Cardiomyopathy’s Impact on Patient Assistance

February 9, 2022 — Maurice Howerton was only 14 when he was first diagnosed with Hypertrophic Cardiomyopathy or HCM.

Maurice often played basketball at the fitness center across the street from the University of Pennsylvania hospital, where he worked. In April of 2012, at the age of 24, he was playing a game of basketball with some co-workers when he collapsed. The last memory Maurice had of that day was sipping from a bottle of Gatorade during a break. 

His co-workers recognized he wasn’t breathing and, fortunately, both were trained as EMTs and began CPR. Help arrived shortly after, and Maurice was resuscitated. He woke up that night in the Cardiac Intensive Care Unit and was told he had suffered a sudden cardiac arrest: his heart had stopped. 

What is Cardiomyopathy?

Cardiomyopathy occurs when the muscle in the heart thickens, stiffens, thins out or fills with substances the body produces that do not belong in the heart muscle.

As a result, the heart muscle’s ability to pump blood is reduced, which can lead to irregular heartbeats. In addition, it can cause the backup of blood into the lungs or rest of the body which often leads to heart failure. Cardiomyopathy can develop because of another disease, condition, factor. It can also be inherited. The cause is not always known.

There are several types of cardiomyopathy, including: 

  • Dilated: one ventricle of the heart becomes enlarged. This is more common in males and is the most common form of cardiomyopathy in children. This occurs at any age and may be inherited. 
  • Hypertrophic: the heart muscle becomes thick. This often presents itself in childhood and can cause sudden death in adolescents and young adult athletes. It is often inherited, and a person may not have any symptoms.  
  • Arrhythmogenic: the disease causes irregular heartbeats or rhythms. This is often inherited and more common in men.
  • Restrictive: the heart muscle is stiff or scarred. It can occur with amyloidosis or hemochromatosis and other conditions. This is the least common type. This included Transthyretin Amyloid Cardiomyopathy (ATTR-CM), both wild-type and hereditary.

Cardiomyopathy can affect as many as 1 in 500 adults. This means that more than 660,000 people in the US today are suffering from the disease. People live with this disease for long periods of time without diagnosis. It can affect males and females of all ages and races.

Heart disease is the leading cause of death for people of most populations in the United States, including African American, Native American, Alaska Native, Hispanic, and white men. It is the second most common disease affecting Pacific Islands, Asian American, Native American, Alaska Native, and Hispanic women.

Risks and Symptoms 

Each type of cardiomyopathy has its own risk factors or suspected causes. Below are a list of conditions or diseases thought to have higher risks for cardiomyopathy: 

  • Family history of cardiomyopathy, heart failure or sudden cardiac arrest
  • Connective tissue disease
  • Autoimmune disease
  • Coronary heart disease
  • Hemochromatosis, sarcoidosis, or amyloidosis
  • Endocrine disease, including thyroid conditions
  • Infections in the heart muscle
  • Long-term alcoholism or cocaine abuse
  • Muscle conditions such as muscular dystrophy
  • Pregnancy

Symptoms of cardiomyopathy can be mild, and some people do not have any symptoms at all until they have advanced in their disease. Those symptoms may include: 

  • Shortness of breath 
  • Fatigue 
  • Swelling in feet and ankles 
  • Irregular heartbeat or palpitations
  • Syncope (passing out)

Prevention of Cardiomyopathy 

Cardiomyopathy can be diagnosed based on your medical history, a physical exam, and diagnostic tests and/or procedures. Those tests and procedures might include: 

  • Blood Tests (including genetics testing) 
  • Chest X-Ray 
  • Electrocardiogram 
  • Holter or event monitoring 
  • Echocardiogram
  • Stress Test
  • Cardiac catheterization
  • Coronary angiography
  • Myocardial biopsy

Prevention of cardiomyopathy is geared toward lifestyle changes. There is no cure for cardiomyopathy, and it cannot be reversed. The goal is to help the heart be as efficient as possible to prevent further damage and loss of function. Some of the following options are available for treatment: 

  • Heart-healthy lifestyle changes 
  • Medications, including those used to treat high blood pressure, prevent water retention, keep the heart beating with a normal rhythm, prevent blood clots, and reduce inflammation 
  • Surgically implanted devices, like pacemakers and defibrillators 
  • Surgery
  • Cardioversion
  • Heart Transplant (as a last resort)
  • New medication treatments approved for help with ATTR-CM

The Financial Impact of Cardiac Disease 

Maurice Howerton admitted later that he wasn’t as attentive to his heart or his HCM as he should have been due to the cost of the annual check-ups with the cardiologist.

Treating patients with cardiac disease is expensive. According to a study done by the American Journal of Managed Care, the total mean direct medical care costs for patients with established cardiovascular disease were $18,953 per patient per year. Medications could cost $2000 or more out of pocket for patients without any assistance.  

This is Where We Come In

Accessia Health has a cardiomyopathy program, currently seeking funding. This fund will provide financial assistance with copays, premiums, travel, and other medical expenses. All of this helps to alleviate stress and worry for patients with cardiomyopathy.

To donate to this fund, click here and fill out the donation form. Make sure to designate your gift to the “Cardiomyopathy Fund.”

For more information, or to see if you qualify for assistance in any of our available programs, check out our prescreening tool and apply today. Call us at 1-800-366-7741* 


*Please consult with your healthcare provider or seek professional medical treatment if you have any medical concerns. Please do not disregard any professional medical advice or take any delay in seeking medical treatment based on anything that you may have read in this blog, on this website or any linked materials contained within. Thank You.