CIRM sends Patient advocates to international stem cell meeting

Today stem cell scientists and patient advocates are descending on Toronto for the annual meeting of the International Society for Stem Cell Research. Among those registering and preparing for three days of science is Don Reed, who is one of 20 patient advocates who received a CIRM stipend to attend. 

On his blog today, Reed writes about his trip to Toronto and the important role of patient advocates in promoting science:

Patient advocates like my son Roman Reed are the emotional muscle behind research for cure. It is not easy for a paralyzed person to travel, but he will be there, listening and learning, and speaking.

Because there will be funding fights ahead, both nationally, and in every state.

When a politician says, “We can’t afford to fund the research”—someone must be there to say: “We cannot afford NOT to fund the research—and here’s why.” That someone is us. If it is just the scientists talking, it is all too easy for politicians to ignore them.

Think of he numbers. There are only a handful of top research scientists. Politically, they are negligible. If they only talk to each other, they might as well pack up their test tubes and go home, because they will never get public funding.

But there are millions of patients and family– patient advocates. Working together, we cannot be ignored.

From its inception, CIRM has recognized the importance of patient advocate voices in scientific decision-making, including ten such advocates on our governing board (bios of all board members are available here). Jeff Sheehy, patient advocate board member for HIV/AIDS blogged about his role on our board:

I serve on the governing board as a patient advocate for HIV/AIDS, and in that role I along with the other patient advocate board members have been able to directly influence the direction of the agency. Our voice has helped shape decisions regarding CIRM policies and funding. As [vice chair Duane] Roth writes, patient advocates can grasp some of the most complex and thorny policy and scientific issues and “tip the scales” in the direction of sound public policy that seeks prudently to accelerate progress towards cures.

ISSCR is kicking off the meeting tonight with a public symposium consisting of patient advocates and scientists discussing progress being made in spinal cord injury (featuring Reed's son Roman Reed), multiple sclerosis and blood disorders. Hopefully those advocate voices will help drive home the importance of continued funding for stem cell research.

A.A.

CIRM Innovation: The Patient Advocate Role -- Guest blogger Jeff Sheehy

Duane Roth, my colleague on the CIRM governing board where he serves as one of the vice-chairs, has just published an article, with the title, “The Third Seat at the Table: An Insider’s Perspective on Patient Representatives,” in the Hasting’s Center Report. The Center, an independent, nonpartisan, and nonprofit bioethics research institute, publishes its report six times a year to “explore the ethical, legal, and social issues in medicine, health care, public health, and the life sciences.”

His article, along with one I published in Nature earlier this year (“Advocates deserve room at the decision-making table”) describe one of the critical innovations found in the governance of CIRM: formal, powerful roles for patient advocates.


I serve on the governing board as a patient advocate for HIV/AIDS, and in that role I along with the other patient advocate board members have been able to directly influence the direction of the agency. Our voice has helped shape decisions regarding CIRM policies and funding. As Roth writes, patient advocates can grasp some of the most complex and thorny policy and scientific issues and “tip the scales” in the direction of sound public policy that seeks prudently to accelerate progress towards cures.

In his essay, Roth describes the genesis of active and vocal patient power through the response to AIDS in the 1980s and 90s, “which galvanized patient communities to unprecedented levels of scientific and political involvement.” He also points out the current struggles between advocates and the FDA, where patients with multiple sclerosis and prostate cancer have been frustrated by the agency’s decisions.

Roth forcefully argues for incorporating a formal role for “patient mediators” into the FDA’s product approval processes. “The costs would be negligible, and the payoffs in therapeutic efficiency, and procedural efficiency, and public confidence could be enormous.”

In my Nature article, I link the successful passage of Proposition 71 establishing CIRM to the unprecedented efforts of patient advocates around California and argue that scientists and policymakers have an obligation to include in the decision-making processes those who make their work possible.

As pluripotent (embryonic or iPS) cell approaches enter clinical space, formal inclusion of patient advocates into decision making roles along the lines suggested by Roth is absolutely essential if society is going to judiciously accept the inevitable failures that accompany most clinical research. Cell therapy has the potential to transform medicine, but the risks are as great as the potential.

In HIV/AIDS, we have seen risk mitigated by the unwavering willingness of an active patient and stakeholder community to tolerate failure. The patient communities seeking relief and cures through cell therapy are just as capable of evaluating and accepting risks and failures.

I would argue that Roth’s article with its recommendations is not only timely, but also urgent, and I hope that it inspires a dialogue leading to near term conclusive action to bring patient advocates into the decision-making process regarding new therapies.

- Jeff Sheehy is is director for communications at the AIDS Research Institute at UCSF, and a member of the CIRM governing board.