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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Combating Pain and Preventing Addiction

September is Pain Awareness Month. In recognition of this, NINDS Director Walter Koroshetz and National Institute on Drug Addiction (NIDA) Director Nora Volkow have written a blog post highlighting NIH’s efforts to foster research, education, and patient care.

Pain is a symptom, a condition, not a disease.  But do not let this fool you.  Pain is among the most common and most disabling conditions known.  It can be acute (sudden in onset and relatively short-lived) or chronic (long-lasting).  Acute pain, most often with a known cause, sometimes becomes chronic pain.  Often, it is not known why the transition occurs or why the pain persists.

It is estimated that between 20 and 30% of people have been affected by pain that lasted at least 24 hours in the past 6 months.  Pain can afflict anyone at any age.  While scientists have learned a great deal about pain and have developed medications, devices, and techniques that counteract some of the steps in the pathway that leads to initiation, production, and perception of pain, many medications that are effective against pain are addicting and those that are not are ineffective against the most severe and most chronic painful conditions.

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Diversification of the Neuroscience Workforce: Not One Size Fits All

In August 2019, NINDS welcomed more than 35 female Prince George’s County Public School STEM students at the Girls Navigating Neuroscience program (click image to learn more)
Image Credit: Chia-Chi Charlie Chang

Given that the word “diverse” means “made up of many different kinds,” it has always seemed odd to me that we think of the process of diversification in one dimension only. Recent studies have suggested that not only the degree but also the nature of diversification within the biomedical workforce differs among race and ethnicity, gender, level of expertise, and programmatic career focus. There can be no single specific recipe for achieving equity and inclusion; it requires, rather, a living, evolving, and creative cookbook!

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Neuroscience on the NIH Campus and the NINDS Intramural Research Program

So far in this blog, we have talked about two major components of NINDS: the Office of the Director, which oversees and supports everything NINDS does, and the extramural program, which supports research being done in labs throughout the United States and around the world. Here I will discuss a third component to NINDS—our own research program housed on the NIH campus in Bethesda, Md.

John Edward Porter Neuroscience Research Center, NIH Campus, Bethesda, Md.

In many ways, the NINDS Intramural Research Program (IRP) is very much like a research center or the research component of a department at a university medical center elsewhere in the United States. There are principal investigators—doctors and scientists who run laboratories and research clinics that perform basic, translational, and clinical research. These labs also support experienced staff scientists and staff clinicians; post-doctoral fellows—scientists who have finished graduate school but are continuing their training; residents and fellows who are doctors getting more specialized training in neurology or neurosurgery; and graduate and post-baccalaureate students.

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We May Have Come So Far, But We Have Yet So Far To Go

The history of medicine, like so much of the history of everything human, is replete with examples of abuses of power (both physical and philosophical)—acts born of ignorance, stolen credit, and false credentials. One has only to recall the surgical methods developed by Dr. Marion Sims, an American physician, as he operated without anesthesia on enslaved Black women and the experiments conducted on the Tuskegee Airmen, Black military pilots who fought in World War II, from whom diagnoses were hidden and treatments were withheld all while considerable data were collected. So-called “studies” of many kinds conducted on specific ethnic, religious, or medically defined groups fill the annals of intra- and international affairs.

Since the Declaration of Helsinki, a statement of ethical principles for medical research involving human subjects adopted in 1964, we have truly come a long way. The ultimate aim and benchmarks of success were changes in international culture, the collective definition of common human decency, and proper conduct in regard to research on human subjects. You will note, however, that the practical road to that ideal began with regulations and policy; grassroots and committee-led enforcement of practice and reporting; and institutional and governmental oversight and enforcement of consequences for deficient practices.

But changing culture takes much longer. And rebuilding trust and establishing the kind of comfort level that allows people to speak out about important issues and to participate in a clinical trial or a research study takes even longer and requires human interaction on a personal level.

So, what has NINDS done to try to move the needle? How is NINDS making clear to people of color, and specifically Black people, that not only do their lives matter to us, their health, well-being, and voices as part of our NINDS family matter as well? Dr. Koroshetz, the NINDS director, has also published his thoughts in a new Director’s Message.

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