Waves of Research, The Importance of NIH Funding – ALS Advocate Barbara Johnson

With potential NIH funding cuts, there has never been a more paramount time to advocate strongly for Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig’s disease. With currently no cure for ALS, research is adamant. A prognosis with ALS is 2-5 life expectancy—funding for ALS research is key to making ALS a livable and curable disease. At ALS United Rocky Mountain, we stand up to cutting funding for ALS research with our ALS Advocates.

Barbara Johnson is a research microbiologist (now retired), an ALS Advocate, and living with ALS. Barbara spoke to Senator John Hickenlooper at a panel discussion at the Anschutz Campus in March 2025. Hickenlooper participated in a tour of the labs at the Anschutz Campus and was part of a panel discussion on how NIH funding is and will impact research at Anschutz.

Barbara Johnson advocated the following statement to Senator John Hickenlooper.

“I am Barbara Johnson’s husband, Joel Claypool. I will read Barbara’s introduction and response to the question. Barbara will use a text-to-speech app to respond to any questions.

Thank you for inviting me here today. I was a research microbiologist in the Arboviral Diseases Branch at the CDC Division of Vector Borne Diseases on the CSU Foothills Campus in Fort Collins. After retirement, I consulted for Gavi, the Vaccine Alliance, assessing the capacity of the World Health Organization Global Yellow Fever Laboratory Network in Africa and then with WHO, updating their laboratory manuals for the diagnosis of yellow fever and Japanese encephalitis virus infections. In the fall of 2023, after 8 months of tests and doctor’s visits for seemingly unrelated symptoms starting with hoarseness and shortness of breath, then slurred speech and right-hand weakness, I was diagnosed with bulbar-initiated amyotrophic lateral sclerosis or ALS.

It is unclear to me which NIH grants have been or will be cut. But let me say that there is a panic in the ALS community because cuts to NIH funding for ALS research or clinical trials removes any hope that any of us with ALS have that we will live beyond the 2-5 year expected survival or that ALS will ever be a livable disease. ALS is a fatal, progressive, degenerative motor neuron disease with no cure or effective treatments to conserve function or slow the progression. The only hope for people with ALS is more research into the causes and mechanisms of motor neuron death and clinical trials to discover effective drug treatments.

As soon as I was diagnosed with ALS, I read every research article I could access, joined every webinar presented by ALS researchers, and discussed with my neurologists the current ALS landscape. I was struck by how much ALS research had lagged behind other more well-known neurodegenerative diseases such as Parkinson’s and multiple sclerosis. Until the Ice Bucket Challenge in 2014, there was little funding for research into determining the causes of ALS and few clinical drug trials. However, recently research has intensified, and there are currently more than 30 clinical trials ongoing, the majority of which are supported by grants from NIH.

At my first visit to the neurology department multidisciplinary ALS clinic here at Anschutz, I enquired about clinical trials. Fortunately for me, Anschutz is a site for the Healey ALS Platform Trials, which is based on a model that has been successful in cancer research. One protocol allows researchers to test multiple treatments at the same time with participants in study sites throughout the United States. I was enrolled in the 6th of 7 drug trials for approximately a year. Unfortunately, the drug had no effect on function loss or survival compared to placebo. It will take many more studies to identify drug targets and many more clinical trials until an effective treatment is found. Cuts to NIH grants, including the overhead funding for research institutions, will cause progress towards effective treatments for ALS to slow down or stop altogether.

Now, I am no longer eligible for other clinical trials because I have had ALS for over 2 years, and I can no longer swallow pills. I want to enroll in the ALS Association Expanded Access Program or EAP, which allows people living with ALS, or PALS as we are called, who are not eligible for clinical trials to get free access to investigational new drug treatments. These drug therapies have not been shown to slow ALS progression in all PALS, but they may be effective in subsets of PALS. For example, I have bulbar-initiated ALS, which at first mainly affects motor neurons controlling the face, tongue, and throat muscles. I can no longer speak or eat. The drug Pridopidine, while not effective in clinical trials to slow overall ALS progression, has shown promise in stopping the loss of respiratory and speech functions. Until recently, it was impossible for PALS not eligible for clinical trials to access these drugs, but now, through NIH grants, these drugs have become available. Access to experimental HIV drugs sped up the discovery of lifesaving treatments for AIDS sufferers, and we hope it can for PALS too, as long as NIH continues to fund access to these drugs.

What would give me hope is that NIH would honor the commitments they made in the Accelerating Access to Critical Therapies for ALS Act and Expanded Access Programs to fund the “development of effective interventions for the diagnosis, treatment, management, prevention, or cure of ALS.”

So, I progress. I can no longer swallow because my tongue, lip, and soft palate muscles are atrophied. The degeneration of my vocal cords has taken away my speech. My hands and arms are becoming weaker. The blouse I am wearing I could put on myself 2 weeks ago. Today, I need my husband’s help to dress. I know I will not live to see a cure for ALS. But I do think effective treatments and maybe a cure will be coming.

As a scientist in public health, it has been my life’s work and that of many, many colleagues around the world to improve the health of all people, to be the wave that lifts all boats. Even though I won’t survive this disease, I want to be a part of that wave, to contribute towards an ALS cure. Does NIH really want to cut loose these years of research, one study building on the results of another, all those life-saving waves?”

“Hickenlooper vowed to take these stories back to Washington, D.C., with him in the hopes of persuading Senate colleagues to oppose the funding cuts. He rejected a more confrontational approach, saying that he believes many Republicans in Congress support science and believes a number are “getable” by finding common ground.” (Source: John Ingold, The Colorado Sun)