Happy June!
Congratulations to all the recent graduates, brides and grooms – it must be June. The HCMA has a few events coming up this month that you won’t want to miss. On June 9th there will be 2 events – the HCMA will be presenting at the 5th Annual Cardiovascular Health Policy Summit (PACH) in Washington DC...Click here to read the full letter.
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All of June: Online Discussion Groups
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Browse our June Discussion Groups to find one that fits you
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June 9th: Special Edition! Bighearted Warrior Tour Pediatric and Adolescent HCM (Multi-center)
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6:00pm EST: Join us for our Pediatric & Adolescent HCM Bighearted Warrior Tour with Keynote Speaker Jeffrey Towbin, MD from Le Bonheur Children’s Hospital. Click here for agenda and registration.
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June 9th: 5th Annual Cardiovascular Health Policy Summit, Washington DC
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9:00am - 2:00pm EST: HCM panel experts discuss public policy solutions to improve patient access and care, the importance of new, innovative treatments and therapies available, and non-medical switching in cardiovascular disease with Anjali Owens, MD and Lisa Salberg. FREE Registration, breakfast and lunch included at the InterContinental, the Willard Washington DC Hotel.
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June 15th: Special Presentation: Anatomy of an HCM Heart with Dr William Clifford Roberts
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12:00pm EST: Join us live on Facebook with Dr. William Clifford Roberts from Baylor University Medical Center and Lisa Salberg as they dissect and discuss an HCM heart. https://www.facebook.com/events/733154564532666
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Amy Mann
HCMA Meeting Coordinator
Virtual Bighearted Warrior Tour 2022
Happy Summer,
Bighearted Warriors!
We recently had our AdventHealth, Orlando, FL Bighearted Webinar, which received phenomenal feedback. If you missed it, you can find it on our Facebook page, YouTube channel, and HCMA video archive. Up next is our Special Edition Bighearted Webinar on Pediatric and Adolescent HCM at 6 pm EST on June 9th, which will feature expert faculty from multiple Centers. Our Keynote speaker is Jeffrey Towbin, MD of Lebonheur Children’s Hospital, Memphis, TN, who will be presenting “Babies and Young Children - Diagnosis, HCM/HCM Spectrum Disorders, and Genetics.” Other speakers include Peter Fischbach, MD, MA from Children’s Healthcare of Atlanta, Seshadri Balaji, MD, Ph.D. from Oregon Health & Science University, Christa Miliaresis, MD from Maria Fareri Children's, Westchester Medical Center, Shari Jefferies, MD from Hiawatha Behavioral Health (retired), and John, Jefferies, MD from University of Tennessee Health Science Center.
We are also currently planning a Bighearted Warrior’s Unite Webinar on Camzyos, the recently FDA-approved first-in-class drug for the treatment of obstructive HCM. Look out for upcoming details. We have many more Bighearted Webinars to be delivered this year. Don’t miss out on these free educational events! All are welcome to join any of our Bighearted Warrior events and can register on our calendar of events page online 4hcm.org.
HCM Academy
HCM Academy, our innovative peer-to-peer CME accredited educational program, has received funding for an extension! Geared towards medical professionals - particularly General practitioners, PCPs, community cardiologists, and other healthcare professionals that may encounter patients with HCM, it aims to improve care and find the undiagnosed. Nearly 40 workshops have taken place with nearly 300 participants. From those who completed the pre/post learning tests, we have seen an average knowledge gain of 18% and an average competency gain of 25%. We have received very positive feedback. As HCMA members, please help us get the word out! You can refer your health care providers from the HCMA website https://4hcm.org/hcm-academy/. We plan to expand this program so that all of our Centers of Excellence have educators to improve care in their communities. If you would like a digital flyer to send to your health care provider (PCP, Internist, NP, Community Cardiologist), please contact me at amy@4hcm.org.
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Ross Hadley
Project Manager
Project Management
Project management is in design mode creating new tools to support our patient activities.
