Parents Fear Tax Cut Will Endanger Their Daughter with Angelman Syndrome

Jay and Amy Granzow are among the many worried parents fearing the GOP tax plan, because of the threat it brings to orphan drug research.

The Manhattan Beach couple fear the end of the three-decade-long tax credit for companies creating treatments for orphan drugs such as cystic fibrosis, muscular dystrophy or in the case of their 3-year-old Cora, Angelman syndrome.
This rare neurogenetic disorder is usually misdiagnosed as cerebral palsy or autism. It targets the nervous system and results in developmental disabilities, neurological problems, and seizures. To learn more about Angelman syndrome, click here.

The $1.5-trillion tax cut would affect half the current 50% tax credit for the development of drugs for Angelman syndrome. This would generate an estimated $54 billion in revenue, which would mostly benefit tax reductions for corporations.

There is a silver lining for the Granzows– a treatment for Angelman syndrome is in the works. Ovid Therapeutics Inc. is developing a medicine that is in early clinical trials. Without the orphan drug incentive, that trial will remain stagnant.

There are currently over 7,000 orphan diseases, and there are 350 government approved treatments for them in the U.S.

In some cases, certain doctors are resilient, and won’t let a tax break end their efforts at finding live-changing treatments for orphan diseases. Take Dr. Jeremy Levin for instance. He’s the former chief executive of Teva Pharmaceutical Industries who just joined Ovid to find treatment for neurological diseases. He vowed that the company wouldn’t walk away from their research, no matter what happens with the tax breaks.

Their Angelman treatment is now on Phase II of clinical trials and it might be a few years before a drug is marketed to the public.

Amy Granzow will never forget the moment Cora had her first seizure, that propelled them into this rare ecosystem of worry and stress. Today, Cora undergoes 22 hours of therapy a week that aid her motor skills and speech. She is now finally able to utter a few words and climb the stairs on her own.

“We’re so far along in terms of finding a cure,” said Amy to the LA Times. “That’s why [the tax credit] is such a big deal for our kids.”

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