An Institute for all Americans….
Or Just Some?
This Budget request represents the Administration’s priorities for guiding the Department of Health and Human Services (HHS) to enhance the health and well-being of all Americans.
But has it? Government funded studies have been invaluable in documenting that the million people or so people with chronic fatigue syndrome in the U.S. have high rates of disability and cost the economy about $20 billion a year.Those are major disease type figures but has the DHHS listened to its own figures?
In Part V of our “20 Years Ago Today Series” celebrating the 20th Anniversary of International Awareness day, we take a in-depth look at trends in CFS funding at the biggest researcher funder in the world, the NIH and get some surprising results.
There’s no doubt that, at least in the U.S., ME/CFS has gotten a better reception over time. It’s not the ‘yuppie flu’ of yore and while many negative attitudes persist, at least in the media and on major websites, the disorder is addressed in a respectful manner. But has movement, slow but considerable, translated into more funding? Let’s take a look at CFS and NIH funding trends since the CFS program was initiated in 1987. Take a deep breath….its not pretty.
National Institutes of Health (NIH)
The NIH, with its 30 billion dollar budget, most of which goes directly to research grants, is easily the biggest medical research funder in the world. Buoyed by powerful supporters on the Hill, the NIH has had a remarkable ride over the past 20 years, with its budget, not accounting for inflation, tripling over the past 15 years.
The National Institutes of Health has been to put it plainly…rather flush…The past 20 years have not been a bad time to be a medical researcher…that is unless you’re studying ME/CFS.
In the graph below contrasting total CFS funding with total NIH funding note that since 1995 funding for CFS declined as the NIH funding more than doubled. Judging from this chart most disorders much have experienced substantial funding increases over time (Pleases note the charts below are distorted in order to get the CFS figures on them; NIH funding is in millions of dollars, the CFS funding is in thousands of dollars )
Notice that from 1987 to 1995 the rate of growth in research funding for CFS actually exceeded the rate of growth in of NIH funding, suggesting high interest in this disorder. Around 1995, however, something happened; from 1995 to 2002, although the NIH budget increased signficantly, ME/CFS funding remained flat, which meant that accounting for inflation, it declined.
Window of Opportunity Lost For ME/CFS
Those years were just a taste of what was to come, though. From 1997 to 2002 the NIH underwent the most rapid budget growth in its history, almost doubling it’s budget in five years. The graph below, charting NIH and CFS funding during this period, indicates CFS funding remains flat, and thus in real terms, continues to decline.
Perhaps most importantly chronic fatigue syndrome researchers lose ground during a major window of opportunity. When that window closes researchers of other disorders have built the infrastructure for future success, ME/CFS researchers have not…. Chronic fatigue syndrome occupies a smaller share of the pie than ever and continues to decline in importance.
NIH Shift Produces Disastrous Results for CFS
Some of it must have been due to research leads that didn’t pan out. But one particularly ill-fated move must have played a major role. The transfer of the CFS research program from the powerful National Institutes of Allergy and Infectious Disorders (NIAID) to the small Office of Research for Women’s Health (ORWH) in the early 2,000’s and the subsequent closing of the four NIH funded CFS research centers directly.
Not only was the ORWH not given any direct funding for CFS but the funding mechanism it instituted…a consortium of Institutes determining whether to fund a disorder they had no direct responsibility for, was, as could have been predicted, to be a recipe for poor funding. Plus no longer did the ME/CFS researcher center directors have control over funding. Now, all research grants were dependent on passing muster at the CFS SEP panel, which rarely had CFS experts.
The closing of the research centers, two of which were lead by Dr. Klimas and Dr. Natelson, had repercussions that still reverberate today.
Over the next five years NIH funds creeps up slowly while chronic fatigue syndrome funding falls almost fifty percent hitting its nadir in 2008.
In 2009/10 the NIH halts the slide returning funding (not accounting for inflation) to 2003 levels.
Inflation Takes a Huge Bite
Unfortunately inflation is a factor – a big factor – that must be accounted for. Taking inflation into account reveals the startling fact that, in real terms, that in 2010 NIH is spending about as much money on ME/CFS as it did in 1993, 17 years earlier and only five years after it began funding CFS research. (The chart below is in thousands of dollars.)
In 1993 federal estimates suggested chronic fatigue syndrome was a rather rare disease but that idea is long gone. Jason’s 1999 paper indicated it affected around 800,000 Americans. A CDC 2003 prevalence paper concluded CFS was ” a major public health problem”. A 2004 CDC paper indicated that productivity losses caused by CFS ran to the tune of 9.1 billion dollars a year.
Still the ‘Yuppie Flu’
None of those startling figures have made the slightest impact on the NIH’s approach towards ME/CFS. With regards to funding, ME/CFS remains the same, small, controversial, disorder the NIH thought it was in 1993. None of the other findings… the low blood volume, reduced blood flows, natural killer cell abnormalities, exercise intolerance studies, genetic, etc. ,etc. have made the slightest difference in the NIH’s commitment to fight ME/CFS…Regarding the most significant factor in medical research – actual money spent on the disease – CFS might was well still be the Yuppie flu…
The trend in funding, of course, mirrors the trend in the number of ME/CFS studies the NIH as funded…
Without several XMRV studies the trend in 2011 would have remained flat; remarkably the NIH is funding about the same number of ME/CFS studies as it did in 1991….and that number is probably going to fall further as a significant number of grants are ending this year. A grant package should have been associated with the State of the Knowledge Conference but none was forthcoming.
Neglect – The governments own studies show ME/CFS is a significant disorder but it might as well be the ‘Yuppie flu’ for all the attention given to it. Something continues to be very wrong at the NIH (and CDC). Until something knocks whatever mindset at the NIH prevents figures there from viewing CFS as a workable, significant disorder; ie as an opportunity for research….funding for this disorder will, most likely continue on in its very petty pace.
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