July 1999 Newsletter
Your Help is Needed:
Members of Congress Need to Hear from You Regarding Increased
Funding for the National Institute of Health (NIH)
As the budget season
moves forward, Congress must begin to make difficult choices
regarding specific
FY 2000 funding levels for a variety of domestic programs,
including the budget for the National Institutes of Health
(NIH), which funds the National Institute of Allergy and Infectious
Diseases (NIAID), the National Heart, Lung, and Blood Institute
(NHLBI), and the National Institute of Diabetes, Digestive
and Kidney Diseases (NIDDK). This process has been made more
difficult with the passage of the 1997-Balanced Budget Act,
which placed “caps” or limits on overall government spending.
Further, the Administration proposed to increase NIH funding
for FY 2000 by only 2.1%. This level is unacceptable and would
throw off course the important bipartisan goal set by Congress
to double NIH research funding by the year 2003.
As a result, it is imperative that
AST Members communicate to their Members of Congress regarding
the need for increased and sustained funding for the National
Institutes of Health (NIH), and specifically for the National
Institute of Allergy and Infectious Diseases (NIAID), the National
Heart, Lung, and Blood Institute (NHLBI), and the National
Institute of Diabetes, Digestive and Kidney Diseases (NIDDK).
The House of Representatives has
issued a revised appropriations schedule that includes a July
15th Labor-HHS Appropriations Subcommittee markup (a meeting
to debate and vote on the funding for programs at the Department
of Labor, Department of Health and Human Services, and the
Department of Education) and a full committee markup on July
28th. The Senate had previously planned a Labor-HHS Appropriations
Subcommittee markup on June 28th and a Full Committee markup
on July 1st; however, these have been postponed and are expected
to occur on July 13th for the Senate Appropriations Subcommittee
on Labor-HHS mark-up with a full mark-up scheduled on July
17th.
The following letter was sent to
AST leadership and placed on the AST Public Policy web site
at http://www.a-s-t.org/policy/nih0699.htm for
the entire membership’s use to alert members of the Appropriations
Committee on the importance of biomedical research and how
funding in this area effects the field of transplantation.
June 1999
The Honorable _______________
Address City, State Zip
Dear Representative or Senator:
As a concerned citizen and member
of the American Society of Transplantation, I am writing to
ask that you take an active role in providing the National
Institutes of Health (NIH) with a 15% increase in funding for
FY 2000. Specifically, I am asking that you provide an additional
15% for NIH, the National Institute of Allergy and Infectious
Diseases (NIAID), the National Heart, Lung, and Blood Institute
(NHLBI), and the National Institute of Diabetes, Digestive
and Kidney Diseases (NIDDK). Your support is crucial.
Medical research remains the best
hope to reduce human suffering. The Administration proposed
to provide only a modest budget increase of 2.3% for NIH in
FY 2000. As a member of the Appropriations Committee, please
take action that will secure the full 15% budget increase for
NIH that will benefit NIAID, NHLBI, and NIDDK.
The American Society of Transplantation
is an organization of 1,300 transplant physicians and scientists
within the specialties of nephrology, gastroenterology, immunology,
cardiology, pulmonology, surgery, and pediatrics who are dedicated
to research, education, advocacy and patient care in transplantation
science and medicine.
On behalf of millions of transplant
patients and their families across the country, thank you very
much for your immediate attention to this important matter.
Sincerely,
Member
American Society of Transplantation
Managed Care Battle
Interrupts Senate Appropriations Process and Moves Forward
to Senate Floor Debate
On July 12, 1999,
the Senate will begin four days of floor debate on patient
protection legislation.
This follows an attempt by Senate Democrats to move managed
care reform through the Senate by attaching their Patients’ Bill
of Rights (S. 6) to the FY 2000 Agriculture Appropriations
Bill (S. 1233). Republican leadership attempted to limit debate
by filing motions to cut off debate on the agriculture spending
bill as well as the next three appropriations bills including
Transportation, Commerce-State-Justice, and Foreign Operations.
These motions, known as a parliamentary maneuver called cloture,
were defeated and an agreement between party leadership was
reached that paved the way for upcoming debate following the
Fourth of July Congressional recess.
Senate Democrats charge that the
Republican legislation is limited in its protections for patients.
