Do people with bad or no insurance simply die from HOCM?

A couple of points, without meaning to take away from your point of the importance of having good health insurance or the potential disastrous consequences for those who don't. First, if .02% of people in the US have HCM, and the population is 350 million, then 70,000 people in the U.S. have HCM. Second, a significant percentage of people with HCM are asymptomatic, and many of those have normal life expectancies despite having HCM. That said, there are certainly thousands of people in the US (and many multiples of that in the world) who suffer a lower quality of life due to inaccessibility to HCM experts due to (1) their lack of health insurance and/or financial resourcs; and/or (2) the concentration of HCM expertise in the centers of excellence. The solutions to those problems are universal health insurance, training of physicians, providing incentives for physicians to work with underserved populations, further development of medicinal solutions that may be able to reduce the need for experienced surgeons to handle the cases that require myectomies, and training of more young surgeons to handle the cases for which medicine does not provide an adequate solution.

yes I agree. sadly none of this is likely to happen in this country...ever. A comedian once joked about the U.S. that if you were to help an elderly disabled grandmother across the street, you are a communist lol. Sad.

@jmr091805 I agree with him, it is not the norm here in this country to do anything for anyone, or even an expectation that you are cruel to those less fortunate. It is a travesty, and a lot of people suffer because of it. I still have hope that one day we will actually be a great country and all the people will be taken care of.

Hypertrophic cardiomyopathy , I was diagnosed 3 yrs ago. Since that I was put on Verapamil 240 mg
Metoprolol Tartrate 50 mg,Spiroholactone 25mg.

I’m out of breath, sweating for no reason,dizzy,brain fog.
My life isn’t a life anymore due to the above symptoms.

In addition, need a knee replacement, I’m working on getting my BMI down so I qualify got it.

I’m a 67 year old Grandmother. I feel like my heart problem is getting worse. My Dr. increased my meds. It just makes the symptoms above worst.

I would appreciate any comments that might help .

Currently, I’ve requested a Second Opinion, no appt yet.

My insurance is Medicare and Physicians Mutual.

Debby

I

@melton1918

Dear Debby,
My mother had bad HOCUM with no care until she was 80. She was dynamite and out worked everyone. I inherited her heart and I've been dealing with it with few symptoms other than severe fatigue. Without care, this is how you deal with it best: Rest. Don't ever, and I mean ever, push your heart to work hard. That means, you cannot run. That means when you tire, you rest. You just have to tell your friends and family your heart limits what you can do. My mother lived to be 93 and died from a stroke. She never had a heart attack. She rested every time that heart acted up and she had severe symptoms. The key is rest, don't push your body, rest.... Oh, and you probably know this already, no alcohol whatsoever.

Not necessarily. It depends on how much they demand of their hearts. This is why we see young athletes dying on the field or in the middle of a game. They usually have HOCUM without knowing it. But as I"ve pointed out earlier, my mother had a pronounced case of it with no treatment until her 80's. She outpaced, outworked everyone. When she felt her heart was acting up, she would sit on the sofa and tell us ''not to worry, she knew what to do.'' And she did. She rested. She didn't move until the episode passed. And no alcohol. The key is to treat your heart very carefully. When I was diagnosed, I was instructed to stop running, stop swimming, and rest. It is not a death sentence unless you push your heart too far.

So my insurance is good insurance but they said they are not paying for the camzyos, so I called the program and they said if my insurance doesnt agree to pay after the appeal I would just keep getting it for free.

@melton1918 Has your cardiologist started you on HCM medication? Camzyos? If not..... you def need a different cardio who has a clue. If you have a diagnosis they dont understand or know how to treat they need to refer you out. You can refer yourself out though with certain insurance, I have Cigna and do not need a referral. I got myself referred to Cleveland Clinic but I cant get in until March, but at least I'll have 3 months of this medication onboard so that may or may not be a benefit. Hugs and Prayers, please advocate for yourself.

@cash298 Hmmmm, if they gave it free to all as prescribed by doctors, I wonder if our medical premiums/copays would be less because the insurance companies would not be paying out to the drug companies. Just a thought.

Working with an independent insurance agent who will research all insurance plans to find one that will cover Camzyos worked for me.