All of our activity supports advocacy for those with HCM. On a personal note, this marks my anniversary of being diagnosed with Apical Non-obstructed HCM and AFIB. Recently, I have been involved in several meetings regarding those with combined HCM/AFIB and the importance of education. This will be education on a global scale and reminds me how fortunate we are to have HCMA Recognized Centers of Excellence to provide support and education. If you need to find a Center of Excellence, click here.
If you are newly diagnosed or have questions about your care, schedule an intake call with the HCMA for education and support opportunities.
Finally, please remember that none of this is possible without your support through membership and donations. If you are unsure if your membership is up to date or you would like to donate but don't like to put your credit card information online, please give us a call at 973-983-7429 and a staff member will be happy to assist you.
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Elena Morgan
Assistant Director
Camzyos(Mavacamten) Access Options
May was an exciting month with the FDA approval of the first-in-class treatment for symptomatic, obstructive HCM. Camzyos (mavacamten) aims to tackle HCM at its source rather than managing symptoms as previous treatments have done.
Here at the HCMA office, we have heard that our clients are beginning to be prescribed Camzyos and some have even started the drug.
Here are some obstacles that patients have encountered and some suggested solutions:
Patients with private insurance have found the drug prohibitively expensive.
- Bristol Myers Squibb, the manufacturer of Camzyos, has a copay program in which patients pay as little as $10 per month.
Private insurance companies have denied Camzyos coverage.
- Bristol Myers Squibb, the manufacturer of Camzyos, has a helpline where you can receive personalized assistance with your insurance appeal process. You can call the helpline at 888-694-2059 from 8 am-8 pm ET.
Local cardiologists cannot prescribe Camzyos.
Camzyos is not carried at local pharmacies.
Medicare patients have found the drug prohibitively expensive.
Please reach out to
BMS (888-694-2059) or the HCMA (973-983-7429) if you need assistance with Camzyos.
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Julie Russo
Volunteer Coordinator
Share Your Story
Without a doubt, our volunteers are awesome! Sometimes we just can’t say it enough. Last month we reached out to our community for HCM stories from patients in every state as we move forward with our legislative initiative to find the undiagnosed. The response was amazing! Our HCMA staff and interns will be working hard this summer to collaborate with these volunteers to get their stories up on our website.
The HCMA is working to introduce and pass state-level legislation called the "Healthy Cardiac Monitoring Act" (HCM Act).Our state legislators need facts and statistics (of which we have plenty!), but patient stories are also key! Providing patient stories from actual constituents makes the HCM Act more relatable. Legislators are more likely to support it because YOU are who they represent!
If you have already volunteered to share your story, we will be in touch soon! If you have not yet volunteered but want to share your story, you can sign up from our website by clicking the following link: https://bit.ly/3DNBKJI.
Under "Projects," choose "Share My Story Volunteer Group" or email julie@4hcm.org.
Legislative Advocacy
If you would like to volunteer for this project, click the following link: https://bit.ly/3DNBKJI. Under "Projects," choose " Elizabeth T. McNamee LEGISLATIVE ADVOCACY VOLUNTEER GROUP".
Free Online Patient
Discussion Groups
Our HCMA theme for June 2022 is “Exercise and Balancing work/family/HCM while keeping fit (mentally and physically).”
While our online support group leaders have set themes and titles for their group meetings, they are also ready to facilitate group discussions around this important topic with their participants. Our online discussion group meetings are recurring, but you must register for each meeting date. Our meeting dates, times, and topics are updated regularly, so check our event calendar regularly to join a meeting (or more than one) best suited for you! To view our event calendar and our discussion group leader bios, please click the link below:
If you have any questions about our volunteer projects, you can reach me via email at julie@4hcm.org. We truly appreciate the many generous people who donate their time and talent to advocate for and support our community.
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Julie Olsen
Events Coordinator
Fundraising Opportunities
Save the date!
We have something very special planned for Saturday, October 22nd. More details to come; this will be an event you don’t want to miss!
Sock it to Me!
You can show your support for the HCMA with a pair of branded socks, and the HCMA will earn 35% of the proceeds. To take a peek and order, click here. Our sock fundraiser runs through the end of June.
