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American Pediatric Society & Society for Pediatric Research Public Policy Council |
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2003–2003 Activities Report |
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The
following report reviews programmatic activities of the Public
Policy Council from May 3, 2002 to May 2, 2003 and is modified
from a report provided to the joint APS/SPR councils on May 2
during the meeting of the Pediatric Academic Societies and
affiliated organizations in Seattle. This report supplements the
legislative report prepared by the Public Policy Council's
Washington-based staff. Queries or comments should be directed
to the Public Policy Council chairman,
. The Public Policy Council, formed almost twenty years ago, includes two representatives from each of the three constituent societies, the American Pediatric Society (APS), the Association of Medical School Pediatric Department Chairs (AMSPDC) and the Society for Pediatric Research (SPR). Members serve simultaneously as representatives to the AAMC Council of Academic Societies and as liaison and alternative representatives to the AAP Committee on Federal Government Affairs (COFGA). The Public Policy Forum is a loosely knit assembly of designated representatives at each major academic institution represented in AMSPDC; it serves as a communication network with the membership of the three societies and with academic pediatrics in general. Materials are distributed regularly to the Forum, including periodic legislative updates as well as relevant items on time-specific issues. These are supplemented by the Public Policy Council's home page on the APS/SPR web site which also provides E-mail access to our Washington coordinator and to myself. The Forum also serves as a vehicle for the annual legislative briefing at the annual meeting. The legislative breakfast at this year's PAS meeting in Seattle, the forum's seventeenth, was held Monday, May 5, featuring David Rimoin, M.D., Ph.D., chair of pediatrics at the Cedars-Sinai Medical Center and a charter member of the Institute of Medicine's Clinical Research Roundtable. Dr. Rimoin's talk "Clinical Research at a Crossroads: Overcoming the Translational Roadblocks. An Action Plan from the IOM's Clinical Research Roundtable", outlined four major problem areas or "challenges" and described two translational blocks, from the Roundtable's recent report, Sung, S, Crowley, WF, Genel, M, et al. Central Challenges Facing the National Clinical Research Enterprise. JAMA:289, 1278-1287, 2003, http://jama.ama-assn.org/cgi/content/full/289/10/1278. The tenth annual Public Policy Plenary Symposium, conducted by the Public Policy Council in collaboration with the Public Policy Committee of the Ambulatory Pediatric Association, was held May 4 and was devoted to an issue of great importance to our membership "The Changing Spectrum of Pediatric Specialty Care: Implications for the Pediatric Generalist and Specialist". Panelists included James Perrin, director of general pediatrics at the MassGeneral Hospital for Children and former president of the Ambulatory Pediatric Association, Julia McMillan, vice-chair for education and residency program director at Johns Hopkins, and Robert Haslam, emeritus professor and chair of pediatrics at the University of Toronto and emeritus physician-in-chief of the Hospital for Sick Children in Toronto. Long time Public Policy Council member and APS president, Russ Chesney moderated the two-hour session which was structured to permit a vigorous, interactive discussion between the panelists and the audience. Membership on the Public Policy Council remained stable during the past year with Christine Gleason and Elena Fuentes-Afflick from the Society for Pediatric Research, Jimmy Simon and myself for the American Pediatric Society and Russ Chesney and Jon Abramson for AMSPDC. Karen Hendricks has continued her effective service as the Public Policy Council's Washington Coordinator, assisted by Kristin Butterfield, both working out of the Academy of Pediatrics' Department of Federal and Government Affairs in Washington. The societies have been well served by Ms. Hendricks over the past twelve years. She is highly regarded as a central figure at most of the Capitol's most significant and relevant health-research advocacy groups. She has served on the steering committee of the Ad Hoc Group for Medical Research Funding for a number of years, is past president of the Coalition of Health Funding, a consortium of voluntary health organizations, professional societies and advocacy groups, past chair of Research!America's Public Affairs Committee, and a pivotal figure in a number of issue-specific coalitions. Ms. Hendricks serves as principal staff for the Academy's Council on Pediatric Research, headed by Russ Chesney. The effectiveness of the Public Policy Council and our continued visibility in Washington is, in many respects, a reflection of Ms. Hendrick's standing and her efforts on our behalf. The council's activities continue to be conducted primarily through a monthly conference call supplemented by frequent mailings and e-mail communications from the Academy's Washington office as well as from the AAMC Council of Academic Societies. Conference calls have frequently included