Get Involved
Elizabeth T. McNamee Legislative Advocacy
Committee
There are many efforts at both the State and Federal levels related to HCM, Sudden Cardiac Arrest, Heart Health, Medical Devices, and related items that will be included on this page. This page is not intended to be a complete data source on all legislation in this space, but instead to highlight quality legislation that the HCMA supports and hopes to reproduce in other states.
At the state level, the “Children's Cardiac Safety Act” (CCS Act) aims to ensure the cardiovascular health needs of all children (19 years of age and younger) and those of student-athletes are met by improving the ability of the healthcare providers to identify children and their families at risk for cardiac disorders both genetic and congenital.
We use the Ujoin.com platform which allows us to send targeted email campaigns to state lawmakers in order to show support of our legislative initiative and allow us to track bills as they advance.
The Elizabeth T. McNamee Legislative Advocacy Committee was created in October 2019. The role of this committee is to carry on the legacy of Elizabeth by maintaining a policy agenda for improving legislative and regulatory initiatives on a state and federal level to further the interests of safe and progressive diagnosis and treatment of those with Hypertrophic Cardiomyopathy (HCM).
Elizabeth T. McNamee was a bright student with a fantastic future. She excelled in whatever she set out to do. Her love for people, athletics, and the arts was among her most outstanding attributes. She attended West Islip Schools, graduated from Harvard University with honors, and was in her final year at NYU Law School when, in September 1998, her life suddenly came to an end. Elizabeth died from undiagnosed Hypertrophic Cardiomyopathy (HCM).Over the years, the McNamee family has contributed nearly half a million dollars to support the HCMA and its mission in honor of Elizabeth!
If you want to view prevalence data for cardiac disorders in your state, please click here. Additional states will be targeted later this year.
To see the full draft legislation for the CCS Act, click here
A similar Act was already passed in New Jersey. To view NJ legislation, click here
Congratulations to Virginia for being the first state to pass the CCS Act!
All children should be screened for the risk of cardiac arrest regardless of their athletic status, according to the updated AAP policy statement Sudden Death in the Young: Information for the Primary Care Provider.
The policy, from the AAP Section on Cardiology and Cardiac Surgery and the Pediatric & Congenital Electrophysiology Society (PACES), offers primary care providers a strategy for screening, evaluating and managing risk of sudden cardiac arrest (SCA) and sudden cardiac death (SCD) in youths.
To view the policy click here.
Other ways you can help...
- Engage your elected official: reach out via e-mail, phone calls, set up meetings
- Be prepared: Know the Legislation and Know the Why
- The “ASK” is to pass this into law
- Share personal experience: be brief, but impactful
- Encourage friends and family to participate as well
