American Pediatric Society & Society for Pediatric Research

Public Policy Council

March 2006 Legislative Report 

 






Return to APS/SPR Homepage

 

 
AMERICAN PEDIATRIC SOCIETY
ASSOCIATION OF MEDICAL SCHOOL PEDIATRIC DEPARTMENT CHAIRS
SOCIETY FOR PEDIATRIC RESEARCH

PUBLIC POLICY COUNCIL
LEGISLATIVE REPORT
March 2006

The first session of the 109th Congress ended with a flurry of activity, the likes of which have not been seen in some time.  A perfect storm of budget reconciliation and discretionary spending bills, where both mandatory programs like Medicaid and discretionary programs like NIH, Maternal and Child Health Block Grant, and Title VII were targeted for major cuts.  Despite the incredible advocacy efforts of thousands of pediatricians and others in the child health community, discretionary programs funded (or not funded - as the case may be) in the final FY 2006 appropriations bills took big hits, jeopardizing the health care safety net for children on which so many families depend. The safety net was further compromised by the passage of deep spending cuts to the Medicaid program, which the House of Representatives approved when they returned for the second session of the 109th Congress in January.

Our sights are now set on and our energies are directed toward the FY 2007 budget.  The President's budget, released on February 6, proposed $13.6 billion in cuts from Medicaid and the State Children's Health Insurance Program over five years. The president's budget also proposes to eliminate or cut funding for many other child health programs, including Children's Hospitals Graduate Medical Education (GME) program, Title VII health professions training grants, newborn hearing screening, Emergency Medical Services for Children (EMSC) program, and the National Children's Study. The pediatric community will be urging Congress in the strongest possible voice that funding for health programs must be sustained and increased in the FY 2007 budget and appropriations process.  Your help is critical if we are to be successful.  We'll be coming to you throughout the year to ask that you make your Senators and Representative know how these drastic cuts will harm children, and what the effect will be in your communities.  And, yes, how voters will be taking notice of how Congress supported child health programs in this upcoming mid-term election cycle. 

The following is an update and summary of recent federal legislative and regulatory activities of interest to the pediatric academic community that will assist you in your advocacy in the weeks and months ahead. We encourage you to share this information with your colleagues. Members of the American Pediatric Society, Society for Pediatric Research and the Association of Medical School Pediatric Department Chairs are urged to reach out to their Members of Congress to advocate for key health and pediatric-specific issues. 

This report includes information on the following issues:


PEDIATRIC RESEARCH   

National Institute of Health (NIH)/Appropriations: Through its coalition work with the Ad Hoc Group for Medical Research, the PPC engaged heavily in the fight to encourage an adequate increase for the NIH in FY 2006.  Unfortunately, after months of hard work and advocacy, the House and Senate in the final days of an extended session of Congress approved an FY 2006 Labor/HHS spending bill that contained $28.6 billion for NIH—an increase of just $153 million over FY 2005, the lowest increase to the NIH (less than 1%), in more than thirty years. That small increase, however, was essentially wiped out by a provision in the FY 2006 Defense Appropriations bill—also approved in the final hours of the Congressional session—that made a 1% across-the-board cut to all non-defense discretionary spending.  Therefore, the FY 2006 funding for the NIH is $28.4 billion reflecting a cut of $66 million.

The President's FY 2007 budget proposal for NIH is level funded at $28.4 billion. Through its work with the Ad Hoc Group the PPC will continue to seek adequate and appropriate increases in funding for the NIH. The advocacy community request for FY 2007 is a 5 percent increase above the FY 2006 funding level. We will also continue to support an adequate funding level for the NICHD of $1.35 billion including sufficient funding for and stability of the National Children's Study.

NIH Reauthorization: There has been a good deal of discussion about the reauthorization of the NIH in this 109th Congress. The last time the NIH was reauthorized was 1993. Rep. Joe Barton (R-TX), the chair of the committee of jurisdiction, the House Energy and Commerce Committee, has indicated his interest in reauthorizing the NIH and to this end is circulating a draft reauthorization bill. In general the draft legislation focuses on the organization and functions of the Office of the Director of NIH and its relationship to the individual NIH institutes and centers, provides enhanced authorities for strategic planning and support of trans-institute initiatives and creates a detailed series of reporting requirements covering research and other activities supported by the NIH. The draft also eliminates several disease specific authorizations for appropriations and reporting requirements. At this time it is unclear if or when Congress will seriously address these concerns in the second session of the 109th Congress. There are also several areas of concern - such as stem cell research, fetal tissue research, and conflict of interest issues, as well as some of the allegedly "controversial" behavioral research grants - that may further complicate the process as this moves forward in the coming year.  However, at a recent congressional hearing Chairman Barton reiterated his commitment that the reauthorization of the NIH is a top priority this year.

