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There are literally thousands of people with similar stories that are more articulate - and less bitter and angry - than I am. And the media is slowly picking

by Shooter 17y ago

There are literally thousands of people with similar stories that are more articulate - and less bitter and angry - than I am. And the media is slowly picking up on these issues. http://underourskin.com/blog/ http://underourskin.com/blog/ recently mentioned, for example, the change in stance of Good Morning America's medical correspondent over the course of a year. Enough people are getting sick and raising a ruckus that there are finally some changes being made for the better and there is starting to be a more open dialogue. There is still a long way to go, though. I'm more of a behind-the-scenes type person. I have worked in trying to get legislation passed on these issues, and I've donated time and money to some of the organizations that try to help (legal defense funds for physicians, research studies, physician education grants, public education and outreach, etc.) My insurance company has tried to drop me, BTW, repeatedly. It's a constant battle. My wife, fortunately, is a Director at a major research hospital and she has a great deal of experience in battling insurance companies. And I'm very fortunate in being able to cover the cost of what they will not cover, at least for now. Many are not so lucky. Some states have enacted legislation to force insurers to meet minimum standards for these diseases, but most states let insurers get away with writing people off or even making it impossible for people to get diagnosed initially.

brandnewlow 17y ago
"My wife, fortunately, is a Director at a major research hospital" Holy cow, you're fortunate (all things considered).
sachinag 17y ago
I think you misunderstood me - I'm not talking about policy/legislative changes. I'm talking about having their office fight, as your wife does, with the insurance companies on your behalf. This is what "constituent services" does.
- Shooter 17y ago
  No, I understood. And I really appreciate your intentions. I just addressed the things that were most relevant to me in more detail. I do have congressman fight insurance companies on my behalf. But, I'm very lucky because of my wife and finances at this point in my life (finally), so I think I can have a bigger impact by thinking outside of my own problems a bit. One of the people that was very helpful to me in finding treatment (and her sister) are in the documentary I mention, for example, and she died from Lyme complications after filming because she was denied adequate treatment for so long. I know others that have died due to Lyme and associated vector-borne diseases. (A celebrity reference for the HN crowd: Mary McDonnell of Donnie Darko and Battlestar Galactica is an activist in fighting Lyme and associated tick diseases that I occasionally see because she had a family member die of Lyme.) In sum, people are dying - and wishing they could die - because of these diseases, so I also wanted to address other actions I have taken and that others can also take.
jrwoodruff 17y ago
Maybe the bitterness and anger is a good thing. You should be angry, I sure as hell would be. We all should be, your story is horrifying. But I think you're in an amazing position, and may not realize it. Your wife is a director at a research hospital, and, while I don't know who you are personally, I'll assume you're well connected in the tech world (otherwise why would you post this here). You obviously know very intimately what is wrong with the healthcare system. That's a very unique position of power, whether you think so or not. You have the ability to affect great change, especially with what's happening with health care in the U.S. right now. You -apparently- have some money (at least more than I do), connections, an amazing story and anger, a great motivator. I think everyone can understand if you can't, or you won't, but if it's in you, step up, pull strings, work behind the scenes, work in the spotlight, tell your story, influence who you can and get this fixed. This is still the greatest country in the world, and the ability for citizens to step up and fix what's broken is what makes it great. That's just my two cents, for what it's worth. And my apologies for the semi-patriotic rant at the end there. ;) I wish you the best as you continue this battle.

by Shooter 17y ago

brandnewlow 17y ago

"My wife, fortunately, is a Director at a major research hospital" Holy cow, you're fortunate (all things considered).

sachinag 17y ago

I think you misunderstood me - I'm not talking about policy/legislative changes. I'm talking about having their office fight, as your wife does, with the insurance companies on your behalf. This is what "constituent services" does.

Shooter 17y ago
No, I understood. And I really appreciate your intentions. I just addressed the things that were most relevant to me in more detail. I do have congressman fight insurance companies on my behalf. But, I'm very lucky because of my wife and finances at this point in my life (finally), so I think I can have a bigger impact by thinking outside of my own problems a bit. One of the people that was very helpful to me in finding treatment (and her sister) are in the documentary I mention, for example, and she died from Lyme complications after filming because she was denied adequate treatment for so long. I know others that have died due to Lyme and associated vector-borne diseases. (A celebrity reference for the HN crowd: Mary McDonnell of Donnie Darko and Battlestar Galactica is an activist in fighting Lyme and associated tick diseases that I occasionally see because she had a family member die of Lyme.) In sum, people are dying - and wishing they could die - because of these diseases, so I also wanted to address other actions I have taken and that others can also take.

jrwoodruff 17y ago

Maybe the bitterness and anger is a good thing. You should be angry, I sure as hell would be. We all should be, your story is horrifying. But I think you're in an amazing position, and may not realize it. Your wife is a director at a research hospital, and, while I don't know who you are personally, I'll assume you're well connected in the tech world (otherwise why would you post this here). You obviously know very intimately what is wrong with the healthcare system. That's a very unique position of power, whether you think so or not. You have the ability to affect great change, especially with what's happening with health care in the U.S. right now. You -apparently- have some money (at least more than I do), connections, an amazing story and anger, a great motivator. I think everyone can understand if you can't, or you won't, but if it's in you, step up, pull strings, work behind the scenes, work in the spotlight, tell your story, influence who you can and get this fixed. This is still the greatest country in the world, and the ability for citizens to step up and fix what's broken is what makes it great. That's just my two cents, for what it's worth. And my apologies for the semi-patriotic rant at the end there. ;) I wish you the best as you continue this battle.