Spotlighting the HCM Patient Experience

Spotlighting the HCM Patient Experience

At Bristol-Myers Squibb, everything we do is in service of enabling people to healthier and fuller lives – and achieving that means truly understanding the experiences and needs of those people. We work closely with patients and patient advocates to ensure we’re focused on the most promising and most meaningful health innovations. And while patients are our focus daily, we celebrate our Global Patient Week each year where we shine a spotlight on people who inspire all we do.?

And part of that means sharing their stories and their insights on the health challenges they face and how companies like BMS can strive to improve their quality of life through innovative treatments. I recently spoke with Ross from Iowa, a patient advocate living with hypertrophic cardiomyopathy (HCM), a disease in which the heart muscle becomes thickened, making it more difficult for the heart to pump and circulate blood effectively in the body. As we wrap-up this year’s Global Patient Week this seems like the ideal opportunity to share the conversation we had about his personal experience living with HCM. #bms_employee #HCM

Can you share what your personal journey with HCM has been like?

Sure – the first indication that something was abnormal was some chest tightness and shortness of breath. I saw my doctor where they ruled out asthma and suggested that I reduce stress and lose weight. This was the pattern I experienced for several years, during which symptoms gradually increased – to the point that I became seriously concerned that I might pass away. This fear caused me to take out a life insurance policy which required a physical. It was during that physical that an abnormality was noticed on an EKG, which resulted in my being sent to the hospital where a transesophageal echocardiogram and further workup with my cardiologist revealed that I did have apical HCM.?

But the journey begins with diagnosis – it doesn’t end there. I’ve seen the way we treat and approach HCM change since my diagnosis. In fact, I just today learned that a genetic screening I had done revealed that my HCM may be connected to a variation in my MYH7 gene. This now gives my doctor more information about my HCM and how best to approach treating it. When I had a similar test done 6 years ago, this wasn’t identified but, in those years since, the technology seems to have become that much more rigorous.?

What has been the biggest change you’ve seen in how HCM is treated and managed since you were diagnosed???

One of the most important things really has been discovering that I’m not alone – that there’s a real community of people living with this condition and people dedicated to making sure that HCM gets the attention it needs and deserves. When I was diagnosed, my local cardiologist made it seem like I was dealing with something very rare, but when I went online, one of the first things I found was that 1 in 500 people are estimated to have HCM, though they may not ever be diagnosed. But just knowing that this wasn’t all that uncommon and that there were people working to bring patients together and find real solutions to living with HCM was meaningful. I utilize a management plan for HCM approved by the American College of Cardiology and American Heart Association. Having this structure already in place made me comforted that this was not something unknown by the medical community.?

What would you most want to say to a person who has been recently diagnosed with HCM that they might not hear from another source???

The biggest is simply to listen to your body, don’t be afraid to speak up and be your own advocate. No one knows what you’re experiencing better than you do. One of the challenges of HCM is maintaining a fluid balance – essentially avoiding dehydration which can make HCM worse. Doing this can be a bit of a dance and everyone is going to have to find their own way to achieve that balance for themselves but getting it down has been helpful for me. And that is where having a good support team – starting with a cardiologist you trust and have a strong connection with – can make this a more livable disease.?

What remains the largest unmet need – in your experience – faced by HCM patients??

The biggest really is better and earlier diagnosis. Studies suggest that HCM may be underdiagnosed when compared to estimates of how commonly it is diagnosed. It took more than a decade from the first time I complained to a doctor about my symptoms to getting the imaging that led to an HCM diagnosis. In that time, I was left feeling like maybe I was a hypochondriac or misunderstanding my own body, but it was simply that no one was looking for HCM when they should have been.?

Is there anything on the horizon for HCM patients that you think would make a significant difference in their ability to live with this disease?

There are a number of things that I’ve seen that make me excited and hopeful for the HCM community: imaging solutions to detect and monitor the disease, the increased acceptance of telemedicine, and the fact that it’s clear many people are spending the time and energy to make HCM a priority for innovation.?