The Democratic bill would allow patients access to specialists
and clinical trials; emergency room coverage when an average
person would deem it necessary; internal and external appeals;
and the right to sue in state courts when a coverage claim
denial results in injury to a patient. The Senate Republican
bill would allow 161 million Americans with private insurance
to have internal and external appeals when coverage is denied.
But other key provisions are limited to the 48 million in fully
self-insured employee-sponsored plans, which often are provided
by large companies. Democrats would apply protections to all
insured patients.
In the House, the
Education and Workforce Subcommittee on Employer-Employee Relations
approved
a package of eight managed care reform measures based on the
patient protection ideas with the most Congressional support
on June 16, 1999. The following is a list of the legislative
measures that received the Subcommittee’s approval:
H.R. 2041 - A bill to amend Title
I of the Employee Retirement Income Security Act of 1974 (ERISA)
to provide to participants and beneficiaries of group health
plans access to obstetric and gynecological care.
H.R. 2042 - A bill to establish
a commission on health policy for employer-sponsored health
plans.
H.R. 2043 - A bill to amend Title
I of ERISA to provide to participants and beneficiaries of
group health plans access to unrestricted medical advice.
H.R. 2044 - A bill to amend Title
I of ERISA to provide to participants and beneficiaries of
group health plans access to pediatric care.
H.R. 2045 - A bill to amend Title
I of ERISA to provide to participants and beneficiaries of
group health plans access to emergency medical care.
H.R. 2046 - A bill to amend Title
I of ERISA to ensure access by participants and beneficiaries
of group health plans to information regarding plan coverage,
managed care procedures, health care providers, and quality
medical care.
H.R. 2047 - A bill to amend Title
I of ERISA to improve access and choice for entrepreneurs with
small businesses with respect to medical care for their employees.
H.R. 2089 - A bill to amend Title
I of ERISA to provide new procedures and access to review for
grievances arising under group health plans.
This legislation
will be considered by the full committee of the House Education
and Workforce
Committee following the Fourth of July Congressional recess.
A compromise is being sought with Committee Member, Rep. Charlie
Norwood (R-GA), who has introduced his own managed care legislation.
Norwood’s involvement in the debate has caused concern within
Committee leadership because Norwood may have the support of
other members to block the movement of the above package of
bills in an effort to move his legislation forward.
AST is concerned
that the current managed care system may impede quality care
to transplant patients
by denying access to specialty care. Protecting timely access
and open communication between transplant physicians and patients
is paramount to ensuring successful organ transplantation.
Stay tuned to updates on this managed care debate, which will
be posted on AST’s Public Policy web site at http://www.a-s-t.org/pubpol.htm.
Allotment of Organs
Debate Intensifies - AST Gains Support for State Boundaries
Position
The nation’s transplant community
is continuing its fight on organ allocations following Health
and Human Services Secretary Shalala’s announcement last year
that advocated for an overhaul of the transplant system to
give the sickest patients priority for organs regardless of
where they live. More than twelve states, who would lose control
over organs currently in scarce supply, are fighting back by
adopting “me first” laws designed to keep organs in the states
where they were donated. On June 25, 1999, the United Network
for Organ Sharing (UNOS) released revisions to the U.S. liver
transplant policy that focuses on greater access for urgent
patients and broader sharing of organs.
Under UNOS revised
policy, livers will be offered first to the most urgent category
of patients
(Status 1) within the "local" area of the donor,
usually defined as the designated service area of one of 62
organ procurement organizations nationwide. If no match is
found for a local Status 1 patient, the liver would be offered
to Status 1 patients throughout the UNOS region where the donation
occurred (UNOS has 11 regions) before being considered for
any less urgent candidates. The UNOS policy in the past offered
livers to any medically eligible local patients first, beginning
with Status 1 and in declining order of medical urgency, before
being offered regionally and then nationally.
In May, AST released
a position statement stating that state boundaries should not
become barriers
to transplant patients and their families. Representative Joe
Moakley (D-MA) supported AST’s position and sent the AST Statement
along with a “Dear Colleague” letter from himself to all Members
of Congress stating state laws that prohibit procured organs
from leaving the state or region where they were acquired are
dangerous and threatening to patient access.
