Lab Matters - Winter 2013

Fifty years ago, in 1963, Massachusetts became the first state to screen newborns for PKU, an inability to process phenylalanine. Since this amino acid is delivered in both traditional formula and breast milk, children will suffer irreversible brain damage quickly if left undiagnosed.

Brokopp: There is a wide range of campaign activities, spaced throughout the year, designed with different groups in mind. There are several brochures, one produced for policymakers, “Four Facts Policymakers Need to Know,” and another for expectant parents/ medical professionals called “What’s the Best Thing You Can Do to Protect Your Newborn’s Health.” There will also be blog posts on maternity and parenting sites.

Becker: The most unique part of the campaign was the public service announcement in Times Square in November and December. We wanted to take advantage of New York’s busiest months and ran two different spots many times each hour on a jumbo-tron in Times Square, one of the most densely packed places anywhere. I dragged my family out to Times Square in the bitter cold to wait for the ad. It was so exciting that we waited around to see it again an hour later. A group of New Jersey public health laboratorians did the same thing, a few weeks later.

Brokopp: We are also writing a book about the heroes of newborn screening. It shares stories from impacted families and traces the development of the newborn screening system. We hope the book will honor the commitment of our public health community and impacted families. The book will show how the system is essential to the success of newborn screening, that every detail of the process—from taking a good sample to timely laboratory testing to the follow-up with parents—is vital to achieve good results.

Becker: To bring the awareness campaign to the national policy level, we will host a full day of events in Washington, DC, on September 18, 2013. We are bringing parents and affected individuals to the policymakers to discuss their stories. In an event moderated by Richard Besser, MD, ABC News Chief Medical Editor, Congressional members will meet with CDC, HRSA and NIH to discuss the importance of newborn screening to our entire nation, as well as within their agencies. I should also say—prior to this policy event, Dr. Besser, who is a pediatrician, will host a Twitter chat on newborn screening. It will allow the public to interact freely with newborn screening experts. He has more than 25,000 followers, which will make this the biggest public health chat possible.

Brokopp: Throughout the year, newborn screening exhibits will be traveling to states and professional societies. Some labs will offer public tours and other

president and executive director’s column
publicity events, and there will be retrospective
presentations on newborn screening at the NBS and
Genetic Testing Symposium in May. This will be a
joint meeting with the International Society for
Neonatal Screening.

Becker: The 2013 Newborn Screening and Genetics Symposium will have more than 600 participants— our largest gathering yet. It’s May 5-10 in Atlanta and will be a special opportunity to highlight the laboratory component of the newborn screening system. Outside of our formal campaign, we’ve been seeing some exciting uses of social media. Arizona’s State Health Official, Will Humble (MPH), wrote a blog entry in January praising the achievements of the newborn screening program. (See http://directorsblog.health. azdhs.gov/?p=3445.) It came to our attention when the Arizona Department of Health Services tweeted the link!

Brokopp: And in Florida, shortly after the newborn screening laboratory began screening for SCID, the state health officer announced via online video that they had identified their first child with the condition.

Becker: States are beginning to really share their statistics now. We also have parents interacting with the agencies via social media. In fact, APHL has been contacted by the families of children with detected newborn screening conditions in response to our NBS blog posts. It’s exciting to look down the road and imagine what is coming next for newborn screening. Change—such as better system coordination and improved health outcomes—should happen more quickly and effectively with the influence of growing public awareness.

For a list of 50th anniversary of newborn
screening campaign activities, see
www.50yearssavingbabies.org/calendar

Brokopp: Newborn screening will continue to improve. The combined application of new technologies with the expertise, knowledge and leadership of those who have established our newborn screening programs will enhance newborn screening in many ways. The list of conditions detectable through modern genomic technologies has expanded faster than our ability to conduct pilot studies and evaluations of the use of the new technologies for population screening. The gaps in our understanding and acceptance of the societal implications of expanded NBS are being addressed by advisory committees that seek input from public health professional, geneticists, laboratorians, child advocates, parents and others.

Becker: APHL and our many public health partners in newborn screening look forward to exciting advances that will certainly occur over the next few decades.