research. The telethon was sponsored by StandUp2Cancer.org, a not-for-profit organization apparently run by a number of Hollywood celebrities, whose mission is to sponsor cancer research.

On the Schwitzer Health News blog, this post raised some questions about the purpose of the organization, and in particular noted that its "heroes" included GlaxoSmithKline and Amgen.

On perusal of the organization's poorly organized and not very functional web-site, I found a listing of the membership of its Scientific Advisory Committee, who will determine who gets research money from the organization. The committee included many notable scientists, but I also noted that it included four people who worked full-time for pharmaceutical or biotechnology companies:


In addition, the board member biographies disclosed other members with financial ties to other such corporations:

  • Philip A Sharp, Institute Professor, David H Koch Institute for Integrative Cancer Research, Massachusetts Institute of Technology also "co-founded Biogen (now Biogen Idec), Alnylam Pharmaceuticals, an early-stage therapeutics company and Magen Biosciences Inc., a biotechnology company developing agents to promote the health of human skin."
  • Vicki L Sato, Professor of Management Practice, Harvard Business School, also is the retired President of Vertex Pharmaceuticals, and a current business advisor to Atlas Ventures "and other enterprises in the biotechnology and pharmaceutical industry." She is also a current member of the boards of directors of Bristol Myers Squibb, PerkinElmer Corporation, Infinity Pharmaceuticals, and Alnylam Pharmaceuticals.

Furthermore, a bit of searching the web revealed other financial ties of the scientific advisory board:

  • Philip A Sharp is also, according to his CV, a Member of the Scientific Advisory Board of Sirtris Pharmaceuticals, 2003- ; Member of the Scientific Advisory Board of Fidelity Biosciences Group, 2004- ; Member of the Board of Advisers, Polaris Venture Partners, 2002- ; Chairman of the Scientific Board (to 2002) and member of the
    Board of Directors of Biogen Idec; Chairman of the Scientific Board and member of the Board of Directors of Alnylam Pharmaceuticals; and member of the Scientific Board and member of the Board of Directors of Magen Biosciences.
  • Arnold J Levine, Professor, Institute of Advanced Study and Cancer Institute of New Jersey is also a member of boards of directors of Theravance, Applera Corporation and Infinity Pharmaceuticals, Inc, according to the Theravance web-site.
  • Brian J Druker, Professor of Medicine, Oregon Health Sciences University Cancer Institute, is also on the scientific advisory board and clinical advisory board of Avalon Pharmaceuticals, per the company web-site; on the clinical oncology advisory board of Ambit Biosciences, according to this news item; and in 2003, disclosed consulting for and receiving honoraria from Novartis, in this article.
  • Richard N DuBois, Provost and Executive Vice President, UT MD Anderson Cancer Center, also has been a consultant to Pfizer, and received honoraria from Axcan Pharmaceuticals, disclosed in this article; and disclosed consulting for Abbott, Novartis, and Salix in this article.
  • Waun Ki Hong, Head, Division of Cancer Medicine, UT MD Anderson Cancer Center, is a member of the medical oncology advisory panel for Omnitura, according to the company web-site; a member of the medical oncology advisory panel for Genyous, according to the company web-site; on the scientific advisory board of GenVault, according to this news item; and on the scientific advisory board of Agennix, according to this news item.
  • William G Kaelin, Professor, Dana-Farber Cancer Institute, is also a founder of Imigen Systems, according to this article; a member of the scientific advisory board of Nextech Ventures, according to the company web-site; and a member of the scientific advisory board of Arqule, according to the company web-site.
  • Ronald Levy, Chief, Division of Oncology, Stanford University, is also a member of the
    scientific advisory boards of XTL Therapeutics, Therion Incorporated, Coley Pharmaceutical Group Inc., Xcyte Therapeutics, Agensys, Pointilliste, Cell Genesis, and Five Prime, according to his CV; and is also on the scientific advisory board of InNexus Biotechnology, according to this news article.
  • Tak W Mak, Chief Scientific Officer, Princess Margaret Hospital, Campbell Family Institute for Breast Cancer Research is also a founder of Agios Pharmaceuticals, according to the company web-site, and on the scientific advisory board of Entremed, according to the company web-site.


