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American Pediatric Society & Society for Pediatric Research Public Policy Council |
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January 2006 Legislative Report |
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It
was an end to the Congressional session 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 FY 2006 appropriations bills have taken big hits,
jeopardizing the health care safety net for children on which so
many families depend. This is further complicated by the
spending cuts to the Medicaid program that the House of
Representatives must resolve when they return at the end of
January for the second session of the 109th Congress. We must
now set our sights on and direct our energies toward FY 2007.
It is time to really make the case with Congress—to
make it personal. How these drastic cuts will harm children.
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. We
would like to take this moment to thank all our advocates for
your tireless work this year on many fronts.
Your stamina and willingness to keep contacting
legislators at each twist and turn is so appreciated.
Without your involvement the cuts to Medicaid would have
been much higher, the discretionary programs slated for
near-elimination more numerous. Thank you. We
look forward to working with you in 2006 as we will be looking
for those personal, local stories of impact. 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: National
Institute of Health (NIH)/Appropriations: Through its
coalition work with the Ad Hoc Group for Medical Research
Funding, 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,
will likely be wiped out by a provision in the Defense
Appropriations bill—also approved in the final hours of the
Congressional session—that makes a 1% across-the-board cut to
all non-defense spending. Through
its work with the Ad Hoc Group the PPC will continue to seek
adequate and appropriate increases in funding for the NIH. We
will also continue to support an adequate funding level for the
NICHD of $1.35 billion including sufficient funding for the
National Children's Study. During
early consideration of the FY 2006 appropriations bill in the
House, several amendments were offered and some accepted that
would have targeted specific grants within NIH for de-funding.
Offered by Representatives Ted Poe (R-TX) and Randy
Neugebauer (R-TX), the amendments would have cut funding for the
NICHD "Milk Matters" campaign and for two on-going
grant projects funded through NIMH respectively. This is the
third attempt in as many years that some members of the House of
Representatives have raised the prospect of threatening to
rescind funding for certain NIH grants they find
"objectionable" - an act that would seriously
undermine the peer-review process.
The Poe amendment was ultimately withdrawn. The House
adopted the Neugebauer amendments by voice vote, but House and
Senate conferees agreed to remove language in from the
conference agreement. NIH
Reauthorization: There has been a good deal of discussion in
the last year 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. 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, despite funding
concerns. Sufficient
funds have 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. 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:
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 36 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 final FY 2006 Labor-HHS-Education appropriations conference
agreement provided - level-funding AHRQ at $319 million for FY
2006. These funds will be allocated via transfers from other
public health service agencies.
The conference report designates not more than $50
million for health information technology, and $15 million for
clinical effectiveness research. 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:
NIH
Conflict of Interest Regulations: In a Senate hearing held in
April, key Senators indicated that some adjustments must be made
in the conflict of interest regulations that NIH Director Elias
Zerhouni, MD announced in February. 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 announced in February has moved to 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. NIH
Public Access: On February 3rd, 2005, NIH director Elias
Zerhouni, MD released the agency's revised policy on public
access. The policy requests—but does not require— NIH
grantees to send to NIH research manuscripts that have been
accepted for publication in peer reviewed journals. NIH's
National Library of Medicine will compile an archive of these
manuscripts and will post them on PubMed Central within the
period of time specified by the author. The
policy, which is now in effect, is similar to the proposed
version published in the Federal Register on September 17, 2004,
although the final policy allows authors themselves to specify
when their manuscripts should be made publicly available (up to
12 months) after publication. Under the original proposal, all
author manuscripts were to be posted six months after
publication. 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 PPC staff is optimistic, about the
development of legislation in 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. GME
Financing in Children's Hospitals: The Labor-HHS-Education
conference agreement provided $300 million for the CHGME
program. Plans are
now well underway for the FY 2007 funding recommendations that
will need to take into consideration the 1% across-the-board cut
to all discretionary programs (except the Veterans
Administration) including CHGME. Reauthorization:
In July 2005 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. 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 2006 proposed budget removed
all funding for primary care, interdisciplinary community
projects, and public health. The President proposed only $11
million for the Title VII program.
Unfortunately, the House followed suit with major cuts to
the Title VII program, providing only $47 million for all of
Title VII—in the form of diversity programs such Scholarships
for Disadvantaged Students. Training
in Primary Care and Dentistry was eliminated.
