JUL 08, ‘99 00:02 (ET) To: Dr Harold Varmus PAGE 1 of BF/O7/1999 19:64 15889949366 WASHINGTON FAX PAGE 61 WASHINGTON FAX” An infarmation and oommuntaation sarvioa... July 8, 199 POLITICAL MANEUVERING INTENSIFIES ARO STEM CELL RESEARCH SSUE a“ a The political battle over human embryon?t tem ce earch is expected to intensify this month, with the National tnstitutes of Health (NIH) set to propose guidelines for grantees who want to work with stem cells and a federal ethics panel expected to release a report endorsing federal funding for stem cell experiments. with these events likely to accelerate the debate, groups on both are sides stepping up their efforts to influence decision makers on Capitol Hill. Last week, Sen. Sam Brownback, R-KS, held a press conference to denounce NIH’s decision to fund experiments with stem cells derived from human embryos, arguing that a federal law that forbids NIH from supporting work with the embryos themselves applies to their byproducts as well. Brownback presented a “position paper’ denouncing Stem Cell research that was endorsed by a varied group of signatories including ethicists, clergy, academics and former government officials. On the other side of the issue, a coalition of patient advocacy groups recently organized to lobby for stem cell research is holding a briefing session today for congressional staff to extol the therapeutic potential of stem cell experiments. The Patients’ Coalition for Urgent Research, or CURe, is trying to convince lawmakers that public funding is justified because stem cells-- primitive cells capable of becoming almost any tissue in the human body--could spark revolutionary treatments for people who suffer from diabetes, Parkinson’s disease, heart disease and a host of other debilitating afflictions. The main battleground is expected to be the FY 2000 appropriations bill for NIH, which for the past few years has included a legislative rider forbidding the agency from supporting research in which “embryos are destroyed, discarded or knowingly subjected to risk of injury or death.” However, neither side has revealed a strategy for achieving their aims. At his press conference last week, Brownback stuck with the now standard script of congressional opponents of stem cell research, which involves attacking the NIH decision support stem cell experiments as a violation of the law as its now written. “The research being proposed by NIH on human embryonic stem cells is immoral, illegal and unnecessary,” Brownback said in a prepared statement. “Today, there is seme confusion over the simple language of the (embryo research) ban. This language is clear. The law is clear.” JUL 08, ‘939 00:02 (ET) To: Dr Harold Varmus PAGE 2 Of a7/67/19939 19:84 15889349366 WASHINGTON FAX PAGE 82 Page 2 of 3 (WSFAX 7/8/99) Stem cells (Cont’d) The position paper proffered by Brownback asserts that “Congress and the courts should ensure that the law is properly interpreted and enforced to ban federal funding for research which harms, destroys or 16 dependent upon the destruction of human embryos.” Among those endorsing the paper are former Surgeon General C. Evere o former Food and Drug Administration Commissioner Frank Young ond the head of the Center of Clinical Bioethics at Georgetown University, Edmund Pellegrino. But while opponents contend that the embryo ban clearly applies to Stem cell research, some of them admit privately that they’re boxed in by the NIH move. They note that the legal interpretation Supporting NIH--that stem cells are not embryos and thus are not covered by the ban--would be difficult to fight in court. At the same time, they say attempting to reword the ban so that it specifically mentions stem cells could be perilous, since such a move could be viewed as a tacit admission that the NIH interpretation has some merit. This perception, they say, would be particularly damaging to their cause if the rewrite failed. One option under consideration is to focus on the guidelines NIH is set to release in the next couple of weeks, which will dictate such things as the process grantees must follow in obtaining stem cells for their research. Opponents may attempt to add language to the NIH funding bill that would attempt to block federal funding for stem cell experiments by forbidding NIH from spending any money to implement the guidelines. Meanwhile, the National Bioethics Advisory Commission (NBAC), which later this month is expected to release its assessment of the ethics of stem cell research, is providing fodder for both sides. Those favoring stem cell research are heartened by the fact NBAC appears close to adopting a position that would allow federally- Supported stem cell experiments to include work @irectly with human embryos, as long as the embryos were originally created for infertility treatments and would be discarded were they not donated to science. But opponents have seized on language in an early draft of the commission’s still-evolving report on stem cells as supportive of their arguments against the NIH initiative. The draft states that “as long as embryos are destroyed as part of the research enterprise, researchers using embryonic stem cells (and those who fund them) will be complicit in the death of embryos.” The head of NBAC, Princeton University President Harold Shapiro, said that while he supports funding for both use and derivation, he thinks the report should be reworded to indicate that there is a difference between research that involves extracting stem cells from embryos and that which involves work exclusively with stem cells. Richard Doerflinger of the National Conference of Catholic Bishops said any attempt by NBAC to alter the draft language will be seen ag “fuzz2ing-up their position for the political purpose of playing ball with NIH.” Doerflinger also said the fact that some commissioners don’t want to rule out the creation of embryos sOlely for research purposes gives the appearance that NBAC is biased in favor of stem cell research and conld dilute the political influence of any recommendation it makes. C 3 fos JUL Oo8, ’°99 00:02 (ET) To: Dr Harold Varmus PAGE 3 of 3 47/87/1999 19:04 15689949366 WASHINGTON FAX PAGE 3 Page 2 of 3 (WSFAX 7/8/99) Stem cells (Cont’d) report already has prompted the chair of the House Commerce Committee, Rep. Tom Bliley, R-VA, to announce he will hold hearings on stem cell research. in a statement released in May, Bliley said was “deeply concerned” about the draft recommendations and “gravely disappointed” that NBAC was not considering “substitutes to using human embryos for scientific experimentation.” Even though NBAC has yet to issue a final recommendation, the draft 8 “Our hearing will examine the Clinton administration's proposals and explore alternatives,” Bliley said. A spokesman for Bliley said this week that the congressman still plans to hold stem cell hearings but has not set a date. Organizers of the CURe advocacy group hope to rise above the din of the debate by keeping lawmakers focused on the potential of stem cells to relieve human suffering. Dan Perry, executive director of the Alliance for Aging Research, who is serving as chair of the group, has said CURe hopes to avoid tit-for-tat skirmishes with opponents by “putting a human face on this issue.” --Matthew Davis Also availabale today on the Washington Fax web site: INADEQUATE PROJECT MANAGEMENT AT DOE RESULTS IN FREQUENT COST OVERRUNS, DELAYS, SAYS NATIONAL RESEARCH COUNCIL http: //www.washingtonfax.com/p1/1999/19990708a-html EAE AREER ERMERAKERRERREREERREENAEEKEAKEKREEERRREE AMA DELEGATES ADOPT NEW POLICY ON PATIENT CONFIDENTIALITY IN MEDICAL RESEARCH http: //www.washingtonfax.com/p1/1999/19990708b. html Compiled and Published by: WASHINGTON FAX: AN INFORMATION SERVICE Publisher: Bradie Metheny Executive Editor: Shirley Haley Phone: 508-999-6097 Fax: 508-994-9366