Disparities in Health Care - AST Meets with Congressional Leaders and Administration Officials to Address Critical Problems

On July 7th, 2004, AST's President, Dr. Jay Fishman, Public Policy Committee Chairman, Dr. Jeffrey Crippin, and Diversity and Minority Affairs Committee, Dr. Robert Higgins, joined Congressional leaders and Department of Health and Human Services decision-makers in the Library of Congress for the Minority Health Quality Forum. The purpose of the meeting was to bring together key stakeholders for a discussion and examination of the challenges and possible solutions to address the current gap in our nation's health care system. AST leaders were able to discuss a variety of health care disparity challenges with Senate Majority Leader Bill Frist (R-TN), HHS Deputy Secretary, Claude Allen, NIH Minority Health Center Director, Dr. John Ruffin, and HHSAgency for Healthcare Research and Quality (AHRQ) Director, Dr. Carolyn Clancy.

In January of 2004, Senate leaders approached AST regarding the endorsement of S. 2091, the “Closing the Health Care Gap Act of 2004.” AST provided input into the crafting of S. 2091 and was one of the original organizations to endorse the legislation. The bill seeks to:
• Expand access to quality health for disparity populations, including through patient navigator systems, improved linguistic access, health literacy and prevention efforts, outreach, and expanded access to coverage;
• Strengthen national coordination to reduce and eliminate disparities;
• Increase the diversity of health professionals and promote cultural competence research and education; and
• Expand research to identify sources of health disparities and to assess intervention strategies.

On July 26th, 2004, AST’s Public Policy Chair, Dr. Jeff Crippin, and Immediate Past President, Dr. Michael Lucey, met with the Director of the HHSAgency for Healthcare Research and Quality (AHRQ), Dr. Carolyn Clancy, to further discuss AHRQ’s research in the area of minority healthcare and disparities. AST’s leadership, Public Policy Committee, and Diversity and Minority Affairs Committee, will continue to work closely with Congress and HHS to address these important issues.

Back to Top

Access to Transplantation - AST Responds to New Inquiries

In response to increased inquiries from Capitol Hill and the Administration, AST crafted the following statement regarding the issue of access to transplantation:

“Transplantation is an accepted therapy for patients with complications of organ failure and dysfunction. The American Society of Transplantation (AST) enthusiastically supports equal access to transplantation for all patients with organ failure and/or dysfunction. While recognizing that selection for transplantation is the prerogative of the transplant centers, the AST is opposed to restricting access solely on the basis of race, gender, sexual orientation, age, disability or the ability to pay. The AST strongly supports federal and state programs improving access to transplants, including expansion of Medicare benefits to patients with organ failure, similar to the End Stage Renal Disease program for patients with kidney failure.”

The AST has added this statement to its portfolio of public policy “Position Statements & Key Messages.” These statements are used to further educate and inform targeted leaders and staff in Congress and the Administration regarding the field of solid organ transplantation. The society’s issue papers address many of the most commonly asked questions by federal decision-makers. The AST’s Position Statements & Key Messages may be viewed on the society’s website www.a-s-t.org.

Back to Top

HHS Re-examines the Issue of Obesity - AST Continues to Support Key Initiatives to Combat Obesity

On July 16, 2004, HHS Secretary Tommy Thompson announced that the Medicare Program will consider reimbursement for items and services that will improve the health outcomes of obese beneficiaries. In a change of previous policy, the Medicare program will begin to decide on a “case-by-case basis” whether obesity should be considered a disease for coverage purposes. Secretary Thompson indicated that language stating obesity is not an illness has been removed from the Medicare Coverage Issues Manual, thus paving the way for possible coverage of anti-obesity procedures. Based on this new policy, the Centers for Medicare and Medicaid Services (CMS) has announced that individuals seeking modification are now encouraged to request national coverage determinations on specific treatments. According to HHS, this could include coverage of surgery, and diet and exercise counseling. During the unveiling of this new policy, HHS Secretary Thompson stated, “Medicare will be able to review scientific evidence in order to determine which interventions improve health outcomes for seniors and disabled Americans who are obese and its many associated medical conditions.”

