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. Thank you.
The Elizabeth T. McNamee 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 disease. 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 pre-disposition) 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 given to the Governors office.
Full copy of the report 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 athletes 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 abandon, 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 preform 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 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 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 includes:
NJ Senate Bill 471
Scholastic Student Athlete Saferty 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.