Mavacamten: A Plain Language Summary of EXPLORER – HCM

I was recently asked by the good people at MyoKardia, now a subsidiary of Bristol Myers Squibb, if I would author a plain language summary of an article to be published in the journal Future Cardiology.  This article summarizes the results of the EXPLORER-HCM trial, which showed that mavacamten, a new type of drug known as a “myosin modulator,” was successful in reducing HCM symptoms in subset of patients who took the drug during the clinical trial. 

I was so fortunate to have Dr. Anjali Owens of the University of Pennsylvania Center for Inherited Cardiac Disease join me as co-author on the article.  I also want to thank the teams at Bristol Myers Squibb and Cello Health Communications/SciFluent who supported us on this project.  And, I so grateful to the former MyoKardia team and the other members of the EXPLORER-HCM Steering Committee who gave me the opportunity to witness a groundbreaking clinical trial from the front row.

This is the article.  When you access the page, click to view the very informative short video, located in the upper right corner of the page, which explains how the drug works in very brief and concise terms.

Check it out!

Cynthia Burstein Waldman, Founder and Editor, HCMBeat

 

When the Doctor Becomes a Patient

Just about everyone involved with HCM has heard the name Dr. Barry J. Maron.  Dr. Maron has devoted his entire career to hypertrophic cardiomyopathy and has been perhaps the physician most associated with HCM, having gotten his start in the 1970s at the National Heart Institute.

In a brand new autobiographical essay by Dr. Maron, he retells his recent experience being diagnosed and treated for heart failure. 

When Dr. Maron experienced edema, difficulty lying flat, and trouble breathing, he rationalized it all away until he experienced a terrifying and life threatening episode, and even then, he decided to call an Uber to take him to the hospital instead of an ambulance! 

Once hospitalized, doctors were able to get to the root of his problem and treat Dr. Maron appropriately. Having received the proper care, he is now feeling much better.

Dr. Maron’s article concludes with three main takeaways:

  • Physicians should not diagnose themselves;
  • Heart failure is treatable; and
  • Listen to your cardiologist and live a healthy lifestyle!

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.

Continue reading “AHA Seeking Patient Input for New HCM Initiative”

MRIs for ICD and Pacemaker Patients

Here is an informative new video from our friend Doug Rachac that nicely explains the safety of MRIs for patients with implantable defibrillators and pacemakers.

I wrote a blog piece about this same issue a few years back. Here it is:

Yes We Scan! ICDs and MRIs

And a few other relevant blog entries here on HCMBeat:

Study Shows MRIs Safe for Pacemaker & ICD Patients

Chapter 3: MRI Safety for ICD & Pacemaker Patients

Safety of MRIs With Abandoned Leads

Last year, Doug wrote this blog entry for HCMBeat specifically about magnets and airports. Read that here:

Blogger Doug Rachac – Magnets and Airports: Should ICD Patients Be Afraid?

And, you can find more about ICDs from Doug on his YouTube Channel.

Dr. Harry Lever Speaks Out About Problems With Generic Drugs

This Medscape article highlights the extraordinary efforts of Dr. Harry Lever, Director of the Cleveland Clinic’s Hypertrophic Cardiomyopathy Center, in educating patients and physicians alike about quality issues with generic drugs.  Dr. Lever has been instrumental in publicizing the fact that generic drugs are NOT always the same as their name brand counterparts, and that foreign generics are not put through the same level of scrutiny as drugs in the U.S.

Continue reading “Dr. Harry Lever Speaks Out About Problems With Generic Drugs”

Dr. Srihari Naidu Talks About HCM Medical Education

Recently, Cynthia Waldman of HCMBeat corresponded with Dr. Srihari S. Naidu of Westchester Medical Center the second edition of an HCM textbook he recently edited, as well as about medical education surrounding hypertrophic cardiomyopathy in general. What follows is a transcript of their correspondence (which has been slightly edited for readability).

Continue reading “Dr. Srihari Naidu Talks About HCM Medical Education”

ICD Patients – Combat ICD Anxiety

This informative blog article written by a social worker for the University of Michigan’s Health Blog has some great tips on how to deal with anxiety when living with an ICD.

I recommend it.

Visiting Mayo Clinic

I had open heart surgery (a septal myectomy) to treat my hypertrophic cardiomyopathy in 2006.  I went back to Mayo twice for the two years following the surgery, but after that I hadn’t felt the need to return since I was regularly following up with my local cardiologist.  In April of 2018, it had been almost ten years since I had been back to Rochester.  So, I decided it was time to take a trip and make sure that all was in order.

Continue reading “Visiting Mayo Clinic”

Simple Lifestyle Changes Can Improve HCM Symptoms

This article by Dr. Stephen Heitner of Oregon Health & Science University covers some simple lifestyle changes that can help HCM patients feel much better. In particular, Dr. Heitner mentions:

  • Eating smaller meals and avoiding large carbohydrate rich meals.
  • Avoiding dehydration
  • Limiting alcohol
  • Avoiding exercise after eating
  • Engaging in moderate intensity exercise
  • Managing weight
  • Evaluating and treating sleep apnea and other sleep breathing disorders
  • Getting appropriate treatment for anxiety and depression

The above lifestyle changes, combined with appropriate medical treatment, will keep HCM patients feeling their best.

 

The Evolution of HCM: A Historical Perspective

This article, by Drs. Julio Panza and Srihari Naidu of New York’s Westchester Medical Center, describes early efforts to diagnose, categorize and treat hypertrophic cardiomyopathy, while explaining how these methods have evolved over time.  A very interesting and informative read.