 As the nation’s leading nonprofit organization
dedicated to improving care for sarcoidosis patients and to finding a
cure for this disease, FSR has taken a leadership role in efforts to
advance sarcoidosis on the nation’s health care agenda.
Sarcoidosis is the most common chronic fibrotic lung
disorder in the United States. We feel strongly that policy makers can take positive actions to help patients with this disease. Collectively,
we need to encourage lawmakers to pass legislation which increases
research and education for sarcoidosis and improves access to care,
diagnosis and treatment.
Advocacy is when individuals take action to
demonstrate their support for policies at the local, state and federal
levels in an effort to influence lawmakers. Patient ‘advocates’ can
educate lawmakers and share their personal stories by sending an e-mail,
writing a letter, placing a phone call or visiting their elected
officials. Advocacy allows individuals and groups to be heard by their members of
Congress and to truly make a difference.
Recent FSR Activities:
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1 June 2010 |
Treatments for Rare
Disease
Recognizing that accelerating the approval process for rare
disease treatments is a critical step to improving the lives
of those living with sarcoidosis, FSR signed a letter of
support for the Kakkis Foundation Cure the Process
Campaign. Read the
Letter.
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2 March
2010 |
ATS-PAR Lobby
Day 2010
FSR joined members of the ATS Public Advisory Roundtable in
advocating for increased research for lung diseases through
the NIH, CDC and the VA as well as urging Congress to finish
health care reform and sponsor a joint resolution declaring
2010 as the Year of the Lung.
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Finish Health Care Reform:
Patients with chronic and expensive respiratory conditions must
have guaranteed access to affordable insurance. Although
the current legislation is not ideal, it does contain enough
improvements like ending pre-existing condition exclusions, that
ATS and FSR encourage Congress should pass it.
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Support Year of the Lung: The
cost of lung disease runs to billions each year in lost
productivity and increased health care expense. The connection
between life and breath is fundamental, yet lung health is low
on the public health agenda.
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$35 billion in funding for NIH in FY2011:
The historic ARRA investment generated remarkable innovation
that is paving the way for new advances. ATS and FSR
joined together to urge Congress to sustain these new research
programs.
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$8.8 billion for CDC in 2011: This
includes $268 million for the expansion of the National
Occupational Research Agenda.
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$1 billion for the VA
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15 Jan 2010 |
Health Reform
FSR joined more than 40 organizations in asking Speaker
Pelosi, Leader Hoyer and Chairmen Rangel, Waxman, and Miller
to recognize the need for reform to our current health care
system and provide high quality care to the millions of
Americans that currently go without. "We urge you to
swiftly complete the work that has come this far and take
the remaining steps necessary to enact comprehensive health
care legislation and undoubtedly improve the lives of all
Americans."
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30 July
2009 |
Senate Report 111-066
- 2009 Appropriations for NHLBI
The Senate Appropriations Committee added the following
language to the Departments of Labor, HHS and Education and
Related Agencies Appropriation Bill (for NHLBI):
“Sarcoidosis- The Committee is concerned that little
progress has been made in understanding the cause of
sarcoidosis, for which there are no effective treatment
options. The Committee strongly encourages the NHLBI to
place a high priority on sarcoidosis by intensifying its
investments in basic research, clinical investigations and
trials.”
Learn More.
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16 July
2009 |
Health
Reform Consensus Principles
FSR joined the Genetic
Alliance and various stakeholders in encouraging Congress to
engage in health reform, not just healthcare reform and to
adopt five main areas to serve as the pillars of an
effective health system: access, economics, delivery
systems, patient empowerment, and the research to care
continuum.
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25 March
2009 |
S.515, the Patent
Reform Act of 2009
FSR joined other research organizations in writing to Senate
Judiciary Committee Chairman Patrick Leahy stressing the
value of strong patents for the development of therapeutic
interventions. Read
the Letter.
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26 January
2009 |
S.1 American Recovery
and Reinvestment Act of 2009
FSR joined other
research organizations
in asking the Senate Appropriations Committee to ensure that
comparative effectiveness research (CER) included in the
economic stimulus establish a framework that is
patient-centered.
Read the Letter.
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19 December
2008 |
Biotech Stimulus
FSR encourages support for small, research-intensive
companies who promise to improve health through innovation.
Learn More.
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18
September 2008 |
Small
Business Innovation Research (SBIR)
The SBIR program is a set-aside of federal research and
development grant monies that are reserved for innovative,
small business applicants. These funds provide critical
“seed” money for early stage research and development being
undertaken by small companies with fewer than 500 employees.
The current eligibility guidelines are prohibiting many of
the most innovative companies from competing for crucial
early stage research and development funding. These
limitations negatively impact Americans living with rare
diseases.
Learn More. |
Past National Initiatives:
American Recovery and Reinvestment Act
(March 2009) Part of the ‘stimulus’ package included funding
for NIH (200 or more 'challenge' grants, each of up to $1 million in
total costs. National Heart, Lung, and Blood Institute,
challenge topics include ‘Management of Sarcoidosis’.
Learn More.
Genetics of Sarcoidosis (July 2008) Hosted
by the National Institutes of Health included discussion of
multicenter project to collect tissues, DNA and other samples for
the sarcoidosis research community.
Neurosarcoidosis Workshop (January 2006) Hosted by the National Institute of
Neurological Disorders and Stroke (NINDS) at the urging of patient
advocates, this workshop addressed future research initiatives in
neurosarcoidosis.
FAA Ruling on Portable Oxygen (August 2005) With the urging of public
interest organizations, including FSR, and Senators Mike Crapo (R-ID)
and Blanche Lincoln (D-AR) and Representatives Cliff Stearns (R-FL) and
John Lewis (D-GA), the Federal Aviation Administration ruled that all US
airlines can allow passengers using two specific models of portable
oxygen concentrators (air oxygenators) onto their flights. Previously
only those airlines that were certified to handle hazardous materials
could accommodate passengers who needed oxygen on board. While this is
an important victory, the rule permits airlines to board passengers with
portable oxygen concentrators, but does not require them to do so. (The
FAA does not have the authority to force airlines to comply.) Patients
will have to inform the airline and provide a doctor's letter indicating
the need for and their ability to use the devise. Other types of
portable oxygen are not permitted for use during airline travel.
Trans-NIH Sarcoidosis Coordinating Committee (Established Fall 2004)FSR supports
the ongoing efforts at the National Institutes of Health to share
research activities, coordinate information on sarcoidosis, promote
workshops and other activities that could be jointly sponsored by
interested NIH Institutes. Co-chaired by James Kiley and Herbert
Reynolds from NHLBI, the Committee which included representatives from
ORWH, NEI, NIAMS, ORD, NHGRI, NINR, NIDDK, NINDS, NIAID met in November
2004, January 2005, June 2005. |
