Important research will be reduced as a preventative measure against chronic diseases in RFK Jr. Champion

Robert F. Kennedy Jr. talks about the “existential threat” that he said could destroy the country.

“We have the highest burden of chronic illnesses in every country in the world,” Kennedy said at a January hearing before the Senate confirmed him as the secretary to the Department of Health and Human Services.

And on Monday, he began touring the Southwest to promote programs to combat chronic diseases and highlight nutrition and lifestyle.

However, since Kennedy has taken on his post, major grants and contracts that directly address these diseases, such as obesity, diabetes and dementia, where experts agree that it is one of the nation's major health issues.

These programs range in size and cost. Researchers warn that their end mise could mean a lost opportunity to address the aspects of public health that Kennedy said is his priorities.

“This is a big mistake,” said Dr. Ezekiel Emmanuel, co-director of the Institute for Healthcare Transformation at the University of Pennsylvania Perelman School of Medicine.

Decades of diabetes research have been cancelled

Since its inception in 1996, the diabetes prevention program has helped doctors understand this fatal chronic disease. The condition affects 38 million Americans and is the most expensive in the country, paying $36 million directly in the last year. In 2021, it was the eighth major cause of death with around 400,000 deaths.

The program has ended and the reason has little to do with its merits. Instead, it appears to be a problem with the lead investigator working in the wrong place at the wrong time.

The program began when doctors at 27 medical centers received funding from the National Institutes of Health for a study asking if type 2 diabetes could be prevented. 3,234 participants were at increased risk of illness.

The result was a huge victory. Those assigned to follow a healthy diet and exercise routine regularly reduced the likelihood of developing diabetes by 58%. Those who took metformin, a blood glucose-lowering drug, reduced their risk by 31%.

The program has entered a new phase led by Dr. David M. Nathan, a diabetes specialist at Harvard Medical School. Researchers followed participants to see how they were carrying them without the constant attention and support of clinical trials. The researchers also looked at their genetics and metabolism, examining measures of frailty and cognitive function.

A few years ago, investigators had an idea. Several studies have suggested that people with diabetes are at a higher risk of dementia. However, scientists didn't know if it was vascular dementia, Alzheimer's, or an exact risk factor. The diabetes program can focus on investigating this in 1,700 aged participants.

The group added a new lead investigator, Dr. Jose A. Luxinger, a dementia expert. For administrative reasons, including a new focus on dementia, the program decided that money should flow through Columbia University facilities, through Harvard University and George Washington University, where the third principal investigator works.

On March 7, the Trump administration cut $400 million in grants and contracts to Columbia, saying Jewish students were not protected from harassment during protests over the war in Gaza. The diabetes grant was one of the $16 million endings that Columbia shared with 30 medical centers. The research ended suddenly.

Asked about the firing, Andrew G. Nixon, communications director for health and human services, provided a statement saying, “anti-Semitism clearly contradicts the fundamental values ​​that should inform liberal education,” and that “columbia University's self-satisfaction is unacceptable.”

When their grant ended, researchers began advanced cognitive testing of patients' evidence of dementia, followed by brain imaging in search of amyloid, a characteristic of Alzheimer's disease. They were scheduled to complete the tests over the next two years.

Dr. Luxinger later said the group was trying to look at other signs of dementia, including amyloid blood biomarkers and brain inflammation. For comparison, they planned to perform the same tests on blood samples of participants from seven and 15 years ago.

“There are few studies that go back far back and collect and store blood,” Dr. Luksinger said.

Currently, much of the work cannot be started, and the parts that have started remain incomplete.

Another troubling question the researchers hoped to answer was whether metformin would increase or decrease, or not affect the risk of dementia.

“This is the largest and longest study of metformin to date,” Dr. Luxinger said. Participants assigned to take the medication in the 1990s took it for over 20 years.

“We thought there was a chance we could rest this question about metformin,” Dr. Luchsinger said.

The only way to save the program is for Kennedy to agree to recover funding in Columbia or transfer the grant to a lead investigator at another medical center, Dr. Nathan said.

Research investigators are attractive to the Congressional Diabetic Caucus and hope that it will help them make their claims to health and human services.

“The lawmakers and the senators might win and say, 'This is crazy, this is a chronic illness, this is something you want to study,'” Dr. Nathan said.

So far, there have been no changes.

Include diversity. In fact, it's too diverse.

Compared to diabetes prevention programs, the program to become a scientist is small to become a pediatrician. However, pediatric researchers say the pediatrician development program will help ensure chronic pediatric illnesses are included in medical research.

It started forty years ago when the pediatric chair asked for the program to be created. It has been continuously funded by the National Institute of Child Health and Human Development.

Participants are clinicians trained in specialist areas such as endocrinology and nephrology, practiced as clinicians, and were inspired by research to help young patients with a direct-looking disease.

A highly competitive programme will pay seven to eight pediatricians to train in a university medical center for a year, combined with mentors, giving time from clinics to research conditions such as obesity, asthma, and chronic kidney disease.

Looking back, the fate of the program was sealed in 2021 when its leader applied for grant renewal. It was like a pro forma. This was the 8th update.

However, this time, an external committee of grant judges told investigators that the biggest weakness of their proposal was their lack of diversity. The program required the search to find pediatricians who represent diverse ethnicities, economic backgrounds, states, type of research, and pediatric specialties.

The criticism stated, for example, that “we must pay attention to recruiting applicants from a variety of backgrounds, including from groups that have been shown to be nationally underrepresented in biomedicine, behavioral, clinical and social sciences.”

So program leaders were free to sprinkle diversity through rewritten grant applications.

“Weill Cornell Medical College's Professor and Chair of Pediatrics and Program Director, Dr. Sallie Permar said: “That was exactly what the reviewers evaluated when we resubmitted.”

The grant was renewed in 2023. It's currently finished. reason? Diversity.

The firing letter from an official at the National Institute of Pediatric Health and Human Development said there was no point in trying to rewrite the grant request. With diversity inclusion, the application is off line, which means that “project changes could not be tailored to agency priorities.”

Nixon, a spokesman for the Department of Health, did not respond to questions regarding cancellation of the pediatric program.

Participants in the program are distraught.

Dr. Sean Michael Cullen studied childhood obesity in Weill Cornell, New York. He investigated why male mice who kept high-fat diets produced fatty offspring, even when those offspring were fed a standard diet.

He hoped that his findings would help predict which children are human and at risk of obesity so that pediatricians could try to intervene.

Now the funds are gone. He may seek private or charitable funds, but he has no clear prospects.

Dr. Evan Rajadhyaksha is in a similar situation. He is an expert on pediatric kidney disease at Indiana University. When he was a resident, he cared for a girl who developed kidney disease due to a condition in which some urine was washed away from the bladder into the kidneys.

Dr. Rajadhyaksha hypothesizes that vitamin D supplementation can protect children in this state.

Now the job has to stop. Without funding, he hopes to quit his research and return to clinical research.

Dr. Palmer said she hadn't given up. The program costs just $1.5 million each year, so she and her colleagues are looking for other support.

“We're looking for a foundation,” she said. “We're starting to ask the industry. We didn't have industry funding. Are you happy to ask undergraduate chairs and children's hospitals about fundraising?”

“We're literally looking under all the sofa cushions,” Dr. Palmer said.

“But federal support for the program is “a foundation and cannot be replaced,” she said.