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. 

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What Is the Extramural Component of NINDS and How Does it Work?

In a previous column, I described NINDS as including the Office of the Director, and two components that serve, respectively, extramural and intramural research. In the next two columns, I will explain, in turn, how each of these components of NINDS work.

“Extramural research” occurs at institutions other than the NIH. NINDS and the other Institutes at NIH fund extramural research through grants, cooperative agreements, and contracts. In fact, NIH is the largest funder of “outside” (i.e., extramural) research in the world!

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