Problem Solvers Caucus Endorses Bill to Support Development of Life-Saving Rare Disease Treatments
WASHINGTON, D.C. – Today, the Problem Solvers Caucus announced its endorsement of Cameron's Law (H.R.1414), bipartisan legislation to restore the Orphan Drug Tax Credit to its original 50% rate.
Cameron’s Law is named after 8-year-old Cameron Hyman from Wyckoff, NJ, who is diagnosed with the rare disease Sanfilippo Syndrome. Right now, there are no FDA-approved treatments for his diagnosis, as is this case for more than 90% of rare diseases.
Since it was established in 1983, the Orphan Drug Tax Credit has played a vital role in driving research toward the development of treatments for these uncommon conditions. The tax credit allows companies to deduct a percentage of clinical testing expenses associated with developing therapies for small patient populations. Unfortunately, the credit was cut in half in 2017, significantly weakening incentives for companies to invest in drug development for rare diseases.
Cameron’s Law would solve this problem by restoring the Orphan Drug Tax Credit to its original 50% rate. The legislation will enable America's life sciences leaders to invest more in research and development for cures for orphan diseases, ensuring that Americans like Cameron Hyman are not left behind in the next wave of medical breakthroughs.
Cameron’s Law is led by Representatives Josh Gottheimer (NJ-05), Don Bacon (NE-02), Jimmy Panetta (CA-19), Tom Suozzi (NY-03), Max Miller (OH-07), Brian Fitzpatrick (PA-01), Mike Carey (OH-15), Hank Johnson (GA-04), Don Davis (NC-01), Mike Lawler (NY-17), Henry Cuellar (TX-28), and Brad Schneider (CO-10). The bill was brought forward for Caucus endorsement by Representatives Gottheimer and Bacon.
“Families like Cameron’s are counting on Congress to step up,” said Problem Solvers Caucus Vice-Chair Congressman Josh Gottheimer (NJ-05). “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.”
“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-02). “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.”
“Regardless of politics, no one wants to watch a loved one suffer, especially from a rare disease with no treatment in sight,” said Problem Solvers Caucus Co-Chair Congressman Suozzi (NY-03). “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 and Bacon, my Problem Solvers Caucus Co-Chair Congressman Fitzpatrick, and other bipartisan Members committed to putting values above politics and 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,” said Problem Solvers Caucus Co-Chair Congressman Brian Fitzpatrick (PA-01). “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.”
###
The Problem Solvers Caucus is a group of Members of Congress — split between Republicans and Democrats — committed to advancing common-sense solutions to key issues facing our nation.