The release of a draft of the American Health Care Act has had everyone buzzing the past few weeks. Not only does this signal the impending repeal of the Affordable Care Act, which has been promised since November 8th of last year, but it is also the first of many big changes likely coming to healthcare policy in the United States.

While changes to the ACA were promised, Americans have been left wondering how and when the repeal would take place. Some policy makers have urged for “repeal and replace” to enact a new healthcare system that would improve on Obamacare. Of course, some politicians have argued for the simple repeal of the ACA, and others have asked that it be left untouched.

The American Health Care Act follows the “repeal and replace” model. Many people’s initial reaction was one of slight shock- the newly proposed bill is actually more similar to the Affordable Care Act than most people were expecting. Keep in mind, this is a very early draft that needs to be reviewed by the House Ways and Means Committee before being passed onto the House, then to the Senate and finally the President. No doubt there will be countless changes to the bill each step of the way- many of them dramatic changes- if the bill even makes it through the legislative process at all. That being said, our partners at NORD released a statement on the bill with everything rare disease patients need to know, including information about preexisting conditions, discriminatory benefits exclusions, lifetime and annual coverage caps, medicaid expansion and more.

FSR approves of the National Organization for Rare Disorders’ commitment to focus on the best interest of rare disease patients when assessing important new legislative measures. That’s why we wanted to share an additional press release on the Preserving Employee Wellness Programs Act and why they oppose it. Essentially, the passing of the act would make employee wellness programs exempt from the protective factors of the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act. NORD estimates that 80% of rare diseases are genetic- while no specific genetic mutation is recognized as an indicator of sarcoidosis, there is evidence to suggest the disease has some hereditary factors.

Both of these issues will continue to be highly debated in the weeks and months to come. To be an empowered patient and advocate for your own care, stay informed on what’s happening and what you can do to help. Organizations like NORD, Everylife Foundation, and Global Genes can help you stay up to date as well.

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