Problem Solvers Caucus backs Gottheimer’s Cameron’s Law to boost rare disease research
WASHINGTON, D.C. — U.S. Rep. Josh Gottheimer announced that the bipartisan Problem Solvers Caucus has endorsed Cameron’s Law, legislation that would restore the full Orphan Drug Tax Credit to encourage research and development of treatments for rare diseases.
The bill would reverse a 2017 change that reduced the tax credit from 50% to 25%, a move supporters say slowed innovation and made it more difficult to develop therapies for rare conditions.
Cameron’s Law is named after 8-year-old Cameron Hyman of Wyckoff, who has Sanfilippo Syndrome, a rare genetic disease that affects the central nervous system. There are currently no FDA-approved treatments for the condition. More than 90% of rare diseases lack approved therapies, according to advocates.
“Families like Cameron’s are counting on Congress to step up,” said Congressman Josh Gottheimer (NJ-5). “By fully restoring this tax credit, Cameron’s Law will help drive critical investment into research for rare diseases — many of which still have no FDA-approved treatments. I’m proud that the bipartisan Problem Solvers Caucus is backing my commonsense legislation to support innovation, deliver hope to families, and strengthen Jersey’s leadership in life sciences.”
The Problem Solvers Caucus is a bipartisan group of House members focused on advancing legislation with support from both parties.
“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 puts 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). “With the formal endorsement of the Problem Solver’s Caucus, it’s clear that there is strong, bipartisan support behind Cameron’s Law to 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.”
“Regardless of politics, no one wants to watch a loved one suffer, especially from a rare disease with no treatment in sight,” said Congressman Tom Suozzi (NY-3). “Cameron’s Law is a bipartisan measure that rewards ingenuity, innovation, and compassion by incentivizing researchers to take on the enormous risk involved in developing a complex drug for a small number of patients. As Co-Chair of the Problem Solvers Caucus, I’m proud to co-lead this bipartisan bill with Congressmen Gottheimer, Bacon, Panetta, Miller, and Fitzpatrick that puts values above politics, making sure we never leave our most vulnerable without hope.”
“More than 90 percent of rare diseases still have no FDA-approved treatment. That is unacceptable, and demands action. The Orphan Drug Tax Credit has long been a cornerstone of rare disease innovation, helping bridge the gap between discovery and delivery. Weakening it slowed progress in a space where urgency matters most.
Cameron’s Law restores the full 50 percent credit, strengthens incentives for early-stage research, and reaffirms our commitment to families facing the toughest diagnoses. We know this model works. Now we are restoring it—fully and responsibly—to accelerate breakthroughs and save lives,” said Congressman Brian Fitzpatrick (PA-1).
“I’m thankful for PSC’s endorsement of this commonsense legislation,” said Congressman Miller (OH-07). “By restoring the Orphan Drug Tax and accelerating the development of life-saving treatments, this bill could make a real difference, and it merits broad support.”
Industry and advocacy groups also expressed support.
“BioNJ applauds Representative Josh Gottheimer for his continued leadership in supporting the nation’s rare and orphan disease community. With more than 10,000 rare diseases identified — and only five percent having an FDA-approved treatment — restoring the Orphan Drug Tax Credit to its pre-2017 level is essential to accelerating innovation for Patients with few or no therapeutic options. Because life sciences R&D is complex, costly and especially high risk for orphan therapies, strong research incentives are critical to driving breakthroughs where unmet need is greatest. As the second largest biopharma hub in the U.S., including many companies focused on rare diseases, New Jersey is well-positioned to advance this work, and BioNJ urges the rest of the State’s congressional delegation to support this important legislation for Patients and families who cannot wait,” said a spokesperson for BioNJ.
“When Congress created the Orphan Drug Tax Credit (ODTC) 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 is grateful to the Problem Solver’s Caucus for its endorsement of Cameron’s Law and what it signals about 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, Senior Vice President of Policy at Every Life Foundation.
“During Rare Disease Week, we are reminded that while the Orphan Drug Tax Credit has helped advance hundreds of rare disease treatments, most rare diseases still have no FDA-approved therapy,” said Stacey Frisk, Executive Director of the Rare Disease Company Coalition. “Cameron’s Law would restore a vital incentive and strengthen the fragile ecosystem that makes rare disease innovation possible. RDCC applauds the Problem Solvers Caucus for its bipartisan support and continued leadership on behalf of people living with a rare disease.”
Gottheimer’s bill is co-led by Reps. Bacon, Fitzpatrick, Max Miller of Ohio, Panetta and Suozzi. Supporters say restoring the full credit would encourage investment in life sciences research and help accelerate the development of treatments for rare diseases.