AST has strongly supported and worked closely with Congressional leaders on a variety of legislative proposals to address the growing epidemic of obesity in America, including the “Improved Nutrition and Physical Activity Act (IMPACT),” introduced by Senators Frist (R-TN), Dodd (D-CT) and Bingaman (D-NM), as well as House Members Mary Bono (R-CA) and Kay Granger (R-TX). The Senate version of the IMPACT legislation was passed and approved in late 2003. The Society was specifically cited and thanked on the Senate floor for its support and work in moving the legislation forward. The House IMPACT bill still awaits final action. In addition to legislative efforts, AST has worked directly with the HHS Office of the Secretary to bring greater visibility to this very important issue area.

Back to Top

AST Seeks Full Funding for New Organ Donation and Recovery Improvement Law

On April 4, 2004, President Bush signed into law, The Organ Donation and Recovery Improvement Act. This legislation has been the number one public policy agenda item for the Society during the last two sessions of Congress. AST first addressed this initiative in 1999, when the public policy committee worked with Senators Kennedy (D-MA) and Frist (R-TN) to craft bipartisan legislation to reauthorize key elements of the National Organ Transplant Act. Despite a variety of road blocks, AST was able to work with House and Senate leaders, as well as other transplant stakeholders/organizations to garner enough support to finally get this important legislation to the President's desk. The bill seeks to provide new resources to increase donation, including providing reimbursement of the travel and subsistence costs associated with living donation, providing greater resources to states to expand their public education and outreach effort, and awarding grants to coordinate organ donation activities of eligible hospitals and organ procurement organizations.

Now that the law has been enacted, the Society has focused significant efforts on securing funding from Congress to implement the various programs, policies and new authorizations contained in the Act. The Organ Donation and Recovery Improvement Act authorizes $25 million in new funding. If fully appropriated by Congress, the new law would be able to provide: 1) $23 million for the Health Resources and Services Administration's (HRSA) Division of Transplantation (DOT) to promote organ donation education and awareness, provide grants for travel and living expense reimbursement for living donors, and grants for hospital organ coordinators; and 2)$2 million for the Agency for Health Care Research and Quality (AHRQ) to study and develop scientific evidence in support of efforts to increase organ donation and improve the recovery, preservation, and transportation of organs.

Back to Top

AST Convenes First-Ever National Conference on the "Economics of Transplantation"

On April 16th, the AST sponsored the first ever national conference on the Economics of Transplantation. This conference brought together experts from the fields of transplantation, economics, industry and government, in order to present and discuss the economic issues of solid organ transplantation. The meeting included guest speakers such as Craig Burton, the Department of Health and Human Services' Deputy Assistant Secretary for Legislation.

Burton joins a long list of distinguished guest speakers, including HHS Secretary Tommy Thompson, Senate Majority Leader Bill Frist (R-TN) and Dr. Anthony Fauci, director, NIH-NIAID, who have addressed national AST policy forums.
The Deputy Assistant Secretary provided an overview of the Department’s initiatives in the area of national organ donation public policy, which the Department strongly supports by raising visibility of organ donation, giving the gift-of-life and increasing the number of available organs.

Back to Top

AST Attends Senate Republican Conference's Minority Health Quality Forum

On June 7, 2004, AST public policy Chair, Dr. Jeffrey Crippin, and the Society's Director of Government Relations, William Applegate, joined Senate Majority Leader Bill Frist (R-TN), Senator Rick Santorum (R-PA) and other key Republican leaders in the US Senate to establish a dialogue among leading medical associations, public hospitals, community health centers, and outreach organizations about the disparities that exist for minority ethnic groups.

The meeting included most of the Republican Chairs and active health care champions serving on Senate Committees with jurisdiction over health care related issues. Specific focus areas addressed during the meeting included:
• Minority health care quality;
• Minority health research;
• Preventive care;
• Chronic care models;
• Cultural fluency; and
• Patient navigators.

Key presenters and speakers included Claude Allen, deputy Secretary of HHS, Dr. Carolyn Clancy, Director of the Agency for Health Care Research and Quality (AHRQ), Dr. John Ruffin, NIH National Center on Minority Health and Health Disparities, and Dr. Julie Gerberding, director of the Centers for Disease Control.
Earlier this year, AST worked closely with Senate Majority Leader Frist to develop and support the "Closing the Health Care Gap Act of 2004."

Back to Top

Society Provides Expertise to the Office of the HHS Secretary and Broader Department Officials on Issue of Generic Drugs and Immunosuppression

At the request of the Office of the Secretary of the Department of Health and Human Services (HHS), AST's Past President and former Chair of the Society's public policy committee, Dr. William Harmon, traveled to the HHS headquarters in Washington, DC, on March 5, 2004, to meet with a variety of key HHS Department officials on the issue of generic drugs and immunosuppression. AST was asked by the General Counsel of HHS to provide the Department with an overview of the AST's findings from its past Consensus Conference on generic drugs and the Society's white paper that was developed following the conference.

