[Congressional Record Volume 171, Number 37 (Tuesday, February 25, 2025)]
[Senate]
[Page S1347]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
By Mr. REED (for himself and Mrs. Capito):
S. 705. A bill to amend the Federal Food, Drug, and Cosmetic Act with
respect to molecularly targeted pediatric cancer investigations, and
for other purposes; to the Committee on Health, Education, Labor, and
Pensions.
Mr. REED. Mr. President, today, I am joining Senator Capito to
introduce the Innovation in Pediatric Drugs Act of 2025 in order to
improve access to needed therapies for children.
Children are not just small adults. Drugs affect their developing
bodies differently, so new treatments need to be studied carefully to
ensure that they are appropriately prescribed and that dosages are
properly adjusted. Additionally, drugs that are designed to treat a
specific condition in adults may have enormous benefits in treating
completely different illnesses in kids. But research is needed to
unlock these potentially lifesaving possibilities.
Unfortunately, drug development still leaves children behind. The
legislation we are introducing today would help speed therapies to
children who need them by making needed changes to the Best
Pharmaceuticals for Children Act, BPCA, and the Pediatric Research
Equity Act, PREA--two laws that encourage and require the study of
drugs in children.
Data resulting from BPCA and PREA studies are added to drug labels to
give parents and providers essential information on the safety and
efficacy of drugs used in children. I was proud to have helped author
these laws when I was a member of the Health, Education, Labor, and
Pensions Committee. While we have made tremendous progress in advancing
treatments for children because of these laws, there are gaps. For
example, there is a loophole in PREA that exempts drug companies from
pediatric study requirements when the treatment would only be used for
a rare pediatric condition.
There are close to 7,000 rare diseases without appropriate
treatments, and the vast majority of these diseases affect children as
well as adults. But in developing new drugs also known as orphan drugs
to treat rare diseases, pharmaceutical developers focus their research
on adult patients only since they are not required to study their
impact on children.
Since the majority of new drugs approved by the Food and Drug
Administration, FDA, are orphan drugs, this means that the majority of
newly approved drugs have not been studied for their impacts on kids.
This leaves doctors, parents, and sick kids in the dark about the best
possible treatments. Our bill closes this loophole to require studies
for children so that that they, too, can benefit from new and
innovative treatments for rare diseases.
In addition to this change, the Innovation in Pediatric Drugs Act
would invest in pediatric studies of older, off-patent drugs. The FDA
incentives and requirements under BPCA and PREA work for many newer
drugs, but unfortunately cannot help encourage studies of older drugs.
For this reason, in 2002, Congress authorized a program which funds the
National Institutes of Health to conduct studies of off-patent drugs
used in children that would never be completed otherwise. Drug studies
are expensive, and costs have only increased since then, but the
program has been flat-funded at $25 million since it was created more
than 20 years ago. Our legislation would increase the authorization for
the BPCA NIH program to ensure we have better data about older drugs to
treat diseases in children.
Lastly, the Innovation in Pediatric Drugs Act would give FDA the
authority it needs to ensure that legally required pediatric studies
are completed in a timely manner. Due dates for studies required by
PREA are typically deferred by FDA until after the approval of the drug
for adults, but FDA has no effective enforcement tools to ensure that
these studies are completed on time--or at all.
I am pleased to be working with my colleague Senator Capito again on
pediatric health issues. We have worked closely for many years on
pediatric cancer, first authoring the Childhood Cancer Survivorship,
Treatment, Access, and Research, STAR, Act in 2015. That bill was
signed into law in 2018, and we worked to fully fund the law every year
since.
I look forward to working with her to move the Innovation in
Pediatric Drugs Act forward, to give children and their families more
options for treatments.
______