AHA Seeking Patient Input for New HCM Initiative

In November at the American Heart Association’s Scientific Sessions held in Philadelphia, AHA announced that it would be starting a three-year initiative focused on hypertrophic cardiomyopathy, also known as HCM.  The initiative is sponsored by MyoKardia, a San Francisco based company that is currently in clinical trials for mavacamten, the first drug specifically intended to treat HCM.

Last week, Cynthia Waldman of HCMBeat had the opportunity to speak with Amy Schmitz, AHA’s National Corporate Relations Director and Alexson Calahan, a Communication Manager for AHA.

What follows is a summary of their conversation about the forthcoming HCM initiative that has been edited for clarity.

 

HCMBeat:  What brought HCM to the attention of AHA at this point in time, and what is the AHA envisioning for the HCM initiative?

AHA:  We recognize that HCM is very common and often goes undiagnosed.  There is such a need out there for awareness and education and we are very excited about this effort which is being sponsored by MyoKardia.  AHA has done some work in the past around HCM research, but this is our first focused campaign. This initiative is focused on educating and engaging clinicians and patients in order to improve and optimize HCM treatment, recognition and management.

HCMBeat:  What will the initiative look like?  I understand that you are currently conducting patient interviews. Will the content of the interviews influence the ultimate shape of the initiative?

AHA:   We are currently conducting patient interviews and gathering information.  The patient interviews are very important to the development of the program and the planning of activities which will ultimately comprise the initiative.  The interviews are so important, and will help us to understand the patient experiences as they relate to being diagnosed with HCM, what patients’ life is like living with HCM, and what types of tools and resources AHA can create to help patients better understand and manage their HCM.  In particular, we are hoping to speak with individuals 18 and older that have been diagnosed with HCM that regularly experience symptoms. We are also really trying to get a representation of patients between the ages of 18 to 44, as well as those who are Hispanic or Black.  We are hoping to interview 45 – 50 patients in total, and hope to have the interviews completed by the end of February.

HCMBeat:  What might the finished initiative look like? Would it be comprised of meetings or pamphlets or would it be media focused?

AHA:  There are many components to the initiative. One is identifying which tools and resources would be helpful to patients.  The details of what will come next are still yet to be determined and will depend on what we learn from these interviews.  One objective we have is to assist those who are already diagnosed.  We may use media campaigns to build awareness for those who are at risk or who may be missing their diagnosis.  We are also going to be doing some provider education.  We need the providers to understand what to look for to help properly diagnose these patients. Digging more into life with HCM is really important to us.

HCMBeat:  Have you undertaken similar initiatives around other heart conditions in the past?

AHA:  AHA really focuses on science and evidence-based information as well as patient health and advocacy.  We have undertaken a variety of initiatives in heart failure, cholesterol, hypertension and stroke. And similar to what we plan to do for the HCM initiative, we have really focused those efforts around education and awareness for clinicians and patients.

HCMBeat:  Thank you so much for your efforts on behalf of HCM patients  This initiative will bring much needed attention to a common condition that has not received nearly enough attention in the public sphere.

NOTE TO READERS:  If you would like to participate in the AHA’s interviews, fill out this questionnaire.  If you qualify, AHA should contact you soon to conduct an interview.

 

 

 

 

DISCLOSURES:  HCMBEAT HAS RECEIVED UNRESTRICTED EDUCATIONAL GRANTS FROM MYOKARDIA.  ADDITIONALLY, CYNTHIA BURSTEIN WALDMAN OF HCMBEAT SERVES ON THE STEERING COMMITTEE FOR MYOKARDIA’S EXPLORER TRIAL AND THE MYOKARDIA PATIENT ADVISORY BOARD.

 

One thought on “AHA Seeking Patient Input for New HCM Initiative

  1. “AHA has done some work in the past around HCM research, but this is our first focused campaign.“ Better late than never. I’m glad that HCM is finally on the American Heart Association’s radar. HCMers are at risk of a sudden cardiac arrest & we just drop dead in minutes. Glad the AHA is willing to talk to us.

    Like

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