American Pediatric Society & Society for Pediatric Research

Public Policy Council

 2003–2004 Activities Report 

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The following report, covering programmatic activities of the Public Policy Council from May 3, 2003 to May 2, 2004 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 San Francisco. This activities 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, myron_genel@yale.edu.  

The Public Policy Council, formed twenty years ago this July, 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 San Francisco, the forum's eighteenth, was held Monday morning, May 3, featuring Richard Behrman, M.D., who was chair of the Institute of Medicine's Committee on Clinical Research Involving Children. Dr. Behrman presented the findings and recommendations of the committee's report released in late March.  

The eleventh annual Public Policy Plenary Symposium, conducted by the Public Policy Council in collaboration with the Public Policy and Advocacy Committee of the Ambulatory Pediatric Association, was held Sunday, May 2 and wasdevoted to an analysis of the National Children's Study, an extensive long-term study involving the National Institute of Child Health and Human Development, the National Institute of Environmental Health Sciences, the Centers for Disease Control and Prevention and the Environmental Protection Agency and which has been in the planning stages for several years. The plenary session, provocatively entitled "The National Children's Study: 'Framingham' for Children—Can We Pull It Off?" was moderated by Elena Fuentes-Afflick, a member of the Public Policy Council and a former member of the NICHD Council. Panelists included Duane Alexander, NICHD Director, Peter Scheidt, Study Director, and Michael Weitzman, Executive Director of the Academy's Center for Child Health Research. Dr. Weitzman was co-editor with Robert Brent of an extensive supplement to the April issue of Pediatrics devoted entirely to environmental influences on pediatric health. The National Children's Study is an ambitious and expensive undertaking which has generated controversy in some circles, though the full scope and purpose of the study does not appear to be well known to the majority of our members. The plenary session attracted considerable interest with a lively discussion following the formal presentations.

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. The societies have been well served by Ms. Hendricks over the past dozen 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. 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, chair of the APA's Public Policy and Advocacy 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. John Lewy, chair of the Academy's Committee on Federal Government Affairs (COFGA) continues to participate 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 at Yale's Child Health Research Center.  

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 Research Funding. In the face of massive federal deficits, funding of various health programs, including the NIH, was especially difficult during the past year. After succeeding in doubling the NIH budget over a five-year span, Congress provided a modest 3% increase in the FY-04 year, an appropriation that was not resolved until late January 2004, three months into the FY-04 fiscal year. A similar increase is likely for the FY-05 year, thought the Public Policy Council, in line with the recommendations of the Ad Hoc Group, Research!America, and the other advocacy organizations, has recommended increases of 8-10% in order to sustain the scientific momentum achieved by the doubling. In reality, increases of this magnitude are very unlikely and it is probable that we are again facing a roller coaster phenomenon of NIH funding similar to that which the scientific community experienced twenty years ago. The Public Policy Council submitted a statement to the House Appropriations HHS Subcommittee with recommendations for the FY-04 budget and will be submitting a statement on the FY-05 budget shortly. Funding for other health-related agencies of importance to our membership fared even less well than NIH with budgets at AHRQ, CDC and health professions training (Title VII and VIII) maintained at level funding if not sustaining modest cuts. Full details are provided in the Public Policy Council's legislative report.  

In the face of these budgetary limitations, there is little progress to report on NIH's implementation of the Pediatric Research Initiative (PRI), authorized in the Children's Health Act of 2000. One component of the PRI which has been implemented quite successfully is the loan forgiveness program for pediatric researchers, which provided 168 awards in FY 2002 and 298 in FY 2003. In addition, there is a specific loan repayment program for investigators in clinical research that was authorized as part of the Clinical Research Enhancement Act. With respect to the Pediatric Research Initiative, there is interest on the part of some of the primary Senate sponsors, Sens. Dewine, Clinton, Bond and Dodd to re-authorize this portion of the Children's Health Act separately in 2004, possibly with additional provisions on protection for children in research and with legislative authorization for the National Children's Study and perhaps language on testing of medical devices in children. Each of these items will likely appear initially as separate legislative proposals and it is questionable whether any definitive Congressional action will occur in this session of Congress.  

