Salberg said the HCMA Centers of Excellence effort will soon be celebrating its 50th hospital to enter the program. She explained these programs are built around a multidisciplinary heart team, and ensures training and sufficient patient volumes to enable these centers to offer top level care. 

Because HCM has been seen as a rare cardiac disease, most cardiology programs only find small numbers of these patients. As a consequence, many centers just do not have the volume to enable a large amount of experience. This is especially true in terms of imaging, cardiac surgery myectomy or interventional septal ablations. The idea for the program is for HCM patients to be referred to the higher volume Centers of Excellence for more advanced care.

"We help programs develop, get themselves organized, and sometimes help the champion at that center go to the administration and say this is what we are going to need to make this successful. I have worked with smaller community based hospitals as well as large academic medical centers," Salberg explained.

Ideally, she said the HCMA would like to see at least one center in each state, or at least within reasonable driving distance for patients. 

Some of the centers are located very far from where HCM patients live, so the HCMA also has created mini travel grants to help pay their expenses if they do not have the money to make the journey. This can often include hotel stays and sometimes flights and taxis. 

Salberg's personal struggles with HCM

She was diagnosed in 1980 when undergoing a school physical. Salberg said the doctor listening to her heart explained she had a serious cardiac issue and that cardiopulmonary resuscitation (CPR) may not save her life if her heart stopped. She then asked the doctor if she needed to bother finishing her homework anymore since the end seemed to be near. However, Salberg said the disease can be managed, but there are many challenges. There also are good days and bad, where one day a patient seems normal, and the next they cannot catch their breath or walk across a room. She said this is often misinterpreted by clinicians as being a physiological rather than a physiological problem, which is frustrating to HCM patients. 

"I had many battles with HCM, including five implantable cardioverter defibrillators, a stroke secondary to endocarditis, and ultimately advanced heart failure and a transplant," Salberg explained. 

She said this was part of her motivation to create a patient advocacy organization, but a bigger motivation was the death of her sister Lori, who was in her 30s, from HCM. Salberg said her sister's death was due to medical mismanagement of her condition, so she saw there was a clear need to not only educate patients, but also clinicians. 

As a hereditary disease that runs in her family, Salberg also lost her father, grandfather, uncle and aunt from HCM. She still has several members of her family's still living with HCM. However, she said her greater HCM family from her work with the HCMA has grown by hundreds, which has strengthened her and other patients. She said this is a tribute to her sister. 

Advocacy efforts to identify more patients earlier in life

Salberg said HCM is often found in children going in for sports programs physicals, or when there is a high-profile news story about a student athlete collapsing on the sports field and needing to be resuscitated. However, she said athletes only make up a small partition of children who later die from HCM. 
 
"We do good sports physicals, but why are we not doing them for all children? If you look at the statistics of all death certificate data, 80% of kids who dies under the age of 24 from HCM are not athletes, and only 20% are. So we need to make sure we are taking care of all patients, not just those who happen to be playing in a particular sport," Salberg explained. 

The HCMA is currently involved in advocacy efforts to get states to adopt the Healthy Cardiac Monitoring Act, which would require cardiac exams for all students, rather than just some types of athletes. 

Right now New Jersey is the only state that does this, she said. 

Salberg said in her case, it was a mandatory school physical that caught her disease early on. 

While HCM is considered a rare disease, cardiology experts say it is more likely that it is under diagnosed or misdiagnosed. Since there was no easy way to manage these patients, there was not a lot of effort put into training or diagnosing patients in the past. 

New drug treatment has brought HCM to forefront of cardiology discussions

About a year ago, the U.S. Food and Drug Administration (FDA) approved the myosin inhibitor mavacamten, which is the first drug on the U.S. market to manage HCM medically. Prior to that, the only options to treat the disease were myectomy or septal ablation to cut away or kill sections the hypertrophy tissue in the heart to avoid left ventricular outflow tract (LVOT) obstruction. The drug caused a lot of excitement because these patients could finally be managed in a noninvasive manner. Many centers recently created mavacamten clinics and expanded their HCM programs. 
 
"We actually helped with the clinical trial recruitment, and clinical trial education, engaging the patients and the site and getting everyone on the same team. And in less than 10 years, we moved from initial conversations and had a label, and I was happy to be a part of that," Salberg said. 

She said other HCM drugs are in development, including genetic therapies, which may further expand treatment options.