What Healthcare Reform Means to Isaac

Today I got a phone call from the person in charge of media for President Obama’s Virginia campaign headquarters.

I receive a lot of calls about campaigning, as I have always been a supporter of President Obama.

I felt guilty about my inability to campaign (no time really!) so I emailed the story of Isaac and our feelings about Health Care Reform to the campaign, and forgot about it as soon as I sent it…

Apparently somebody read it; that in and of itself was pretty exciting for me. The fact that when the campaign office was contacted looking for a family in Virginia that could speak about healthcare reform and what the upcoming Supreme Court ruling may mean to them my email was remembered is pretty awesome.

They wanted someone to do TV interviews and print interviews; I would only be able to do print from Minneapolis. They are working to see if it will work logistically at this point.

So now the question becomes – what does healthcare reform mean to my family (and THOUSANDS of others like mine?).

It means, in essence, that my son gets the best possible care in the country. It gives us the freedom to choose the best doctors and hospitals for him. We all know Isaac spent 11 out of his first 13 months in the ICU; this comes at quite a cost.

Around his first birthday a representative called to tell us that Isaac was approaching his lifetime maximum for insurance and may be dropped, in her words we should begin looking at “backup plans”. We had just brought him home for the first time at 13 months, we were figuring out nursing schedules and the ongoing confusion of home medical supply companies – we pushed it to the back of our minds.

A month or so later (February of 2010) Isaac’s medical supplies stopped arriving – upon inquiring with the supply company we were told he no longer had insurance.

Our baby had reached his TWO million dollar lifetime maximum in just over one year of life.

Just like that, he was uninsured. This was one month before the act was signed into law. Before the law there were crazy things like lifetime limits (frequently 2 million), pre-existing condition requirements and all sorts of other craziness.

Both lifetime limits and pre-existing condition requirements directly impacted my beautiful, heroic little boy. We were very fortunate, I had just returned to work from a long term leave of absence – which meant I could get insurance and put Isaac on it. I was also lucky to work for a county that did not have lifetime limits or pre-existing condition requirements. Not everyone is this fortunate, and in all reality this meant I could potentially have no choice but to stay in this job for the next 20 years to keep Isaac insured.

Because of the reform act we have a choice. We are not forced to keep one insurance for Isaac because it is our only option. We are not forced to rely on state Medicaid that could make decisions for us about which doctors he sees based on their review of his records, not any face to face interaction.

We are able to take Isaac across the country to the best surgeon for him. We are in a situation that many others face – the surgeons in our area are very good – but they are unable to give Isaac the delicate care he requires. His anatomy no longer resembles that of a normal child – his right rib cage is fused, his esophagus bends and stretches to the right and has scarring and narrowing that is not normal.

The surgeons at home (Virginia) tried very hard to help Isaac, but during the time they were helping him other problems arose (resulting in a tear in his esophagus and paralyzed vocal cords – leading to a tracheotomy). Without medical insurance for him his procedures and surgeries in Minnesota would not be covered, at all.

We would be left with no choice but to try surgeons in our area that we are not comfortable with, and who are really not comfortable with Isaac and his complex needs.

You may be healthy today, your children may be healthy today – and they may never need to know the extent of their healthcare and what it can provide them. This is not guaranteed. To question whether or not every individual should be covered in the case of a catastrophic event is not the question to ask – the question is – what IF this happens to you?

-Kim