The Institute of Medicine's Committee on Clinical Research Involving Children, initially authorized by the Better Pharmaceuticals for Children's Act of 2002, issued its report on "The Ethical Conduct of Clinical Research Involving Children", on March 25, 2004 with a number of recommendations. The Public Policy Council and the Societies were well represented on the Committee, chaired by Richard Behrman, with Russ Chesney as well as several other members of the Pediatric Academic Societies. Testimony on behalf of the APS/SPR was provided by Public Policy Council member Christine Gleason at a public forum convened by the Committee on July 9, 2003. George Dover, representing AMSPDC, and David Schonfeld, representing the American Academy of Pediatrics, also testified at the hearing. The office of Sen. Christopher Dodd, a prime sponsor of the BPCA, is particularly interested in the report and plan to introduce legislation which will incorporate several of the Committee's recommendations. Dick Behrman and I have been in close contact with the Dodd staff as well as with the staff of the major Senate authorizing Committee (HELP).  

During the year, a significant issue which engaged the Public Policy Council was an assault on the NIH peer review process by conservative members of Congress, led by Rep. Patrick Toomey, R-PA, who attempted to withdraw funding of peer-reviewed NIH grants relating to sexual behavior and prevention of sexually-transmitted disease. His amendment to the House HHS appropriations bill failed, but by only two votes. Subsequently, NIH was forced to review the approval process for a number of grants in behavioral research. The Public Policy Council was among 151 organizations which communicated support for the peer review system in a September 2003 letter to the Senate and subsequently sent a separate letter in which we were joined by the American Academy of Pediatrics and the Ambulatory Pediatric Association. The Public Policy Council worked closely during the year with the American Academy of Pediatrics on restoration of the FDA's Pediatric Rule after this was stricken down by the federal district court in 2002. A major victory during the course of the year was passage in December 2003 of the Pediatric Research Equity Act which requires the testing of drugs likely to be used in children. The Public Policy Council has cooperated with the AAMC in gathering data on the impact of the HIPAA regulations on clinical research. This survey is now being used to justify modification of the rules on privacy and confidentiality.  

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, is chair of COFGA while Richard Bucciarelli, leads the Academy's Task Force on Access to Health Care, which functions as a subcommittee of COFGA.

COFGA has met on two occasions over the past year, September 14-15, 2003 and February 8-9, 2004, both in the Washington, DC area. Improvement in access to health care for children continues to be a major issue for COFGA and the Academy's Washington office. The Academy continues to actively support the MediKids legislative proposal introduced by Rep. Pete Stark and Sen. John Rockefeller, though this continued to attract only Democratic sponsorship in a Republican-controlled Congress. Upon the recommendation of its access subcommittee, COFGA has urged participation with other primary care professionals and community-based organizations to explore other means of achieving the goal of universal access, including tax credits which have been proposed to expand coverage while preserving the private insurance mechanism. AAP has opposed proposals that would build on the Federation Health Plans or AHP's, as these could override state mandates. The Academy has vigorously opposed proposals to block grant Medicaid and has taken a somewhat ambivalent posture to proposals that would separate and federalize the acute care components of Medicaid for children and pregnant women. It is worth noting that the proposal to bifurcate Medicaid received considerable support at the annual spring meeting of AMSPDC. With regard to Medicaid, the Academy continues to press for creation of a Medicaid Payment Advisory Commission to advise the Centers for Medicare and Medicaid Services (CMS) comparable to the role of the Medicare Payment Advisory Commission (MEDPAC).  

The other major activity of the Academy's Washington office was legislation, the Pediatric Research Equity Act passed in December 2003, which restores FDA's Pediatric Rule requiring pharmaceutical firms to test drugs in children when there is the potential for significant use. The Academy and COFGA have been active through the Democratic primary campaign and are mobilizing for the forthcoming national elections, employing some techniques brought to COFGA by Dr. Julianne Thomas, a COFGA member who lost a very close 2002 Congressional race in Iowa.  

