Each year, more than half a million babies are born prematurely in the United States or roughly one in eight births. The toll prematurity takes on infant health and on families and society is profound. Babies born prematurely may be at risk of severe health problems. Some of the leading causes of infant death include low birth weight and prematurity.
Despite these staggering statistics, the “voice” of premature patients and their families is often underrepresented compared to other chronic illnesses such as diabetes, cancer, etc. In 2009, MedImmune Advocacy and 11 organizations hosted six state Premature Infant Health Summits across the country to highlight the issues facing premature infants and their families. The summits helped invigorate nearly 500 attendees to work together to formulate solutions to the growing needs of this population.
Since 2009, many stakeholders have developed programs and initiatives to improve the care of premature infants and the collective advocacy on their behalf. In 2011, MedImmune Advocacy and 23 organizations again hosted Premature Infant Health Summits in eight states. The summits grew and attracted over 450 attendees who reviewed the four cornerstone issues of prematurity – rate of prematurity, clinical/socioeconomic burden of prematurity, late-preterm infants and continuity of care. Attendees also discussed new data on the rates of prematurity, stakeholder engagement, new resources and the current policy landscape’s impact on prematurity.
To date, two national organizations provide national forums for professionals and parents of preemies. The National Premature Infant Health Coalition is a network for those that care for children born too small and too soon and those who support affected families. The Preemie Parent Alliance is a network of parents of premature infants in the United States who lead support organizations for other parents who have had a preemie or medically fragile child. Additionally, there are now 13 state-based premature infant health networks and coalitions, each of which defines its own unique mission.
MedImmune will continue to raise awareness for preemie families through their participation at the 2012 BIO International Convention Stage and Buzz Center, Tuesday, June 19th in Boston, Mass. The Stage will host a panel discussion titled Fragile Beginnings: Biotech Partnering Brings Parents & Providers Together for Preemies, highlighting the Fragile Beginnings Preemie Parent Alliance (FBPPA), a successful New England-based collaboration between MedImmune Advocacy and the prematurity community. The panel, moderated by Bob Coughlin, President and CEO of MassBio, will feature panelists from FBPPA and MedImmune. Immediately following the Stage panel discussion, participants will move to the Buzz Center for further discussion, including parent testimonials.
To learn more about the Stage and Buzz Center schedule as well as the 2012 BIO International Convention, please visit http://www.convention.bio.org/.