Lolita McDavid and Charles Oberg, chairs of the APA's Public Policy Committee, in part to coordinate plans for the PAS annual meeting, but increasingly to coordinate policy initiatives, and Richard Behrman, executive chair of the Pediatric Education Steering Committee for the Federation of Pediatric Organizations, for input on pediatric workforce and other issues. Dr. Behrman chairs a recently-established Institute of Medicine committee on the participation of children in clinical research. John Lewy, who assumed leadership of the Academy's Committee on Federal Government Affairs (COFGA) in July, has participated in conference calls prior to COFGA meetings. Materials, including minutes of conference calls, are shared routinely with the leadership of the three societies and thus provide opportunity for input on specific issues. The semiannual legislative reports prepared for the councils and AMSPDC executive committee and testimony by Public Policy Council members are routinely placed on the Public Policy Council web site. Programs of the Public Policy Council continue to be conducted from both the Academy's Department of Federal Affairs and my Office of Government and Community Affairs at Yale. The Public Policy Council monitored or was engaged in a number of issues during the past year, much of this reflected in the legislative report prepared by our Washington staff. As always, the Public Policy Council was actively engaged in appropriations issues, much of this through the Ad Hoc Group for Medical Medical Research Funding. The past year was a fairly difficult year, though the five-year effort to double the NIH budget was achieved, including funding of the Pediatric Research Initiative (PRI). Issues regarding implementation of PRI by the Institutes remain and Russ Chesney, through his multiple roles, has been actively pursuing this. Former PPC member Ora Pescovitz was among a group of research scientists and advocates convened by the Ad Hoc Group in August to develop recommendations for NIH funding after the doubling effort. The Group's consensus of an 8-10% increase will be difficult to achieve, though this has been generally accepted as appropriate by the various advocacy coalitions, including the Ad Hoc Group and FASEB among others. In response to a request from the Institute of Medicine's Committee on Assessment of Centers of Excellence at NIH, the Public Policy Council solicited comments from members of our constituent societies and submitted a statement in support of the centers' mechanism to the Committee, noting in particular the Neonatal Research Network, the Pediatric Pharmacology Research Unit (PPRU) Network and the Child Health Research Centers. Aside from issues relating to National Institutes of Health, the Public Policy Council supported advocacy proposals for funding of the Agency for Healthcare Research and Quality (AHRQ), Title VII training program in general pediatrics, and, in concert with the National Association of Children's Hospitals, funding for graduate medical education at free-standing children's hospitals. With implementation of HIPAA regulations on privacy and confidentiality of patient data, the Public Policy Council has joined in a consortium developed by the Association of American Medical Colleges (AAMC) to systematically collect data to document the regulation's impact on research. A notice regarding formation of the consortium and solicitation for participation has been distributed to all academic pediatric departments via the Public Policy Forum. The Public Policy Council was indirectly involved in the controversy surrounding dissolution of the National Human Research Protections Advisory Committee, as NHRPAC included a children's workgroup which was developing guidelines on application of the Common Rule for research involving children. Members of the workgroup, which met over a nearly two-year period, included Jon Abramson, Christine Gleason and myself. I have been informed by the workgroup's former chair, Alan Fleischman, that the workgroup's guidelines on minimal risk research were submitted to t he HHS Office for Human Research Protections (OHRP), which is now seeking a new permanent director. NHRPAC is being replaced by the Secretary's Advisory Council on Human Research Protections (SACHRP) which has been given instructions to examine the protection of the embryos and fetuses involved in human research. This additional charge to the new committee has fed into controversy regarding alleged politicalization of the federal advisory process by the Bush administration. The Public Policy Council continued to work with the American Academy of Pediatrics in support of the "carrot and stick" approach to insure appropriate testing of pharmaceuticals used in children through implementation of the Best Pharmaceuticals for Children Act which created an Office for Pediatric Therapeutics within the FDA, and in support of the Pediatric Rule which FDA has used to require testing of drugs used in children. When the Pediatric Rule was stricken down by the Federal District Court last fall, the Public Policy Council joined with the Academy to support authorizing legislation in the 107th and 108th Congress. PPC member Jon Abramson continues to be actively involved in immunization issues associated with bio-terrorism and smallpox in particular. AAP