The explanation by StandUp4Cancer.org of where the money it raises goes, and why, includes,


SU2C believes that it can benefit the most patients by accelerating the course of cancer research through raising philanthropic dollars and developing unique mechanisms to utilize these funds.

SU2C is committed to transparency and high-quality science in its funding activities and believes that this can be accomplished within the framework of a truly innovative approach to support SU2C-funded research.


However, of 19 people on the board that will control how this research money is spent, 4 were disclosed to work full-time for pharmaceutical or biotechnology companies, and two others were disclosed to have ties to such companies. Seven other board members had multiple, undisclosed ties to pharmaceutical or biotechnology companies. Thus, 13 of 19, a clear majority, including the board chair and vice-chair, had multiple and significant financial ties to pharmaceutical and device companies. Most of those ties were not disclosed on the organization's web-site. I did not watch all of the organization's telethon, but did not see anything approaching such disclosure in the part I did watch.

Where is the transparency there?

A major new effort to raise money to do research on the extremely important topic of cancer, supposedly devoted to transparency, should at least make clear what financial ties the people in charge of the effort have to companies that have commercial interests in selling cancer tests and treatments, and stand to benefit from particular research directions. This is even more important when appeals for funding are widely broadcast to an audience which may not be very sophisticated about biomedical and clinical research, and not in an easy position to determine who may be benefited from research that goes in particular directions.

6 comments:

Anonymous said...

Roy,

Any idea just how many (medical-related) non-profits are actually astroturf organizations? And any idea how many long-established non-profits (like the American Diabetes Association, e.g.) rest on laurels of integrity that are quickly vanishing? There are many cases exposing pharma corporations as greedy organizations that place 'profits before patients.' Sadly, I feel there are many "non-profits" that now do the same thing. Of course, since they are "non-profit" they place the well-being and perpetuation of the organization BEFORE patients. In the grand scheme of things, though, they are essentially one and the same.

Melody

Anonymous said...

Melody,

You may be interested in this post from the WSJ Health Blog:

September 5, 2008, 4:33 pm

Sen. Grassley Keeps Pressure on Non-Profit Hospitals

Posted by Alicia Mundy

A recent blurb also noted a change in the IRS rules to force nonprofits to list executive salaries starting next year

When I read this post I could not help but think of Roy's excellent expansion on Marcia Angell's comments. Falling on the heals of this is the Sept. 4th WSJ article Medtronic Treatment Linked to Spinal Surgery Problems. This article highlights a whistle blower law suit proving payment by Medtronic to doctors to promote off-label use of it's product and the disastrous results.

From the article we learn: "In a 2004 article in the Spine Journal, the researchers said 24 of the 32 patients receiving Infuse had new bone formations outside the disc space and into the spinal canal. Only four of the 31 patients in the group receiving hip bone had similar bone formation. The researchers said the new bone growth did not affect clinical outcome.

Three of the four authors disclosed in the article that they are paid consultants to Medtronic."

My question is: Where is the outrage of the medical community? These revelations seem to come from the media and the connections are followed up by a few excellent blogs, such as HCR, but you just do not see the medical community making a stand against conflicts of interest.

Steve Lucas

Gregg Masters said...

Has anyone totaled the administrative load or effective overhead factor of the American Cancer Society's operations from the grassroots unit offices, to their regional, state and corporate entities?

How much of the dollar raised actually goes to fund direct cancer research vs. staff salaries and office overhead?

Roy M. Poses MD said...

I don't know any numbers about the extent that not for profit organizations focused on particular diseases or patient issues are supported by vested interests, and lead by people with financial ties to vested interests.

These sorts of topics are seldom addressed by medical and health care researchers. Presumably pursuing them is not good for one's career in academic institutions heavily supported by industry, and often lead by people with their own ties to industry.

Daniel Goldberg said...

From a theoretical perspective, scholars working in medicalization studies have long studied the discourse between advocates and commercial interests. They have not generally sought to determine prevalence, but have studied the phenomenon from a sociocultural perspective.

But the literature is there. Peter Conrad just published a recent and excellent short book on the subject.

Jack said...

its really great thought and hope its really implemented