The HHS meeting included key political appointees and officials from the:
• Office of the Secretary of HHS;
• Centers for Medicare and Medicaid Services;
• Health Resources and Services Administration;
• Food and Drug Administration;
• HHS Assistant Secretary for Planning and Evaluation; and
• National Institutes of Health - NIAID.

Back to Top

Public Policy Committee Meets on Capitol Hill to Kick-Off the Second Session of the 108th Congress

On February 23 & 24, 2004, the AST public policy committee met in Washington, DC to kick-off the Second Session of the 108th Congress. More than a dozen members of the Society's public policy committee traveled to the nation's capitol to meet with key Congressional leaders and other transplantation stakeholder organizations.
Given that the Congress had just reconvened to finish the second half of this legislative session, the Society felt it was very important to meet with and coordinate government relations efforts with other stakeholder organization's that share many of the same pubic policy goals as AST. These outreach meetings included discussions with the Association of Organ Procurement Organizations (AOPO), National Kidney Foundation (NKF), and the Texas Transplantation Society (TTS).

In addition to strategy meetings with the organ transplantation community, the public policy committee hosted a luncheon discussion with the Legislative Director to Congressman Jay Inslee (WA), sponsor of organ donor coordinator legislation, and the Senior Health Policy Aide to Congresswoman Diana DeGette (CO), Co-Chair of the Congressional Diabetes Caucus and a very active member of the House Energy and Commerce Subcommittee on Health.

Back to Top

AST Works with Congressional Leaders to Introduce Health Disparity Legislation - "Closing the Health Care Gap Act"

During the first months of the new year, AST was approached by a bi-partisan team of Congressional leaders to assist in reviewing a legislative proposal to address health disparity issues. The Society worked with the offices of Senate Majority Leader Bill Frist (R-TN) and Senator Mary Landrieu (D-LA) to support the introduction of the, "Closing the Health Care Gap Act." The legislation was introduced on February 12, 2004. The Society was one of the very first organizations to endorse the legislation.

This important bill seeks to reduce and eliminate health disparities for racial and ethnic minorities and other underserved populations. The "Closing the Health Care Gap Act" builds on successful legislation authored by Frist and others, the "Minority Health and Health Disparities Research Education Act," which was signed into law in November of 2000. The new bill seeks to improve the overall quality of care, expand access to care, enhance research opportunities, and foster innovative outreach programs to address health care disparities.

Back to Top

Society Continues to Keep Pressure on Congress to Pass "Organ Donation and Recovery Improvement Act"

Since late November, 2003, the AST has worked aggressively to garner support for final action by the US House and Senate to send S. 573 & H.R. 399, the "Organ Donation and Recovery Improvement Act," to the White House for the President's signature and enactment into law. As reported in the last AST Newsletter, the Senate passed its version of this important legislation on November 21, 2004. The House had acted earlier on its organ donation bill and passed the legislation on March 12, 2003. On Monday, April 5, 2004, President Bush signed the legislation. The Society has worked with Congressional leaders for more than two and a half Congressional sessions to develop, garner support and advance this legislation.

Back to Top

AST Public Policy Committee Travels to Capitol Hill As the Senate Completes Action on Organ Donation Legislation

The American Society of Transplantation (AST) public policy committee recently met with more than a dozen targeted Congressional offices, the Office of the Secretary of the Department of Health and Human Services (HHS), the HHS Secretary’s Advisory Committee on Organ Transplantation (ACOT), and the Health Resources & Services Administration – Division on Transplantation (HRSA-DOT).

On December 11th & 12th, the AST public policy committee traveled to Capitol Hill and the headquarters of the Department of Health and Human Services to strongly support and further discuss the recent passage of key organ transplantation legislation, S. 573, Organ Donation and Recovery Improvement Act, with Congressional and Bush Administration officials. Given that the Senate and House have now passed this important legislation, it is likely to reach the President’s desk in the first few months of the New Year. The passage and enactment of the Organ Donation and Recovery Improvement Act was the number one legislative priority for the AST public policy committee in 2003.

During meetings in Washington, DC, the AST public policy committee also focused attention on the progress of a variety of other key issues with targeted Congressional offices and the Administration, including: medical research, the uninsured, medical malpractice reform, pediatrics, etc. The AST public policy committee will return to Capitol Hill in late February 2004.

