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Launch of the Hypertrophic Cardiomyopathy Medical Society: Interview With Andrew Wang, MD
In this article, we talk with Andrew Wang, MD, about the launch of the Hypertrophic Cardiomyopathy Medical Society (HCMS), a new medical society for professionals dedicated to improving the lives of HCM patients through clinical excellence, research, and education.
Congratulations on the launch of the HCMS! Can you give us some background about the creation of this society?
This is a society that was inspired by the growing interest and new treatment options for patients with HCM. I think there was a realization that most of the people who were working in this field were often working individually or separately at their own institutions, as opposed to in a more collaborative way. So, the society was formed out of an interest in trying to develop consensus and collaboration for a better understanding of HCM and for advancing the field.
Tell us about your role within the society and about the board of directors.
I am on the executive committee, which is a 2-year term. My role is to give feedback and ideas for how to develop and advance the mission of the HCMS. The board of directors consists of about 15 HCM thought leaders who have contributed greatly to our current understanding in the field of HCM. They provide an even greater perspective of perhaps where the field has been, where it is currently, and where it is going in the future. So it is a broad and diverse group of not only physicians across different specialties, but also patient representatives and nurse coordinators. The idea is to have many voices who are experts in their own areas of HCM to ensure we cover all aspects of the disease.
What is the mission of the HCMS? What sets the HCMS apart?
The mission of the HCMS is to be a home for people of many different specialties who are interested in advancing the field of HCM. That is largely going to be physicians, but will also include genetic counselors, advanced practice providers, nurses, and other positions across the spectrum to create a broader collaboration for studying and improving outcomes in HCM.
What sets the HCMS apart is that while there has been much patient support with educational initiatives in HCM, there has been no medical arm working collaboratively. The HCM Association, led by Lisa Salberg, is a well-established and important patient support organization with educational and advocacy components to it. We seek to complement that with an accompanying medical society.
What is the estimated prevalence of HCM?
It is estimated that HCM affects approximately 1 in 500 persons across all regions, ethnicities, and sex. That includes those with expression of the disease, meaning that HCM has already been clinically detected. In some studies, the prevalence of an abnormal genotype that would be at risk of developing into HCM may be even greater, including 1 in 200 by some estimates.
What challenges still exist in the diagnosis and management of HCM?
There are many, and that is one of the main reasons why I believe there was interest in developing the HCMS. In terms of diagnosis, we know from studies of administrative datasets that, based on prevalence estimates, perhaps only 1 in 5 patients have been diagnosed already, and that is because the main criteria for diagnosis of HCM is evidence of left ventricular hypertrophy on a cardiac imaging study. But to get to that point and have it recognized, there are a number of challenges in terms of physician and provider recognition of the symptoms as being potentially due to HCM, as well as assessment of the imaging to determine HCM rather than left ventricular hypertrophy. Most of us think of HCM in a more classic form of left ventricular outflow tract obstruction (LVOTO) and hypertrophy in the basal part of the septum in the LVOT. However, there are many different patterns of hypertrophy that are all part of or an expression of HCM. I think many people still do not recognize it for that reason.
In terms of management, there have been many advances in the field with regard to reducing the risk of sudden cardiac death (SCD)—that has largely been the focus. More recently, there has been increased interest in improving the quality of life for patients with HCM. Many of these patients have impaired functional status because of their symptoms, and there are still opportunities for more options and evidence behind what we can offer these patients.
Finally, there is growing research focusing on modifying the expression or development of HCM and its clinical complications.
What are a few of the most promising emerging medical and surgical therapies for HCM?
Part of the inspiration for this society is that there is a new class of drugs for the treatment of patients with obstructive HCM. These are the cardiac myosin inhibitors, which reduce the hypercontractility of the left ventricle that is typically found in patients with HCM, and by that mechanism, significantly reduces the LVOT as well as improves symptoms and exercise capacity in patients with HCM. This is the first class of medications that is specifically indicated for obstructive HCM, receiving approval in April 2022. All other medicines that we use for treating HCM have been approved for other cardiovascular conditions such as hypertension, angina, or coronary artery disease.
In addition, there are investigational and established therapies to treat LVOTO. Having more treatment options emphasizes the importance of engaging patients in shared decision-making with how they want to manage their symptoms and quality of life.
What can you tell us about the inaugural HCMS Scientific Sessions?
The sessions are taking place September 30th in Washington, DC. As we were launching this society, we wanted to engage thought leaders and people interested in this disease and bring them together early on to start working collaboratively on improved outcomes in HCM. We had to decide quickly whether to try a standalone event separate from another major medical conference, which was challenging coming out of a pandemic, or add it onto an already existing meeting. We decided to hold it as an adjunct to the Heart Failure Society of America meeting. It is a full-day event with both an in-person and virtual option for attendance. There is going to be a review on where we are in the diagnosis and management of HCM. Many of the speakers are international thought leaders in the field and will discuss where the evidence is now and how to move forward in improving the diagnosis, management, and study of HCM.
Is there anything else you would like to add?
Electrophysiologists have been, to date, obviously very important in improving the outcome of patients with HCM, because one of the most feared complications is SCD. Their expertise in understanding and assessing the risks of SCD in HCM is extremely important. The use of primary prevention implantable cardioverter-defibrillators has been one of the most important therapies to reduce mortality related to HCM. We value EPs’ input in terms of other types of arrhythmias that significantly affect HCM patients, specifically atrial fibrillation and its associated high risk of stroke in HCM.
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