National Children's Study (NCS): The PPC continues to be very involved with and participates in various aspects of this important national longitudinal study, and plays a leadership role with other advocates, such as the March of Dimes, to secure adequate and stable funding for the study.  The Study continues to move forward, however, the implementation of the study could be over before it even begins if the president's proposed zero funding for the NCS in FY 2007 is approved by Congress.

Sufficient funds have previously been appropriated for the launch of at least three Vanguard Centers and one Coordinating Center, but, beyond the final pilot work, the outlook for funding of this important study is uncertain at best.   It is estimated that the total cost of the NCS over 25 years will be between $2–$3 billion. The membership of the reconfigured National Children's Study Federal Advisory Committee includes several prominent pediatricians, including Myron Genel, MD, chair of the Public Policy Council, former AAP president Antoinette P. Eaton, MD, Edward R.B. McCabe, MD, PhD, David Schonfeld, MD, chair of the AAP's Committee on Pediatric Research, and Alan Fleischman, MD, who chairs the Advisory Committee.  There are now seven Vanguard Centers, which will pilot and complete the first phases of the Study:

  • University of California, Irvine, for the Study location of Orange County, California

  • University of North Carolina, Chapel Hill, for the Study location of Duplin County, North Carolina

  • Mount Sinai School of Medicine, New York, for the Study location of Queens County, New York

  • Children's Hospital of Philadelphia and Drexel University School of Public Health, Philadelphia, for the Study location of Montgomery County, Pennsylvania.

  • University of Utah, Salt Lake City, for the Study location of Salt Lake County, Utah.

  • University of Wisconsin (UW), Madison, and the Medical College of Wisconsin, for the Study location of Waukesha County, Wisconsin.

  • South Dakota State University with Children's Medical Center of Cincinnati and the University of Cincinnati for the Study location of Brookings County, South Dakota, and Lincoln, Pipestone, and Yellow Medicine Counties, Minnesota.

The pediatric community will need to work very hard to insure that the NCS is allowed to go forward and that funding is available for the implementation of the study in the year ahead.

Further information and updates are available at http://www.nationalchildrensstudy.gov.

Pediatric Research Loan Repayment: The NIH loan repayment program, including pediatric and clinical research, continues to be a successful and important option for early and mid-career pediatric researchers. According to the NIH, over 500 new and 100 renewal applications were submitted to the Pediatric Research LRP in FY 2004. Nearly 50 percent of the new applications and more than 80 percent of the renewal applications were funded. In FY 2004, more than 50 percent of awards went to applicants with M.D. or M.D. /Ph.D. degrees.  Also, half of the awardees were within 5 years of the receipt of their doctoral degree.  There were 228 awards in FY 2004 for pediatric loan repayments in contrast to 298 in FY 2003 and 168 in 2002.  It is very important that this program—which allows eligible researchers and trainees supported by governmental (including AHRQ) and private, nonprofit grants to apply to the NIH for loan repayment—continue to be well publicized and utilized by pediatricians to ensure ongoing funding for this critical initiative.  The current extramural funding cycle is now closed.  Funding decisions will be announced in August 2006.  The next application will open in September 2006.  Additional information is available at http://www.lrp.nih.gov. 

Publication and Disclosure Issues in Clinical Trials:  This topic currently has great momentum, due in part to the high-profile problems with Vioxx and other drugs.  Senator Chris Dodd (D-CT) has reintroduced from the 108th Congress the Fair Access to Clinical Trials (FACT) Act of 2005, S. 470.  The legislation calls for a clinical trial registry, accessible to patients and health care practitioners, for ongoing clinical trials for serious or life-threatening diseases and conditions, and a clinical trials database of all publicly and privately funded clinical trial results regardless of outcome, accessible to the scientific community, health care practitioners, and members of the public.  The bill currently has six bipartisan co-sponsors.  On the House side, Reps. Henry Waxman (D-CA) and Edward Markey (D-MA) reintroduced in June 2005, H.R. 3196, a bill that would expand on the National Library of Medicine's www.clinicaltrials.gov database. Sponsors would be required to register all privately and publicly funded studies of drugs, biologics, or medical devices with safety or effectiveness endpoints as a condition of obtaining Institutional Review Board (IRB) approval.  H.R. 3196 has 40 co-sponsors. The PPC will work closely with the primary authors of the legislation to make sure that the voice of the pediatric research community is heard as this legislation moves forward in the second session of the 109th Congress.

Agency for Healthcare Research and Quality (AHRQ)/Appropriations: The PPC, as part of a broad-based coalition, the Friends of AHRQ, supports a $440 million funding request for AHRQ in FY 2007.  The President proposed level funding at $319 million for AHRQ in FY 2006 and again for FY 2007, with all funds allocated via transfers from other public health service agencies. The funding is designated for health information technology and patient safety ($84 million), $15 million for clinical effectiveness research and $17.1 million available for new non-patient safety research grants. There is also interest by the Senate to reauthorize AHRQ before the end of this session. AHRQ should have been reauthorized in 2005.

