RELEASE: On Rare Disease Day, Gottheimer Reintroduces Bipartisan Legislation to Restore Orphan Disease Research Tax Credit and Find Cures for Rare Diseases
WASHINGTON, D.C. — Today, February 28, 2025, U.S. Congressman Josh Gottheimer reintroduced bipartisan legislation — Cameron’s Law — to fully restore the Orphan Drug Tax Credit, which was cut in half by the 2017 Tax Hike Bill. The legislation is co-led by Congressmen Don Bacon (NE-02), Jimmy Panetta (CA-19), Tom Suozzi (NY-03), Max Miller (OH-07), and Brian Fitzpatrick (PA-01).
Gottheimer’s legislation will allow New Jersey’s life sciences leaders to invest more in research and development for cures for orphan diseases, which currently have no FDA-approved treatments.
The bipartisan legislation is named after 10-year-old Cameron Hyman from Wyckoff, NJ, who is diagnosed with Sanfilippo Syndrome, which affects the central nervous system. Right now, there are no FDA-approved treatments for Sanfilippo Syndrome.
“Jersey has some of the best medical facilities, doctors, nurses, and life science leaders in the country. We need to continue growing our talent pipeline so that we can treat and cure rare diseases that often don’t get the attention and investment they demand,” said Congressman Josh Gottheimer (NJ-5). “With Cameron’s Law, we will restore the Orphan Drug Research Tax Credit to its original levels and give our best and brightest — many of them right here in Jersey — a fighting shot to find cures to the most ruthless diseases that plague our families, loved ones, and neighbors.”
“Cameron’s Law will create incentives, through tax credits, for pharmaceutical companies to create drugs to treat these diseases and get them to patients as quickly and safely as possible. Rare diseases have hit close to home, as two of my staffers have been affected by rare diseases, but thankfully, drugs and treatments were available to them. It is my hope that like them, all those suffering from rare diseases will have increased access to lifesaving drugs,” said Congressman Don Bacon (NE-2). “I’m glad to be a co-lead on Cameron’s Law. Many patients are desperately waiting for drugs, and this bill will incentivize pharmaceutical companies to continue development and trials so they can get these drugs to the people that need them.”
“Cutting the Orphan Drug Tax Credit in half put life-saving research for rare diseases at risk, slowing progress for patients and families who are counting on medical breakthroughs,” said Congressman Jimmy Panetta (CA-19). “That’s why I’m proud to support the bipartisan Cameron’s Law, which would restore the full tax credit and help ensure that developing treatments for rare diseases remains a priority. By doubling this credit, we can incentivize innovation, provide certainty for continued investment, and give hope to those who need it most.”
“With Cameron’s Law, we will strengthen the Orphan Drug Tax Credit, accelerating the discovery of life-saving treatments and cures for rare diseases,” said Congressman Max Miller (OH-7). “By increasing this tax credit, we make it more economically viable for pharmaceutical companies to invest in rare disease research. Northeast Ohio boasts some of the world’s leading medical institutions, and this bill will further empower them to drive innovation and improve patient outcomes.”
“Rare diseases don’t wait, and neither can we. Cameron’s Law will restore the full Orphan Drug Tax Credit, ensuring that the groundbreaking research happening in Pennsylvania’s world-class hospitals and medical institutions, and across the country, continues to push the boundaries of what’s possible. This is about saving lives, fueling innovation, and delivering real hope to those who need it most. We have the science. We have the talent. Now, we must have the commitment to see it through,” said Congressman Brian Fitzpatrick (PA-1).
In 1983, the Orphan Drug Act passed with broad bipartisan support and was signed into law by then-President Ronald Reagan. Prior to 1983, only 38 orphan drugs for rare diseases had been approved for use in the U.S. By 2014, with the help of the Orphan Drug Research Tax Credit and research incentives laid out in the Orphan Drug Act, 373 drugs for rare diseases had been approved.
New Jersey is a world leader for life sciences and innovation, home to 12 of the world’s top 20 research-based biopharmaceutical companies. Nearly 370,000 New Jersey jobs are supported by the life sciences sector with a total economic impact to the state of more than $130 billion. New Jersey has been ranked the number one state in the nation for biotech growth potential and the number two state for biotech strength.
“For RDCC member companies developing life-changing treatments for rare diseases, it’s crucial to reduce the barriers to drug development and encourage upfront investment. Cameron’s Law will restore an integral component of the rare disease ecosystem and make it more economically feasible for drug companies to develop rare disease treatments and provide much-needed certainty for continued investment,” said Stacey Frisk, Executive Director of the Rare Disease Company Coalition. “The RDCC is proud to endorse this important bill and urges policymakers to ensure Cameron’s Law becomes law in the 119th Congress.”
“When Congress created the Orphan Drug Tax Credit as part of the landmark Orphan Drug Act in 1983, they recognized the importance of using every available tool to drive investment in treatments for the 30 million Americans living with rare diseases. However, cutting the credit in half in 2017 weakened one of those critical tools. It is time to restore the ODTC to its original 50% value. Protecting and strengthening this credit is essential to ensuring that patients are not left behind in the search for treatments and cures. The EveryLife Foundation applauds the introduction of Cameron’s Law, which reaffirms our nation’s commitment to the rare disease community and the urgent need to ensure that research and innovation continue to thrive,” said Jamie Sullivan, Vice President of Policy at Every Life Foundation.
“Developing new medicines to treat rare disease is extremely challenging. The clinical trials are complex and attracting investment is often harder given the small patient populations. That’s why bills like Cameron’s Law, H.R. 1414, are so important. Today, there are more than 10,000 rare diseases. Ninety-Five percent of these diseases have no FDA approved treatments. This legislation would restore the orphan drug tax credit to 50% and continue to spur research and investment, driving more innovation and new treatments for the tens of millions of Americans who have a rare disease. We thank Representatives Gottheimer, Bacon, Panetta, and Suozzi for stepping forward, introducing this bipartisan bill, and delivering hope to patients and families everywhere,” said the Biotechnology Innovation Organization (BIO).
###