What Can NIH Do? What Can’t NIH Do? How Can We Work Together?

My recent column about post-acute COVID syndrome generated a lot of feedback, and one of the most common questions I got asked is, “Why don’t you tell Congress they need to allocate funding for [Disease X]?  It is so common, so disabling, so deadly, and so costly for patients, families, and society.  You need to tell them to allocate a fraction of their budget to conquer [Disease X].” 

This common question has a very, very simple answer: It is against Federal law for NIH or any Federal employee to lobby Congress.  We simply cannot advocate for ourselves, our scientific community, or specific patient and family constituencies.  We are permitted to educate members of Congress, but even that, only when asked to do so. 

Another question I am often asked is, “Why doesn’t NINDS just declare that, this year, we are going to spend our money on understanding, treating, and curing [Diseases A, B, and C] because they are so prevalent and so negatively impact  the lives of patients and families.”  Each NIH institute has a different way of making its funding decisions.  While Congress has allocated funds to some disease- or condition-specific programs that NINDS leads or co-leads, NINDS generally has not. 

This decision grows directly from our long-term vision and strategy.  Our vision sets its sights on easing the burden of patients with neurological disorders – not a specific type of patient or a specific neurological disorder, but all people affected by any and all neurological disorders. 

Our strategy takes into account two cross-cutting principles:

  1. We are absolutely committed to funding the very best science no matter what its focus.  Grants are reviewed by groups of experts who score each grant in several areas, including the significance of the questions asked and the approach chosen to answer them.  NINDS, to a first approximation, comes to funding decisions intent on funding the grant applications that the expert groups scored as the best, because supporting  flawed science leads us all – patients, scientists, the public – down a fruitless path after giving all of us false hope.  
  2. We cannot possibly predict  where (what discipline, what disease or basic science focus, what race or religion or ethnicity or regional association investigative team) will come the “answers” to the questions of Disease A, B, or C.  (Check out the spinoffs of NASA’s space program if you don’t believe me! https://spinoff.nasa.gov/spinoff2003/hm_3.html). 

My own lab and others have discovered a mechanism by which a cancerous tumor grows and invades normal tissues.  This very basic knowledge made us realize that a drug currently researched and developed for pneumonia caused by a parasite might be effective against some forms of cancer.  A clinical trial is now ongoing.  We never would have guessed that our question about cancer would be answered by research in parasitology and infectious diseases.  Nor, I would conjecture, would the parasitologists who developed their anti-pneumonia strategy have guessed that it might be useful someday to combat cancer.

So how can you help us ensure that the important questions are being asked and the important issues are being addressed by the research we do and fund at NIH?  That is where all the truly wonderful advocacy groups – the nonprofit organizations that focus on research, education, advocacy, and patient and family assistance with a specific disease-focused agenda – come in.  These groups can, do, and should advocate for disease-specific and general science funding.  They do provide resources, a public voice, and opportunities to educate and advocate to Congress and to their constituencies. 

NINDS hosts many visits for these organizations, so we can learn what their constituencies most need, and they can learn from us what we are currently doing.  Advocacy groups are also fantastic facilitators of getting the best scientists and future scientists to focus on particular disorders in their research and they often connect young scientists with those at NINDS who can guide and advise them regarding funding and grantsmanship. 

In truth, what you can do is to complement NINDS by doing what we cannot do and by connecting those who are not aware of the services we can provide to us.  Without our partnership, science, medicine, and hope would all be in much shorter supply!