Secretary's Advisory Committee on Human Research Protections (SACHRP): The Secretary's Advisory Committee on Human Research Protections (SACHRP) has a Subcommittee for Research Involving Children, which includes several notable pediatricians. The subcommittee was formed to provide recommendations for consideration by SACHRP on interpretations of the requirements of HHS regulations 45 CFR 46.404-407 ("Subpart D") in order to help ensure that children who participate in research are appropriately and adequately protected.  In April 2005, the pediatric subcommittee finalized, after more than a year, its recommendations for defining a number of terms in Subpart D.  These recommendations are designed to increase the clarity and consistency in research approvable under this section.  Among the concepts defined by the subcommittee are uniform standard, minimal risk, condition, commensurate, and vital importance.  The Subcommittee has submitted the recommendations in a letter to HHS Secretary Leavitt. The next areas of consideration for the subcommittee are issues of parental permission and child assent, as well as further clarification of terms and decision-making challenges found within section 46.405 such as placebo-controlled and vaccine trials involving children.  Additional information, including its charter and the pediatric subcommittee roster, can be found on the SACHRP's website, at http://www.hhs.gov/ohrp/sachrp/index.html.

Embryonic Stem Cell Research:  On May 24, 2005, the House passed H.R. 810, the Stem Cell Enhancement Act of 2005, by a vote of 238 to 194.  The bill—introduced in February 2005 by a Reps. Mike Castle (R-DE) and Diane DeGette (D-CO)—modifies the current stem cell policy, established in August 2001, by expanding the number of stem cell lines that are eligible for federally funded research.  A companion Senate bill, S. 471, introduced by Senators Arlen Specter (R-PA) and Tom Harkin (D-IA), currently has 40 bipartisan cosponsors. 

On December 16, the Senate unanimously passed the Stem Cell Therapeutic and Research Act of 2005, which provides for the collection and maintenance of cord blood units for the treatment of patients and research, and to authorize the Bone Marrow and Cord Blood Cell Transplantation Program to increase the number of transplants for recipients suitable matched to donors of bone marrow and cord blood. A number of Senators, including Sen. Tom Harkin (D-Iowa), sought to amend the bill to include language from the Castle/DeGette Stem Cell Research Enhancement Act (HR 810). Ultimately, the amendment was retracted, though the bill's House sponsors and the Coalition for the Advancement of Medical Research urged Senate Leadership to schedule a vote on H.R. 810 in early January. The pediatric community, working as part of a broad coalition of patient and research advocacy groups, will continue to urge Senate action on this bill in 2006.  Of course it is anticipated that even if both the House and the Senate approve an embryonic stem cell bill, President Bush has indicated his intent to veto the measure. In addition, while the debate continues in Congress, several states have or are contemplating introducing stem cell legislation following the success of the 2004 California stem cell ballot initiative.  

In April 2005, the Committee on Guidelines for Human Embryonic Stem Cell Research of the National Research Council and the Institute of Medicine issued a report that provides guidelines for the responsible practice of human embryonic stem cell research. Some of the key recommendations of the report include:

  • Establishing an embryonic stem cell oversight committee to provide local oversight of all issues related to derivation and research using stem cells

  • Institutional Review Boards cannot waive the requirement for obtaining informed consent.

  • No cash or in-kind payments may be provided for donating blastocysts in excess of clinical need for research purposes

  • A national body should be established to assess periodically the adequacy of the guidelines proposed by this NRC/IOM report and to provide a forum for continuing discussions of issues involved in human embryonic stem cell research.

On February 16, 2006, the National Academies' National Research Council and Institute of Medicine announced that they were convening a new committee to provide updated guidelines on the conduct of human embryonic stem cell research. According to the press release, the "committee will periodically update the guidelines issued last year by the Academies to reflect advances in stem cell science. The guidelines are voluntary and intended to enhance the integrity of human embryonic stem cell research by encouraging responsible practices." The Committee will be funded by private sources, including the Ellison Medical Foundation, the Greenwall Foundation, and the Howard Hughes Medical Institute.

NIH Conflict of Interest Regulations: In a Senate hearing held in April 2005, key Senators indicated that some adjustments must be made in the conflict of interest regulations that NIH Director Elias Zerhouni, MD announced last year. Under the rules, NIH employees will be barred from entering outside consulting agreements with pharmaceutical companies, hospitals, health insurers and health care providers. The guidelines also forbid 6,000 top NIH employees from holding stock in pharmaceutical or biotechnology companies, and require current stockholders in the group to sell their shares. Other agency employees must divest by the same date any holdings that exceed $15,000 in value for a particular company. During the hearing Senator Harkin told NIH Director Elias Zerhouni  "[t]hey are too onerous, and they must be redone, soon before you lose more people. I think we've gone overboard." Senator Specter added that the committee would recommend ways to loosen the rules. In addition, Secretary of Health and Human Services Michael Leavitt also indicated that these regulations might need to be reviewed, in light of the numerous comments received on the interim final ethics regulations.  Accordingly, to allow time for this review and consideration, the deadline for filing supplemental financial disclosure reports was extended to October 3, 2005, and the deadline for divesting financial interests prohibited under the regulation was January 2, 2006.