The Senate provided some respite, restoring level-funding
to most Title VII programs, with the notable exception of
Primary Care Training, which received a $1.2 million increase
over FY 2005—to $90 million, thanks in large part to the
advocacy efforts of the pediatric and child health community. When
the House and Senate came together in conference to work out
differences in the spending bill, conferees chose to take the
lower House number for the Health Professions programs.
However, in a surprising turn of events, the conference
agreement was defeated in the House at the hands of several
Members who objected to—among other things— inadequate
funding for rural health and Health Professions programs.
With the Senate also pushing for increased funding,
conferees added $52.7 million to the Title VII programs,
bringing the total to $146.7 million.
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. 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.
Additionally, the Association of American Medical Colleges (AAMC)
assembled a committee of physicians to review the mission and
effectiveness of the Title VII program, and make legislative
recommendations for reauthorization.
Tom DeWitt, MD, former chair of the AAP Committee on
Pediatric Education, represented the pediatric community at the
committee's inaugural meeting in January 2005, and presented
several recommendations for the program, including supporting
primary care and interdisciplinary training, and increasing the
number of primary care professionals from underrepresented
minority groups. The group issued its six recommendations in
June, and has begun meeting with Congressional staff in the
coming weeks to see how best to proceed with releasing the
report to Congress. The AAMC is interested in outside
organizations endorsing their recommendations which includes
proposing a new structure for Section 747, in which grants are
preferentially awarded to applicants who enter into a formal
relationship and submit a joint application with a Federally
Qualified Health Center (FQHC), an FQHC Look-Alike, Area Health
Education Center (AHEC), or a clinic located in a Health
Professions Shortage Area (HPSA) or Medically Underserved Area (MUA)
or a clinical practice setting in which at least 40 percent of
its patients are either uninsured or supported by Medicaid. In
the months ahead the PPC will review this and the other proposed
recommendations. 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 on June 23 by
Senator Jon Corzine (D-NJ) and has three cosponsors. FY 2006 BUDGET/APPROPRIATIONS At
the end of June, the House of Representatives approved the FY
2006 Labor/HHS/Education spending bill (H.R.3010), adopting the
funding levels recommended by the House Appropriations Committee
a week earlier. The large number of programs that were cut or
received essentially level funding is a reflection of the
inadequate budget allocation the Labor/HHS/Education
subcommittee received at the beginning of the year. Among the "highlights" in the House bill were
several programs that received level funding (a relative good
thing in this current environment) or even slight increases:
Emergency Services for Children (EMSC), Children's
Hospital GME, NIH, and AHRQ.
On
July 14, the Senate Labor/HHS/Education Committee reported its
FY 2006 bill, which contained—thanks to an accounting
"gimmick" that creates an additional, albeit
temporary, pot of money from which to draw—some increases
above the House-passed bill. NIH, EMSC, MCH, and AHRQ all saw
some funding increases in the Senate bill.
One program of note was Title VII, which received level
funding, with the notable exception of Primary Care Training,
which received a $1.2 million increase over FY 2005—to $90
million. In
the early Fall, Congress had more than a full plate—dealing
with the preparation for (and then withdrawal of) confirmation
hearings of then-Supreme Court nominee Harriet Miers, Hurricane
relief legislation, hearings on the slow Hurricane relief
response, and of course the war in Iraq.
As a result, the end of the fiscal year came without
completion of the required annual appropriations bills.
With the government operating under a continuing
resolution (CR), which funds the federal government at current
fiscal year (2005) levels, Congress continued its
often-contentious work on the remaining appropriations bills,
including a conference agreement on Labor/HHS, well into the
holiday season. 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. HEALTH
INSURANCE COVERAGE AND ACCESS TO CARE President's
FY06 Budget Proposal for Medicaid/ SCHIP:
In April, Congress passed the FY 2006 concurrent budget
resolution. However,
the agreement that was reached allowing the budget resolution to
go to the floor of the House and Senate included at least $10
billion in cuts to the Medicaid program beginning in 2007.
