According to a story from Scleroderma News, many rare disease patients will be heading to the polls on November 6th. Many of them are as deeply concerned about the high profile issues as anyone, but they also carry some unique concerns all their own. These concerns include federal funding for rare disease research, health care costs, and the Orphan Drug tax credit.
Critical Issues
Patient advocacy groups have been hard at work trying to keep patients informed. With that being said, leaders of these groups, such as Sara Singleton, who is the policy director for the Cystic Fibrosis Foundation, are well aware that a single election isn’t going to change things over night. Even if the Senate or the House changes hands, the prospects for getting major legislation through that will benefit rare disease patients is still slim.
Sara was just one of several participants in a panel that discussed upcoming legal issues for rare disease patients which recently took place at the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit in October.
The Orphan Drug Tax Credit
The panel discussed a number of policy concerns. The Orphan Drug tax credit was a hot topic. This credit was first implemented in 1983 and allowed companies whose products had earned Orphan Drug designation to enjoy tax credits that aided in covering the costs of drug development and clinical trials.
Regrettably, this credit was halved in the 2017 tax cuts passed by the Republicans, and many reps in the House supported eradicating it entirely. While this cut is credited with saving taxpayers some cash, the end result is a reduced incentive for the development of rare disease therapies. Keeping the Orphan Drug tax credit alive is a hot button issue for the rare disease community.
Funding The National Institutes of Health
There has been good news as well, such as a new bill which passed that added a $2 billion boost to the budget of the National Institutes of Health (NIH), a major player in rare disease research and development. This bill also passed with bipartisan support, so regardless of the midterm results, funding for the NIH should be stable.
Protecting Preexisting Conditions
Another concern is the protection of pre-existing conditions. A lawsuit filed by the state of Texas and supported by the Trump administration is aiming to undue requirements that prevent insurers from charging patients with preexisting conditions more. Most Republicans and Democrats support preexisting condition protections.
