Liz Kennerley’s Blog – UMDF Advocate
I’m Liz Kennerley and I would like to tell you a little bit about myself. I was born and raised in Pennsylvania. I moved to Massachusetts for college and now live in Washington, DC. I wanted to get as far from home as possible to form my own opinions of the world. This can be challenging being the only child. My parents are the oldest of six and have strong personalities. I graduated from Simmons College in 2009 with a BA in Society and Health. My other major was Sociology and minors were Music and Psychology. Because I battle mitochondrial disease, I was constantly in the health center and spent about month off and on in the hospital my senior year. Despite that, I graduated on time!
One of the things I enjoy doing is advocating for rare diseases with emphasis on mitochondrial disease. Living in Washington, DC places me at the heart of where important decisions impacting our community are made.
In my opinion, advocating in this space is like a pair of shoes. Just as you cannot buy the left without the right, it is hard to advocate for rare diseases without representation of mitochondrial disease. All rare diseases need research funding to better understand their causes and develop potential cures. Advocacy is important so that lawmakers understand the connection between mitochondrial dysfunction and so many other more common illnesses.
Over the course of just a few years, I have found myself advocating side-by-side with fellow mitochondrial disease patients, other rare disease patients and advocates. I have had the opportunity to advocate alongside MDs and PhDs, even CEOs of major pharmaceutical companies! I have had the opportunity to speak with many, prominent elected officials like Senators Orin Hatch of Utah and Sen. Mitch McConnell of Kentucky. Sometimes, I’m the only one under 60 years old, AND the only woman.
Every time I am advocating on the Hill, I remember that it’s impossible to move in any direction if we can’t make others in government understand our goal. Our goal is effective treatments and cures. Those can’t happen in a vacuum and it takes all of us — academics, researcher, government, industry and, of course, patients! I hope you will consider joining us on June 29, 2017 for our mitochondrial disease Day on the Hill. Take the first step now. Click here to register.
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.
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.