Life with MS & EDS

March 22, 2010

Health Care Reform Bill Passes

While I don’t think the health care reform bill goes quite far enough or accomplishes as much as it should, I am very thankful for its passage.  As a parent of a child with a diagnosed life-long disease, I no longer have to worry that she won’t get medical coverage or that we made any wrong decisions while trying to figure out what was wrong with her.

We first knew something was wrong with Little Sister when she was 9 months old.  She wasn’t rolling, wouldn’t lay on her stomach, and couldn’t sit up, among other things.  We started with physical and occupational therapy and began down the path to determine what was causing her delay.  We went to a pediatric neurologist.  We ruled out Cerebral Palsy and Spina Bifida with an MRI when she was one year old, but ruling things out didn’t bring us closer to knowing what was wrong.

We moved around the time she was two.  The old neuro told us to ask the new doctor for genetic testing.  Great, sounds simple enough, right?  Take some blood and know if one of hundreds of things were wrong.  It’s not so great actually.  As parents we wanted to know what was wrong with her, but knew that the answer could prevent her from ever getting health care coverage or life insurance in the future.  Thankfully, as a government employee, I knew we would not get dropped immediately, but what if I ever lost my job and needed to qualify for other health insurance?  It was a difficult decision.

We decided that knowing what was wrong outweighed the potential risk, so we went forward with the karyotype.  It turns out that the test didn’t show anything wrong.  We were offered the opportunity to do more extensive genetics testing, but decided against it.  Part of me didn’t want to know if she was susceptible to specific diseases or illnesses, but a bigger fear came down to future medical and life insurance considerations.  Not only did I not want to know if she had a gene that could lead to something down the line that we hadn’t even considered, I didn’t want anyone else to ever use that information against her.

One of the last conversations I had with our friend before she died from breast cancer was about genetic testing.  She was dying from a rare and aggressive form of genetic breast cancer.  She had two little girls.  She talked about not wanting them to have the test to determine if they had that potentially deadly gene.  We talked about fear of our girls not having health care coverage when they needed it most.  Trust me, it’s a really hard decision to make.  Knowing that you have something that could potentially be treated before it can do damage meant that insurance companies would also know and decide you were too much of a risk to take on.

With this health care reform legislation, I no longer have to worry about Little Sister obtaining medical insurance.  It’s okay that her medical records indicate she has Ehlers-Danlos Syndrome.  EDS is a very treatable disease and generally not life-threatening, but it’s still a pre-existing condition.  We need to monitor her heart, getting electrocardiograms every 3 years and yearly during puberty.  We have expenses for DAFOs (ankle-foot orthotics.)  We had expenses for therapy, but now the school system provides it (this could change.)  In general, it’s not an expensive disease.  I cannot imagine what parents of kids with costly and life-threatening diseases go through.

Compared with EDS, my MS is a very expensive disease.  Between brain and spine MRIs every 6 months (these will eventually be further apart), disease modifying drugs, and three neurology visits a year (sometimes more), I cost insurance companies quite a bit of money.  I hope that our Senators, Congressmen, and President continue to press of even more improvements to health care.  No adult should be penalized for pre-existing conditions and risk losing their insurance when they need it most.  Everyone deserves access to high-quality medical care, without it bankrupting them.



  1. NYT has some information on the impact to people with or without insurance.

    It does say something about insurance companies being allowed to drop adults with pre-existing conditions until 2014. But there is no mention of what happens after 2014.

    Comment by Nothing Knew — March 22, 2010 @ 10:35 am

  2. I agree with your sentiment 100%….everyone needs affordable health care, and reform is long overdue. It is appalling to me that so many people have no access to health care in the richest nation on earth, while we send billions overseas every year to dictators of third world countries to curry favor.

    Comment by paul wooten — April 3, 2010 @ 1:08 pm

RSS feed for comments on this post. TrackBack URI

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Blog at

%d bloggers like this: