Hypertrophic (hyper-tro-fic) Cardiomyopathy (cardio-MY-o-pathy) is a disease that impacts possibly as many as 1 in 250 people.
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. If you have a pending or new piece of legislation you would like included on this page, please email the HCMA at firstname.lastname@example.org.
In 2021 the HCMA is launching an effort to identify the undiagnosed and improve the screening of student-athletes. Through our efforts, we hope to educate health care providers and ensure families understand their own heart health history, and discuss these important issues with their chosen care team.
The Hypertrophic Cardiomyopathy Association’s (HCMA) Elizabeth T. McNamee Legislative Advocacy Committee is seeking volunteers to work with us to improve efforts to find the undiagnosed.
In September 2021 the HCMA is beginning a national effort to:
- Include cardiac questions to be added to the “Well Child” examination for all children under the age of 19. To improve professional development for healthcare providers with an online training system.
- Improve student-athlete pre-participation physicals and athlete education about signs and symptoms that are linked to cardiac conditions.
- Improve the ability of the healthcare providers to identify children and families at risk for cardiac disorders both genetic and congenital.
- The legislation we are seeking to introduce and pass at the state level is called the “Healthy Cardiac Monitoring Act” (HCM Act). The complete language of this legislation appears later in this document.
As a volunteer you will:
- Participate in training – online
- Have access to online resources (Ujoin) that will make engagement with your legislative representatives simple.
- Potentially set up personal meetings with your representatives or appropriate State Committee members (all with support from the HCMA systems and staff)
- Encourage your friends and family to participate in advocacy through social media and use of our online systems.
- Participate in public meetings to provide testimony on why this legislation is so important to you.
- Follow up with your legislators and keep them working on the passage of the HCM Act into LAW.
- Please sign up to be a volunteer at https://4hcm.org/get-involved/ - choose Legislative Advocacy
- Participate in Online training which will include how to use the software and systems.
The Elizabeth T. McNamee Legislative Advocacy Committee of the HCMA supports legislation that follows several principles and is consistent with the mission, vision, and values of the organization:
1. The creation of sustainable, scientifically based methods to improve the identification of those with HCM and other genetic or congenital heart defects and diseases. Priority should be given to the inclusion of ALL children and adults to be screened within their traditional care model as part of wellness exams.
2. The inclusion of AED placement, training, drills, and maintenance programs in schools, governmental buildings, businesses, and athletic fields.
3. CPR training for all high school students as a prerequisite of graduation. Hands-Only CPR is adequate for training requirements.
4. Good Samaritan coverage for the use of an AED and/or reforming CPR.
5. Legislation that protects the rights of those with preexisting medical conditions (or genetic predisposition) to have a legal right to access to healthcare, and that these conditions not be held against them for the purposes of calculation of premiums.
6. The protection from harm of patients who take prescription medications or use implantable medical devices.
7. The inclusion of all racial, ethnic, age, gender, economic and geographic region in medical research.
8. Ensuring Federal funding for medical research in the area of chronic medical conditions, specifically, heart and stroke, are maintained and are an appropriate representation of the population impacted by these conditions.
A model of success New Jersey:
In 2007, the State of New Jersey, by order of the Governor, created a task force to evaluate the "problem of sudden cardiac arrest in young athletes". A committee was formed and the HCMA provided testimony and guidance to this committee.
The Committee included stakeholders from the American Academy of Pediatrics, American College of Cardiology, American Heart Association., National Athletic Trainers Association, NJ School Nurses, and others. Scientific Data and best practices were reviewed and a report containing recommendations was given to the Governor's office.
A full copy of the report is available here.
It is important to note that one of the first items the committee acknowledged was that it was a poorly named committee and that this in fact was not an athlete's issue, but a child and family issue. However, they were bound by the Governor to address the question asked and respond.
Once the report was issued, the next step was to create legislation based on the recommendations. Those recommendations included 9 items. One was poorly thought out and later abandoned, and one was added at the request of the HCMA.
-3 AED/CPR and Emergency Response directed (6,7,8) - Passage of Janet's Law in September 2012 addresses the majority of these recommendations. Later additions to these recommendations were made in 2015
-1 Registry (9) Signed into law August 2013
-1 Professional Education (3) Signed into law June 2013
-1 Defining who can perform a PPE (2) Signed into law June 2013
-1 replacement of PPE form with standard form Signed into law June 2013
-1 Education to athletes and parents with a brochure (5) Signed into law June 2013
-1 Reimbursement for PPE (4) S-1910 Passed Commerce Committee moved to Budget Committee failed and was not resubmitted.
-Replaced with (S)2461 Requires annual physical examination of a child under 19 years of age include certain questions related to cardiac health. Signed into law May 2015.
Additional legislation that advocates for healthy hearts include:
NJ Senate Bill 471
Scholastic Student-Athlete Safety Act
Senate NJ SCA reporting Act 2013
Children's Sudden Cardiac Events Reporting Act
Due to these efforts above and the work of many wonderful advocates now in the State of New Jersey, there are requirements under the law that:
Require any annual medical examination of a child under 19 includes the questions contained in the "preparticipation Physical Evaluation" form (citation American Heart Association 2006 and updates as necessary)
Those conducting these physicals will be required to complete continuing education module on the signs, symptoms, and risk factors for cardiac disease in the young.
Modules must be completed for certification, registration, or licensure. (recertification must be renewed periodically)
All athletes must receive an educational brochure each season about sudden cardiac arrest risks and what to do if they have concerns about symptoms.
The State will use ONE uniform form for preparticipation physicals.
All PPE physicals must be completed by an MD, DO, APN, or PA who has taken the training module - (certification must be sent to the school to prove certification has been taken - one form per school is acceptable)
All Schools must have an AED training and maintenance program.
The State of NJ requires all High School Students to be trained in CPR.
The State of NJ has good Samaritan coverage for the use of AED's for all.
The module shall include, but need not be limited to, the following: Link to the training
(1) Completing and reviewing a detailed medical history with an emphasis on cardiovascular family history and personal reports of symptoms;
(2) Identifying symptoms of sudden cardiac arrest that may require follow-up assessment with a cardiologist;
(3) Recognizing normal structural changes of the heart;
(4) Recognizing prodromal symptoms that precede sudden cardiac arrest;
(5) Performing the cardiovascular physical examination; and
(6) Reviewing the major etiologies of sudden unexplained cardiac death with an emphasis on structural abnormalities and acquired conditions.