I can’t begin to describe my shock and delight when I came down to breakfast yesterday and my husband had the radio tuned to a discussion about the Supreme Court’s ruling on the Affordable Care Act. It was 8 am our time and the ruling had just been revealed.

Yes, we have a child with a rare, autoimmune disease for which there is no cure, Juvenile Myositis (JM). Thankfully, she is in remission after 5 years on medicines for which, another yes, we were covered by my husband’s health insurance. ( Though it has become more expensive and covers less, we are some of the lucky few.)  But that doesn’t mean I rest easy at night. Because there is not a cure for her illness, we live with the fact that it could reoccur at any time. It is a big unknown, a potential time bomb.

As if I needed another reminder of the potential harm of JM, a 10 year old boy lost his battle with it just this week.

A good friend whose daughter shares this disease put it this way, “To me, the health care law means – at least – the POSSIBILITY that throughout her life, her decisions about schooling, employment, and moving between states may be based on her dreams and desires – not on what might allow her to maintain decent health coverage. She deserves these basic freedoms as much as any chronic-illness-free kid.”

While this law will continue to be a hot-button political issue, I think Dr. Atul Gawande has given a thoughful  analysis of the reasons the Affordable Care Act (ACA) is needed, why social policy changes such as this are such contentious issues from a historical perspective, and the moral reasons for it’s necessity.

I know politicians will use this law to try and gain power and drive wedges between us, but as Dr. Gawande points out, what we have in common, “We are all born frail and mortal—and, over the course of our lives, we all need health care”, should unite us.

 

 

 

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