After the briefing was over, we each had appointments with some members of Congress from our home states so that we could discuss the bill in a more personal fashion.
So, what’s the problem that H.R. 5182 is trying to address?
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 who survive, one in five faces health problems that persist for life such as Cerebral Palsy, intellectual disabilities, Chronic Lung Disease, Short Bowel Syndrome, blindness and deafness. But unfortunately, current incentives have not been sufficient to stimulate novel therapies for the neonatal population, due to numerous challenges.
Few drug-labeling changes have included neonates (premature and full term infants up to 28 days of age); and the last new drug for neonates was approved in 1999.
Many of those who follow my story are already familiar with my personal journey with prematurity.
My daughter was born at 23 weeks gestation in 2012 and weighed just 1 pound and 4 ounces at birth. She was only 11 ¾ inches long.
Although she is doing amazingly well at 4 years old, she has Bronchial Pulmonary Dysplasia (BPD) or what is commonly called Chronic Lung Disease. Her lungs are primarily scar tissue because that is how they formed due to the several months of a breathing tube and ventilator forcing her tiny lungs to open and shut, because she could not breath on her own.
This scar tissue and Chronic Lung Disease are what causes her to get frequent pneumonia after having a common cold.
She has had pneumonia 8 times throughout her short 4 years of life and she will likely continue to get it when exposed to foreign respiratory viruses or the runny noses of other children.
Wouldn’t it be wonderful if a new drug was developed that could somehow coat the lungs of premature babies so that they do not develop scar tissue and the future premature babies of the world would not have to suffer with Chronic Lung Disease for the rest of their lives, as my daughter does?
Wouldn’t it be wonderful if a new drug could be developed to prevent the immature intestines of premature babies from getting infected, causing a deadly disease called Necrotizing Enterocolitis (NEC), and the future premature babies of the world would not have to suffer major surgeries and loose their lives due to NEC?
I think so, and I hope you do too.
Many people don’t understand that a premature baby is not just smaller than a full-term baby. Premature babies have immature body systems with a totally different body chemistry than full-term babies. What this means is that because they were not meant to operate in the outside world for a while, they work differently and medications used to treat pediatric and full-term babies do not metabolize the same way in a premature baby. Many drugs don’t work as well or they have different negative side effects in premature babies, because of the immature body systems and different body chemistry of babies born far too early.
Also, the most debilitating conditions and diseases that afflict premature babies do not have an adult counterpart to study, because they are unique to neonatal patients. Therefore, the common practice of “dosing down” a medicine to a smaller weight, which is used to treat a “similar” pediatric or adult disease, does not work well because the diseases of neonatal patients are not the same.
Today, I am calling on you to write to your local member of Congress to encourage them to support the bill. Please click HERE to do it.
It’s so important. The need is there and the population of babies surviving extremely premature births, like my daughter did, is only increasing.
We need new drugs to help prevent these tiny babies from living with debilitating conditions and diseases for the rest of their lives.
They deserve that.
So, please write to your local member of Congress today by clicking HERE.
As always, thank you for your support!