Committee on Federal Government Affairs: COFGA, formerly the AAP's Council on Government Affairs, includes eight members appointed by the Academy plus liaison representation from the three societies which form the Public Policy Council, the Ambulatory Pediatric Association, Society for Adolescent Medicine, the Academy's Committee on State Government Affairs, and the Academy's senior and resident sections. John Lewy, a member of all of the Public Policy Council societies, assumed leadership of COFGA during the past year and COFGA's former chair, Richard Bucciarelli, has assumed leadership of the Academy's Task Force on Access to Health Care, now a subcommittee of COFGA. COFGA has met on three occasions, June 9-10, 2002, February 2-3, 2003, and April 27-28, 2003, all in the Washington, DC area. Improvement of access to healthcare for children remained the major issue for COFGA and for the Academy's Washington office. A major accomplishment was convening of a Children's Access Retreat in January with a select group of 40 Washington-based health policy experts spanning the philosophical and political spectrum. There was agreement on the overall goal of achieving universal access for all children and the Academy's general principles on access were supported and reaffirmed. There was also agreement that there was need to broaden coverage to include families. Looking specifically at opportunities in the 108th Congress, it was concluded that the Academy's effort needed to be broadened beyond the MediKids bill which was reintroduced in March. This could include support for an advanceable, refundable tax credit for purchase of insurance, a strategy advanced by a number of the more conservative groups. A forthcoming special issue of Health Affairs is expected to include many of these proposals. COFGA also examined the Administration's Medicaid reform package which proposed capping of federal matching funds for Medicaid and SCHIP and separation of the funds into one allotment for acute care and another for long-term care. These would be capped based on FY '02 spending and increased annually by formula. The Academy is actively opposing implementation of this plan, as are a variety of advocacy organizations and many state governors. COFGA and the Academy's Washington office took an active role in support of the Best Pharmaceuticals for Children Act and codification of the Pediatric Rule through legislation after the FDA rule was stricken down by the US District Court. This is expected to be the major focus of Capitol Hill briefings during COFGA's late April meeting. At last June's meeting, there was extensive discussion of the lack of sufficient pediatric subspecialists, the topic of this year's PPC Plenary Symposium. Data from 1995-2000 was cited, indicating that while the number of parents taking their children to a pediatrician has increased 10%, those going to a pediatric subspecialist has doubled. COFGA members agreed to add the issue of encouraging medical students to pursue pediatrics and pediatric subspecialties as a further committee role. The Academy and COFGA have continued to pursue efforts to improve funding for pediatric services through enforcement of the equal access provisions of the Social Security Act for Medicaid services and for creation of a Medicaid Payment Advisory Commission to advise the Centers for Medicare and Medicaid Services (CMS) in a manner similar to the role of the Medicare Payment Advisory Commission (MEDPAC). Additional Academy efforts are to improve the funding codes for administration of vaccines. The Academy remains active, in many cases in the leadership, of various coalitions devoted to gun control, prevention of youth violence and limitation of tobacco and alcohol use among children. The grass roots Federal Advocacy Action Network (FAAN) has been upgraded by the Academy's Washington office to facilitate Academy advocacy issues such as those outlined above. AAMC Council of Academic Societies: The CAS is one of the three principal components of the Association of American Medical Colleges (AAMC) together with the Council of Deans and the Council of Teaching Hospitals. The CAS now includes 96 member societies of which four are pediatric - the three parents of the Public Policy Council as well as the Ambulatory Pediatric Association. The CAS provides an unparalleled opportunity for interaction of pediatric specialists with leaders of other professional societies as well as significant input into development of AAMC policies and activities. There continues to be no pediatric representation among the leadership of the CAS through its administrative board after a period of fifteen years during which either I or Paul McCarthy, representing APA, served on the Board. Indeed, there is limited participation from the Societies in CAS meetings and activities overall, other than for Russ Chesney's participation in the CAS Chairs Task Force and CAS Chairs Objectives Panel. I also served on the AAMC's Advisory Panel on Research until this year. The Council of Academic Societies met on two occasions during the academic year - November 9-13, 2002 in San Francisco as part of the annual general meeting of the AAMC and March 13-16, 2003 in Tampa. There continued to be a number of specific faculty-related programs developed by the CAS in addition to the