Experts in the Hypertrophic Cardiomyopathy Center at Tufts Medical Center are there for patients every step of the way
Hypertrophic cardiomyopathy (HCM) is the most common cause of sudden cardiac death in young people, including competitive athletes. It also can be a major cause of heart failure symptoms in patients of any age. Complex, yet relatively common, HCM is a genetic heart disease which involves abnormal thickening of the heart muscle. The HCM Center at Tufts Medical Center has been comprehensively evaluating and treating HCM patients for more than 10 years; and our Center is now recognized as one of only four HCM Centers of Excellence in the country—the highest rating given by the Hypertrophic Cardiomyopathy Association.
The HCM Center at Tufts MC is comprised of a group of nationally-renowned cardiologists, surgeons and advanced caregivers whose priority is to educate patients and their families about HCM and deliver care at the highest level. The focus and passion of the team has laid the groundwork for collaboration and expansion geographically.
“HCM is the only disease we focus on,” said HCM Center Nurse Practitioner Noreen Dolan, NP. “Our patients know they’re in the right hands as soon as that first clinic visit starts. When it comes to HCM—we see it, we know it, and we know how to treat it.”
Symptoms and Treatment
Many individuals with HCM never experience serious problems. Others, however, may have severe warning symptoms similar to other forms of heart disease, the most common being shortness of breath, exertional fatigue and chest pain. While most symptoms can be controlled solely with medications, invasive therapies are required for some patients to decrease or eliminate symptoms and improve their quality of life.
Surgical septal myectomy and alcohol septal ablation are the two invasive treatment options available. Septal myectomy is an open heart surgery that involves removing part of the thickened heart muscle, relieving obstruction and restoring normal blood flow out of the heart. Alcohol septal ablation is a catheter-based procedure that achieves a similar result by injecting a small amount of alcohol into the thickened muscle, eliminating obstruction to blood flow out of the heart.
Fortunately, only a small percentage of HCM patients are at risk for sudden cardiac death. A result of a fast, abnormal rhythm originating from the thickened heart muscle, sudden death can occur often unpredictably, but is most often seen in younger patients. For this reason, a major focus of the HCM Center is identifying patients at risk for sudden death and providing lifelong protection for them with an Implantable Cardioverter Defibrillator(ICD) device. Electrophysiologists permanently implant an ICD under the skin where it senses and treats potentially lethal arrhythmias.
“Every avenue of treatment a patient could possibly need for HCM is provided here at Tufts MC by practitioners with international levels of expertise,” said Director of the HCM Center Martin Maron, MD. “We work with every patient to determine the right treatment strategy for them, and no matter what their clinical course may be, they have the top HCM specialists on their care team.”
“The anxiety patients feel at the beginning of their visit is replaced by relief at the end of their appointment,” said Dolan. “They know they’re in the right place with the right team.”
The HCM Center is also at the forefront of clinical research aimed at improving diagnosis and management strategies for all patients with HCM. More than 100 original scientific papers describing the results of our specialists’ HCM research, have been published in top cardiology journals.
Currently, the HCM team is involved in a variety of investigative research projects focused on developing a better understanding of the disease, which could potentially lead to novel therapies that may halt disease progression in at-risk patients. In addition, the Center is leading the way on a number of clinical trials evaluating the safety and efficacy of several recent innovative drug therapies that aim to mitigate HCM symptoms (like shortness of breath).
The Center’s multi-disciplinary program, clinical experts and scientific leaders are providing patients with state-of-the art care and the most advanced diagnostic and treatment options.
In 2014, New Jersey’s Morristown Medical Center—part of the Atlantic Health Network—reached out to the Tufts MC HCM Center with a unique proposition. The Mast family, who had lost their daughter, Chanin, to HCM several years earlier, wanted to make a difference in the lives of other patients with this disease by providing critical funding to create the Chanin T. Mast HCM Center. The Mast HCM Center is a clinic at Morristown Medical Center dedicated to the care and treatment, of patients with HCM in the region. Dr. Maron and Chief of Cardiology James Udelson, MD were asked to manage the relationship, as the mission of the Tufts MC HCM Center aligned with what the Mast family envisioned for the HCM Center at Morristown.
The Mast HCM Center, with Tufts MC as a partner, provides world-class care to patients throughout the New Jersey region. Patients receive access to renowned specialists, counseling support, the latest treatments, and have a direct line to Tufts MC’s other HCM specialists for advanced care and procedures.
“Having a physical presence in Morristown allows Tufts Medical Center to extend our expertise in HCM regionally,” said Dr. Maron. “It’s a win-win for both Morristown Medical Center and Tufts MC.”
Today, both Dr. Maron, and Associate Director of the HCM Center Ethan Rowin, MD travel to Morristown to provide HCM consultations. Treating patients in this manner—at an academic hospital outside of the Medical Center in Boston—is a first for Tufts MC.
In 2015 alone, 20 invasive procedures were performed at Tufts MC as a result of the team’s presence in Morristown. “Mast HCM Center patients are likely to travel to Tufts MC if they need an advanced procedure because of the lifelong relationships we’ve developed with them,” said Dr. Rowin.
The Future of the HCM Center
The success of the HCM Center for the past 10 years, along with the creation of the Mast HCM Center, has played a key role in establishing The Hypertrophic Cardiomyopathy Institute at Tufts MC, with the support of Tufts Medical Center and its Cardiovascular Center. The goal of The HCM Institute is to become the world’s premier HCM Center, in terms of quality of care, patient outcomes and the advances in HCM patient care derived from our basic, translational and clinical research.
The HCM Institute will expand its physical presence by moving into a dedicated space in the hospital, equipped with exam rooms and offices, in order to more effectively evaluate, treat and educate HCM patients and their families. Additionally, the research arm of The HCM Institute will recruit a scientist dedicated to the study of HCM, with a focus on the development of novel targeted therapies to alter the course of the disease. In order to achieve these goals, The HCM Institute has set a fundraising goal of $5 million during the next several years.
The HCM Center is breaking the mold at Tufts Medical Center, and between the team’s compassion and its unmatched ability to connect with patients on an expert level, the future looks even brighter.
As Dr. Maron describes it, “We have our patients’ best interest at heart.”
For more information or to make an appointment, please contact the HCM Center at 617-636-8066 ext. 1 or visit www.tuftsmedicalcenter.org/hcm.