Monday, February 10, 2014

CBS: Washington Children Lose Access to Seattle Children's

Having two children with Shwachman-Diamond Syndrome and knowing that Seattle Children's is one of two places in the United States with expertise in doing bone marrow transplants in SDS kids, this hits close to home. Our insurance recently dropped Cincinnati Children's Hospital pharmacy and we wonder if their bone marrow failure clinic will be next. In 9 years with this insurance, a hospital pharmacy has never been dropped before....... and even scarier?  Cincy Children's is the other hospital that does SDS bone marrow transplants. Why is this important? Because 50% of SDS kids who go to transplant die unless they go to one of these special centers.

 If we are dumped onto the exchanges next year, the plans won't let us leave our state to go to either center...With two chronically ill kids, we are very concerned because it looks like our employer will be dumping us because of Obamacare... their costs are estimated to increase 7.4 million this year... they can't keep that up. Even liberals have to understand why I fight with so much passion against this unAffordable Care Act. It's tyranny and it is UNaffordable.  It hurts children, it hurts the elderly and it is a tax on the sick. 

A friend asked me if I was moving out to clear up any confusion others might have, too, I will share my answer: No, not moving out west. But if my kids need a BMT, we will go to Cincy Children's or Seattle Children's if our insurance doesn't change. If they have a BMT at places other than these two, their chance of survival is 50%. At these two places, it is greater than 80-90%. 

With those stats, where do you think my kids should have a BMT if they need one? Both came close to BMT in 2000 and then J again in 2006. J has no match in the bone marrow donor registry, making transplant even riskier. Definitely want him seen by experts. 

1 comment:

Anonymous said...

I just want you to know, that life is always more important that rationed health care. I have dealt with children with CP,MR, Autism, ADHD, MS, and other diseases. I also know what it is like to be very ill, I put 14 months most in ICU in a research hospital trying to seal me up. I'm a little person I can't do much but you need to lawyer-up and challenge the "abuse of discretion' for the original underwritten insurance police to the amended modifications, and regardless of the risk pool, they need to cover your medically necessary pharmacy and surgeries. find that plan administrator, get a speedy trial, and kick a++.

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