Coalition to Protect Research: The Coalition to Protect Research is a coalition of organizations committed to promoting public health through research. Sexual health and behavior research is essential to providing a scientific foundation for sound public health prevention and intervention programs. The PPC, the Society for Adolescent Medicine, the AAMC and other groups continue to closely monitor the challenges to the peer review process and certain NIH grants that have arisen during the appropriations process from some members of Congress over the past three years. 

PEDIATRIC MEDICAL DEVICES

Following the series of stakeholder meetings hosted by the AAP, the Elizabeth Glaser Pediatric AIDS Foundation, the National Organization for Rare Disorders (NORD), the National Association of Children's Hospitals, and the Advanced Medical Technology Association last year, the pediatric community has continued legislative efforts to increase the access and availability of pediatric medical devices for neonates, infants, children, and adolescents.  On November 1, 2005, AAP along with Elizabeth Glaser Pediatric AIDS Foundation, the American Thoracic Society and NORD hosted a briefing for Senate Health, Education, Labor and Pensions (HELP) Committee staff on the need for pediatric medical devices.  The briefing was well attended and FDA regulatory pathways for medical devices were discussed fully.

The AAP has convened a Task Force on Pediatric Devices, chaired by PPC member Dr. Jon Abramson representing the AAP and PPC.  The two-year Task Force, which has six members, will provide leadership and direction on issues surrounding the safety and effectiveness of existing devices and promote the development of new medical devices that address the needs of children.

Congressional Activities:  Senate staff remains interested, and staff is optimistic, about the development of legislation in the second session of the 109th Congress to increase access to pediatric devices.  The pediatric community will continue to meet regularly with congressional staff to ensure that any legislation is comprehensive and adequately addresses the needs of pediatricians and their patients.

PEDIATRIC WORKFORCE

GME Financing in Children's Hospitals: The FY 2006 Labor-HHS-Education conference agreement provided $297 million for the CHGME program (inclusive of the 1% across the board cut).  The 2007 proposed budget from the president would reduce funding for this program by two-thirds, to $99 million.  The President also asks Congress to "reform" CHGME by targeting the remaining CHGME funding to only children's hospitals that have the greatest financial need, serve the largest number of uninsured patients, and train the most residents.  With this proposed change in mind, the PPC will be working closely with the National Association of Children's Hospitals (NACH) to ensure adequate funding, as well as protect the original statutory functioning of the CHGME program.

Reauthorization: Last July the Senate passed S.285, reauthorizing the CHGME through FY  2010.  The legislation, the Children's Hospitals Educational Equity and Research (CHEER) Act, authorizes $330 million for FY 2006 and "such sums as necessary" for subsequent years to children's hospitals for expenses associated with operating approved graduate medical residency training programs. The House bill, H.R.1246, introduced by Representatives Nancy Johnson (R-CT) and Deborah Pryce (R-OH), currently has 158 cosponsors. The PPC will continue to work closely in collaboration with NACH to secure final passage in the second session of the 109th Congress. It is imperative that action is taken swiftly on reauthorization in the House of Representatives in light of the changes proposed by the Administration to the CHGME. These changes include reducing funding dramatically and targeting the remaining dollars to only children's hospitals that have the greatest financial need, it is absolutely critical that reauthorizing legislation be enacted as soon as possible.

Titles VII and VIII—Health Professions Training Grants/Appropriations: Once again, the Title VII program has been a target for near-elimination by the Administration and Congress.   As in the previous four years, President's FY 2007 proposed budget removed all funding for primary care, interdisciplinary community projects, and public health. The President proposed only $10 million for the Title VII program.  As in previous years, Title VII also faces major funding threats in Congress.  After being slated for near-elimination in the House and Senate, appropriations conferees added $52.7 million to the Title VII programs, bringing the total appropriation for FY 2006 to $146.7 million (combined $297.8 for Titles VII AND VIII).  Specifically, $13 million was added to the Primary Care Medicine and Dentistry programs, for a total appropriation of $40 million - a 54% cut from FY 2005, but also not the elimination that was slated for in the House.

Following a tradition of many years, the pediatric community continues to vigorously fight to restore funding for health professions and nursing education training under both Titles VII and VIII.  Through its leadership efforts with the Health Professions and Nursing Education Coalition, the PPC will push for the restoration of funds for this small but vitally important program.  In addition, PPC staff is compiling examples of the real impact that these severe cuts to Title VII will have on programs, providers, patients, and communities.

Reauthorization: The Title VII program was due to be reauthorized in the 107th Congress (2002) but four years later Congress still has not taken it up.  The pediatric community is continuing to have ongoing discussions with colleagues in the internal medicine community in anticipation of possible reauthorization in the 109th Congress as well as a broader community that supports the primary care medicine and dentistry provision of the Title VII program.

