Wednesday, June 27, 2012

From a Mom, on Health Reform

A mom sent this to me and gave me permission to share it here.

What the Affordable Care Act Means to Me

Too Whom It May Concern,

When I held my infant son in my arms 21 years ago, I thought about all the great things life had in store for him.  I wanted to be the best parent I could be so I could launch him into the world where he could live his life to his greatest potential.  My mentality at the time was similar to most peoples:  work hard, follow the rules and you too can have a slice of the American Dream.

It wasn’t long before I realized how naive I was in my thinking.  Through out my son’s childhood he was diagnosed with not only Crohn’s disease with colitis and gastric paresis, but also with a degenerative disease called Primary Sclerosing Cholangitis.  He can expect to undergo a liver transplant within the span of ten years. 

I cried with such relief when the Affordable Care Act was passed allowing my son to stay on my husbands insurance until he turned 26 years old.  I had absolutely no idea what we were going to do prior to this.  I certainly couldn’t go out and buy a policy for him because of the preexisting clauses insurance companies imposed. 

Prior to the Affordable Care Act, after my son was diagnosed, I was also stunned to find out that most insurance companies have imposed a $250,000 to $350,000 life time cap on organ transplants.  It sounds like a lot of money, but a liver transplant, including the first year follow-up, cost $519,000 according to the United Network for Organ Sharing.  When this cap has been met, insurance companies do no have to pay any additional cost, including the anti-rejection medication required for the rest of the patients’ life.  Anti rejection medication cost $31,000 annually.  Many insurance companies are also smart in that as your liver begins to fail, and you become sicker and sicker, and you are in the hospital for all kinds problems associated with dying, they apply that cost towards your organ transplant cap.  You can reach your monetary limit before you even get a transplant.  I also learned that most insurance companies don’t provide any benefits for treatment relating to a transplant until you have been covered under an insurance plan for 12 consecutive months.  People die waiting to get treatment.  Again, ask my about my tears of relief when I found out that the Affordable Care Act addressed both of these issues.

Because our entire health care system is about making a profit for shareholders, there isn’t much in the way of research for people who have rare diseases like my son.  It’s too bad he doesn’t have something like Diabetes.  There isn’t even a lot of lobbying power because, on a whole, not as many people need organ transplants than.  In short, nobody is in D.C. taking up his cause and research isn’t being done to make his life better.  Ask me about the hope I felt when Affordable Care Act was passed.  Hope for a mother who is powerless on so many levels. 

It is a sad day in America when a mother spends more time worrying about how their son’s liver transplant will be paid for, and its implication for his future, than addressing the insurmountable grief she naturally feels in dealing with his diagnosis. 

So many people got on the band wagon about our government and death panels.  Don’t they see that we already have them?  Wall Street not only dictates to my son his slice of the American pie, but they can also hold the power in deciding if he lives or dies.
All I want is to able to buy a damn insurance policy for my son when he ages out of insurance plan, where life time caps are eliminated, so he can go on to be the best that he can be with what he has. 

And, oh by the way, when you stand out there with your rally signs bellowing out the importance of abolishing Obama Care, think about what that must feel like for mothers like me.  Many of us are distraught and we feel our children are being persecuted.  Life is hard for our kids as it is.  Please, for the love of God, implement some sensitivity.     

Thank you for listening,


  1. Great to see someone else agreeing that we already have death panels for people with rare diseases.

  2. Too bad Obama didn't hire her to represent the administration at the Court. Sums up the moral issue quite well. We'll see.

  3. It is true that there will be shock, depression and potentially anger that comes with any diagnosis of cancer but it is important to remember that certain cancers are not as dire in the grand scheme of things. However, when there is a life altering diagnosis made, it is always best to weigh the options and determine what course of treatment will provide you personally the best quality of life.
    Talk to Doctor