Advocacy

Organizations

Physicians hope to someday have new therapies that can mitigate or even cure diseases that today are incurable or at best managed—the new field of “regenerative medicine.” There are a large number of voluntary associations representing people with a variety of specific health issues (for example, the Michael J. Fox Foundation for Parkinson's Disease), or are more general, such as the American Association of Retired Persons (AARP). They have either touted stem cells as the ultimate cure, or expressed concerns over the dangers posed by as—of—yet unknown risks of the use of stem cells in treatments. For example, embryonic stem cells implanted in humans last a lifetime and may pose cancer risks or have other unintended consequences.

Discussions by advocates in the media about stem cells garners much public interest, and their concerns may gain public hearing before health organizations such as the Food and Drug Administration, which ultimately gives permission for all medicines, including those made from stem cells, to be allowed on the market for patient use.

Among those individuals who have advocated a broad approach to stem cell research were the late Christopher Reeve and his wife Dana Reeve and Michael J. Fox. After his spinal cord injury in an equestrian event, Christopher Reeve created the Christopher Reeve Foundation (CDRF). The foundation is a charity that promotes spinal cord injury research, which includes stem cell research. It is also an advocate of the election of “pro—science” presidents of the United States who will give unqualified support to stem cell research. Michael J. Fox was diagnosed with Parkinson's disease in the late 1990s and started a foundation that supports the use of stem cells for the treatment of Parkinson's disease and funded many studies in the early part of 2000.

The Coalition for the Advancement of Medical Research (CAMR) is a coalition of over 100 organizations that lobby for stem cell research. The organizations in CAMR include colleges and universities, patient organizations, scientific societies, foundations, and other organizations. It lobbies Congress, the federal bureaucracy, and the president when a hearing can be obtained. CAMR is an advocate for embryonic as well as adult stem cell research. The Genetics Policy Institute (GPI) was founded by lawyer Bernard Seigal and spawned the powerful advocacy group known as the Pro—Cures Movement. These organizations are attempting to lobby the public to get interested in stem cell research through education and debate.

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