Resident Hours:  In March 2005, Rep. John Conyers (D-MI) reintroduced the "Patient and Physician Safety and Protection Act of 2005" (H.R. 1228).  The bill establishes specific limits on work hours, allows residents to file anonymous complaints regarding violations, and imposes financial penalties for noncompliance. Specifically, the bill limits postgraduate trainees to 80 hours of work per week and 24 hours of work per shift. They must have at least 10 hours between scheduled shifts, at least one of every 7 days off, and at least one full weekend off per month. The bill also limits on-call responsibilities to no more than every third night.  H.R. 1228 offers whistleblower protections to individuals who report violations to HHS, ACGME or hospital management, and subjects hospitals to penalties of up to $100,000 for violations in each resident training program in any 6-month period.   The bill—which has no cosponsors—has been referred to the House Energy and Commerce Committee's Health subcommittee. A Senate companion bill, S. 1297, was introduced last year by former Senator now Governor Jon Corzine (D-NJ). The senate bill has three cosponsors.

FY 2006 BUDGET/APPROPRIATIONS

On November 17, the House of Representatives—somewhat surprisingly—defeated FY 2006 Labor/HHS appropriations conference report 224 to 209. The following day, the Senate voted to send the bill back to a House-Senate conference committee to reach an acceptable compromise.  While a number of factors contributed to the defeat of the bill in the House, certainly one of the main reasons was the bill's failure to fund critical health and education programs adequately. For example the Maternal and Child Health Block Grant was funded at $700 million a decrease of $24 million from FY 2005.  So, the House and Senate resumed discussion, and on Tuesday, December 13, the House narrowly passed a slightly revised conference agreement, with additional funding for rural health programs and health professions (Title VII) to satisfy some of the 22 House Republicans who voted with all of the Democrats against the initial version.   Because the revised legislation still cut or froze many health and education programs and provided the lowest increase to the NIH, less than 1%, in more than thirty years, Senate passage proved difficult.  Finally, a threat from Senator Arlen Specter (R-PA) to attach the conference report to the FY 2006 Defense Appropriations bill—a must-pass bill—the Senate on December 21 approved the FY 2006 Labor/HHS-Education Appropriations bill by voice vote, clearing it for the President's signature on December 30, 2005—almost three months after the new fiscal year began. 

FY 2007 BUDGET

President Bush released his 2007 budget Feb. 6 with a proposed $13.6 billion in cuts from Medicaid and the State Children's Health Insurance Program over five years. The 2007 budget proposal came just days after the 2006 budget reconciliation bill passed Congress, which significantly cut Medicaid. The president's budget also proposes to eliminate or cut funding for many other child health programs, including Children's Hospitals Graduate Medical Education (GME) program, Title VII health professions training grants, universal newborn hearing screening, Emergency Medical Services for Children (EMSC) program, and the National Children's Study (NCS).

The president's budget is the first step in a months-long process and is used as a blueprint for Congress to decide how to fund programs. The PPC working with other members of the pediatric community will continue to lobby Congress aggressively to sustain and increase funding for child health programs until the process is finished in October. In this election year, there is some hope that congressional members will choose to help children.

HEALTH INSURANCE COVERAGE AND ACCESS TO CARE

Reconciliation FY 2006: The House and Senate passed very different versions of a spending-cuts bill (reconciliation) late last year.  The Senate bill did not hurt children on Medicaid, but the House bill did.  Just before Christmas, the House-Senate conference agreement (reconciling the two versions of the bill) came to a vote.  The House passed it by a vote of 212-206.  The Senate passed it 50-51, with Vice-President Cheney casting the tie-breaking vote.  BUT, for technical reasons, the Senate deleted several provisions, which meant the bill had to go back to the House for an up-or-down vote. On February 1, 2006, he House of Representatives passed the bill by a vote of 216-214, and the president signed it shortly thereafter. 

The legislation will change federal Medicaid law and allow states to offer scaled-back benefit packages for children.  It will also let states charge children in poor families premiums for Medicaid coverage, and fees for prescription drugs and some medical services.  However, the legislation did add as an amendment the Families Opportunity Act (FOA). This program establishes a state option to allow families of children with severe disabilities to purchase Medicaid coverage on a sliding premium scale. However, with cuts to Medicaid, FOA would once again be competing with Medicaid dollars.

While the pediatric community's work at the federal level will continue on this issue, state governments will need to decide if they want to adopt any of these Medicaid options.  Pediatricians will need to persuade their governors and state legislators to reject the options, and protect child health care coverage and services.

With regard to SCHIP, currently, SCHIP is scheduled to be reauthorized in 2007.  Details on the President's proposals related to an early reauthorization have yet to be revealed; however, the pediatric community will monitor this issue closely and will work to protect this program for near poor children and families.

