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Voice from Washington

Stem-Cell Policy and PD Research Funding Issues Heat Up the Capitol

By Francesca Fierro O'Reilly
Managing Director of Government Relations, PAN

Even before the death of former President Ronald Reagan, momentum was building to ease restrictions on the use of embryonic stem cells in federally-sponsored medical research. But the recent publicity surrounding his passing has raised the battle to a new level.

The current policy, which was established by President George W. Bush on August 9, 2001, limits federally-funded stem-cell research work on the 78 stem-cell lines that already existed as of that date. Unfortunately, researchers later discovered that they could access only 19 of those 78 stem-cell lines because the remainder were deemed unusable. Worse, all of the 19 "usable" lines were found to be contaminated with mouse feeder cells, which excludes their therapeutic use in humans.

Of course, former first lady Nancy Reagan is no stranger to the stem-cell debate; she first entered the fray back in January 2003, when she expressed her support for embryonic stem-cell research in a letter to Senator Orrin Hatch (R-UT).

But her recent comments, both before and after the death of her husband, are outstanding examples of the power of advocacy. Her heartfelt words have resonated with an American public ready to hear them. At a recent dinner in her honor by the Juvenile Diabetes Research Foundation, Mrs. Reagan declared: "I just don't see how we can turn our backs on this - there are so many diseases that can be cured, or at least helped. We have lost so much time already, and I just really can't bear to lose any more."

Furthermore, recent poll numbers demonstrate that at least 60 percent of Americans consistently support Mrs. Reagan's position on stem-cell research. The pro-science position has also been clearly demonstrated in the U.S. Congress. PAN, a leader of the Coalition for the Advancement of Medical Research (CAMR), supported the efforts in the House of Representatives - led by Representatives Michael Castle (R-DE), Diana DeGette (D-CO), Randy Cunningham (R-CA) and Calvin Dooley (D-CA) - to gather signatures for a bipartisan letter to President Bush. The letter - signed by an impressive 206 members of the House, including prominent conservatives as well as liberals and moderates - urged the President to lift existing restrictions on stem-cell research.

A similar effort followed in the Senate, championed by Senators Arlen Specter (R-PA), Tom Harkin (D-IA), Orrin Hatch (R-UT), Ted Kennedy (D-MA) and Dianne Feinstein (D-CA). To date, 58 signatures - almost three-fifths of the total Senate - have been gathered.

Building on this momentum, CAMR sponsored a Capitol Hill press conference on June 23 to release a letter to President Bush that had been signed by 142 patient groups, including PAN and PDF, and many universities and scientific societies. Among the speakers was Michelle Lane, PAN State Coordinator for Louisiana. As a result of all of these efforts, embryonic stem-cell research clearly has moved from the periphery to the center of public debate, where it is certain to remain throughout the elections.

Also of great interest to the Parkinson's community this summer has been the status of funding for Parkinson's-related research through the Pentagon's Neurotoxin Exposure Treatment Research Program (NETRP) and the National Institutes of Health (NIH). Despite an extremely difficult budgetary environment on Capitol Hill this year that forced tough choices to be made by U.S. Senators and Representatives as to funding priorities within the Department of Defense, NETRP survived intact. The NETRP will receive $26 million in funding for Fiscal Year 2005 - the same level as in the previous year. While disappointed that the NETRP did not receive an increase in funding, PAN is pleased that overall, the level of funding does reflect the strong Congressional support for the program, especially given so many competing priorities.

As to the appropriations for NIH, a House subcommittee has proposed an increase of just 2.6 percent in NIH funding for Fiscal Year 2005. The increase would raise NIH funding by $727 million, bringing the total budget to $28.5 billion. The National Institute of Neurological Disorders and Stroke (NINDS) fared a bit better than the average for NIH as a whole, garnering a proposed 3 percent increase, raising its funding level from $1.5 million in Fiscal Year 2004 to $1.54 million in Fiscal Year 2005. The Senate will release its proposed funding levels later in the summer and the expected differences in the levels proposed will be reconciled in a conference committee late in the fall.

PDF and PAN will continue to keep you informed on each of these important subjects in future website and newsletter reports.

Founded in 1991 and based in Washington, DC, PAN is the unified education and advocacy voice of the Parkinson's community. PDF uses an important portion of your contributions to support PAN - $150,000 in the current year. For more information or to see how you can help the Parkinson's community win these important battles, please visit www.parkinsonsaction.org or call (800) 850-4726.

State Update on Stem-Cell Research Policy

Since President Bush's 2001 announcement limiting federally-funded stem-cell research, individual states have been working to create their own legislation on the subject. In 14 states, pro-research bills have been introduced and in 25 states, anti-research legislation is on the floor. Most state governments have ended their sessions for the year, which means that all pending legislation will have to be re-introduced when session reconvenes in the fall. New Jersey and Massachusetts are currently the only states that have passed legislation affirming the importance of stem-cell research. Governor Jim McGreevey of New Jersey has been quite active on the pro-research side and has followed his strong support for pro-research legislation with even more tangible help: a proposal to build a dedicated $50 million stem-cell research institute. The first installment of money, some $6.5 million, is included in the budget package for 2005, and they expect to break ground for the new center sometime next spring.

In New York, another battleground state, the Parkinson's Disease Foundation (PDF), in conjunction with the Parkinson's Action Network (PAN), Juvenile Diabetes Research Foundation (JDRF) and Hadassah, has formed a coalition named New Yorkers for the Advancement of Medical Research (NYAMR). NYAMR's mission is to achieve positive legislation regarding stem-cell research in New York State. Since its incorporation this spring, NYAMR has identified several members of the Republican-dominated Senate who have agreed to lead the charge; held a successful Lobby Day in early June; launched www.nyamr.org; and recruited hundreds of individuals and groups - including 23 state-wide disease advocacy organizations - to join the coalition and spread the word. NYAMR also worked with the State Assembly to ensure passage (for the second consecutive year) of the Assembly's Reproductive Cloning Prohibition and Stem-Cell Research Protection Act (A.6249-A). In the legislative session that begins in early 2005, NYAMR hopes to re-engage the state's senators and achieve passage of companion legislation in the Senate, and have Governor George Pataki sign it into law.