By Former Congressman Ed Towns
(Trice Edney Wire) – My friend and our leader, Governor Kathy Hochul has constructed an impressive infrastructure for championing healthcare innovation and children’s health in New York.
From launching Long Island’s Biogenesis Park, which leads the nation in cell and gene therapy R&D, and expanding Medicaid coverage to 800,000 kids in New York, she has demonstrated a consistent commitment to accessible healthcare and making New York a leader for cutting-edge drug innovation.
The governor’s aspirations for New York to be the hub for innovation and high-caliber healthcare are already coming to fruition. Along with Biogenesis Park and expanded healthcare, last year, Roswell Park’s $98 million cell and gene therapy academic facility opened in Buffalo. At the celebration event, she committed to “offering hope to generations of New Yorkers and others who rely on the creation of these cutting-edge treatments.”
In August 2025, Governor Hochul announced a $300 million investment to strengthen healthcare access and quality across the state.
When she expanded New York children access to healthcare, she made an honorable statement that rings truer than ever: “We will always go the extra mile to create a healthy future for our youngest New Yorkers.”
Contrary to this strong foundation, on October 6th, New York’s Drug Utilization Review Board (DURB) voted to pause Sarepta Therapeutic’s FDA-approved gene therapy Elevidys’ state Medicaid coverage pending FDA safety label updates.
Elevidys is the only FDA-approved gene therapy for Duchenne’s Muscular Dystrophy (DMD), an incurable rare genetic disease that causes irreversible muscle loss at a fatal rate. Elevidys has a significant impact on patients, proven to aid in slowing symptoms and recovering motor function and mobility.
During the DURB meeting, families shared their own personal stories of life-changing successes. One patient shared that she could do more daily tasks independently, such as transferring herself to and from her wheelchair, opening containers, and overall participating in life more fully. One mother shares that her son can attend public school with little assistance and even participate in gym and play at recess.
The experiences these parents bravely shared are not the exception, they’re the rule. Clinical data has repeatedly shown that Elevidys provides significant functional improvement to patients.
Unfortunately, the New York DURB is more interested in protecting pocketbooks, and these young children will end up paying the price.
This elected pause painfully contradicts the theme of cutting-edge healthcare accessibility that Governor Hochul has cultivated in the state. New York is investing millions of dollars in gene therapy R&D on newly built sites while restricting access to gene therapy.
This is an opportunity for Governor Hochul to pioneer a creative solution that balances patient health and fiscal responsibility, precisely the nuanced thinking she has demonstrated throughout her leadership.
New York will set a precedent here that will either put New York children last or first. High cost and bureaucratic hoops should not be the barrier between suffering children and life-saving treatment. The investments the state has made in gene therapy can only yield their full benefit if patients can access the groundbreaking therapies being researched and developed.
The way Governor Hochul moves forward will define the way New York and other states operate for generations to come. I am here to work with the Governor to assist her in ensuring the right pathway that protects patients’ access to care.
Former Congressman Ed Towns served in the U. S. House of Representatives for 30 years 1983 to 2013. A Democrat from New York, he was chair of the House Oversight and Government Reform Committee from 2009-2011.