Back to Top

AST Advocacy for NIH

In addition to transplant authorizing legislation, the AST is also focusing attention on the critical issue of support for medical research at the National Institutes of Health (NIH). Although Congress was successful in doubling the NIH budget over the last five years, it is reported that the Bush Administration will seek to hold the FY 2005 budget increase for NIH to no more than 2.5 percent over the FY 2004-appropriated level of $27.98 billion.
On January 20, 2004, President Bush stated during his State of the Union Speech, “In two weeks, I will send you a budget that funds the war, protects the homeland, and meets important domestic needs, while limiting the growth in discretionary spending to less than four percent.” The AST leadership and public policy committee will be working diligently with Members of Congress, NIH, other health care associations, and stakeholders in the research community to strongly urge the Administration to provide the important resources and tools necessary for medical research to continue to move forward in our nation. The Society will be initiating a strong grassroots initiative to harness and communicate the concerns of our members to federal decision-makers as the FY 2005 appropriations process moves forward.

Back to Top

AST to Examine the Economics of Organ Transplantation

On Friday, April 16, 2004, the American Society of Transplantation (AST) is convening a national meeting in St. Louis, Missouri, to examine the economics of organ transplantation. The meeting is being held at the Eric P. Newman Educational Center, Washington University School of Medicine, St. Louis, MO. The goals of the meeting are to:

• Bring together experts from the fields of transplantation, economics, industry, and government, in order to present and discuss the economic issues of solid organ transplantation; and

• Establish a direction for future research and legislation in the field, with the goal of improving economic efficiencies.

The “Economics of Transplantation” is being Chaired by Dr. Jeffrey S. Crippin, M.D., medical director, Liver Transplantation, Washington University School of Medicine; Chair, public policy committee, American Society of Transplantation.

Back to Top

Scorecard:

• November 21, 2003 – US Senate Committee on Health, Education, Labor & Pensions approves, S. 573, Organ Donation & Recovery Improvement Act;
• November 25, 2003 – US Senate passes S. 573 by unanimous consent; and
• March 12, 2003 – US House of Representatives passes H.R. 399, Organ Donation Improvement Act of 2003.

The month of November proved to be a very busy and active month for the American Society of Transplantation (AST) and organ donation legislation pending before the US Senate. During the last month, only hours prior to leaving town for the Thanksgiving Congressional recess, the Senate approved S. 573, the “Organ Donation and Recovery Improvement Act.” The legislation, introduced by Senate Majority Leader Bill Frist (R-TN) and Senator Chris Dodd (D-CT), seeks to amend the Public Health Service Act to promote organ donation and reauthorize the National Organ Transplant Act (NOTA) of 1990. Highlights of the legislation include funding for public awareness campaigns; travel subsidies for living organ donation; a variety of targeted studies & demonstration projects; and grants for hospital organ donation coordinators.

The AST has strongly supported the reauthorization of NOTA and has worked closely with Congressional leaders for the last three Congressional sessions to craft this meaningful legislation, update existing programs, and strengthen the nation’s ability to provide the gift-of-life. AST’s role has included testifying several times before the House and Senate on organ donation issues, providing data and expertise in the crafting of the legislation, and educating and garnering support for the bills on Capitol Hill. During the final hours of the Senate’s consideration of S. 573, AST activated targeted “grass roots” activities utilizing several of the Society’s leaders to communicate constituent support for the legislation to specific Members of Congress.

The Senate-passed bill, S. 573, will now be reconciled or “conferenced” with a similar organ donation bill, H.R. 399, “Organ Donation Improvement Act of 2003,” passed by the US House of Representatives, on March 12, 2003. The AST worked earlier this year with the bill’s sponsor, Congressman Michael Bilirakis (R-FL), to ensure final passage on the floor of the House.

The AST wishes to thank and greatly appreciates the commitment and leadership provided in moving this important organ donation legislation forward. Some of the key Congressional leaders that have worked with AST for the last few years to make this legislation possible include:

• Senate Majority Leader Bill Frist (R-TN);
• Senate Chairman of the Health, Education, Labor and Pensions Committee, Judd Gregg (R-NH);
• Senate Ranking Minority Member of Health, Education, Labor and Pensions Committee, Edward Kennedy (D-MA);
• Senator Chris Dodd (D-CT);
• House Chairman of the Energy & Commerce Subcommittee on Health, Congressman Michael Bilirakis (R-FL); and
• Congressman Jay Inslee (D-WA).

