Today I had the opportunity to address the Chronic Fatigue Syndrome Advisory Committee, an advisory committee chartered by the Department of Health and Human Services. I delivered the following comments:
I sit before you in a wheelchair today because of Chronic Fatigue Syndrome. I am not here to tell you about what this illness has stolen from me, or about the quality of medical care I have received. In fact, if Chronic Fatigue Syndrome were simply a medical problem, I would not waste your time today. But CFS is costing our economy billions of dollars and is a significant public health crisis.
I am here to urge this committee to advise Secretary Michael Leavitt of the true scope of CFS and the burden of this illness. I am here to urge Secretary Leavitt to immediately direct his department to mount a meaningful response to CFS. The current level of investment in CFS research is not just inadequate; it is an embarrassment.
CFS costs an estimated $20,000 per patient per year in lost productivity and wages, according to a study published in 2004. The CDC’s latest prevalence data estimates a patient population of 4 million, which means the impact of CFS on the US economy is as high as $80 billion per year in lost productivity. This number does not include health care or disability costs, so we must assume the true cost of CFS is even higher.
The annual loss of $80 billion dollars in productivity is a significant public problem. With all due respect to the agency representatives here today, your agencies clearly do not allocate resources commensurate to the devastating impact of CFS upon our economy and nation.
Consider that lost productivity due to diabetes cost $58 billion in 2007. Last year, the National Institutes of Health spent just over $1 billion on diabetes research. In other words, NIH invested 1.7 cents in research for every productivity dollar lost. If NIH allocated research funds to CFS as it has to diabetes, then a 1.7 cent investment per dollar lost would translate into $1.3 billion in annual research. Apparently, NIH believes that CFS does not merit such investment. Last year, the NIH spent only $4 million on CFS research, an investment of less than 1/100th of a penny for every dollar lost.
Allow me to illustrate this gross disparity another way. There are 20.8 million Americans with diabetes. By spending $1 billion on diabetes research, NIH invested $48 per patient in 2007. In contrast, NIH’s CFS research program represented an investment of $1 per patient. It is well established that CFS patients are as disabled as patients with end-stage renal disease, multiple sclerosis and AIDS. There is no treatment for CFS, and doctors do not appropriately diagnose us. In contrast, diabetes can be effectively diagnosed and managed, and doctors are quite familiar with how to educate their patients to maximize treatment efficacy. But NIH spent 48 times more money per patient on diabetes research than it spent on CFS in 2007.
The CDC fares no better than NIH in this regard. While the CDC spent slightly more than NIH on its CFS research program last year, I must bring to your attention that the group published only two papers on CFS in 2007 and has only one manuscript in the pipeline at this time. This is further evidence of the erosion of CDC’s research program, about which this committee has long been concerned.
Ladies and gentlemen, this situation is not acceptable.
No reasonable person can be satisfied with claims that there is no more money available for CFS research. Money can be found for high priority problems. Our government is capable of addressing threats to our economy by bailing out endangered banks or flooding the market with economic stimulus checks. Yet here is a clearly documented cost to our economy of $80 billion in lost productivity each and every year, and the best NIH can do is invest a miniscule fraction of one penny for every dollar lost? This is a foolish policy. Our economy needs 4 million CFS patients to return to their jobs, earn their salaries, support their families and pay their taxes. If Secretary Leavitt has been unmoved by the suffering of patients and their families, then perhaps he can be convinced by the numbers.
Do not tell me that we cannot afford more CFS research. The truth is that we cannot afford NOT to make meaningful investments in CFS research.
This committee’s charter obligates you to advise the Secretary of the burdens of CFS, not just on individuals, but on our economy as well. You are obligated to tell the Secretary that the two agencies responsible for researching CFS and finding treatments for it saw fit to spend a tiny fraction of one penny for every dollar of lost productivity last year. You must convince the Secretary that research spending should be made proportional to the size of the problem.
I urge this committee to take whatever steps are necessary to secure meaningful action by the Secretary. I have been ill for 4,962 days. I am waiting for this committee and the Secretary to act. And I do not wait alone. At least four million Americans and their families wait with me.
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