UMDF Legislation Tracker
Follow legislation impacting the mitochondrial disease community of a federal and state level.
FOLLOW UP TO “DAY ON THE HILL”
Our Congressional Mitochondrial Disease Caucus Chair, Rep. Jim McGovern (D-MA-2), is asking other Congressmen to sign his ‘Dear Colleague’ letter that was part of our ‘ask’ on June 29, 2017 for the Day on the Hill. The letter requests that National Institutes of Health (NIH) Director Francis Collins include mitochondrial disease as a focus in some of the agency’s currently funded research projects, such as the Precision Medicine Initiative (PMI) and the Cancer Moonshot. Research projects like these are of unprecedented scale and scope, and we believe that the agency has incredible opportunities to make additional discoveries related to mitochondrial disease and its secondary disorders. Visit the UMDF Advocacy Action Center now and ask your House Member to sign onto Rep. McGovern’s letter today! The deadline is July 26, 2017!
ACTION ITEM FOR RESIDENTS OF PENNSYLVANIA, CALIFORNIA, LOUISANNA
Please visit the UMDF Advocacy Action Center here and send a letter requesting your Senator support our important efforts to fund research. UMDF has asked Senator’s Bob Casey (D-PA), Diane Feinstein (D-CA) and Bill Cassidy (R-LA) to insert important appropriations language into the budgets for the Department of Defense and President Trump’s budget for 2018. See our appropriations requests here. We need to keep this critical research in the NIH and DoD Budgets! Make your voice heard now!
Concerned about “Replace and Repeal” of the Affordable Care Act?
We want you to know that the current process of “repealing and replacing” the Affordable Care Act (ACA), also known as Obamacare, is of great concern to UMDF. Click here to see our position on “Replace and Repeal”. Many who suffer with mitochondrial disease have historically experienced difficulties obtaining affordable health care coverage. The requirements of the ACA regarding robust coverage of those with pre-existing conditions under family, individual and small group plans has been particularly important for many patients and families. As you know, this bill is now working its way through Congress and we are watching carefully how any legislation will impact our families. We invite you to check the UMDF Advocacy Action Center frequently for important alerts and ways for you to participate and make your voice heard on this important issue.
UMDF OPPOSED H.R. 1313 –Preserving Employee Wellness Programs Act
H.R. 1313 is before the House Ways and Means and Energy and Commerce committees before it advances to the entire House floor. The House Committee on Education and the Workforce approved the bill out of their committee. The Committee, in its approval, noted that the legislation would allow employers to offer employee wellness plans, help them promote a healthy workforce and would lower health care costs. However, employees who refuse to test could be subject to higher insurance premiums. Currently, employers are prohibited and restricted from asking to collect genetic information from employees under the Genetic Information Nondiscrimination Act (“GINA”), the Americans with Disabilities Act (“ADA”) and other state laws. H.R.1313 specifically states that GINA and other protections will not apply to genetic testing conducted under a workplace wellness program or a program relating to health promotion or disease prevention. That is why UMDF opposes it. Under GINA, group health plans (such as employer health plans) are not allowed to request or require genetic testing. Wellness plans are only allowed to disclose employee genetic information to employers in aggregate form so that an individual’s identity remains anonymous. However, employers are allowed to offer genetic testing to employees and receive the test results from employees on a voluntary basis. Click here to see our letter of opposition and check back to see what action we need you to take should this move to the House floor for consideration.