50 Year Celebration of Newborn Screening Affirms Life-Saving Efforts

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To celebrate 50 years of newborn screening, The Association of Public Health Laboratories (APHL) is kicking off a big public awareness campaign. Scott Becker, APHL's Executive Director, shares details about this effort to save lives and recognize the importance newborn screening plays in supporting public health.

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Kevin Alexander:

Hi, I’m Kevin Alexander, PKU correspondent for Patient Power, bringing you important news and information from across the world.  The Association of Public Health Laboratories (APHL) is celebrating 50 years of newborn screening in 2013.  I’m joined today by the executive director of the association, Scott Becker. 

Scott, can you give us some more information about the APHL as a whole and what the organization does and also some more information about this particular campaign for newborn screening. 

Scott Becker:

Sure.  Well, first of all, thanks for this opportunity.  It’s terrific, and it’s good to see you again. 

First about APHL—The Association of Public Health Laboratories is about 60 years old, and we represent governmental laboratories that impact the public’s health.  And one of the primary programs that we sponsor is the newborn screening testing in America, and we also are your bioterrorism laboratory and your emerging infectious diseases laboratory in every state and community in the country, we also cover environmental issues and things like that.  It’s really all the programs that impact the public’s health, those laboratories are members of ours, and it’s a terrific group to work with. 

Kevin Alexander:

This upcoming book project is celebrating 50 years of newborn screening.  Tell me a little bit about that book project but also how the book project relates to the overall campaign next year. 

Scott Becker:

Sure.  Well, 2013 is the 50th anniversary of state-mandated newborn screening in the United States, about a year ago we got together with our friends at CDC, Centers for Disease Control and Prevention, and said, now, what could we do that will bring attention and awareness to the issue of newborn screening, because, as you know, it’s a wonderful program, it’s a lifesaving program, but not many people know about it.  We said let’s use the anniversary as a kickoff. 

And one of the central aspects of this campaign is going to be this book.  And the book really came about because we feel there are so many different stories that could be told about newborn screening.  There’s of course the story of how newborn screening got started in this country.  There’s the very many stories of the families and individuals who have been impacted by newborn screening, and then there’s the story of the science and health. 

We’re shaping the book up to be about a hundred pages, and it’s going to have wonderful stories that are going to be told in a way that I think both the average person could pick up and read it and get something from it, but also scientists that are involved in this and policymakers.  We’re hoping that it becomes a central aspect of this important campaign that we’re running. 

Kevin Alexander:

Our viewers who, in one form or another are affected by PKU, maybe as an adult patient living with it, maybe it’s a teenager living with PKU, maybe it’s a parent with children with PKU, everybody who’s touched by PKU in some way has been impacted by newborn screening even if they never really considered it.   I guess, how would you describe the urgency behind this topic?  I mean, with so many other health topics to talk about these days and so many other issues that even your organization deals with, why focus on newborn screening and why focus on the celebration? 

Scott Becker:

Well, a couple of reasons.  One, we do think it’s important to celebrate.  There’s too many times in public health and the kinds of things that we do that we just go from one issue to the next, and we don’t really stop and say, hey, how did we get here and what do we need to do next?  That’s one aspect of this. 

But I also think that newborn screening is at a very critical time in our country, and I’ll tell you why.  The Newborn Screening Saves Lives Act, which had passed a number of years ago, is about to sunset, and that needs reauthorization.  My call to action really throughout this campaign is going to be to talk to your congressional delegation, we’re going to get some sponsors, we need this important piece of legislation reauthorized. 

And that’s because it does exactly what the legislation says:  Newborn screening saves lives and that’s the important message here.  Yes, it’s going to be a bit of a celebration.  There’s going to be a policy focus.  We’re going to tell stories about newborn screening in the US, and frankly we’re going to kick this off in a pretty big way, I’m really excited about it. 

Starting in November, next month, we’re going to have a public service announcement that’s going to appear on the CBS Jumbotron in Times Square, and that’s going to run from November through early January.  And it’s going to have important messages.  It’s going to have great visual impact, and there’s going to be lots of eyeballs coming through Times Square, and we hope that they stop and take a look at the information we have and that they actually go to our website or to our Facebook page and learn more. 

