Wednesday, September 9, 2009

WATCH: Lisa Salberg on chronic illness and the health care reform.

Lisa Salberg is CEO and Founder of the Hypertrophic Cardiomyopathy Association, an organization with thousands of members from all over the world. Lisa is also a vigorous patient advocate who has actually read the proposed Obama health bill. Here's a portion of a recent interview in which Lisa addresses some of the myths being perpetuated by the media.

We don't usually delve into political discussions, but I just had to post this.

Here's the transcript of the clip:
We are human. We are all going to die. It's OK to talk about that. And it's OK to die with dignity. And... they're making it sound like we want everybody to die and we don't want to provide them with health care.

Nothing could be further from the truth that I've read in either of these bills. We want people to get access to care. We want them to have the care they want and they and their doctor have agreed upon. And we don't want people to be hooked up to machines if they don't want it, we don't want them to be taken off machines if they don't want it. It's individual choice. And we need to make sure people have access to that.

So, your question as to why are people acting like they're acting, I think they're acting this way out of fear of the unknown. And we keep bantering about a term... "Socialized Medicine"...

It's not socialized medicine. We're going to have the same infrastructure that we've had, we're going to ensure that people have access to care who were otherwise disenfranchised from the system.

You see, if you don't have a chronic illness, then it's not so real to you. If you're not a few minutes away—by virtue of the loss of a job—of losing access to what keeps you alive, maybe you don't really understand this problem.

See this? This is my implantable defibrillator. If this goes bad and I don't have health insurance, I need seventy thousand dollars to pay for a new one to be put in my chest so I can remain an active participant in society and continue to contribute by virtue of my taxes, and my contributions to making society a better place. And I think I'm worth it. I think other people with chronic diseases are worth it too. And to say that they should be disenfranchised and set aside or made to go broke because they happen to have a medical condition that happens to be costly to manage, that's not what we are as a society. We take care of each other, and we set up systems to ensure that we can take care of ourselves as best as we can!

I couldn't agree more. Thank you, Lisa!

The complete interview can be seen here:

And here's a link to the HCMA's web site:

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