Recently Sue and I were invited to listen in on a webinar sponsored by Graham's Foundation, The Preemie Parent Alliance, and The National Association of Neonatal Nurses about Senate bill S2041 sponsored by Senator Robert Casey of PA.   The webinar is available to watch here:

It is truly sad that so few advances have been made in the last 25 years in the development of neonatal drugs. A combination of factors such as federal laws, liability concerns, and parental consent for testing make research very difficult.

The typical parental consent form is about 20 pages, full of scary disclosures. Most parents in the NICU are understandably unable to concentrate on all the legalese in a consent form because all their focus is on their child. The typical drug study on preemies consists of only about 12 to 15 patients. With this sample size it is very difficult for doctors and drug companies to accurately assess treatment and dosage effectiveness.

This Senate bill provides financial incentives to drug companies to develop new treatments. The last preemie drug patent was given in 1991. Currently, many preemie babies are given untested dosages of drugs intended for children and adults for a variety of conditions that can be fatal.

From watching commercials on TV, we are all aware of the many unintended side effects of drugs on adults. Yet doctors are left with no choice but to prescribe a variety of drugs to preemies with little knowledge on potential detrimental side effects on their developing organs.

Please watch the video and contact your elected officials to encourage their support.