In addition to Congressional leaders, AST has also worked tirelessly with the broader transplant community to bridge gaps and disagreements over the specific language and provisions included in both the House and Senate organ donation bills. AST is very appreciative of all of the organizations that have worked and shared the Society’s goal of passing meaningful organ donation reauthorization legislation.

Given that the US House of Representatives and the US Senate have passed organ donation bills in the first session of the 108th Congress, the AST is hopeful, and will work diligently to ensure, that this important legislation is sent to the President’s desk during the first months of the New Year.

Back to Top

Congress and the Institutes of Medicine Examine NIH

On October 2, 2003, the Senate Committee on Health, Education, Labor & Pensions (HELP) and the House Energy & Commerce Committee held a joint hearing to examine the status of operations and capabilities at the National Institutes of Health (NIH). The basis for the NIH oversight hearing was a result of a Congressional directive in FY 2001 calling for the National Academy of Sciences to examine whether the current structure and organization of NIH are optimally configured for the scientific needs of the twenty-first century. In response to the Congressional request, the Institute of Medicine (IOM) recently completed a report, “Enhancing the Vitality of the NIH: Organizational Change
to Meet New Challenges."

The joint House and Senate Congressional hearing was comprised of three witnesses, including Dr. Elias Zerhouni, director of NIH, and Dr. Harold Varmus, former director of NIH. In follow-up to the recent IOM report, Dr. Zerhouni testified and laid out a series of far reaching initiatives known collectively as the NIH Roadmap for Medical Research. Soon after becoming NIH director in May of 2002, Dr. Zerhouni convened a series of meetings to chart a “roadmap” for medical research in the 21st century – a process that was designed to identify major opportunities and gaps in biomedical research that no single institute at NIH could tackle alone, but that the agency still needed to address. In his first days as director of NIH, a delegation of leaders from the American Society of Transplantation (AST) met with Dr. Zerhouni to discuss recent advances and on-going challenges in the field of solid organ transplantation research.

Following an intense process of discussion and scientific review, the directors of NIH’s 27 institutes and centers approved an NIH roadmap strategy that features 28 initiatives to be carried out by nine implementation groups arranged under three main themes:
• New Pathways to Discovery;
• Research Teams of the Future; and
• Re-Engineering Clinical Research.

The NIH Roadmap for Medical Research may be viewed at http://nihroadmap.nih.gov .

During the hearing, Senate Majority Leader Bill Frist (R-TN) spoke in support of the NIH director and the Roadmap for Medical Research strategy, stating, “I intend to work to ensure a greater focus on translational and clinical research to bridge-the-gap between bench and bedside. We should ensure the director has a free hand and full stake in charting a strategic course for the entire agency. The NIH director has the ideal vantage point to identify cross cutting scientific issues and ensure those issues are investigated efficiently and cooperatively by NIH Institutes and industry. That is why this idea was endorsed by the IOM report. I know that this is a critical issue to Director Zerhouni and is a core piece of the Roadmap.”

Back to Top

In addition to recently testifying and serving as a resource to the Institutes of Medicine, Congress, and other HHS advisory bodies, the American Society of Transplantation (AST) has also focused specific attention on working with the offices of Senator Judd Gregg (R-NH), Chairman of the Senate Committee on Health, Education, Labor and Pensions (HELP), as well as, Senate Majority Leader Bill Frist (R-TN) to identify key areas of success and areas for improvement within our nation’s system for medical research. In addition, the Society is continuing its dialogue with NIH Director Zerhouni’s office in follow-up to the Society’s meeting with the director during his first days in office.

Although the timing is not clear, there has been discussion on Capitol Hill that an NIH legislative package may be developed and introduced in the near future.

Back to Top

No Summer Break for the AST Public Policy Committee

The AST public policy committee has had a very busy and productive summer. In followup to the Society’s highly successful 2nd Congressional Transplantation Public Policy Awards (March 12, 2003), the committee has conducted additional “fly-in” meetings in Washington, DC, on June 2nd and 10th, as well as on August 25th and 26th. The purpose of the Society’s increased visits to Capitol Hill has been to strengthen and garner additional support for the passage of a variety of organ transplantation bills currently pending before the 108th Congress. Some of these key pieces of legislation include:
• Organ Donation and Recovery Improvement Act;
• Comprehensive Immunosuppressive Drug Coverage for Transplant Patients Act;
• FY 2004 Labor, Health and Human Services Appropriations Bill (NIH Funding); and
• Organ Donation Improvement Act.

