Stem Cell Research

The Parkinson’s community has been at the forefront of the struggle to achieve research freedom for scientists working in the field of embryonic stem cell research. The Parkinson’s Action Network (PAN) is a founding member of the Coalition for the Advancement of Medical Research (CAMR), which is made up of more than 100 nationally recognized patient organizations, universities, scientific societies, and foundations advocating for the advancement of breakthrough research and technologies in the field of medical and health research. Together, PAN and CAMR will continue to educate the nation about the importance of medical and scientific research, including embryonic stem cell research.

Why Support Embryonic Stem Cell Research?

Embryonic stem cell research has significant scientific and therapeutic potential for people living with Parkinson’s disease.  While replacement of human dopamine producing neurons may be one therapy resulting from additional embryonic stem cell research, many avenues of Parkinson’s research will benefit from this research.  Researchers will be aided in studying the causes of Parkinson’s, developing more accurate models to improve our understanding of the disease, and, ultimately, halt the unrelenting neurological degeneration and loss of quality of life for people living with Parkinson’s. 

Want to learn more about stem cell research?  Visit CAMR’s informative online brochure on stem cell research.

Advocacy with the Obama Administration

Prior to the start of President Obama’s term in office, PAN’s CEO, Amy Comstock Rick, while serving as the President of CAMR, met with President Obama’s transition team, urging him to overturn the prior Administration’s funding restrictions on embryonic stem cell research. Thanks to strong advocacy by the Parkinson’s community, President Obama issued an Executive Order on March 9, 2009 that lifted the prior Administration’s restrictive policy on embryonic stem cell research.  The executive order changed the way National Institutes of Health (NIH) could support and conduct human stem cell research.

The Health and Human Services Secretary, through the NIH Director, was required to review existing NIH and other widely-recognized guidelines on human stem cell research and issue new NIH guidance within 120 days of the date of the Executive Order.  On April 23, 2009, the NIH published draft guidelines for research involving human embryonic stem cell research.  The Parkinson’s disease community played a key role in submitting comments to NIH before the final guidelines were released on July 7, 2009.  View PAN's comments on the NIH draft guidelines.

The final guidelines provide a pathway for existing stem cell lines, on which current research has only been able to proceed with non-federal funding, to gain the full support of the Federal government. Using the final guidelines, NIH is now approving stem cell lines for use and funding research grants.  Visit the NIH Stem Cell Information Web site to learn more.

Stem Cell Policy History

On August 9th, 2001, former President George W. Bush announced that for the first time, federal funding would be used for human embryonic stem cell research, but only on stem cell lines that were created prior to that date.  At the time of the 2001 policy announcement, 78 stem cell lines were assumed eligible for federal funding. In fact, only 21 lines were available for distribution and study due to contamination and changes to the cells over time rendering many of the lines unusable. 

Though federal law allows all forms of stem cell research in the United States, federal funding was restricted under this policy.  In 2006 and 2007, thanks to the advocacy efforts of the Parkinson’s community and CAMR, Congress passed the Stem Cell Research Enhancement Act in both the House and the Senate.  President Bush did not agree with the legislation and vetoed the bill both times it was presented for signature.

The Stem Cell Research Enhancement Act would have allowed federal research funding for new cell lines created from donated embryos that were no longer needed by couples undergoing infertility treatment in IVF clinics, and were slated to be discarded. Its bipartisan co-sponsors and both houses of Congress believed the Stem Cell Research Enhancement Act would help speed progress toward cures and treatments, while maintaining ethical and enforceable guidelines.

On August 23, 2010, a federal judge imposed an injunction halting all federal funding for embryonic stem cell research.  In July 2011, the D.C. District Court ruled that federal funding for human embryonic stem cell research is not prohibited by federal law and can continue – a significant victory.  An appeal is pending.  For the latest information on the case, please read this message from PAN CEO Amy Comstock Rick.

The Parkinson’s community has been a critical voice in the effort to fully restore this important research, not only as the case moves ahead in the courts, but also in calling on Congress to immediately pass legislation to ensure that this life-saving research goes forward.