Do you have an idea and need a little guidance on hosting your own fundraiser to benefit the HCMA? Email me, and let's talk, JulieO@4hcm.org! I would be happy to give you the advice you need to make it happen.
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Sabrina Cuddy
Intake Coordinator
The HCMA’s focus for June is Fitness in HCM!
There’s a lot of confusion about exercise for HCM patients. Some are told “don’t do anything physical,” others are told, “do whatever you want.” We can likely agree on one thing – they’re both wrong, and the best advice is somewhere in the middle.
Experts agree that exercise is healthy for people with HCM. Depending on symptoms, most people with HCM can safely do light exercise like walking. Most people with symptomatic HCM aren’t advised to do heavy exercise. It’s best not to do intense activity or contact sports like football. Those with HCM who have no symptoms may be able to exercise without restrictions. Listen to your body and slow down or stop if you find your symptoms are increasing. Make sure you stay well hydrated. Work with your HCM specialist to find the best level of activity for you.
One useful approach to fitness was created by an HCM specialist and team at the well-regarded Peter Munk Cardiac Centre in Toronto. This program has three fitness levels. Their website shows you how to maintain heart health through videos, medical information, and a proven exercise program. http://hcmfitness.ca/
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Tales from the Heart
New Podcasts
Episode 56
A Review of Redwood HCM OLE with Dr Steve Heitner and Dr Dan Jacoby from Cytokinetics
Episode 57
Medical Management, Managing Symptoms and Medical Side Effects
Episode 58
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Get your socks now! This fundraiser will end at the end of June. |
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Sock Fundraiser (sale ends June 30th)
You'll be styling in our cool HCMA heart themed socks!
Choose from 9 designs and 35% of sales will go to
the HCMA ($14.99 a pair).
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Event Postponed
Open House - Meet and Greet at the new Lahey Hospital & Medical Center HCM Clinic" on June 3rd, 2022, has been postponed.
Unfortunately, due to the surge in Covid-19 numbers, this event has been postponed until the Fall of 2022. We apologize for any inconvenience.
Please stay safe and healthy while we reschedule this event. – Stacey Titus
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This Month's Highlighted HCMA Recognized Center of Excellence:
Lahey Hospital & Medical Center: Hypertrophic Cardiomyopathy Center, Burlington, MA
Lahey Hospital & Medical Center is proud to have launched the Hypertrophic Cardiomyopathy (HCM) Center, offering highly personalized care and leading-edge treatments to achieve a good quality of life and longevity for our patients with HCM.
The Center is led by Drs. Martin S. Maron, Barry J. Maron, and Ethan J. Rowin are internationally recognized authorities and innovators in HCM, with a combined more than 75 years of expertise in managing patients with this disease.
They offer a multi-disciplinary approach to HCM patient care with treatment strategies relevant to each individual patient, employing a team of specialists including Susan Vertente- Program Coordinator, Noreen Dolan, NP- Nurse Practitioner, Catherine Carroll, NP-C- Nurse Practitioner, Paula Mooney, NP- Nurse Practitioner, Prem Shekar, MD- Cardiothoracic Surgeon, Gautam Gadey, MD- Interventional Cardiologist, Thomas Piemonte, MD- Interventional Cardiologist, Arjun Majithia, MD- Interventional Cardiologist, Bruce Hook, MD- Electrophysiologist, Jonathan Silver, MD- Electrophysiologist, Frederic Resnic, MD- Chair, Cardiovascular Medicine, nutritionists, and social workers.
The Hypertrophic Cardiomyopathy Center is accepting patients. Please call Sue Vertente at 781-825-8650 or email hcmcenter@lahey.org for further information or to schedule an appointment.
To watch the Special Announcement:
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Volunteer Recognition for ACC project |
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Tracy Argandona
Vi Tang
Brian Blakely
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Michael Duddy
Karen Newstrom
Megan Jones
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Marla Kennedy
Feda Briggs
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18 E Main Street, Suite 202 l Denville, NJ 07834 l (973) 983-7429 l 4hcm.org
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