From The Desk of Kim McCleary
The National Institutes of Health (NIH) is the world’s largest
biomedical institution. With an annual budget of $28 billion divided among 27
Institutes, Centers and offices, the NIH conducts and sponsors basic and
clinical research, supports training grants and educational activities and
fosters the translation of science to better diagnostic tests and techniques and
treatments. The research it funds is important not only in terms of what that
research contributes to understanding of disease and the body’s complex biology;
it’s also symbolic of the government’s research priorities, sending a signal to
the international research community about where opportunity exists – and where
NIH funding for CFIDS research totals $78 million from
1990-2004. In recent years, the annual investment has dropped from an all-time
annual high of $7.4 million in 1995 to the current level of $6 million – placing
CFIDS at the very bottom of the NIH funding chart. Last fall, the Association
released a 45-page analysis of NIH
funding, documenting that over the past five years, $5.2 million reported as
spent on CFIDS actually related to studies that have nothing to do with the
illness. Since then, we’ve asked Congress to be more forceful in its requests
for NIH to expand CFIDS research. (Read
news of recent progress.) The annual appropriations (funding) process is one
opportunity for Congress to assert this direction. Another exists through a more
infrequent legislative activity – NIH reauthorization.
Every few years, Congress renews the NIH’s authority for
certain programs and activities. This legislation, referred to as
reauthorization, last passed Congress in 1993 and officially expired in 1996.
That law included three CFIDS-specific provisions. It created the CFS
Cooperative Research Centers, mandated inclusion of CFS advocates on NIH
advisory committees, and created a special study section to review CFS research
proposals. Only the study section still remains, and it’s often identified by
researchers as more of a barrier than a benefit.
Most members of Congress agree that NIH reauthorization is
long past due and lawmakers have committed to passing new authorizing
legislation before this session adjourns in October of 2006. Congressional
priorities for NIH reform include streamlining the budget, granting the NIH
director more funding authority and improving oversight and reporting systems.
Past attempts at reauthorization have bogged down over hot-button issues like
stem cell research and studies of sexually transmitted diseases. This year,
ethics concerns about outside consulting arrangements for NIH investigators and
human subjects protections are likely to further polarize debate.
Representative Joe Barton, chairman of the House Energy and
Commerce Committee, has drafted legislation proposing a sweeping reorganization
of NIH. In the first hearing on the bill, held July 19, 2005, NIH Director Dr.
Elias Zerhouni expressed enthusiasm for the proposal, but he stopped short of
giving it his full endorsement. “I see great wisdom in what the committee is
proposing,” he said, suggesting that the details still need to be worked
through. The text of the bill has not yet been released to the public, but it is
reported to give the NIH director tremendous latitude in restructuring the
agency and determining funding priorities. It may also dramatically change the
way the public and advocacy organizations can impact research funding issues.
It’s unclear whether the Senate Health, Education, Labor and Pensions Committee
will start with Rep. Barton’s proposed bill or write its own version.
The Association has already begun engaging authorizers in
Congress about the woefully inadequate effort NIH has made to cultivate a
serious research effort for CFIDS, especially between 1999 and 2003 when
Congress doubled the agency’s budget. We will continue to highlight
institutional barriers that hamper research on multisystem illnesses and will
call for greater transparency of the agency’s funding practices and priorities.
Changes Ahead for NIH and
One of the
reform measures we will champion is the creation of an office to direct
trans-NIH initiatives. Presently, NIH is organized by organs and body
systems (e.g., National Eye Institute, the National Heart, Lung and Blood
Working groups link administrators and
researchers from different institutes who handle a particular disease or
families of disease. However, these groups are often voluntary in nature,
lacking formal infrastructure, administrative support and funding. They
suffer or dissolve when staff-participants take new positions or leave NIH
and the outcomes they produce are uncertain and largely unmonitored.
conditions like CFIDS that don’t fit neatly into body-system silos, the
participation of scientists and program staff representing diverse
disciplines is crucial. We’ll join with others who advocate strategies
that foster productive partnerships to transcend this antiquated
These last two issues have
been raised by a multitude of groups, including the NIH’s own Council of Public
Representatives that reports directly to NIH Director Zerhouni. We’ll also
analyze the strengths and weaknesses of reauthorization proposals as they’re
Although the $4 million
Request for Applications issued by NIH on July 14, 2005
is a notable step forward, we cannot neglect the
opportunity to engage in NIH reform. When Congress returns from recess on
September 6, the CFIDS Association will represent the interests of the CFIDS
community – patients and researchers alike – to ensure that our needs and
concerns are addressed in future hearings and drafts of legislation. As more
information becomes available, we’ll alert advocates to timely opportunities to
contact members of Congress, NIH officials and the press through
Center and CFIDSLink. We hope
you will help raise the visibility of CFIDS by responding to these calls to
action. The future of CFIDS research may depend upon your participation!
K. Kimberly McCleary