Since the release
of the AST Position Statement, AST Public Policy Staff has
received support from
the Transplant Recipients International Organization, Inc.
(TRIO) and the National Kidney Foundation in opposition of
state laws, which act as barriers to organ allocation. AST
Public Policy Staff is also working with Rep. Michael Bilirakis
(R-FL), Chair of the House Commerce Health and Environment
Subcommittee, in reviewing legislation that would reauthorize
the National Organ Transplant Act (NOTA). This legislation
is expected to be introduced in the near future and hearings
are anticipated to occur this fall as Congress, Department
of Health and Human Services (HHS) and the transplant community
continue efforts to formulate a sound public health policy
that is equitable for all Americans, who desperately await “the
gift of life.”
LURD Highlighted
in Washington Post
In the Washington
Post’s Health
Section on June 15, 1999, the Cover Story entitled, “Hey, buddy,
can you spare an organ?” focused attention on a new world of
transplantation - living unrelated donors (LURD). While most
transplants in the past have come from cadavers, 43% of last
year’s kidney donors came from living donors, the highest percentage
since the early days of organ transplantation. Live-donor transplants
have higher success rates because the living donor is by definition
extremely healthy and carefully screened and the organ’s out-of-body
time is measured in minutes instead of hours. While the numbers
of living donors are higher in the area of kidney transplantation,
the Washington Post reported that live donation is also possible
for other organs, including the liver, lung, pancreas, intestine,
and more recently, even a heart. In a procedure known as a “domino
transplant,” 39 individuals needing a lung transplant have
donated a heart in return for a heart-lung transplant from
a cadaver.
In Washington, D.C.,
the Washington Regional Transplant Consortium (WRTC), the area's
organ procurement
agency is proposing a pilot project that may be the solution
to the live organ donation. The WRTC's pilot project would
allow "live donors" to give a kidney to a nonrelative
in three ways that until now have not been possible:
Living donor/cadaver exchange. This
would give a transplant patient priority on the waiting list
for a cadaver kidney if a nonmatching relative donated a kidney
to the general pool. The exchange not only would benefit the
person who needs a transplant but also would help others still
waiting by removing one name from the list.
Paired exchange. Suppose
a brother wants to donate a kidney to his brother but cannot
because their blood types do not match. If an unmatched pair
in the same predicament in a different family can be found,
the two families may be able to work a swap.
Altruistic or Samaritan
donation. An individual offers to donate one kidney
to the pool of available organs, with no specific recipient
in mind.
Of the three, transplant experts
said, the living donor/cadaver exchange is expected to result
in the most transplantable organs. Jimmy A. Light, Director
of Transplant Services at Washington Hospital Center, predicted
it might boost the supply by 10 percent or more.
Waiting for Life:
Allocating Organs for Transplant
The Richmond Times Dispatch, the
newspaper serving the Richmond, Virginia area where the United
Network for Organ Sharing (UNOS) is located, published a three-day
series about organ transplantation. The comprehensive series
featured articles on the costs, ethical and emotional ties
and success stories associated with organ transplantation and
was the result of six months of work by a team of Times-Dispatch
journalists.
In one of the articles
in the series, entitled, “Battle over organ heats up - Are donations a local
or national resource?” the Times-Dispatch reporter takes a
position similar to AST’s that organs should not be allocated
on the basis of an arbitrary geographic area. A Times-Dispatch
analysis of transplant statistics shows that UNOS’ policy suggests
that where patients live and where their insurer allows them
to go for treatment affect their chances of living or dying.
This series may be viewed on the
Internet at http://www.gatewayva.com/rtd/special/waitingforlife/.
Administration
Releases Medicare Reform Proposal
On June 29, 1999,
President Clinton unveiled his plan to modernize and strengthen
the Medicare
program by seeking to: make Medicare more competitive and efficient;
modernize and reform Medicare’s benefits; and make a long-term
financing commitment to the program that would extend the life
of the Medicare Trust Fund until 2027. Provisions of the Administration’s
plan include the following:
• Gives traditional
Medicare new private sector purchasing and quality improvement
tools;
• Extends competition to Medicare
managed care plans by establishing a "Competitive Defined
Benefit" while maintaining a viable traditional program;
• Constrains out-year
program growth, but more moderately than the Balanced Budget
Act (BBA) of 1997;
• Takes administrative
and legislative action to smooth out the BBA of 1997 provider
payment reductions;
• Establishes a new voluntary Medicare "Part
D" prescription drug benefit that is affordable and available
to all beneficiaries;
• Eliminates all
cost sharing for all preventive benefits in Medicare and institutes
a major
health promotion education campaign;
• Rationalizes cost
sharing;
• Reforms Medigap;
and
• Includes the President’s
Medicare Buy-In proposal.
