WASHINGTON — The director of the National Institutes of Health testified before Congress on Tuesday that the agency wants to restore confidence in the wake of the COVID-19 pandemic by solving some of the nation’s biggest health challenges.
Monica M. Bertagnolli told the House panel responsible for funding the agency that one of those focus areas is rare diseases because private, for-profit companies often won’t take on the financial risk of developing gene therapies.
“What if you are a parent of a child suffering from this rare disease?” Bertagnolli said. “We know that if we work hard, our technology can cure this child.”
Bertagnolli said during the two-hour hearing that NIH plans to soon begin “delivering more of our gene therapy pipeline for rare diseases” and is working with the U.S. Food and Drug Administration to ensure a velvety process.
“We will manufacture and test them at the NIH clinical center. And then when they are ready for marketing and production – at that point, after everything is completely de-risked – we hand them over to the for-profit sector with the absolute requirement that the people who need them can access them,” Bertagnolli said .
The NIH, she told lawmakers, is responsible for the health of all Americans and will work with the private sector on projects but “cannot abandon these patients and these families.”
Bertagnolli told the House Labor, HHS and Education Appropriations Subcommittee that working to address health challenges is one of several ways the NIH is working to restore Americans’ confidence in the wake of the global pandemic.
“We do not gain people’s trust by issuing public notices. We don’t win people’s trust by saying, ‘We’re smart, we know what to do, we’re the scientists,'” Bertagnolli testified. “We gain people’s trust by solving the problems they need solved.”
Science, not politics
Bertagnolli also sought during the hearing to strengthen basic scientific understanding about public health and push back against political ideas about infectious disease research.
“The NIH focuses primarily on science, not policy,” Bertagnolli said. “We actually have an integrity mandate against political interference in our work. For us, that is the law and we strictly adhere to it.”
Bertagnolli noted that if the NIH stopped researching diseases, mortality rates would escalate.
“We face some serious threats. I mean, look at the news today, H5N1 is scary for us and we’re engaged in risk assessment and mitigation and working with our other federal agencies to make sure that we can protect and mitigate whatever happens if this Virus does something bad,” said Bertagnolli. “We can’t afford to neglect this or people will die.”
H5N1, also known as highly pathogenic bird flu, has caused significant disruptions For years it was common on poultry farms across the U.S., but in March of this year it appeared in dairy herds, setting off alarm bells among health experts.
So far, 53 people have been diagnosed with the virus, although the risk to the general public is low.
NIH Tasks
The NIH consists of 27 different centers and institutesincluding the National Cancer Institute, the National Institute on Aging, the National Institute of Neurological Disorders and Stroke and the NIH Clinical Center, also known as America’s Research Hospital.
Congress approved $48 billion in discretionary funding for the NIH in March as part of a full-year spending package.
The NIH writes about this Budget website that 84% of its funding goes to “non-academic research, largely through nearly 50,000 competitive grants to more than 300,000 researchers at more than 2,500 universities, medical schools and other research institutions in every state.”
“In addition, approximately 11% of NIH’s budget supports projects conducted by nearly 6,000 scientists in its own laboratories, most of which are located on the NIH campus in Bethesda, Maryland,” it said. “The remaining 6% covers research support, administrative and facility construction, maintenance or operating costs.”
Bipartisan support for funding
The NIH has long enjoyed broad bipartisan support in Congress, particularly from members of the Budget Committee.
That continued Tuesday as the majority of Democratic and Republican lawmakers on the panel asked real questions about NIH research, funding and future plans.
Alabama Republican Rep. Robert Aderholt, chairman of the subcommittee, said there is “no doubt that every life is touched by the discoveries made through investments at the NIH.”
Aderholt encouraged Bertagnolli to make it a top priority to “restore confidence in the NIH as a leader in unbiased, impartial, objective basic science.”
A Pew Research Center survey Published earlier this month showed that 76% of Americans had some or a lot of “trust in scientists to act in the public’s best interest.” That represents a slight rebound in public trust in scientists after a steady decline since the start of the pandemic, according to Pew polls.
89 percent of respondents said researchers were wise, while 65 percent said they focused on solving real-world problems.
Connecticut Democratic Rep. Rosa DeLauro, the panel’s ranking member, praised Bertagnolli for “ensuring that NIH’s life-saving research reaches more places and more patients, especially in rural communities.”
“And she understands that health policy must be based first and foremost on science and data,” DeLauro said.
She said NIH funding aims to better understand numerous diseases facing Americans, including ALS, Alzheimer’s, cancer, diabetes and mental illness.
The agency also provides research funding to address several health challenges facing women, including maternal mortality, as well as other areas that have been ignored or underfunded in the past.
“NIH-supported research puts us on the cusp of a cure for endometriosis and increases investment in menopause, which will ultimately affect half of our nation’s population,” DeLauro said. “But there’s still a long way to go.”
Last updated on November 19, 2024 at 4:54 p.m