The Society’s public policy committee has continued to increase the overall visibility of the Society with Congressional leaders and staff to ensure legislation seeking to improve the field of organ transplantation continues to move forward.

The Society is also working within a broader coalition of the transplant community, the Transplant Roundtable, a group of key transplantation stakeholder organizations committed to educating Capitol Hill and other federal/state decision-makers on the importance of transplantation and donation.

During the Society’s most recent visit to the nation’s Capitol, the public policy committee met with a variety of offices including:
• Secretary of HHS, Tommy Thompson;
• Center for Medicaid and Medicare Services (CMS);
• Senate Majority Leader Bill Frist (R-TN);
• Chairman of the Senate Health, Education, Labor and Pensions Committee, Judd Gregg (R-NH); and
• Chairman of the House Energy and Commerce Subcommittee on Health, Michael Bilirakis (R-FL).

Back to Top

AST Testifies Before the Institutes of Medicine on Pediatric Research

In early spring, the National Academy of Sciences, Institutes of Medicine (IOM), invited the AST to provide testimony before the IOM Committee on Clinical Research Involving Children. On Wednesday, July 9, 2003, the Society’s Immediate Past President, Dr. Bill Harmon, traveled to Washington, DC, to present formal testimony before the IOM. The AST has a strong history of activity on issues involving pediatric advocacy and research.

During the 106th Congress, the Society worked with Congresswoman Diana DeGette (D-CO) and other Congressional leaders to craft the “Special Needs of Children Regarding Organ Transplantation” provision included in the Children’s Health Act of 2000. In addition, the Society has strongly supported the Food and Drug Administration’s (FDA) “Pediatric Rule of 1998,”requiring drug manufacturers to include pediatric assessments in all new drug applications for the purposes of ensuring safety and efficacy in pediatric patients.

During his testimony, Dr. Harmon also discussed the roles of the NIH, pediatric disease registries, and pediatric academic centers, in protecting children involved in clinical research.

Back to Top

AST on Capitol Hill for Medicare Prescription Drug Debate

On Tuesday, June 10, 2003, AST PP Committee Chair, Dr. Jeff Crippin, and AST Director of Government Relations, Bill Applegate, traveled to Capitol Hill to meet with a variety of targeted Members of Congress and staff. The primary purpose of the advocacy day was to further persuade Congressional leaders to expand coverage of immunosuppressive drug coverage in the Medicare Prescription Drug and Modernization Act of 2003 (currently pending in the House and Senate). In addition to immunosuppression, meetings were also convened to further advance pending legislation addressing OPO coordinator program grants, organ donor leave bills, and the more comprehensive “Organ Donation & Recovery Act,” as introduced by Senate Majority Leader Frist (R-TN). Some of the offices that Crippin and Applegate met with included Senate Majority Leader Frist (R-TN), Senator Durbin (D-IL), Senator Talent (R MO), Congressman Hinojosa (D-TX), Congressman Inslee (D-WA), and Congressman Greenwood (R-PA). The next meeting of the full AST PP Committee, in Washington, DC, is scheduled for Tuesday August 26, 2003.

Back to Top

AST to Testify on Pediatric Issues at the Institute of Medicine

The AST public policy committee arranged for the Society’s Immediate Past- President, Dr. Bill Harmon, to testify before the Institute of Medicine’s (IOM) Committee on Clinical Research Involving Children, on Wednesday, July 9, 2003, in Washington, DC. The IOM is a private, nonprofit organization that provides analyses and advice on important issues involving the public’s health. It is part of the National Academy of Sciences, which was chartered by Congress in 1863 to advise the government on important scientific and technical questions. The IOM Committee on Clinical Research Involving Children was formed in response to provisions in Public Law 107- 109 (Best Pharmaceuticals for Children Act, signed January 4, 2002). Funding for this study is being provided by the National Institute of Child Health and Human Development and the U.S. Food and Drug Administration. Dr. Harmon’s testimony will be used by the IOM Committee to prepare a report that includes recommendations for investigators, sponsors, research review boards, regulators, and others involved in pediatric research.

