September is Newborn Screening Awareness Month, a special time for the rare disease community. It’s an opportunity to attract media attention, spark conversations with decision-makers, and help our friends and family stay engaged as we talk about what it is and why it matters.
The Issue with Awareness Alone
As advocates, we work to raise awareness among two main groups:
Expecting Parents
Prenatal education rarely covers Newborn Screening, and it is often introduced during a stressful time for parents (immediately after birth), which can cause confusion and mistrust. If parents are not fully informed about what Newborn Screening is or why it is important, a positive test result might leave them unprepared for the outcome or lead them to disbelieve the result. That’s why the work of groups like Expecting Health is increasingly relevant.
Decision Makers and Stakeholders
We want decision makers and stakeholders to be aware, listen to us, and recognize the importance of Newborn Screening so that progress can be achieved. However, Newborn Screening is not the only issue on their agenda, so our best efforts may still fall short, regardless of how compelling our stories are. They might be aware, but they might not take any action.
Awareness is a good starting point,
but it’s not always enough to create
meaningful, systemic change.
Empowering State Newborn Screening Programs
My work at the state level has taught me that state Newborn Screening personnel and advisory board members are well aware of what Newborn Screening entails, why it matters, and how their state program operates. They are even more aware than we are of the barriers preventing them from expanding their panels. They choose to be in this work because of their passion, and their dedication is admirable.
As advocates, we ask them to listen to our stories and share our passion, but the reality is that they cannot always take action to make improvements. Bureaucratic constraints often prevent those who care the most from being able to effect change, even when the stakes are as high as they are with Newborn Screening and access to treatment.
We insist they listen to us, but do we truly listen to them?
As advocates, it’s time for us to listen to them and become aware of the challenges they face so that we can walk alongside them and have an impact.
For the past ten years, I’ve worked with state NBS programs, advisory boards, and other decision-makers, striving to become an expert in state-level Newborn Screening policy and advocacy. I’ve seen firsthand how bureaucracy and a lack of motivation in state government can slow down the expansion of newborn screening.
That’s why I spent five years in Pennsylvania working to remove those barriers. But I could not have achieved this without listening to those who understood the obstacles. By using the insights I gathered, I helped address these issues. The result is a stronger NBS program and system that can add new conditions without involving the legislature and putting Newborn Screening in the hands of partisanship.
A Call for Collaboration
If we want to see real change at the system level, we need to start those conversations and let our state programs know we are here to listen, learn, and collaborate to make Newborn Screening more effective and impactful.
In this period of chaos and uncertainty at the federal level, I firmly believe that now is the time for industry and advocacy to collaborate and work together to empower state NBS programs, giving them the autonomy they need to carry out the important task of improving access to treatment for babies born with rare, treatable conditions.
And Patient Advocacy Strategies is here to ensure that the collaboration is impactful.
Patient Advocacy Strategies Can Help with Newborn Screening
If you are an advocate or an industry partner developing a treatment for a condition that requires newborn screening to ensure access to treatment, let’s connect. I would love to learn more about the challenges you’re facing and share my decade of state-level policy and advocacy expertise to help you find a solution.
As we in the rare disease community spend time developing messaging this month, let’s also have a conversation with those in our state programs who need what we can provide: advocacy.
Advocacy is only effective if we are willing to learn, listen to understand, and collaborate. This is the perfect opportunity for those conversations.
Let’s do everything we can to collaborate and make this awareness month meaningful in unique ways.
