New York is known to be a high-tax and higher spending state. So, it’s curious that it is attempting to violate federal law and deny dying children the gene therapy they need to survive and thrive.
On Friday, October 3, 2025, the New York Drug Utilization Review Board (DURB) meeting opened with board member and the state’s Department of Health’s Deputy Commissioner of Office of Health Care Delivery Dr. Doug Fish saying, “It’s a beautiful Friday morning here in New York”, before casting a dark cloud over children suffering from Duchenne Muscular Dystrophy (DMD) and their parents.
It’s especially puzzling because when Dr. Fish’s office was created this year, Department of Health commissioner Dr. James V. McDonald wrote that the position was created “Consistent with Governor Hochul’s vision of Building a Stronger Health Care System for the Future” in order to “focus on the whole continuum and a broader health care strategy.” He explained that the restructuring “furthers the vision to protect and promote health and well-being
for all, building on a foundation of health equity.”
What does this mean in practice? Let’s explore that. The board heard testimonials from parents about how the small biotech company Sarepta Therapeutics’s FDA-approved gene-therapy drug Elevidys halted their children’s worsening DMD, improved their mobility, and enhanced their quality of life. One mother testified that her son gained strength, confidence, and independence after receiving Elevidys, which allowed him to keep up with his peers. Another mother shared that Elevidys didn’t just stop her son Anderson from getting sicker but also improved his North Star Ambulatory Assessment score; he could resume climbing mountains and riding his bike.
The board then elected to pause State Medicaid coverage for the treatment. Why would an office specifically created this year to “promote health and well-being for all” restrict the populations that need it most?
The New York DURB fixated on a cost-benefit analysis of treatment for rare disease. The 21 cents this coverage may add to cost of each Medicaid member’s monthly membership was determined to be not worth it, prioritizing savings over patients. This type of non-medical analysis has drawn ire from not only the left, but also many on the right (myself included) when used by private health insurance companies. But I didn’t see it coming from New York State.
It is a dangerous precedent to prioritize fiscal health over patient health. We cannot allow other states or private insurers to follow suit, believing such intolerable inequities are now permissible.
The board also prioritized care for patients aged four to five, seemingly without reason, especially considering the FDA expansion to cover patients, age four and older, and the evidence FDA reviewed that boys aged seven to nine who received Elevidys saw immediate functional improvements.
There isn’t data to support denials based on age and severity, just the prevalence of budget margins and a bottom line. That’s apparently the new standard in New York State. It should concern all of us.
Despite financial concerns, New York Medicaid provides coverage for other treatments deemed more important than the only FDA approved DMD gene therapy on the market. New York proudly covers gender-affirming care for minors including hormone therapy, puberty blockers and gender reassignment surgery. The state even pays for healthcare for undocumented migrants while also providing doula services and non-emergency medical transportation.
Yet a gene therapy that offers children with rare disease a reprieve does not receive the same basic dignity.
This decision was not only a destruction of the last resort hope Duchenne children find in Elevidys and a shirk to humanity, but also an inappropriate exercise of the board’s authority. Federal Medical Law SSA 1927 requires
states to cover FDA-approved drugs with rebate agreements for their medically accepted uses. A pause directly disobeys the Federal requirement.
Massachusetts helped set legal precedent for this. When the state sought SSA 1115 flexibility, which historically allows states to make changes to their Medicaid programs that may not align with standard federal requirements, to exclude categories of drugs, including accelerated-approval products, while still collecting federal rebates, CMS said the state could only do that by dropping Section 1927 drug coverage entirely, forgoing all federal Medicaid rebates, and negotiating directly with manufacturers. Of course, New York has not done this, so Section 1927’s coverage obligations still apply.
The law doesn’t permit Governor Hochul to have it both ways. If New York wants a closed formulary, she must start planning on how to tell voters that they’re forfeiting federal rebates.
This approach backs families with few options into an even darker corner. They are stuck in turmoil, forced to fill out paperwork for an exception, hoping that the bureaucrats who shut them down reverse course. But alas, muscle decay does not slow down for regulatory delays.
Our healthcare and our government officials must do better. Patients must demand it from them. This price-controlled mindset destroys life-saving innovation and the real people that benefit from the drugs created. Who wants to put capital at risk for a miraculous FDA approved treatment that can be unlawfully jettisoned by cost-cutting officials in state capitals around the country?
The New York DURB decision to pause coverage is unacceptable. Bureaucratic control reigns over patient choice and accessibility to the care U.S. citizens need, while little boys watch their muscles decay as their friends grow up. It will not be a beautiful day in New York until this reign of power is checked and reconciled.
