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FAIR Act
(S. 852) - Doctor-Patient Alliance for Responsible Cancer Policy
Talking Points
Status of the FAIR Act:
On May 26th, the Senate
Judiciary Committee approved S. 852 by a vote of 13-5, with all five
votes against the measure cast by Democrats on the Committee. Senator
Specter has indicated that he would like to bring the bill to the
Senate Floor in July. However, it is uncertain whether he will be
granted Floor time by Senate Majority Leader Bill Frist. The House
has introduced a version of the bill that does not contain a Trust
Fund. It purely defines medical criteria in hopes that that will
resolve litigation issues.
The Doctor-Patient Alliance White
Paper – outline of concerns with the FAIR Act:
While the Alliance is
encouraged by the efforts to globally compensate victims of asbestos
exposure and provide long overdue research funding for this orphan
asbestos-related cancer, it believes the FAIR Act as drafted has
serious flaws that must be rectified.
1)
The $1.1 million
compensation cap does not adequately address the needs of
mesothelioma patients.
- The bill restricts payments based
on predetermined medical criteria. The Alliance believes that the
cap is insufficient to meet the medical and support service
expenses most patients face. Moreover, the cap is insufficient to
address the ongoing medical costs of patients who outlive the
median survival time but who remain disabled and unable to earn a
living.
- The Alliance does not believe the
pre-determined awards adequately compensate mesothelioma patients,
a subset of the patient population that experience extraordinary
pain and suffering.
- Recommend talking about the
treatment options for patients with mesothelioma, survival rates
and patient “experience.”
2)
Delays in the distribution of compensation
will hurt patients.
- Once the FAIR Act becomes law,
civil claims by mesothelioma patients, even those with imminent
trial dates, will be terminated. Patients will be unable to
collect any compensation from the Trust Fund until it is up and
running. Legal experts predict it may take years for the new
federal bureaucracy to begin making partial payments on claims.
- While this was a major point of
contention debated in the Judiciary Committee, there are no real
safeguards in the legislation to ensure that patients will begin
receiving compensation immediately, especially if there are delays
in establishing the Fund due to legal challenges or the
bureaucracy of creating a Trust Fund of this nature.
- Mesothelioma patients have a life
expectancy between 6 and 18 months on average, therefore the
expediency of the distribution of funds could mean the difference
between finding effective treatments/palliative care or not.
- It is vital that the Trust
Fund distribute awards to mesothelioma patients immediately, while
they are still alive, so they can invest the money in
life-extending treatment.
3)
Funding for research should be made a
higher priority and funded at higher levels by the defendant
companies.
- S. 852 calls for the establishment
of a National Mesothelioma Research and Treatment Program.
As written, the bill authorizes $29 million per year to go toward
this program to support basic and translational research, a
registry and tissue/blood bank and educational center managed
through the National Institutes of Health.
- As written, the industry would
only contribute $17 million per year, or 58% of the program
funding, leaving the other 42% up to the purview of appropriators
in Congress. Moreover, the bill would allocate only 0.2% of the
$140 billion trust fund toward research on the prevention,
detection and treatment of mesothelioma – or other
asbestos-related diseases/conditions.
- IMPORTANT NOTE: As part of
the $29 million per year authorization, the bill authorizes $12
million in funding per year from Congress to the National
Institutes of Health to support the National Mesothelioma Research
and Treatment Program. (The other $17 million per year would come
from the Trust fund.)
This is
just an authorization. The appropriators in Congress must decide
annually to allocate the $12 million federal contribution to NIH to
support the program. The bill calls for the establishment of funding
in FY 06. While this bill has not been signed into law, the research
community hoped that Senator Arlen Specter would allocate funding for
mesothelioma research as part of the FY 2006 appropriations. Senator
Specter is Chairman of the appropriations subcommittee (Labor, Health
and Human Services and Education) that provides funding and directive
to the National Institutes of Health.
The
appropriations committee passed FY 06 appropriations for NIH as part
of the Labor, Health and Human Services and Education bill, last
week. Yet, there is still no clear indication whether Senator Specter
intends to provide initial dollars to establish the National
Mesothelioma Research and Treatement Program in FY 06. Moreover, it
is unclear whether or not Senator Specter and the Labor, Health and
Human Services and Education appropriations subcommittee allocated
additional funding for mesothelioma in FY 06 – despite the commitment
outlined in the FAIR ACT.
*** POSTED JULY 18, 2005 ***
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PATIENT PROFILES
