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September 23, 2010 - Patients' Independence Day

Today is the day these kids get to declare independence from pre-existing conditions and chart their own course. With the Patients' Bill of Rights taking effect today, they're no longer in bondage to pre-existing conditions. 15 months ago, the

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Today is the day these kids get to declare independence from pre-existing conditions and chart their own course.

With the Patients' Bill of Rights taking effect today, they're no longer in bondage to pre-existing conditions. 15 months ago, the older of the two developed ulcerative colitis. It took 3 months to properly diagnose, and the treatment for the colitis caused a serious diabetic reaction. Until that summer, he had been perfectly healthy. On his 20th birthday, he was a slave to insulin injections and alternate medications for the colitis. He is a musician. Musicians generally don't work for big companies with group insurance, so he was faced with having to give up his career hopes or find an alternative.

The day after his diagnosis our insurance company dropped our coverage and refunded my COBRA premiums. We had to pay for all of the meds, diagnostic tests, ongoing lab tests and supplies out of pocket, which meant pulling money from the 401k balance. I'm grateful that small 401k was available, but of course, now it's not available for retirement. Still, no regrets -- parents do what they can for their kids.

If his health problems had all arisen today, things would have been much, much different. For starters, they couldn't have dropped us when he was diagnosed, which would have meant our out-of-pocket costs would have been far lower than they were. We also wouldn't have had to continue to pay all of his expenses out of pocket after we were insured again (they excluded his colitis and prednisone sensitivity as a pre-existing condition). Also, my daughter wouldn't have been excluded from coverage for her 'pre-existing conditions'. I use that term with derision in her case, because she had none until Anthem Blue Cross found one or two.

If my son had needed surgery or some other treatment that was expensive, they could have denied him and it would have been up to us to front the money. But no longer. Now he is covered, and his future is his to decide without being limited by what health insurers would or would not do for him.

When they are 26, pre-existing conditions will be a thing of the past forever. A dinosaur. No company will be able to exclude them from coverage and access to health care, nor will they be able to refuse to insure them. They won't have to worry about losing coverage if they get sick, and they won't have to worry about lifetime limits on what will be paid for illnesses.

In other words, they have a future where they can reasonably expect to make their own way without intervention from health insurers. They have a future where they can be self-employed, create according to their own talents, or work for someone else if that's what they want. They will not have to worry about losing their home or all they've worked for because they had the misfortune to be stricken with health problems.

Republicans want to take this peace of mind away from me and millions of other parents and their children. They think it's an abomination that my son, through no fault of his own, has a chronic disease he will live with for the rest of his life but will not have to worry about having access to health care. An abomination. They really believe that.

There's still a lot of work to do. At some point, health insurers will become obsolete, hopefully soon, and hopefully at a time where Medicare has been shored up and its administrative overhead streamlined in order to accomodate the option to buy into Medicare regardless of age. That's ahead if we can stay focused on getting a better legislative branch in place.

But without these provisions, without doing away with discrimination against people who are sick, none of that would be possible. The Affordable Care Act was the barrier-breaker that ends discrimination against sick people. Next will be delivering health care in a more cost-effective and reasonable fashion, without the overhead brought by insurers and bloated pricing.

For this day, it's enough to know they can navigate without having their boat sink. I'm grateful.

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