“If they feel the heat, they see the light”: the role of the stem cell advocate #wscs12

Paul Knoepfler, a CIRM grantee at UC Davis, blogger and stem cell advocate talks about the role advocates can play in promoting stem cell research

There was a fascinating afternoon session at the World Stem Cell Summit on the power and role of the patient advocate in advancing stem cell research and particularly in overcoming the political challenges facing us at both the national and state level. Bernie Siegel, the founder of the World Stem Cell Summit, kicked the conversation off by saying that stem cells are not a Democrat or Republican issue, they are a human issue and we need to put aside political partisan feelings and work together on this.

First to speak was Paul Knoepfler, PhD, a stem cell researcher at UC Davis, a cancer survivor and, in the words of Bernie Siegel “a fabulous blogger” (you can read his blog here). Paul highlighted a number of important challenges facing advocates.

  • Funding – The level of funding for all research, including stem cell research, at the NIH has remained static or declined over recent years, this has really impacted research negatively. About 90% of grants are not funded which means that a lot of promising, quality science is going unfunded and it’s very discouraging for a generation of younger scientists trying to start their careers. Paul says the Solution to this is to work as advocates to put pressure on the government to increase the NIH budget. He says advocates need to raise their expectations of and demands on President Obama to increase funding. Also need to make this a bipartisan issue so that people on both sides of the political aisle support it.
  • Big chill for human embryonic stem cell research – Funding for human embryonic stem cell research is decreasing, often not for scientific but for political reasons
  • Deregulation – Big push for deregulation from both political and non-political bodies. Paul says as the FDA budget stays fixed the number of unlicensed clinics offering unproven therapies is increasing, what he calls ‘de facto’ deregulation. This is posing a threat to patients and to legitimate stem cell businesses whose reputations may be harmed by these other clinics.
  • Broader approach – Paul says we need to engage stem cell scientists as advocates, do more education outreach using social media and build bridges with those we might not otherwise feel we have anything in common with. He says his blog has allowed him to meet with people he might not ordinarily meet or agree with such as Texas Gov. Rick Perry; he has also hosted a debate between Dr. Centano and Doug Sipp, two people from opposite sides of the divide. While they didn’t reach agreement they did both present their feelings in a respectful way. Paul has also launched his own international education/outreach program called SCOPE. This is a 2 page white paper on stem cells that is translated into 22 languages and is part of a broader education and outreach international program
  • Scientiists and advocates need to reach out through social media to reach a wider audience and educate people.

Next up was Amy Comstock of the Parkinson’s Action Network and Coalition for the Advancement of Medical Research CAMR.

Amy said the main message she has about what is happening in Washington DC around stem cell legislature is “not a lot”. Up until 2009 there was a lot of activity surrounding efforts to ensure that the imposition of tight federal limits on important medical research couldn’t happen again. But the filing of the Shirley vs Sebilius lawsuit put the brakes on those efforts – this lawsuit alleges that the Government is violating the law in using federal funds for embryonic stem cell research. That lawsuit has been to the DC Court of Appeals twice and the pro-stem cell side has won both times, but now it’s at the Supreme Court and we are waiting to hear if the Justices will take it.

The lawsuit stalled any interest in moving stem cell legislation, so nothing has happened for more than three years as the lawmakers wait to see what the court decides.

Patient advocacy activity nowadays is focused, in DC at least, on more general funding for medicine particularly with the fears over the Fiscal Cliff and the threat of massive cuts to the NIH budget if no agreement is reached.

The third and final speaker was our good friend and long time supporter Don Reed, the VP at American’s for Cures Foundation. Don’s message was, as always, crisp and to the point. He says politicians respond to pressure, “if they feel the heat, they see the light”

Don said scienitsts need three things freedom, funding and friends. Activists and advocates can help ensure they get all of those.

  • Advocates can help defeat legislation in states that are attempting to shut down stem cell research. They have succeeded in many states but those battles continue.
  • Only a handful of states put up money for stem cell research, we need to try and boost that number to increase the funds available to researchers
  • Friends – people in power are essential to winning passage of bills we want or blocking approval of legislation we oppose. We need to support people competing for political office who support our aims, and then support them once they are elected.

Don had some kind words for Prop 71 and the stem cell agency calling us “amazing”. Thankfully the room was quite dark so no one could see how deeply the CIRM folks were blushing.

He finished on an inspiring note, telling advocates “You can make a difference.” He told the story of the time his son Roman (who broke his back in a college football accident) and he met with actor and spinal cord injury activist Christopher Reeve. “We were trying to raise money for his foundation, and he said “one day Roman and I will stand up from our wheelchairs and walk away forever.” Choking back the emotion Don said “the cure didn’t come in time for our champion but his light still exists and we will go forward and we will prevail.”


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