highly successful CAS Chairs Objectives Panel, which has produced three modules, the final report on "The Successful Medical School Department Chair" having been issued in late 2002. The CAS Professionalism Task Force has issued a statement on "Attributes of Professionalism in Medicine" which has been well received and the new CAS Task Force on Dual Degree Students, Faculty and Programs is just being organized. In conjunction with the federal Office of Research Integrity (ORI), the AAMC has developed a cooperative agreement which provides funds for academic societies to develop programs promoting responsible conduct of research. Two rounds of solicitations have been completed and additional third and fourth rounds are projected. Four societies were awarded funding after the initial round of applications last fall. With respect to overall AAMC activities, the organization continues to provide leadership on research and education-related matters. The Ad Hoc Group for Medical Research Funding is led and staffed by the AAMC and the AAMC actively participates in a number of other coalitions, including those supporting AHRQ, Title VII, the National Health Service Corp., and CDC. The Association has initiated an Institute for Improvement in Medical Education which will embark on a comprehensive review of the current state of medical education in the United States with the intent of establishing a strategic direction for improvement across the entire continuum of medical education. The results of this review are expected by February 2004 and will serve as a blueprint for the Institute's future projects and activity. AAMC has taken a major role in representing the research community in the development and implementation of the HIPAA regulations on privacy and confidentiality. In particular, David Korn, the Association's senior vice president for biomedical and health sciences research, has been tireless in his efforts to modify the regulations, with partial success, and now in establishing an AAMC Consortium to monitor the impact on health-related research. AAMC also assembled a Task Force on Financial Conflicts of Interest which dealt with the potential impact on human subjects research. The Task Force issued two reports, one on conflicts of interest among individual investigators, issued last year, and a further report issued this fall on institutional conflicts of interest. AAMC has been actively involved in the debate over resident duty hours. A policy statement advocating strict enforcement of an 80-hour work week was issued by the AAMC last fall prior to the action by the ACGME which takes force July 1. Much of the action by the AAMC, as well as the ACGME, was prompted by a desire to preempt proposed federal legislation. AAMC has been engaged in two legal actions, one a challenge to the National Residency Matching Program, headquartered at the AAMC, which has also involved a number of other institutions as co-defendants in the action. AAMC filed an Amicus brief in support of the University of Michigan's affirmative action policies. Oral arguments were heard by the Supreme Court in early April and a decision is expected by late June or July. AAMC is also engaged in legal action to preserve the research exemption under patent law. CAS programs at the two meetings cover the entire spectrum of issues that are of current interest within the academic medical community. A highlight of the November meeting in San Francisco was a joint session with the Council of Teaching Hospitals and Council of Deans on projections for physician workforce subtitled "What if Buzz is Right?" referring to Dr. Richard "Buzz" Cooper's 2001 controversial JAMA paper which warned of a physician shortage at a time when most analyses projected a physician surplus. Another symposium dealt with problems of morale among rank and file academic faculty and burnout in department chairs. The spring meeting in Tampa, generally much more interactive in its retreat-like setting, was devoted to the overall theme of "The Scientific Basis of Medicine: Preserving Curiosity and Rigor" and featured Plenary sessions on (1) creating a culture of curiosity among medical students and faculty; (2) the scientific approach to dealing with uncertainty and ambiguity and (3) teaching to promote scientific rigor and to encourage curiosity. There was a special session devoted to new medical educational models that are being implemented at the new medical school at Florida State University with active involvement in community-based education, the planned Cleveland Clinic Lerner College of Medicine at Case Western Reserve University, which will seek to develop physician-investigators and an international "virtual" medical school (IVIMEDS) which is a collaboration among a number of US medical schools led by the University of Miami. I
continue to urge the Societies to become more active within the
affairs of the AAMC, in particular the Council of Academic
Societies. The AAMC is the primary voice for academic medicine
and the CAS provides a vehicle for significant input by faculty
and chairs, as evidenced by the above. The fall annual meeting
of the AAMC will be in Washington, DC from November 7-12, 2003.
The CAS spring meeting will be held March 11-14, 2004 in Santa
Monica, CA. |
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