Back to Top

Secretary of HHS and Senate Majority Leader Join AST for the Society’s 2nd Congressional Transplantation Public Policy Awards

On March 12, 2003, the AST Public Policy Committee brought together on Capitol Hill the nation’s top health care leaders, including Secretary of HHS Tommy Thompson and Senate Majority Leader Bill Frist, MD (RTN) at the Society’s 2nd Congressional Transplantation Public Policy Awards. In addition to Secretary Thompson and
Majority Leader Frist, the AST public policy committee also honored other key national public policy leaders that have worked closely with the Society in championing the “gift of-life.” In addition to members of Congress, the AST reception also included many senior Congressional and Department of Health and Human Services staff officials and the executive director of the HHS Advisory Committee on Organ Transplantation.

During the reception, both Senate Majority Leader Bill Frist (R-TN) and HHS Secretary Tommy Thompson jointly thanked AST for “continuing to pressure Capitol Hill to pass meaningful legislation to further strengthen the nation’s system for organ donation and transplantation.” Senate Majority Leader Frist also challenged the Society to continue to educate and gain support for his legislation, the “Organ Donation and Recovery Improvement Act of 2003.”

Other members of Congress present and honored at the AST 2nd Congressional Transplantation Public Policy Awards included:
Congressman Michael Bilirakis (R-FL)
• Chairman of the House Energy & Commerce Subcommittee on Health
Senate majority leader Bill Frist, M.D., (R-TN)
• Sponsored the “Organ Donation Improvement Act”
Senator Chris Dodd (D-CT)
• Ranking Minority Member, Senate Health, Education, Labor & Pensions Subcommittee on Children & Families
• Sponsored the “Organ Donation and Recovery Act”
Congresswoman Mary Bono (R-CA)
• Sponsored the “Improved Nutrition and Physical Activity Act of 2003”
Senator Mike DeWine (R-OH)
• Sponsored the “Living Organ Donor Protections Act”
Congresswoman Diana DeGette (D-CO)
• Instrumental champion for addressing “Special Needs of Children Regarding Organ Transplantation” in the Children’s Health Act/Law in 2000
Senator Richard Durbin (D-IL)
• Sponsored the “Donor Outreach, Network, and Timely Exchange Act”
Congressman Steven LaTourette (R-OH)
• Sponsored the “Medicare Fairness for Organ Transplant Recipients Act of 2003”
Congressman Pete Stark (D-CA)
• Sponsored the “Gift of Life Congressional Medal Act of 2003”
Congresswoman Carolyn McCarthy (D-NY)
• Practicing nurse for over 30 years and a strong supporter of patient access to specialty care legislation and Medicare program reforms.
Congressman Jay Inslee (D-WA)
• Sponsored the “Floyd D. Spence Organ Coordination Improvement Act”
Congressman Elijah Cummings (DMD)
• Sponsored the “Living Donor Federal Leave Act/Law”

The AST public policy committee looks forward to continuing to work closely with these offices in Congress and within the executive branch to continue to strengthen our nation’s ability to provide the gift-of-life. In addition to those recently honored, the AST looks forward to further educating and mobilizing other members of Congress to become active in this imperative health care public policy arena.

Back to Top

AST Unveils “Position Statements & Key Messages” at the Society’s Capitol Hill Receptio

In addition to honoring Members of Congress, the AST Public Policy Committee also utilized the Society’s recent Capitol Hill reception to share and brief Congressional staff and members on the Society’s updated “Position Statements & Key Messages.” During the last few months, under the leadership of AST Public Policy Chair, Dr. Jeffrey S. Crippin, the committee updated and developed a package of position statements for use in educating key decisionmakers on Capitol Hill, within the executive branch, and in state capitols. These position statements and key messages were developed and crafted by subcommittees of the public policy committee and then reviewed and approved by the AST board of directors.

Dr. Crippin and the public policy committee began the process of updating the Society’s educational materials in response to new issues emerging on Capitol Hill impacting the field of organ transplantation. In the past, AST has worked closely with a variety of members of Congress, staff and others in crafting legislative and regulatory initiatives. Education materials such as the Society’s first comprehensive position papers “Decade of Transplantation”, spearheaded by former AST President, Tom Gonwa, MD, proved to be very well received on Capitol Hill. In an effort to be as responsive and updated as possible, Dr. Crippin and the AST public policy committee built on the strength of the Society’s decade of transplantation to develop a package of key messages addressing:
• Immunosuppressive Drug Coverage;
• Insurance Coverage;
• Living Organ Donor;
• Organ Allocation
• Organ Donation;
• Patient Care;
• Pediatrics;
• Research/NIH Funding; and
• Future Directions.

