By Michael H. Heggeness, MD, PhD                                                                   Previously published in the May/June issue of SpineLine

Research is how we move our field forward. To learn more about spinal disorders we need more research.  Unfortunately most worthwhile research requires money as well as inspiration and effort.  Despite the fact that back and neck pain complaints are well known to be among the most common and costly causes of disability, the available funding for spinal disorders is meager indeed. Other musculoskeletal conditions are similarly vastly underfunded, both in real terms, and when compared to other federal research grant offerings.

How did this happen?  What can we do?

I was honored to represent NASS at an NIH meeting in 2002.  The meeting was held to inaugurate the “Bone and Joint Decade” and to allow the leadership of several medical societies to “explore areas of mutual interest and pledge to work together on specific programs to foster research and clinical advances in the care of patients with musculoskeletal disorders.”  They were laudable sentiments.

During the day-long meeting, I unfortunately came to understand that the Bone and Joint Decade did NOT represent any substantial commitment from NIH.  The entire financial commitment from NIH was the announcement of a small number of research fellowships with a total funding level of a few hundred thousand dollars.  That was it.

During one of the breaks, I was able to have a conversation with the Director of NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases — the NIH institute that handles funding for musculoskeletal research as well as allergy and skin).  I asked him by what logic did his institute provide more funding for male baldness research, than to the study of back pain (true!!).  His astonishing reply was,  “I suppose that is because we don’t know what causes back pain.”  I bit my tongue fairly hard at that point.

I then asked him what he suggested I might do about that. He (then Chief of NIAMS) looked at the ceiling for a moment and then said: “Probably your best bet would be to try to get a congressman interested.” Thus, the director of NIAMS explicitly acknowledged that his research funding priorities were subject to the direct whim of influential congressmen, and not really much under his control.  Ahhh yes, in the capable hands of congressmen. I do note that the AAOS has since laudably taken action to extend and augment the Bone and Joint Decade, and carry on with an effort called the Bone and Joint Initiative.  I applaud this initiative and hope significant good results.

More recently, in 2011, I attended a conference (helping to represent the AAOS) held in Washington DC.  NIH representatives were announcing the importance of and their commitment to funding comparative effectiveness research.  They highlighted the importance comparative effectiveness research would have in guiding heath care policy in this country.  With great ceremony, the NIH representative presented the SPORT study (yes, wonderfully done) as well as a study on lower limb trauma, and the timing and decision–making associated with amputation.  These two studies represented the ENTIRE funding of comparative effectiveness research in musculoskeletal medicine in the interval from 1980 until present.  It is nice to know that we are a (sic) priority for them.

Truthfully, I have not personally been active enough in the advocacy efforts of the Society.  Thankfully many other energetic and informed NASS volunteers work very hard on advocacy efforts.  The older I get, however, the more insight I acquire into how important this effort is.  How does one influence a congressman?  Doubtless, there are several ways.  Unfortunately the currency in Washington is votes and money, not necessarily in that order.

Cynical?  Perhaps.  True?  Yes, certainly some of the time, perhaps even most of the time.

Let’s talk about the Department of Defense Medial Research grants.  As an alternative to NIH, the DOD separately has, as part of its mission, the charge to fund the medical research relevant to our national defense.  Specifically they study medical issues important to military personnel.  The DOD has historically funded many, many worthy research efforts within this sphere, including head injury, spinal cord injury, long bone fracture and wound healing. (Disclosure: I myself have benefitted from this). The DOD Peer Reviewed Orthopaedic Research Program (PRORP) included $30 million in funding for 2012 (a 25% increase in funding compared to prior year).  PRORP was established in 2009 and has distributed $158.5 million 2009-2011 and $30 million budgeted for 2012. PRORP is administered by the office of “congressionally-directed medical research programs” within the Department of Defense!!  I have noted a shift in the priorities of the medical research grants. These priority shifts are consistent with effective special interest lobbying efforts.

As an example, in the most recent announcement (2012), congressionally–directed medical research proposals (CDMRP) were offered in the following PRIORITY areas:  breast cancer, ovarian cancer, prostate cancer, neurofibromatosis, Gulf War syndrome, and tuberous sclerosis.  (Yes, I also had to look up tuberous sclerosis to know what it was.)  And no, I have no problem with funding research on Gulf War syndrome.  However, do the other priorities look right to you?  Remember, all of these areas are already well funded by NIH.

Shall we look at the amounts of DOD CDMRP funding offered in 2012?

  • breast cancer:  $120 million
  • prostate cancer: $80 million
  • ovarian cancer:  $16 million
  • neurofibromatosis : $12.8 million
  • autism : $5.1 million

Another 22 health areas will share a remaining $50 million.  The breakdown is interesting.  For example:

  • spinal cord injury:  $9.6 million (Yes!)
  • tuberous sclerosis:  $5.1 million  (huh?)
  • amyotrophic  lateral sclerosis :   $6.4 million  (??)

Excuse me?  I cannot call this a conspiracy.  But in my humble opinion, lobbying efforts for some specific diseases have tipped some of our national medical research priorities on its ear.  To be clear, I greatly respect the sincere good will of groups like the breast cancer lobbyists.  They are trying to make the world better by supporting research on major health care concerns. Unfortunately, what results is a distorted, perversely frustrating funding mechanism.  This mechanism relies more on lobbying members of Congress than it does on scientific merits or societal imperatives.  Huge amounts of additional research funding for certain diseases are now being provided through this “congressionally directed” medical research program within the DOD.

Sadly, the money does not come from the cancellation of pork projects like “bridges to nowhere” nor from diminished bailouts for predatory investment bankers. Instead it comes from redistributing other medical research dollars. Allocation of funding for research that is so profoundly affected by a congressional lobbying process hurts our field and hurts our patients. Do we stand a chance to tip things back a little in the direction of our field?

Asking for more money for anything is difficult in these challenging economic times.  Clearly the medical community has been advocating for physician reimbursement issues, for malpractice reform and many other very worthwhile issues.  We have had both successes and failures on these fronts. However, we have lost ground badly in the research funding arena. We gratefully acknowledge the research support of industry (thank you!), and of various nongovernment funding sources such as OREF, NASS and other societies that has helped.  Research on the pathophysiology of spinal disorders remains egregiously underfunded. I don’t have a solution at the moment, but recognizing the problem exists is perhaps a first step.

Thank you for the use of this soapbox.  If you are interested in helping us with our advocacy mission we would love to hear from you. Please contact us at advocacy@spine.org.