While the proposed $20 billion in cuts to the Medicaid
program that were initially passed by the House of
Representatives were successfully brought down to $10 billion,
these cuts to the program were of grave concern. The
PPC, AAP, NACHRI, and a broad coalition of child health
advocates were immediately and deeply engaged throughout the
summer and fall as the committees of jurisdiction—the House
Energy and Commerce Committee and the Senate Finance Committee—developed
reform legislation to address the cost-savings. Ultimately,
after the Committee work was done, the House and Senate produced
very different budget reconciliation bills to cut federal
spending. The Senate passed a spending-cut bill that did NOT
reduce benefits for children on Medicaid.
In fact, the Senate bill included an AAP-supported
provision, the Family Opportunity Act, which allows families to
"buy into" Medicaid for their severely disabled
children, even if their incomes would otherwise be too high to
qualify. The
House of Representatives, however, passed a bill that would be
quite harmful to children.
It would allow states to impose significant cost-sharing
(premiums, deductibles and co-payments) on services and
medications for children and pregnant women, and would eliminate
the EPSDT guarantee for many children. The
conference agreement that was crafted in an attempt to hammer
out the differences between the House and Senate included most
of the detrimental provisions of the House bill, and some
provisions that were even worse.
In the early hours of December 19, the House passed 212–206
the budget reconciliation bill, approving $4.8 billion in net
savings from Medicaid over five years and giving states greater
flexibility to require co-payments and premiums of beneficiaries
and limit benefits. The
Senate took up the conference report on December 21. Although it passed by a vote of 51–50 (with Vice President
Cheney casting the deciding vote), Senate Democrats used
parliamentary tactics to slightly change the bill and so the
House of Representatives is required to vote on the bill again
before it can be sent to President Bush.
The PPC, AAP and others will work with moderate
Republicans in the House to once again attempt the bill's defeat
when the House returns to work on January 31. Please stay tuned
for further developments and calls to action. With
regard to SCHIP, the President's FY 2006 budget outline also
included a proposal to move up the reauthorization of 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 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:
On June 23, 2005, The MediKids Health Insurance Act of 2005 was
reintroduced in 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.
Family Opportunity Act (FOA): Senators Charles Grassley (R-IA) and Edward Kennedy (D-MA) and Rep. Pete Sessions (R-TX) have reintroduced the pediatric community supported Dylan Lee James Family Opportunity Act of 2005 (S. 183/H.R. 1443). This program establishes a state option to allow families of children with severe disabilities to purchase Medicaid coverage on a sliding premium scale. The House bill has 56 cosponsors; the Senate bill has 55. Several legislative options were offered during the first session of the 109th Congress for FOA, and ultimately it was added to the budget reconciliation bill containing the Medicaid cuts. It is pending final action by the House of Representatives. However, with slated cuts in Medicaid, FOA would once again be competing with Medicaid for dollars. And, even though FOA is so strongly supported by the PPC and AAP, the cuts to EPSDT and the imposition of copays for children are too detrimental and outweigh the "sweetener" of FOA being included in the reconciliation bill. 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 prior to the
August congressional recess. 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 153 cosponsors, a bit more challenging. EMERGENCY
MEDICAL SERVICES FOR CHILDREN (EMSC): Emergency
Medical Services for Children (EMSC)/Appropriations: The President's FY 2006 budget proposed eliminating funding
for the EMSC program for FY 2006.
The PPC joined the AAP to vigorously and successfully
oppose the elimination of the program.
The final FY 2006 Labor/HHS bill took the Senate number—$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 supporting the Wakefield Act. 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. 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. 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. On
Sunday, April 30, 2006, the Public Policy Council and the
Ambulatory Pediatric Association's Public Policy Advocacy
Committee will jointly sponsor a state of the art plenary
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. The
Monday, May 1, 2006, 7:00 a.m. Legislative Breakfast, 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, former APA president and
the 2004-2005 AAP president. Also
on Monday, May 1, tentatively scheduled for 12:00noon, there
will be an "Update and Progress Report on the National
Children's Study," provided by Alan Fleischman, MD, Ethics
Advisor, National Children's Study, NICHD/NIH and others from
NICHD. Elena Fuentes-Afflick, MD, MPH, 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.
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: Call: 202-456-1414
Additional information and resource material on these and other pediatric and child health issues are available from:
Public Policy Council Members:
Report Submitted By:
January 1, 2006 |
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