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Capitol Hill Updates

With Congress back in session and President Trump officially assuming office, 2017 promises to be a very busy year for health advocates! Among the President's first pledges was to begin to dismantle aspects of the Affordable Care Act and he has signed an executive order requiring federal agencies to use their authority to roll-back the law. It is unclear what particular aspects of the law are under threat, but senior Trump Administration officials have been quoted as saying the individual mandate may be removed. Meanwhile, Congress is beginning to plan for a repeal vote and debate proposals for a replacement, although at the time of this writing there does not appear to be any consensus on a path forward.

On Tuesday, the Senate convened a confirmation hearing for Representative Price (R-GA) for the role of HHS Secretary. During the hearing Rep. Price stated that he will not "abandon individuals with pre-existing illness or disease" and that "nobody should be priced out of the market for having a bad diagnosis." Going forward, Rep. Price will face a confirmation vote from the full Senate before he can be officially sworn-in to lead HHS. 

President Trump has also signed an executive order instructing all federal agencies to institute a hiring freeze although military, national security, and public safety agencies are exempt. This could prevent key public health agencies such as the National Institues of Health (NIH) and Food and Drug Administration (FDA) from hiring additional personnel, although at the time of this writing, the impact of this executive order is still unclear.

Community Action Alerts & Policy Resources

The New England Hemophilia Association launched an action alert to oppose a state bill in New Hampshire that would prevent drug manufacturers from providing copayment assistance to patients. The Association is seeking stories from patients. Learn more and take action by clicking here

The National Organization for Rare Disorders (NORD) is seeking to hear from patients who have had experience in high-risk pools, a key component of the Affordable Care Act designed for those with pre-existing conditions. Click here to learn more and to submit your input

Community Events

On Wednesday, February 1st at 1pm ET, RDLA will convene our next legislative conference call with patient advocates from around the country. Topics will include the new Administration, health care reform, and other hot state and federal policy topics. For more information and to register, click here. 

On Wednesday, February 1st at 2pm ET, Health IT Now will convene a webinar to discuss federal regulation of data use through HIPAA, the Common Rule, and other data sharing policies. For more information and to register, click here.  

RDLA is hosting Rare Disease Week on Capitol Hill in Washington, D.C. from February 27th through March 2nd. Hundreds of rare disease advocates from across the country will gather to learn about the legislative and policy process and meet with their representatives on Capitol Hill. For more information, join our upcoming webinar on Wednesday, February 8th from 2-3:00pm ET.

Event registration is now open:

On Monday, February 27th from 12-1pm, Sarcoidosis of Long Island and the Foundation for Sarcoidosis will host a Congressional lunch briefing on the "Sarcoidosis Awareness Month Resolution and Its Impact." For more information and to register, click here. 

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***This E-Blast shares action alerts, legislative, and policy news and events from the patient advocacy community. RDLA does not take positions on the issues herein, but serves as a supportive clearinghouse for the rare disease community. Send us an email if you'd like your alerts and/or events included! Email mbronstein@everylifefoundation.org.

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