The AST public policy committee recently took the newly updated education materials to Capitol Hill and met with over a dozen targeted Congressional leaders to update these decision-makers on the latest medical science, research and public policy impacting the field of organ transplantation. AST’s position statements and key messages may be viewed at www.a-s-t.org.

Back to Top

Transplant Physician Becomes Senate Majority Leader

As you may know, the Republican majority in the United States Senate chose a new leader to move the Party into the 108th Congress. In a historic conference-call vote, Republican Senators elected second term Senator Bill Frist (R-TN) to replace outgoing Majority Leader Trent Lott (R-MS). Senator Frist recently served as the chairman of the National Republican Senatorial Committee and is largely credited with the Republican Party’s success during the November elections, which led to the new majority in the US Senate. As Majority Leader, Senator Frist has significant influence and control over the legislative agendas and policies moving forward in the 108th Congress, which convened on Tuesday, January 7th, 2003.

The American Society of Transplantation (AST) has worked very closely with Senator Frist and his staff since he first arrived on Capitol Hill in 1995. Some of the more important legislative efforts AST has assisted the Senator in crafting and advancing included last year’s Organ Donation and Recovery Improvement Act, as well as a bipartisan effort in 2000 to reauthorize the National Organ Transplant Act (NOTA), which was unanimously approved by the Senate Health, Education, Labor and Pensions Committee.

Senator Frist was one of the first recipients of the AST’s Transplantation Public Policy Award for his ongoing dedication and leadership to improving the field of transplantation. Over the last eight years, Senator Frist and his staff have proven to be very reliable champions in moving the transplantation public policy agenda forward. Last year, Senator Frist provided the keynote address to the American Transplant Congress in Washington, DC. In the past, Senator Frist has also sponsored AST educational forums on Capitol Hill.

During the first few months of the new 108th Congress, AST has already begun to work with the Senator’s office to develop an organ donation legislative package. The Society greatly appreciates Senator Frist’s overall efforts to raise the visibility in Congress of such critical transplantation issues as: education, donation, medical research and immunosuppressive drug coverage.

The AST looks forward to continuing to work with Majority Leader Frist and his very dedicated staff.

Back to Top

Public Policy Committee Updates Advocacy Tools for 108th Congress

Prior to the start of the new 108th Congress, the AST public policy committee dedicated significant efforts to update the Society’s Capitol Hill key messages and position statements. These very valuable tools are utilized every day by the Society’s government relations team to educate and mobilize key members of Congress on issues of importance to the Society.

In December, 2002, over a dozen AST public policy committee members convened in Washington, DC, to analyze key issues and update AST’s Capitol Hill briefing materials.
Congressional staff joined the public policy committee’s meeting to assist the Society in identifying important policy issues and questions from Capitol Hill.

The Society’s position statements have proven to be very valuable and effective in the past. Previous AST briefing materials, such as the “Decade of Transplantation,” spearheaded by AST Past President, Dr. Tom Gonwa, has been significantly utilized by both the US House of Representatives and the Senate to provide research data and background information for the development of transplantation legislation. Because transplantation is such a rapidly advancing field, it is important to constantly update and provide the most recent data and information to federal decisionmakers and their staff.

The AST’s updated public policy position statements will be available in final format at the 2003 ATC in Washington, DC. Key issue areas being addressed include: Organ Donation, Living Organ Donation, Future Directions, Immunosuppressive Drug Coverage, Insurance Coverage, Organ Allocation, Patient Care, Pediatrics and Research.

Back to Top

Senators DeWine and Durbin Introduce First Transplant Bills of the 108th Congress

On January 16, 2003, Senators Richard Durbin (D-IL) and Mike DeWine (R-OH) jointly cosponsored and introduced Senate bills S. 178 & S. 186. The Senators’ bipartisan offerings seek to close existing loopholes and barriers to Medicare coverage for immunosuppressive drugs and prohibit health insurers from raising premiums for living organ donors.

The AST public policy committee has been very supportive of the Senators’ efforts to close existing loopholes to immunosuppressive drug coverage so the coverage exists for as long as the anti-rejection drugs are needed. In addition, the Society is very sensitive to insurance coverage concerns of living donors. The public policy committee is working very closely with Senators DeWine and Durbin to address and hopefully resolve these outstanding issues during the 108th Congress.

Back to Top