Medicaid Commission: On July 8, Secretary of Health and Human Services Mike Leavitt, announced the members of his Medicaid Commission. It includes 13 voting members and 15 non-voting members with an additional two governors to be added later. The advisory commission is charged with outlining recommendations for Medicaid to achieve $10 billion in reductions in spending growth during the next five years as well as ways to begin meaningful long-term enhancements that can better serve beneficiaries. The Commission, which held its first two meetings in late summer, is chaired by former Tennessee Governor Don Sunquist, and former Maine Governor Angus King serves as the vice chair. Among the non-voting members are AAP immediate past president Carol Berkowitz, MD and James Anderson, president and CEO of Cincinnati Children's Hospital Medical Center.  On September 1, the Commission released its first report to Congress, suggesting ways to realize the $10 billion in savings.  While most of the recommendations did not impact children negatively, there is concern that a proposal to add cost-sharing (co-pays) for prescription drugs could pose a significant burden to pregnant women and families with children. The Commission met again in October of 2005 and late January 2006. The pediatric community is working aggressively with Congress to preserve EPSDT and keep cost-sharing out of the equation. The Medicaid Commission will continue to meet in 2006 with an expected report on December 31, containing longer-term recommendations on the future of the Medicaid program.

MediKids: The MediKids Health Insurance Act of 2005 was reintroduced in the first session of the 109th Congress by Rep. Pete Stark (D-CA) in the House (H.R. 3055), and Sen. John Rockefeller (D-WV) in the Senate (S. 1303). The bill creates a unified health care system that would achieve the pediatric community's goal of health insurance for all children and adolescents regardless of family income.  MediKids would make coverage automatic and promote equity, family responsibility, choice, and uniform benefits.  The House bill currently has 43 cosponsors; the Senate bill has five. 

Kids Come First Act of 2005: In late January 2005, Senator John Kerry (D-MA) introduced the Kids Come First Act of 2005 (S.114). The bill has ten cosponsors. This legislation is an effort to provide affordable health insurance to all children up to 300 percent of the federal poverty level (FPL), with an emphasis on reforms to Medicaid and SCHIP.  Included in the proposal is a "swap" for the states that would provide a 100 percent federal match for all children in the Medicaid mandatory population, in exchange for their expansion of their SCHIP program up to 300 % FPL.   The bill also includes outreach and enrollment efforts that have long been supported by the pediatric community such as: presumptive eligibility; 12-month continuous eligibility; acceptance of self-declaration of income; no waiting lists for children under SCHIP; no assets tests for children; and no 5-year waiting period for legal immigrant children (previously supported Immigrant Children's Health Insurance Act legislation).  Importantly, the legislation also provides for an increase in pediatric provider payments under Medicaid. 

Association Health Plans (AHPs): The Small Business Health Fairness Act has been reintroduced this Congress in the form of S.406/H.R.525. The House bill passed in late July 2005. This legislation allows association health plans - groups of small employers that band together and purchase health coverage - to be exempt from state regulation, oversight and mandates. Many child and adolescent health organizations opposed legislation in the 108th Congress, as it threatened the progress that has been made in ensuring that insured children and adolescents have appropriate access to preventive and well-child and adolescent care because families who purchase health coverage from these plans would no longer be protected by state laws.  The PPC will continue to work with the AAP and other groups to urge Congress to consider legislative solutions for small businesses that will provide affordable quality health insurance to families.

Genetic Information Nondiscrimination Act of 2005: In February 2005, the Senate by a vote of 98–0 passed the "Genetic Information Nondiscrimination Act of 2005" (S. 306/H.R. 1227).  This legislation would prohibit health discrimination on the basis of genetic information or services.  The bill prevents employers and health insurers from discriminating against a person based on their predisposition to a disease.  Specifically, the bill would bar employers from using individuals' genetic information when making a hiring, firing, job placement or promotion decision.  The bill would bar health insurers from underwriting based on genetic information. The bill would also establish privacy protections for genetic information. In the House, three committees have jurisdiction over the issue, the Education and Workforce, Energy and Commerce, and Ways and Means Committees. This shared jurisdiction will make House passage of the bill, which has 166 cosponsors, a bit more challenging.

EMERGENCY MEDICAL SERVICES FOR CHILDREN (EMSC):

The President's FY 2007 budget once again proposed eliminating funding for the EMSC program. The PPC joined the AAP to vigorously and successfully oppose the elimination of the program in FY 2006 and will do the same in FY 2007.  The final FY 2006 appropriation for EMSC was $20 million.

Reauthorization: The Senate has introduced legislation to reauthorize the EMSC program for five years. S.760, the Wakefield Act, when reauthorized would allow the EMSC program to carry out its existing initiatives and address gaps in care through its survey and planning process.  The APS, SPR, and AMSPDC were among 32 organizations that signed a letter to the Senate in early July 2005 supporting the Wakefield Act.

IMMUNIZATIONS

Vaccine Programs/Appropriations: The final House and Senate conference agreement included $461.4 million for immunization assistance to states and localities under the section 317 program, $4.9 million for vaccine tracking and $58.5 million for prevention activities (including $1.49 million for expanded vaccine safety research) for a total of $524.9 million. In addition the Vaccines for Children (VFC) program, which is funded through Medicaid, includes $1.5 billion in vaccine purchase and distribution support for FY 2006.

