Getting to the heart of hypertrophic cardiomyopathy (HCM): The power of the global patient voice

Many of us are familiar with important principles of improving cardiovascular health – eating a heart healthy diet, managing stress, getting regular exercise and knowing your cardiovascular risk numbers. But did you know that up to 1 in 200 people are living with a serious and frequently misdiagnosed cardiovascular condition called Hypertrophic Cardiomyopathy (HCM)?

HCM is a lifelong, oftentimes genetically linked disease where the heart muscle wall can thicken, stiffen and make it harder for the heart to pump oxygenated blood throughout the body. Symptoms may include shortness of breath, tiredness, rapid heartbeat, chest pain, feeling dizzy or fainting – all of which can significantly impact an HCM patient’s quality of life. HCM can lead to serious complications, such as fainting, heart failure, atrial fibrillation (AFib) and stroke. Many patients undergo a series of misdiagnoses and experience significant delays before receiving a correct HCM diagnosis. Without proper diagnosis and treatment, HCM patients may make adaptations to their lifestyle over the course of the disease. At first, these subtle shifts may go unnoticed, but over time, these changes can significantly impact a patient’s quality of life.

Reaching patients worldwide

Some experts estimate that HCM impacts over 20 million patients worldwide. As part of our Environmental, Social and Governance (ESG) strategy, Bristol Myers Squibb is committed to advancing patient health around the world and expanding the boundaries of science. As of 2023, over 80 low- and middle-income countries have potential direct import access for 12 BMS medicines. In the U.S., 26% of clinical trial participants were from racially diverse backgrounds with 58% of clinical sites located in highly diverse areas of the U.S. Outside of the U.S., BMS continues to expand our clinical trial footprint, with clinical trial sites in North America, South America, Europe and the Middle East, and Asia-Pacific countries.

BMS is proud to support global patient advocacy organizations who are leading the way in addressing unmet patient needs in HCM by activating the power of patient voices to advance efforts in worldwide HCM awareness, education and support.

Unifying globally for cardiomyopathy awareness

Until recently, patients around the world living with HCM had limited access to global resources and support networks. Recognizing the need for a unified patient voice in cardiomyopathies, the Global Heart Hub established the Cardiomyopathy Patient Council in November 2021, with the mission of identifying and bringing together cardiomyopathy focused and patient-led organizations across the world, creating a global alliance to increase awareness and understanding of cardiomyopathies. “Cardiomyopathy is often underdiagnosed, misdiagnosed, or diagnosed too late, and the consequences can be very serious. That’s why our Cardiomyopathy Patient Council aims to raise awareness and improve understanding of the disease - greater awareness and genetic screening are needed to support earlier diagnosis and improve health outcomes for patients,” says Neil Johnson, founder and executive director of Global Heart Hub.

Patients supporting patients: Peer-to-peer programs

In June of 2023, Mended Hearts Europe was founded as an independent nonprofit organization based in Switzerland, committed to fostering hope and enhancing the lives of cardiovascular patients around the world through peer-to-peer support, patient education and advocacy. “Mended Hearts Europe is unique in that we are a startup patient organization with 73 years of experience,” shared Emmanuel Chevron, executive director of Mended Hearts Europe. Emmanuel alludes to leveraging the depth of cardiovascular patient expertise established by Mended Hearts, Inc. through their longstanding history in the U.S., as the organization looks to expand its presence in Europe, the Middle East and Africa.

Driving change through policy advocacy

Instituto Lado a Lado pela Vida (LAL) is the only patient advocacy organization in Brazil with a dedicated mission to both of the leading causes of mortality - cancer and cardiovascular diseases. A recent collaboration between Lado a Lado and the Hypertrophic Cardiomyopathy Association (HCMA) has led to the two patient organizations partnering to create a patient-focused HCM educational poster in Portuguese and they are proactively identifying additional ways to support HCM patients in Brazil through an awareness campaign.

Speaking about the success of the recent collaboration and future opportunities to advance HCM advocacy efforts globally, Lisa Salberg, CEO and founder of the HCMA, shared, "Patients with hypertrophic cardiomyopathy have long struggled with complicated diagnostic journeys. Thankfully today they are benefiting from greater public awareness worldwide through our collaborative efforts. It has been a pleasure working with our Brazilian advocacy partners.” Marlene Oliveira, founder and president of the Instituto Lado a Lado, added, "Establishing partnerships with international organizations has been a constant action on our agenda for several years. These partnerships are important for us to have access to content and diverse experiences that open new perspectives and add knowledge, inspiring our actions in support of patients in Brazil.”

Getting to the heart of HCM

At BMS, we have always been driven by our mission of creating a world with better outcomes for those living with cardiovascular diseases. We are committed to boldly following the science to develop breakthrough medicines, but we also know it is equally critical that our medicines reach people who need them the most – regardless of age, gender, race, ethnicity or socioeconomic status. We are proud to work with global patient advocacy organizations who share our vision and sense of urgency in improving the lives of patients around the world. Together, we are getting to the heart of HCM.

For more information on how BMS is advancing efforts in cardiovascular research, please click here.