Gordon Fox • March 10, 2025
COVID-19 vaccine with HCM?

HCM experts recommend vaccination

Getting vaccinated (or not) for any disease is a decision that each of us has to make. Ideally, it should be based on understanding the potential risks and benefits of the vaccine - and the risks and benefits of not getting vaccinated.


What is a vaccine?

A vaccine is something that stimulates the immune system to respond to disease-causing agents like viruses or bacteria. One common misunderstanding is that "immune response" means that you cannot become infected. This isn't correct; an immune response means that your system can better fight off the infectious agent. Some vaccines can produce an immune response that makes the chance of getting the disease almost zero. Others may produce an immune response that helps fight off the disease but does not prevent it.


The COVID-19 vaccine

With current COVID-19 vaccines, sometimes people get the disease after being vaccinated. This does not mean the vaccine is ineffective. The course of the disease is typically much shorter and less dangerous if you're vaccinated than if you're not. And it also happens that people get infected by a viral strain that isn't covered by the vaccines they've received. In any case, we know this much: many fewer get the disease if they have been vaccinated. Among those who do get the disease, many fewer have severe consequences like hospitalization or death.


Increased risk among HCM patients

People with HCM are not at any increased risk for becoming infected. But we are at much greater risk of severe consequences like lung or heart issues if we do develop COVID-19. That provides a strong argument for vaccination, especially because the vaccines are quite good at preventing hospitalization and death.


Can vaccines have bad consequences? 

Of course they can - like any medical treatment! Anything that causes an immune response may make you feel sick. After all, many symptoms are mainly caused by our immune responses and not directly by the infectious agent. Fever is an example; allergic reactions are also possible, though not extremely common.


Hearts, COVID-19, and vaccines

More particularly, can the COVID-19 vaccines lead to heart problems like myocarditis or pericarditis? Yes, but not often! There is an increased rate of myocarditis following vaccination, mostly among young men. On average, about 1 to 10 in 100,000 people in the US are diagnosed with myocarditis every year. The vaccines appear to increase risk, but not nearly as much as COVID-19 itself does! A large American study by Block et al. (2022) found that the risk of heart complications in men age 18-29 was 7-8 times greater among those infected with the COVID virus than among those vaccinated. Among males age 12-17 the risk was 2-6 times greater among those infected than among those vaccinated. It's not clear if the risk increased at all among females. So: yes, the vaccines can increase your risk or heart complications, as compared with someone who is not infected. But infection increases your risk even more.


Conclusion: docs recommend vaccination

For HCM patients, the COVID vaccine offers significant benefits with small risks. Not getting vaccinated offers no substantial benefits and fairly large risks. This is the reason HCM specialists unanimously and strongly recommend vaccination. 


Literature cited

Block JP, Boehmer TK, Forrest CB, et al. Cardiac Complications After SARS-CoV-2 Infection and mRNA COVID-19 Vaccination — PCORnet, United States, January 2021–January 2022. MMWR Morb Mortal Wkly Rep 2022;71:517-523. DOI:http://dx.doi.org/10.15585/mmwr.mm7114e1

HCMA Blog

April 15, 2025
It is hard to believe the first quarter of 2025 is in the history books. In the space of hypertrophic cardiomyopathy and thick heart muscle disorders, the distance between the promise and the delivery of a reality freed from burden of disease is closer than it has ever been, not only in the United States but throughout the world. Unfortunately, we are navigating through some challenging health policy times, which will impact a large percentage of those with the diseases we seek to serve. While we navigate these challenging waters together, we remain committed to ensuring safe, accessible, affordable, healthcare while ensuring the rights of those with disabilities are maintained. Last month, I attended two large conferences - one held in Stockholm, Sweden the other Chicago, Illinois. The research communities worldwide are holding their breath, waiting to see how we will move forward, even as we continue to develop new therapies, treatments and, even potentially, cures. It has never been more important to keep research moving, as we are so close to so many amazing improvements in our ability to care for those with thick heart muscle disorders, including HCM in all its forms, Amyloidosis, Fabry’s disease, Danon disease, and RASopathies. There was amazing science presented at the American College of Cardiology, where we warmly welcomed new president, Dr Christopher Kramer, the original director of the hypertrophic cardiomyopathy center at University of Virginia. We look forward to his leadership and wish him well in his challenging tasks ahead. Later this month we will be in Orlando Florida - please register and join us for this wonderful Bighearted warrior tour in person with our friends at AdventHealth and the incomparable Dr. Marcos Hazday. I even understand that there's some carpooling being organized from the Tampa area. If you're interested, reach out to the office and we will connect you. Maybe, the most impactful thing that will happen in the month of April is that we will conduct our second visit to Capitol Hill. Our lead topic this year is something you have heard us talk about at many prior meetings of the HCMA and podcasts; the generic drug quality issue. We are proud to be partnering with David Light, Co-founder and President of Valisure, and retired Colonel Vic Suarez, to ask House and Senate members to support the inspection of all generic drugs purchased by the Department of Defense and the Veterans Administration and make results of these inspections open for public use. Secondly, we are seeking rational oversight of health insurance companies’ abuse of prior authorizations and step therapy requirements. These issues cost an estimated 1.3 billion dollars a year and provide nothing to keep a patient safer or a physician's office running more efficiently. Common sense tells us to not waste money where there is no return. Additionally, prior authorizations and step therapies can keep patients sicker longer, ultimately costing the healthcare system more money. Our briefing will educate Representatives to act in an informed manner when moving policies that impact us all. You can watch us live at our briefing Wednesday April 9th 5:00 to 7:00 p.m. on Vimeo: https://vimeo.com/event/5043266 If you wish to get involved or more informed on any of the issues above, I encourage you to visit the website, 4hcm.org , or reach out to the office and the staff will be happy to assist you. On the day before I head out to Washington DC, I will leave you with this one thought - we have come a really long way in our understanding of HCM over the past 60 years. We have increased the lifespan of those with HCM, through collaborative research and implementation of best practices in an organized fashion throughout this country. We have worked so hard to end suffering for so many, and we are succeeding in our shared goal to outsmart hypertrophic cardiomyopathy and other thick heart muscle disorders. It is important to continue the research into all aspects of these diseases, including the biological, the clinical, burden of disease measurements. System improvements, positive impact of timely diagnosis and treatment, and the value to society of all of these big hearts being here, keeping their families whole. So we're off to DC to try to educate others about what it really means to live in our ecosystem. Best wishes, Lisa
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