Kevin Alexander:

A couple of weeks ago you guys invited me up to Washington, D.C. to participate in a roundtable discussion about this book project, and I have to confess, I think when you communicated that information about the Jumbotron and Times Square, I guess the light bulb went off in my mind of how large the scope of this project really is. 

With the project that’s going to be of this magnitude, with this potential to raise awareness, what do you think the potential is for next year for more people to learn about newborn screening and for people who have been affected by it to share their stories? 

Scott Becker:

Well, I think it’s actually going to be pretty high.  I think that some of the visual impact kinds of things that we’re going to do by sharing information on social media and really working hard to get the message out that in fact really, truly, all Americans have been impacted by newborn screening.  Many do not know it.  Those who have been impacted because they’ve been found to have an inherited metabolic disorder or are in treatment certainly know about it. 

I do hope that this campaign will encourage people to tell their story, even if their story is ‘I’m fine’, or even if their story is ‘we need to do more’, or if their story is ‘I have some more information to share’.  We think there’s important information that can get out there, but we also want parents and expectant parents and then of course when once the baby is born we want them to ask for their newborn screening results.  We think that’s important.  It is truly one of the baby’s first tests, and we think it’s important for parents to know about the results. 

And then there’s another aspect of this campaign which is to educate healthcare professionals, because you have obstetricians and gynecologists, you have pediatricians all around that birthing process and we need them to have the most up-to-date information.  Many, many physicians think of newborn screening as the PKU test, and as you know, there are many disorders that are screened for using new technologies, etc., and it’s really important that healthcare providers know what the latest information is about that. 

Kevin Alexander:

What are some of the topics that are going to be discussed in this book? 

Scott Becker:

Well, we are going to talk about the origins of newborn screening.  We’re also going to talk about the health side of it, from detection to the follow-up system, how newborn screening is truly a system, and where there are some great heroes also in newborn screening.  Those are not just scientists and clinicians, but there are family advocates, there are patients advocates, there are individuals who have done so much and have devoted their lives to this.  We’re going to tell that story. 

We are going to tell the story of science and how science has changed the way newborn screening is done.  Also looking at the patient and how the role of patient and parent advocates has truly, and I do mean this, has just made a world of difference for newborn screening.  And one of the messages is that we hope people will continue to learn, tell their stories, and share their information with policymakers and with others. 

And then we’re going to take a look at what’s on the horizon.  That’s a tough one because there’s so much happening in the world of genetics and genomics that can help us, that we really want to be sure that we capture some of that.  We’re going to go to some of the leading experts in this country to prognosticate on what’s going to happen.  We’ll see where they take us.  It’s really exciting. 

Kevin Alexander:

What is your hope for, let’s say, for somebody who is watching this video who might be affected by PKU?  What is your hope for them, as far as a call to action, what do you want them to think or feel after reading this book? 

Scott Becker:

Well, I do want them to think about newborn screening as a system and think about how they can take action.  If they’re a healthcare provider they can inform their patients.  If they’re an expectant parent they can ask their healthcare provider or they can go to some resources that are available on the web so they can learn about this. 

If they are a family member of someone impacted, they can make that next bold step and contact members of Congress to say we need to continue to support the Newborn Screening Saves Lives Act.  There’s a whole bunch of things that people can do, but it really does resolve around the individual deciding where they fit in this and then making that next step. 

Kevin Alexander:

How can some of our viewers, if they want to connect with you and keep track of what’s going on with this campaign, how can they get in touch with you? 

Scott Becker:

Well, first, we hope that they go to our Facebook page, which is facebook.com/publichealthlabs, that’s all one.  Or follow us on Twitter at APHL news.  Very soon there will be a website off of our main site, APHL.org, for this campaign.  We’re getting that stood up by November, by the time the Jumbotron PSA comes up.  A lot of action is happening now.  And they can certainly just search APHL and newborn screening and we’ll pop up. 

Kevin Alexander:

Thank you so much for joining us today. 

Scott Becker:

Thanks to you.  Take care. 

Kevin Alexander:

Scott, thanks so much for joining us today to tell us more information about the APHL, what you do, and also about this upcoming newborn screening campaign. 

And thank you everyone for joining us today on Patient Power’s PKU Health Center.  I’m Kevin Alexander, and remember, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.


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