Proportional Underfunding of CFS Research

This is from the public comments given to the Chronic Fatigue Syndrome Advisory Committee on May 5-6, 2008, available in full at- http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac080505min.html
  
  It is a very informative accounting on the amount of money spent by the NIH and CDC on CFS compared to other diseases, as well as the financial impact of CFS compared to other illnesses.
  
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  Public Comments  Jennifer, Pennsylvania
  
  Accompanying Document: Public Comments
  
  I sit before you in a wheelchair today because of CFS. I'm not here to tell you about all this illness has stolen from me or about the quality of the medical care that I've received. In fact if CFS was simply a medical problem, I wouldn't waste your time. But CFS is costing our country billions of dollars and is a significant 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 U.S. economy is as high as $80 billion per year. That does not include healthcare or disability costs, so we can assume the true cost of CFS is much higher. The annual loss of $80 billion a year in productivity is a significant health problem. With all due respect to the agency representatives here today, your agencies clearly do not allocate resources on a scale commensurate with the problem.
  
  Consider that lost productivity due to diabetes cost $58 billion in 2007. Last year, NIH spent just over $1 billion on diabetes research. In other words, NIH invested 1.7 cents 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 dollars in annual research. Apparently NIH believes that CFS does not merit such investment. Last year the NIH spent only $4 million in CFS research—an investment of less than one one-hundredth of a penny for every productivity 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 one dollar per patient. It's 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 properly 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 has spent on CFS in 2007.
  
  The CDC fares no better than NIH in this regard. While the CDC spent slightly more than NIH on CFS research last year, I must bring to your attention that the group published only two papers in 2007 and only one manuscript is in the pipeline 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 spend a fraction of a penny for every dollar lost. This is 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 we can not afford not to invest more in CFS research. And to answer Dr. Kitt's rhetorical question about increasing the number of applicants, if you build it, they will come. If there is money, they will apply.
  
  You are obligated to advise the Secretary of the burdens of CFS, not just on individuals, but on the 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 productivity dollar lost 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 from the Secretary.
  
  I have been ill for 4,962 days and I am waiting for this committee and the Secretary to act. And I do not wait alone. At least 4 million Americans and their families wait with me. I thank you for your attention.
  
  Dr. Oleske: In your written statement, if you have a reference on the one penny per productive time lost, if that's published anywhere.
  
  Jennifer: Those are my calculations based on publicly available numbers for research dollars spent, prevalence, etc.
   
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If research money had been available proportionate to the number of patients afflicted, there would have been a treatment for CFS long ago.  Instead, much of what little research money was there, was wasted on trying to find a psychiatric basis for a neurologic illness.  And much of the reason was politics.  Straus having come up with the "depressed menopausal women" theory, his employer was unlikely to want to prove him wrong, so they wasted years looking into depression, stress, and other emotional causes ... results which could only be achieved by polluting their patient pools with people who really did have depression or emotional illnesses, rather than people who have the same symptoms as the Incline Village and Lyndonville epidemics.

When private research funding determined that an anti-viral called Ampligen helped CFS patients, the drug was not FDA-approved (it's been approved for use in other countries by their equivalents to the FDA), for the simple reason that the FDA could not, would not, prove Straus wrong by approving an anti-viral drug for what he had said was a purely psychiatric problem.

Instead of verbally abusing patients because we are applying for Disability benefits, why don't people verbally abuse the government agencies whose refusal to do adequate research has ensured that we are unable to work?  

Yes, the cost of Ampligen treatment is substantial, but it's less than the loss of my economic contribution to the country.  If it were FDA-approved, and the government agreed to subsidize the first year of treatment, I could go back to work and earn enough to pay for the rest of the treatment myself.  Instead, over my lifetime, the government will lose the economic impact of over a million dollars in income that would be spent buying goods and services, and tens of thousands of dollars of taxes paid on that income.   Instead, I buy little more than absolute necessities for myself and my business, and earn too little to even be required to file a 1040. 

The choice to remain sick and unemployable is not mine: it's the government's.   Yet I am the one who takes the flak for their inaction.