The President's FY 2007 budget included $324.9 million for the section 317 immunization programs, $4.8 million for vaccine tracking, and $77.5 million for prevention activities, for a total of $407.3 million for all immunization programs.  This reflects a proposed transfer of $100 million from Section 317 to the Vaccines for Children program. This proposal may prove to be problematic because it could leave the VFC program vulnerable to modifications and mischief that will not help children and adolescents. The VFC mandatory program, at $2.1 billion, received increased funding over FY 2006 to cover the newly recommended memingococcal conjugate and hepatitis A vaccines.  Also included in the President's budget is a proposed legislative change to the VFC to allow underinsured children to receive VFC vaccines at public health clinics. 

Thimerosal Legislation: In July 2005, Sen. Chuck Hagel (R-NE) introduced a Senate companion, S. 1422, to a bill introduced in the House by Representatives Dave Weldon (R-FL) and Carolyn Maloney (D-NY), H.R. 881, to amend the Federal Food, Drug, and Cosmetic Act to reduce human exposure to mercury through vaccines. The Mercury Free Vaccines Act of 2005 is similar to legislation introduced in the 108th Congress. Both H.R. 881 (with 72 cosponsors) and S. 1422 (no cosponsors) are awaiting committee and floor action.  As proposed in the bill, "a vaccine is a banned mercury-containing vaccine under this section if 1 dose of the vaccine contains 1 or more micrograms of mercury in any form." There is an exception if the Secretary of HHS makes a declaration of a public health emergency. In addition, the legislation also includes a restriction on administration of mercury-containing vaccines to children and pregnant women manufactured for use in the 2006 - 2007 influenza season. There are several effective dates including: July 1, 2006, the vaccine shall not be administered to any child under the age of 3 years old; and if the vaccine contains thimerosal, the vaccine shall not be administered to any pregnant woman; and effective July 1, 2007, the vaccine shall not be administered to any child under the age of 6 years old. There is also a public health emergency exception in this provision. In the past two years, over 20 states have introduced legislation banning thimerosal in vaccines and six states have passed legislation. Based on the scientific data, including several IOM reports, the pediatric community joined by other organizations such as the Sabin Vaccine Institute, Every Child By Two, and others continues to oppose this legislation. Several states are also introducing anti-thimerosal legislation. Local pediatricians are working extremely hard to oppose passage of these state-based proposals.

Vaccine Supply: Senators Evan Bayh (D-IN), Larry Craig (R-WY) and Mary Landrieu (D-LA) have reintroduced legislation (S.375) to address issues surrounding the manufacture, distribution, and supply of influenza vaccine, as has Sen. Hillary Rodham Clinton (D-NY), S. 1828.   Also Senators Mike DeWine (R-OH) and Hillary Rodham Clinton (D-NY) reintroduced their bill (S.226) from last year that requires the Secretary of HHS to develop a plan for the purchase, storage, and rotation of a six-month supply of vaccines routinely recommended for children and adults. The PPC will continue to monitor any such efforts.

PAS ANNUAL MEETING

STATE OF THE ART PLENARY SESSION: Sunday, April 30, 2006, the Public Policy Council and the Ambulatory Pediatric Association's Public Policy Advocacy Committee will jointly sponsor a session entitled New Resident Work Hours and Quality Care—Synergistic or Antagonistic? Confirmed speakers include: David Leach, MD, Executive Director of ACGME, Doug Jones, MD, representing the Residency Review Committee for Pediatrics, and Ted Sectish, MD, pediatric program director at Stanford University Medical School. Richard Behrman, MD Executive Chair, Pediatric Education Steering Committee, Federation of Pediatric Organizations will moderate this session.

LEGISLATIVE BREAKFAST: Monday, May 1, 2006, 7:00am, sponsored by the Public Policy Council for all attendees of the PAS meeting, is entitled "Medicaid "Reform:" Can we Preserve our Children's Safety Net?" with a presentation by Medicaid Commission member Carol Berkowitz, MD, the 2004-05 AAP president and former APA president.

SPECIAL SYMPOSIUM: Monday, May 1, from 12:15pm–1:15pm, The National Children's Study: Status and Future Plans. The panel presenters will discuss the current budgetary outlook, status of the study, options to implement the study and respond to questions from the audience. The panelists include: Duane Alexander, Director, NICHD/NIH, Peter C. Scheidt, Director, National Children's Study, NICHD/NIH, Alan R. Fleischman, Chair, National Children's Study Federal Advisory Committee, New York Academy of Medicine and NIH, and David Schonfeld, Chair, AAP Committee on Research and Member, National Children's Study Federal Advisory Committee. Elena Fuentes-Afflick, University of California, San Francisco, a member of the Public Policy Council will chair this session.