(*There are no physician payment
cuts recommended by the Clinton plan.)
Catching the most
attention in the reform plan is the provision of drug coverage
for all of the
39 million Medicare beneficiaries. Members of Congress have
expressed caution about the cost involved in providing this
vast coverage. The White House estimates the prescription plan
could cost as much as $118 billion over ten years. Representative
Tom Coburn (R-OK), a practicing physician, reiterates the fears
of many that the President’s plan will increase Medicare premiums
for the expanded prescription drug benefits. The American Medical
Association is continuing to analyze the President’s plan and
is expected to post their analysis on their web site at http://www.ama-assn.org/advocacy.htm.
Medicare Payment
Changes Under Consideration
The Senate Finance
Committee held two hearings during the second week in June
to discuss Medicare
payments for outpatient care, a new payment policy for transferred
patients, and reductions of reimbursements for the bad debt
of Medicare beneficiaries. According to the Conference Report
of the FY 2000 Budget Resolution (HR Con Res 68), Medicare
spending may be altered if the House Ways and Means Committee,
the Senate Finance Committee, or a conference committee reports
a bill, or if the House offers a significant amendment to a
bill, that “implements structural Medicare reform and significantly
extends the solvency” of the Medicare hospital fund.
The resolution also
specifically says that adding prescription drug benefits could
be part of
an overhaul, although such action would be separate from budget
act changes. Senate Finance Member, Bob Graham (D-FL), introduced
a bill to add more preventive service coverage to Medicare,
including limited drug benefits. President Clinton’s current
plan to overhaul Medicare includes subsidized coverage for
prescription drugs.
Dr. Gail Wilensky, Chairwoman of
the Medicare Payment Advisory Commission (MedPAC), testified
before the Senate Finance Committee that the implications of
the 1997 Balanced Budget Act (BBA) should focus on whether
the quality of or access to Medicare has been hampered and,
if so, what can be done. Her testimony expressed the importance
of payment to inpatient and outpatient hospital services, skilled
nursing facilities, home health agencies, and physician services.
Dr. D. Ted Lewers
of the American Medical Association reported results from the
AMA’s Socioeconomic
Monitoring System and concluded before the committee that a
considerable number of physicians are not renewing or updating
equipment in their offices for new procedures and techniques.
He also said that many doctors are conducting procedures in
the hospital formerly done in the office. “In order for the
medical innovations that will come from Congress’ enhanced
funding of biomedical research, FDA modernization, and better
Medicare coverage policies to translate into ever-improving
standards of medical care,” said Dr. Lewers; “physicians must
be able to adopt these innovations into their practices.”
NIH “E-Biomed” Receives
Criticism
Dr. Arnold S. Relman
of Harvard Medical School spoke out in the New England Journal
of Medicine
against an NIH-proposed web site for quicker posting of new
clinical studies. In an editorial discussing the pros and cons
of the project called “E-biomed.” Dr. Relman said, “Prepublication
evaluation of the reliability of clinical studies and impartial
assessment of their implications for health care are usually
more important than the speed with which the data are made
available.”
E-biomed, proposed
by NIH Director Harold Varmus, should make more reports available
to the medical
community via the Internet rather than by journals. Authors
would submit work through either a more traditional E-biomed
Governing Board or though a general repository. Dr. Arnold
expressed concern that the repository procedure, requiring
review by only two accredited individuals, would be problematic, “because
the information would be made public without the benefit of
simultaneous expert commentary and interpretation.”
Another argument
by Dr. Arnold was that a web-based source for medical reports
would hurt the
business of traditional journals. Emphasizing the difference
between basic-science and clinical journals, Dr. Arnold said
that “mistakes, inaccuracies, and misinterpretations in clinical
research pose a far greater risk to health and the public welfare
than do errors in basic-science research.”
