Effective Newborn Screening advocacy doesn’t require extensive training or expertise – the most important part is telling your personal story about how Newborn Screening could have saved your child’s life and the different story you’d be living now. It is your story that will help make this issue more relatable to decision-makers, and that’s why our job as parent advocates is incredibly important. If we can’t convince them that this matters, who will?
Here are three things you should know before getting started:
Decision-makers are (usually) not your enemy, even if it feels that way.
When I first began advocating for the addition of Krabbe disease to Pennsylvania’s Newborn Screening panel, I quickly became aware that certain members of the NBS Advisory Board were not in favor of adding it. Looking back, my grief and trauma, coupled with my lack of understanding about Newborn Screening as a complex system, allowed me to be angry instead of empathetic. It was difficult for me to see their perspective at first; however, once I began to truly listen, we became a team and the impact was greater than I originally thought possible.
The temptation to force states to do what we want (add our condition) through law (which is called legislative mandate) can be strong, and it may look easiest, but I believe there’s a better way, one that requires listening, learning, and communicating from all involved parties, including us.
The system is complex, but you don’t need to be an expert to advocate.
It took me years to fully understand why states wouldn’t just add Krabbe disease to their panel. It was only after years of researching, listening, and asking questions that I was able to develop the spreadsheet of data for LDNBS that is freely available to advocates.
Thankfully, you don’t need to know every detail of that spreadsheet! All you need to do is know your disease, know your state, and know your story. This is what we call The LDNBS Three Pillars of Newborn Screening Advocacy.
- Knowing your disease means understanding why Newborn Screening matters for your disease and the impact it would make. It also means knowing whether or not there is a treatment.
- Knowing your state means understanding on a basic level how conditions are added in your state so you know who to speak with first.
- And knowing your story means developing a “pitch” or a shorter version of your personal life experience with the condition and how it has impacted your family.
Your story matters, but so does data.
Those making the decisions in Newborn Screening are looking at this from a public health perspective as well as a scientific one. While your story serves an important purpose – alerting them to the seriousness of the condition and the need for early identification and treatment – without data to back you up, your story may not have the impact you desire. LDNBS can provide you with that data as well as medical experts to speak alongside you!
When we started the Leukodystrophy Newborn Screening Action Network (LDNBS) in 2020, our primary goal was (and is) to help make this journey easier for you. We have created resources like fact sheets to help you tell your story, we’ve created educational presentations to help you learn more about the Newborn Screening system and your role within it, and we’ve developed strategic plans to help map out the path to success in each state.
We all have a role to play in this system, and we’d love to help you along the way!