Please note that the APS-SPR website (www.aps-spr.org) has posted the PowerPoint presentations from the 2005 Public Policy Council/APA State of the Art Public Policy Plenary session, "Clinical Trial Registries: Challenges and Opportunities as well as the Legislative Breakfast on Stem Cell Research."
 

CONSIDER JOINING THE AAP FEDERAL ADVOCACY ACTION NETWORK (FAAN)

The American Academy of Pediatrics invites you to become a member of the Federal Advocacy Action Network (FAAN).  Coordinated by the AAP Department of Federal Affairs, FAAN is a network of AAP members who help support federal legislative and regulatory activities from their position as constituents.  FAAN members play an important role in passing federal legislation that benefits children and pediatricians.

The AAP Department of Federal Affairs gives FAAN members the information and tools you need to persuade your legislators.  For example, each month via e-mail you will receive FAAN MAIL with updates on AAP legislative priorities in Washington, D.C.  We will keep you up to date with timely information with "THIS JUST IN."  You will also receive "SPECIAL ALERTS" when immediate action is needed by you on a key issue. 

To join FAAN go to the Members Only Channel of the AAP web site, www.aap.org/moc, and click on Federal Affairs, then click on Join FAAN and follow the easy directions.   The Members Only Channel has some great tools to make your advocacy work easy.  Find the names of Congressional representatives, contact legislators via e-mail, read about daily congressional activity, view actual bills and use the media contact list.

If you are already a member of FAAN, thank you!  If you are interested in joining FAAN and have questions, please contact the AAP Department of Federal Affairs at 800/336-5475.  Together we can make a real difference for children and pediatricians!
 

 


HOW TO CONTACT YOUR MEMBER OF CONGRESS:

Write: The letter remains the most popular choice of communication with a congressional office.  If you decide to write a letter, remember to be courteous, to the point, and include key information and examples to support your position.  Address only one issue in each letter and, if possible, keep the length to one page.

To a Senator:

To a Representative:

The Honorable (name)

The Honorable (name)

United States Senate

United States House of Representatives

Washington, DC   20515

Washington, DC   20515

Dear Senator: 

Dear Representative: 

Fax: Currently it is best to fax your letter to Congress.  Fax numbers are available through the Capitol Hill Switchboard (202) 224-3121, or you can look up your members of Congress on "Thomas" the official website for Congress, available at http://thomas.loc.gov/, by going to "House Directory" or "Senate Directory" from the front page. 

Call: You can contact your Senator's and Representative's offices by calling the U.S. Capitol Hill Switchboard at (202) 224-3121.  If you do not know who your Representative is, the switchboard operator will be able to direct you to the proper office. Ask to speak to the staff member who works on health care issues. Be prepared to leave a very short message as well as your name and address.  You can also call your legislators in their home districts; information about local offices is available on the American Academy of Pediatrics' Members Only website, www.aap.org/moc.

E-mail: All of members of Congress now have e-mail addresses, but there is no set format for them. On some members web sites there is a mechanism to directly email most notably if you are a constituent.  We suggest calling the congressional office to get an accurate e-mail address or visit www.aap.org/moc the Members Only website of the AAP.

HOW TO CONTACT THE PRESIDENT: 

Write:
The Honorable George W. Bush
The White House
1600 Pennsylvania Avenue
Washington, DC 20500

Call: 202-456-1414
Fax: 202-456-2461
Email: president@whitehouse.gov 


2006 CONGRESSIONAL CALENDAR  

March 20–24 St. Patrick's Day Recess
April 10–21 Easter Recess
May 29–June2 Memorial Day Recess
July 3–7 July 4th Recess
August 7–September 4 August Recess

October 6

Target Adjournment
November 7 Election Day 
(435 members of the House of Representatives and 1/3 of the Senate)

Additional information and resource material on these and other pediatric and child health issues are available from:

Karen M. Hendricks, JD
Washington Coordinator
KHendricks@aap.org

Kristin Butterfield, MA
Legislative Assistant
KButterfield@aap.org

Public Policy Council
c/o American Academy of Pediatrics
601 13th Street, NW
Suite 400 North
Washington, DC  20005
ph: 800/336-5475 or 202/347-8600
Fax: 202/393-6137


Public Policy Council Members:

APS

Myron Genel, MD
Jimmy Simon, MD

SPR

Christine Gleason, MD
Elena Fuentes-Afflick, MD, MPH

AMSPDC

Russell Chesney, MD
Jon Abramson, MD


Report Submitted By:

Myron Genel, MD, Chairman
Karen M. Hendricks, JD, Washington Coordinator
Kristin Butterfield, MA, Legislative Assistant

March 1, 2006

   
Copyright:  All information contained in this Website is the property of the American Pediatric Society and the Society for Pediatric Research unless otherwise noted.
Duplication of any information contained herein for reasons other than personal use requires the expressed written permission of APS / SPR.
Last Updated: 10/02/2006
Staff only: Click here to logon to webmail.