Rare Disease Tax Credit Would Return Under Bill Named For Wyckoff Kid

WYCKOFF, NJ — When Rob Hyman's 8-year-old daughter was diagnosed with a rare debilitating disease, he couldn't sit on the sidelines. He helped launch the CAM Foundation — named after his daughter — to raise funds to invest in trials and to find a cure.

Now Cameron's name is a part of new legislation to further invest in that effort.

Cameron's Law is new legislation that, if enacted, would reinstate a rare disease drug research credit (provided through a 1983 law). A 2017 tax reform bill reduced the tax credit drug developers can claim by half. The legislation is named after Wyckoff's Cameron Hyman, who has Sanfilippo Syndrome, which affects the central nervous system — specifically the brain and spinal cord. Right now, there are no FDA-approved treatments for the disease.

"It's one of the reasons I'm here today," Congressman Josh Gottheimer (NJ-5) said at a press conference Thursday in Ridgewood announcing the legislation, "— because we need to change that."

Cameron Hyman's family is far from alone, he said, in the fight for cures for rare diseases. Nearly 30 million people in the U.S. have been diagnosed with a rare disease, "meaning none of us are very far from these diseases — or very far from seeing all the work we still need to do to make sure cures are found," Gottheimer said. In fact, the congressman lost his mom to a rare inflammatory disease, Sarcoidosis, four and a half years ago, he added.

With Cameron's Law, Gottheimer said, the life sciences industry would be able to invest more in research and development for cures for rare diseases — sometimes known as orphan diseases — more than 90% of which have no FDA-approved treatment.

"We will invest and restore the credit to its original levels and give our best and brightest a fighting shot to find effective treatments for rare diseases and, eventually, find a cure to the most ruthless diseases that plague our families, loved ones and neighbors," Gottheimer, a member of the bipartisan Rare Disease Congressional Caucus, said.

During Rare Disease Week on Capitol Hill, Gottheimer joined with the Hyman family and Congressman Don Bacon (R-Neb.) at Valley Hospital to announce Cameron's Law and the Rare Disease Clinical Trial Pandemic Disruption Act — which would, in effect, incentivize clinical research that was halted by the COVID-19 pandemic, the congressman said.

The Clinical Trial Pandemic Disruption Act would allow any company that resumes a trial for orphan drugs that show promise and were halted during the pandemic to be granted an additional six months of exclusivity on the specific product under consideration when it comes to market.

“Many patients are desperately waiting for drugs, and this bill will incentivize pharmaceutical companies to continue development and trials that have been delayed by the pandemic so that they can get these drugs to the people that need them," said Bacon, the lead Republican cosponsor of Cameron's Law and the Clinical Trial Pandemic Disruption Act, and who had two staffers affected by rare diseases.

In addition to the bipartisan bills, Gottheimer also announced a new $600,000 federal investment to Valley to enhance the AUGi Project — a "next-generation" AI patient monitoring technology, to improve safety and reduce falls.

"This new federal investment will be used to ensure that the state-of-the-art technology is included in every patient room at Valley currently under construction," Gottheimer said. "This incredible technology is an extra pair of eyes for our health care workers and it’s an extra layer of protection for our families."

The monitoring technology can help identify patient movements that may suggest their exiting a bed or getting up from a chair and will alert hospital staff or caregivers to the device. Valley Hospital's pilot program with the technology saw a 28% reduction of falls resulting in injury — an "amazing feat," the congressman said.

"We must do more to provide hope and support to the families who struggle every day managing a rare disease, and also provide opportunities for our research institutions to finally get us to the desperately needed cures,” Gottheimer said.