The deficit in treatment options hits particularly close to home for those who have first-hand experience with preemies. Panelist Jennifer Degl spoke eloquently about her daughter Joy, who was born 17-weeks early and developed a rare lung condition known as bronchopulmonary dysplasia. Ms. Degl, whose book From Hope to Joy tells the story of her daughter’s remarkable journey, provided an emotional account of her experience in a neonatal intensive care unit (NICU). She recalled the breathing tubes, the incubator, even her daughters translucent skin and fused eyelids, as she explained how she couldn’t even touch her baby for the first month of her life.
As Sen. Cassidy explained at the briefing, his legislation would take a series of steps to identify priority conditions for researchers to target, while providing a unique incentive to allow drug developers to achieve profitability if they manage to bring a new product to market. Among the legislation’s provisions, Sen. Cassidy noted that the bill would:
- Close the treatment gap by stimulating the development of safe and effective drugs for a challenging and neglected pediatric population.
- Ensure that new neonatal drugs address the most critical needs in the neonatal population by collaborating with multiple stakeholders, such as the NIH, the Critical Path Institute, and patient advocacy groups, to identify priority conditions.
- Create a new incentive model by providing a transferrable “exclusivity voucher” to drug sponsors who successfully develop products for neonates. This voucher would enable the product sponsor to extend the exclusivity period on another drug by one year.
Here’s how you can help promote new cures for our newborns. To sign a letter to your senators on cosponsoring the vital legislation, S.2041 – The Promoting Life Saving New Therapies for Neonates Act, click here. For more information on the gap in innovation for neonates and the Newborn Health Initiative, please visit www.newbornhealth.org.