The recent national election, bringing in a new Administration, raises questions and concerns about the future of laws and programs of interest to researchers, patients and caregivers dealing with FSHD. While it is impossible to foresee the possible changes, we want to assure you that the FSH Society will be closely monitoring the impact on funding and policy changes.
Funding for the National Institutes of Health (NIH) is important to continue the momentum behind increased understanding of FSHD. The change in political control may help the passage of the 21st Century Cures Act, which would increase overall NIH funding. Otherwise, it does not seem that NIH funding is on the chopping block. NIH enjoys broad political support. It is seen as essential to the pharmaceutical and biotech industries as an engine of discovery.
Often, when a new Administration comes in, the heads of NIH and the Food and Drug Administration will change. So we will be looking for changes at that level as the Administration gets underway.
The repeal and replacement of the Affordable Care Act (ACA) has been a principal Republican goal for eight years. Now that Republicans are in a position to achieve that objective, a key early issue is whether the law will be repealed first and the replacement will come at some later date. This is unlikely as it would produce a huge dislocation in the health insurance market immediately.
Of great interest to persons with chronic and genetic diseases are the ACA provisions prohibiting insurance companies from refusing to cover individuals with pre-existing conditions and imposing lifetime limits on care. These provisions are very popular and Republican leaders have indicated a commitment to keeping them. The challenge is that these provisions are expensive and under ACA, the costs are paid for by requiring almost all Americans to purchase health insurance. Most Republicans are opposed to the individual mandate. This is but one of many troublesome issues that will have to be dealt with in crafting a replacement.
In the interim, the Trump Administration can do a lot to block the objectives of the ACA through appointments and in the posture the Administration takes in some pending court cases.
Enforcement of the Americans with Disabilities Act is another area of concern. While there has been little attention paid to this law in the recent campaign, the new Administration can greatly affect enforcement through appointments to the Civil Rights Division of the Department of Justice and Equal Employment Opportunity Commission.
The advances in medical research and protecting the rights of persons with disabilities will require continued vigilance by many organizations, including the FSH Society.