Center for Disease Control ACIP meeting

I was asked a few months back to speak on behalf of parents from across the country who have been affected by RSV at the CDC's Advisory Committee for Immunizations Practices meeting. The current guidelines recommended by the AAP (Amer Acad for Pediatrics) for administration of RSV prophylaxis excludes hundreds of thousands of at risk infants from being approved for the shots. Furthermore, these guidelines were not formulated on any evidence-based research...so the CDC is stepping in for the first time to look at the facts, the statistics, the economics, etc. I was very honored to be the voice for parents and I hope I brought some attention to the human aspect of these decisions.

That is one of the things that is so shocking to me. It may be that I am naive, or that I am new to public policy, health care issues and politics, etc. but one thing that struck me over and over was how disconnected many of the researchers seem to be from the people they are discussing. The problem is that they deal in numbers...statistics and dollars. They don't realize that those statistics are not just numbers on a page or a PowerPoint slide...those statistics are PEOPLE!!!!

There were several viruses and vaccines discussed throughout the day, RSV being just one. As I sat and listened to the presenters about H1N1, they would say things about their research that went something like this "when this population was given this vaccine it resulted in only 1.1% of that population being hospitalized or dying which is statistically insignificant". Statistically insignificant is my new "most hated term". I found this highly offensive because that 1.1% they're talking about are people's lives. That 1.1% could be my child or your child...how would you like to hear someone say that your child's life is statistically insignificant? I've been on the "wrong" side of statistics or at least a part of that "statistically insignificant" population and let me tell you...it does matter! It is significant!

There was one particular presenter about RSV who was very focused on the economics, the cost of the prophylaxis. Don't get me wrong, I know that the current medication is very expensive, but how can you measure the value of a child's life in dollars and cents?

So....here is what I said in my three minute time slot at the end of a very, very long day. I hope it was powerful enough to make an impression. We had a PowerPoint presentation with photos and short stories about specific families across the country, but they wouldn't let us show it so we had to print it out as a handout and distribute it to the committee. I referenced it and asked the committee to honor these families by taking just a few moments to read their stories.

My name is Keira Sorrells. I am the president of the Zoe Rose Memorial Foundation which is a nonprofit that offers support to parents of premature infants. I am here today to speak on behalf of parents from across the country who are facing one of the most traumatic life circumstances of having and raising a medically fragile child.

More importantly, I am a mother. A mother of triplets born at just 25 weeks gestation.
I am one of those mothers who has had the challenge of protecting and raising a medically fragile infant. I had three of them.

I am also a mother who has lost one of my precious daughters at only 14 months old because of an infectious disease.

And I am a mother who spent a week in the hospital with my two survivors watching them fight RSV, just six months ago.

Six months later my family is still dealing with financial hardship because of the lost time at work and the medical bills incurred during our week long stay. And we are insured! We're the "lucky" ones!
But what about the other families who aren't so "lucky"? The costs to these families extend well beyond the hospital stay because of medications, treatments, and therapies that may be lifelong as a result of the virus.

As the parent of medically fragile infants I was repeatedly informed by our doctors about what we may be facing with our children. I knew how fragile they were. I took precautions. I heard time and time again "Keep your girls healthy," "Stay out of the hospital," "Don't let them get RSV."
But what about the babies who are born just a few weeks early or even full term? Babies you'll read about in our handout.

These are babies whose parents are told that RSV is just a bad cold, if they're even told about it at all.

These are babies who are automatically excluded from the possibility of prophylaxis treatment.

These are babies who, time and time again, contract the virus that in far too many cases leads to lifelong medical issues or even death.

With a virus as contagious and vicious as RSV, how can we let parents think it is merely a bad cold? How can we exclude these babies from lifesaving prophylaxis treatment?

If you are fortunate enough to have a healthy child, imagine that you are one of these parents, like me, standing helplessly by your sick child's bedside, knowing that prophylaxis exists that could have protected your child from RSV, and you couldn't get it for them.

When you look at the numbers, the statistics, and the economics...realize that each of those numbers has a child behind it.

A living, breathing child with a right to a healthy life.

The value of a child's life should never be measured in dollars and cents. When you talk about statistical significance you are talking about my children. You are talking about your children or your grandchildren.

I hope you will honor the parents of these babies who have been affected by RSV, by reviewing the handouts we have provided.

This is not just a bad cold we're talking about here and losing even one child to RSV should never be acceptable.

You are the experts.

You know what RSV is.

And only you hold the power and influence in your hands to protect OUR CHILDREN.

To read more about the AAP's policy statement regarding prophylaxis for RSV prevention click here .

To read the NPA's (National Perinatal Association) position statement on RSV prevention click here

To learn more about RSV and what you can do to prevent it visit the PreemieCare website.

1 comment:

Naomi Levit said...

i'm so proud of you, keira. you are such an amazing and inspiring woman. you are truly keeping zoe's spirit alive! glad to call you my sis. love you and miss you,
aunt no-no

All time favorite video of Zoe!

Popular Posts

Bible verses that comfort me

"Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord."
~ 2 Corinthians 5:8

"Let the children come to me. Don't stop them! For the Kingdom of God belongs to those who are like these children....Then he took the children in his arms and placed his hands on their heads and blessed them"
~ Mark10:14 & 10:16

"...those who wait for the Lord shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint"~ Isaiah40:31