Dr. Varmus’ proposal for “E-biomed” is
on-line at http://www.nih.gov/news/pr/may99/od-06.htm.
Sponsoring a Congressional
Visit
As part of our efforts to increase
funding for the National Institute of Allergy and Infectious
Diseases (NIAID), the National Institutes of Diabetes, Digestive,
and Kidney Disease (NIDDK), and the National Heart, Lung and
Blood Institute (NHLBI), as well as increase awareness about
organ donation and transplantation issues, the American Society
of Transplantation asks you to consider hosting a Congressional
tour at your hospital, research lab, or clinic during a Congressional
Recess. We find this one-on-one type of education to be very
successful with Members of Congress and their staff. The level
of knowledge and support for research in the area of transplantation
and the awareness of organ donation should be greatly enhanced
following a tour at your facility. This type of relationship
building is pivotal to AST's overall efforts to influence national
health care and research policy.
AST Public Policy Staff has provided
a sample letter, which you can use to invite your Member of
Congress for a tour. Please take the letter and proceed in
the following manner:
1. Please visit the Finding Your
Member of Congress web page (http://congress.org/search.html) to identify
your Member of Congress. If you do not have web access, please
contact Jodi Chappell, AST Public Policy Staff, at (202) 857-5322
and she will help you identify your Member of Congress.
2. Decide on the suggested date,
time, and place for the tour. While you will only put one date
and time option in the letter, please remember that you will
need to be flexible on this aspect, if the Member is going
to agree. As schedules for Members of Congress are tight, we
would like to suggest that you select a time during the traditional
Congressional recess, which will occur during the month of
August. During this recess, Members of Congress will be home
in the district.
3. Re-type the draft letter on to
your own personal letterhead, filling in the date, time, and
place. Also, since this a somewhat generic letter, you should
add a few sentences to personalize the letter to specific concerns
related to your specialty at your academic health center or
private practice.
4. Please cc: the letter to Jodi
Chappell, AST Public Policy Staff, by fax at (202) 857-1115.
Upon receiving the cc: copy of the letter, the AST staff will
call the scheduler for your Member of Congress. This will ensure
that the letter was received and properly routed. Also, this
will enable the AST Public Policy staff to gauge the interest
of the office and begin the negotiation process. Following
this phone call, the AST staff will call you to discuss what
steps need to be taken to ensure that your Member of Congress
accepts your invitation.
5. After your Member of Congress
accepts the invitation, the AST staff will work with you regarding
the actual tour, specific points you will want to make with
your Member of Congress, background information on the Member
and on the status of current health care issues, and etc.
If you have any questions or need
additional information, please do not hesitate to call Jodi
Chappell, AST Public Policy Staff at (202) 857-5322, or e-mail
Jodi at jodi_chappell@dc.sba.com.
Sample Invitation Letter
Date
The Honorable ___________
Address City, State Zip
Dear Senator/Representative ,
I am writing to extend an invitation
to you and your staff to visit [Insert Tour Site] and learn
about organ transplantation. At this visit, I would like to
share with you information regarding organ procurement issues,
as well as the important need for Congress to provide federal
funding for increased research for the National Institutes
of Health.
To facilitate the scheduling of
your visit, I would like to suggest [Insert Date and Time]
as a possible time. However, if this date is not convenient,
I would be happy to work with your schedule and set a time
that is mutually convenient. I will be in contact with your
office sometime next week to confirm or change this date.
[Insert a paragraph that specifically
describes your medical practice: i.e. hospital size; number
of patients; number of staff; years in operation]
Important medical breakthroughs
such as tissue typing and immunosuppressant drugs have allowed
for a larger number of organ transplants and a longer survival
rate for transplant recipients. Unfortunately, the need for
organ transplants continues to exceed the supply of organs.
But as medical technology improves and more donors become available,
thousands of people each year will live longer and better lives
because of organ transplantation.
Let me thank you in advance for
considering my request. I look forward to seeing you in [Month
of Visit Request]. If you have any questions or require additional
information please do not hesitate to call me at (XXX) XXX-XXXX.
Sincerely,
Member
American Society of Transplantation