At COFGA's February meeting there was extensive discussion of the "medical home" concept that emphasizes the role of a general pediatrician in coordinating care which is often fragmented for children with disabilities and chronic illness. Previously, COFGA had recommended continued development of the concept but opposed seeking federal legislation. The multifaceted nature of this issue, involving exposure and training during pediatric residency, workforces shortages in many subspecialties, dearth of adequate models, and financial disincentives provoked substantial discussion at COFGA's February meeting. An October 2004 conference devoted to the educational aspects of this subject is planned by the Federation of Pediatric Organizations and the American Board of Pediatrics.  

Currently there is considerable activity within the Academy on workforce projections in pediatrics stimulated by a recent paper in Pediatrics (SA Shipman, et al, March 2004), which projects an oversupply of pediatrics relative to the child population by 2020. While there is reason to question the reliability of workforce projections based on current practice models and population data, as pointed out in a subsequent commentary by AAP president-elect, Carol Berkowitz, the report has stimulated considerable discussion within AMSPDC and the Academy. As a result, the Academy has enhanced its workforce website to incorporate a number of "workforce talking points" regarding pediatrics as an attractive career.  

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 94 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.  

The Council of Academic Societies met on two occasions during the academic year - November 8-11, 2003 in Washington as part of the annual general meeting of the AAMC and March 11-14, 2004 in Santa Monica, California. Chair of the CAS is now Barbara Schuster, representing the Association of Program Directors in Internal Medicine. The past chair of the CAS, Lynn Eckert, is chair-elect of the AAMC. Programs at both meetings dealt heavily with improving quality within academic medicine, a theme of Jordan Cohen's AAMC presidential address. The November meeting featured CAS plenary sessions on the forthcoming clinical skills assessment exam or the USMLE part IIB and a session on quality in medical education and faculty time and effort reporting. The spring meeting in Santa Monica was built around a theme of "Changing Academic Medicine's Focus From Growth to Quality" a tacit statement that the era of medical center expansion has likely ended.  I attended the annual meeting in November; unfortunately none of the members of the Public Policy Council were able to attend the spring meeting.  

With respect to the Association as a whole, the AAMC continues to be actively engaged in promoting financial and regulatory support for biomedical research, though in the past year much of this has been rear guard activity. AAMC has devoted considerable resources to defending the National Residency Matching Program, headquartered at the AAMC, (Jung, V, AAMC, et al). AAMC secured a legislative victory in early April when language was included in the Pension Funding Equity Act of 2004 that explicitly stated that the NRMP did not violate federal antitrust laws. However, as of the preparation of this report, efforts are underway by opponents to reverse the legal protection for the match that was provided in this legislation. The AAMC has established an Institute for Improvement in Medical Education. An advisory board comprised of ten medical school deans, chaired by Harvard dean Joseph Martin, has produced a draft report calling for extensive reforms across the entire continuum of medical education from undergraduate through residency and continuing medical education. The Institute's recommendations are far reaching and in some respects revolutionary, though they clearly will be difficult to implement.  

I conclude this report, as always, with the exhortation to the Societies to become more active within the affairs of the AAMC, in particular the Council of Academic Societies. The AAMC is a major voice for academic medicine and the CAS provides a vehicle for significant input by faculty and chairs. The fall annual meeting of the AAMC will be in Boston on November 5-9, 2004. This provides an unparalleled opportunity for interaction with our colleagues in other academic disciplines. Next year's CAS spring meeting, always a highlight, will be held at the Westin La Paloma in Tucson, Arizona, March 10-13, 2005.

Operations and Finances: The Office of Government & Community Affairs at the Yale School of Medicine was closed on January 1, 2004 with my conversion to emeritus status. My office at the medical school is now in the Child Health Research Center and Public Policy Council activities, which previously were blended with those of my activities as an associate dean, are managed separately. I have been fortunate to secure the part-time services of Eleanore Miller, who has worked with me for many years and who also retired in January, and the three parent societies have agreed to fully fund our New Haven based operations. The long-standing arrangement with the Academy of Pediatrics' Washington office remains unchanged.  

Submitted by

Myron Genel, M.D.
Chairman