Vyondys 53: patented from NIH-funded research

University of Western Australia reported a patent on it to NIH as an invention made with NIH grant money.

Patent reported as grant-fundedOrphan drug

Reported

–

Medicare paid, 2025

before rebates

Calculated

–

Medicare, 2020–2025

Reported

–

Medicare, 2026 Q1

the newest quarter CMS has published

Reported

$1.5M

NIH grants behind the patents

whole-grant totals, not the drug's cost

The public record, link by link

1 · Public research
NIH grant to University of Western Australia, $1.5M in all.
2 · Patent
RE47691, reported to NIH under R01NS044146.
3 · FDA approval
Approved Dec 12, 2019, sold by Sarepta Therapeutics (NDA 211970); orphan-drug exclusivity runs to Dec 12, 2026.
4 · Public pays
Not in the Medicare Part D or Part B files, or Medicaid's. It may be off the market, generic now, or paid for inside hospital stays.

The grants

Totals are everything NIH paid on each grant since 1985. A grant usually funded more than this one invention.

Antisense oligonucleotide suppression of non-deletion DMD causing mutations
R01NS044146 · University of Western Australia · NINDS · 2004–2012
$1.5M

The patents

Patents the FDA lists for this drug that were also reported to NIH as grant-funded inventions.

US RE47691
ANTISENSE OLIGONUCLEOTIDES FOR INDUCING EXON SKIPPING AND METHODS OF USE THEREOF
Reported by University of Western Australia
FDA-listed expiry Jun 28, 2028

Sarepta Therapeutics's side

Drug makers pay for the clinical trials that take a compound from the lab to FDA approval, and they pay royalties on licensed patents. Those terms are not public. Sarepta Therapeutics's page shows its other products on this list, its federal awards, its PAC's giving and its lobbying. If Sarepta Therapeutics wants to add its account, we will publish it here.

How this is built. A product is listed for one of two public records. Either NIH's Technology Transfer office lists it as an FDA-approved product built on a license from an NIH, CDC or FDA lab, or a patent the FDA lists for the drug was reported to NIH as an invention made with NIH grant money, as the Bayh-Dole Act requires. We then add what Medicare Part D, Part B and Medicaid paid for each product, and for each company, the federal grants and contracts it received, its PAC's donations and its lobbying.

What the numbers mean. Medicare and Medicaid figures are gross spending before the rebates drug makers pay back, which are confidential. Hospital-administered therapies such as CAR-T cell treatments are mostly paid under Medicare Part A and do not appear in these files. "NIH grants" is everything NIH paid on the grants a patent was reported under, from 1985 on; a grant usually paid for more than one invention, so it is not the cost of the drug. Federal contracts include purchases, such as vaccine doses, as well as research. Companies also paid for the clinical trials that took these products to approval. None of these figures shows that public money set a price or bought a decision.

Sources: NIH Technology Transfer: FDA-approved products licensed from NIH, CDC and FDA labs; NIH RePORTER patents reported under NIH grants (from iEdison); NIH RePORTER project funding; FDA Orange Book patent, exclusivity and product files; CMS Medicare Part D and Part B Spending by Drug (annual and quarterly); CMS Medicaid Spending by Drug; USAspending.gov federal grants and contracts. Updated 2026-11-06.