A Social Justice Issue

OK, I’m just going to be real with you. I’ve tried to sit down and write this particular entry numerous times… But every time instead of clicking “Publish” when I’m finished I clicked “Delete” instead. It just wouldn’t come out right.

Here’s my dilemma. A few weeks ago I did something that was not very wise… I had an argument with someone on Facebook. Now, I’m a pretty easy-going guy. I try to be as patient as possible. But if I can just be real with you for a second… I lost my temper. Why? Because the argument was about newborn screening.

The reason I believe in newborn screening is simple: Because I exist.

I’ve spent so much time these last few months telling people about Phenylketonuria (PKU), about the challenges we face getting insurance coverage or access to formula. And if the conversations take a political turn they can get quite controversial. I get that. But I didn’t think that one day I would have to defend newborn screening itself.

That’s the argument I got myself in to. Well, I guess I stumbled in to it. This wasn’t even a person I know… A friend of a friend on Facebook. And the conversation was about something entirely different. But when I brought up the subject of newborn screening to make my point, I was quite surprised at the reaction.

“That’s not the government’s job.”

Now, I’m not going to get into a political discussion here. At least, not a partisan debate. But the truth is whenever you start talking about PKU, newborn screening, insurance coverage, or access to formula the discussion IS about politics. And frankly, I consider it to be a social justice issue.

But I’ve been hearing that person’s response in my head for the last few weeks. I just can’t shake it. How do I respond to someone who does not see the value of newborn screening?

I’m typically a “just-the-facts” kind of guy. At least, that’s what I’ve learned to be over the last few years. Opinions are cheap. Anyone can have them. Facts are costly, discovered by those who take time to seek them out. And facts, not mere opinions, have the power to persuade… As long as you have an open, inquiring mind.

I believe that. I really do. But here’s my question… Should I really need to provide facts to defend my existence? I don’t believe that’s an over-reaction. I’ve said it many times, and I’ll continue saying it: Newborn screening saved my life. Sure, I could tell someone that 40 million babies were screened in 2011. That of those 40 million, 20 thousand were given a chance at life. I could tell them that one rough estimate indicates there might be as many as 25 MILLION mentally handicapped people in India because of undiagnosed PKU, and that newborn screening could help guide their future.

I could do some more research and provide more facts. But do I need to? Is it really necessary for me to go to all of those lengths to prove my point?

I’m trying a different tactic. It’s not quite as informative, not nearly as objective, and definitely more experiential.

The reason I believe in newborn screening is simple: Because I exist.

Without newborn screening, well, we all know what kind of life I and everyone else with this disease would have. The greatest evidence we all have that shows the power of newborn screening… is us. The fact that we are alive, and not doomed to a preventable existence.

So, as I wrapped up my argument on Facebook I realized I needed to take this approach. No amount of facts or statistics I quoted made a difference. This person simply didn’t see the need for government mandated newborn screening. So I ended with this:

“People, your tax dollars have saved my life. That’s no hyperbole. I have a Bachelor’s Degree in Mass Communication, I have a Master of Arts in Theological Studies, and I have 12 years experience in video production. I am not a taker or parasite of society. I have recognized the life that tax payers have provided to me and done everything I can do to give back. If that’s not worthy of your consideration I don’t know what is.”

Newborn screening saves lives. It saved the estimated 50,000 of us worldwide who were diagnosed with PKU. It saved the lives of countless others, including the 20,000 babies last year who were diagnosed with a rare disease. And it will save countless lives in the future.

Governments all across the world face incredible challenges everyday. Sometimes, I think as citizens in modern democracies we forget the unbelievable decisions our leaders are confronted with every day. And I realize that every decision they encounter is incredibly important.

But surely saving babies has to be considered one of the most important and beneficial steps a government can take to both protect human life and ensure a prosperous future.

Kevin Alexander, M.A., PKU Survivor, is a Guest Blogger for Global Genes.  More information about Kevin and the Metabolic Foundation can be found HERE.

As with all guest blog submissions, the views and opinions expressed on this guest blog are purely the bloggers own and do not necessarily reflect the thoughts or opinions of The Global Genes Team/R.A.R.E. Project.  Any product claim, statistic, quote or other representation about a product or service should be verified with the provider or party in question.

7 thoughts on “In Defense of Newborn Screening – Your Tax Dollars Saved My Life!”

  1. Pat Blake says:

    Hi, Kevin. Thought you may like our newborn screening videos: one for families https://ow.ly/cjchS and another for nurses https://ow.ly/cjclG

    Best,

    Pat

  2. Stuart says:

    A very interesting piece and perhaps it – in reference to the argument put forward – is indicative of the way that genetics has become viewed as individualistic; a “choice” issue. Certainly, the need for informed decision-making and genetic counseling stem largely from such an individual focus derived from decisions about genetic testing. There is now a need for a greater attention on public health genetics (and genomics) and newborn screening is a paradigm example.

    I think there is also the need for more “joined up thinking” around genetic tests and screening. It is not a one off decision or action that takes place in isolation. As discussed, the availability and access to the necessary medication or formula indicate this need, so decisions about expansion of screening panels need to not only focus on the immediate test or screen but also the implications of this. There is little point in having a test that can identify people who can be helped if the help is not accessible. Consequently we need to think of healthcare as a continuum, not just a series of isolated events.

  3. Thanks! I checked them out, and they look great!

  4. Adrienne Campbell says:

    Hey Kevin,

    Just wanted to tell you how much your blog post inspired me. I shared it on my Facebook page. I hope you don’t mind but I think the timing is crucial with the Presidential Election right around the corner.
    Congratulations on all your accomplishments! You have more than paid back the cost of your screening!!

  5. Kevin Alexander says:

    Adrienne,

    Thanks so much! Glad to know the blog inspired you! And thanks so much for sharing it on Facebook!

    Kevin

  6. Andrea says:

    Well said! I have a niece and nephew with pku both are brilliant and had they not been given the newborn testing they would both be severely mentally retarted. They are thriving because they were tested. I will happily pay more taxes if it will provide such testing for kids . God bless you for taking a stand !

Comments are closed.

X