A Memoir of a Mother’s Determination and Her Micro Preemie’s Struggle to Beat the Odds
On Monday February 22, 2016 I had the honor of speaking at a Congressional Briefing on Capitol Hill in Washington D.C. in support of the “Promoting Life-Saving New Therapies for Neonates Act”.
It was such an amazing experience. I spoke for ten minutes about my daughter and her time in the NICU and what her life is like now and then I ended by asking our nation’s lawmakers to support Senate Bill S.2041.
Annually, approximately 200,000 newborns in the United States require admission to a neonatal intensive care unit for treatment of prematurity.
Prematurity is the leading cause of newborn mortality and the second leading cause of infant mortality.
Among those preemies who survive, one in five face health problems that persist for life- some of which include- cerebral palsy, intellectual disabilities, chronic lung disease (which will effect Joy for the rest of her life!), digestive/feeding issues, blindness and deafness.
But unfortunately, current incentives have not been sufficient to stimulate novel therapies for the neonatal population due to numerous challenges.
Fortunately, legislation has been recently introduced to stimulate drug development for the neonatal population. It’s called Senate Bill S.2041 or “Promoting Life-Saving New Therapies for Neonates Act”.
S.2041 was sponsored by Senator Robert Casey from Pennsylvania and cosponsored by Senator Bill Cassidy from Louisiana and Senator Robert Menendez from New Jersey.
The goal of this legislation is:
During the first four months of her life, my daughter was given more medications than I care to recall, but some of them include:
You can imagine my surprise when I learned that there has not been a new drug approved for use in neonates in close to 20 years!
This means that my daughter’s life relied on drugs developed two decades ago.
As a secondary science teacher, I teach about science and technology innovation all the time.
How is it that Apple can develop and release a new iPhone every fall- yet the medications used to help my premature baby survive were developed when I was graduating high school?
This is unacceptable and is why I’m supporting Senate Bill S.2041 and you should too!
While it’s wonderful that pharmaceutical companies are developing new cancer drugs, and new drugs to help treat heart disease and other very serious illnesses, our smallest and most vulnerable populations of patients are being ignored and I want to change that.
A few other people were part of the “expert preemie panel” and also shared personal stories while asking for Senate support of S.2041. They included Dr. Jonathan Davis of Boston, Dr. Christina Bucci-Rechtweg of New Jersey, and Allyson Kayton (NNP from NANN) from Florida.
Since the Congressional Briefing, two more Senators have decided to cosponsor the bill! They are Senator Shelly Moore from West Virginia and Senator Joe Donnelly of Indiana.
A website has been set up so that the public can read about the bill.
Click HERE to visit the website. You can also send a letter to a your State Senator from the website by clicking on the link on their website.
Overall, it was a great experience and I got to do a few hours if sightseeing in DC before I got back on the plane to come home.
She is the reason I am advocating for the “Promoting Life-Saving New Therapies for Neonates Act”.
You should too!
Click HERE to view their website.