Legislative Wins for Newborns including North Carolina, Colorado

In 2018, Baebies supported advocacy efforts for expanded newborn screening, especially efforts that sought to make the process of adding conditions to states’ menus more efficient. We have also been closely tracking legislative activity across the United States, including 55 bills introduced this year that impacted newborn screening in some way.

North Carolina Adds 3 Tests

Baebies especially appreciated the win for newborns in our own home state of North Carolina where a new approach to keeping at parity with the Recommended Uniform Screening Panel (RUSP) was passed. The provisions in the bill were novel, granting the state’s Health Commission the authority to add conditions and raise the screening fee. By doing this, the state can now cover the costs of the screening they are already doing, and the budget can stay balanced as new conditions are added. There was specific attention paid to swiftly adding Pompe, MPS I and X-ALD to significantly move toward achieving parity with the current RUSP. After an initial jump in the state’s screening fee from $44 to $128, there are measures put in place to ensure that the screening fee can only be raised in certain circumstances and can even be lowered if the actual costs come in under budget. Some believed the increase in the screening fee was a lot, but when measured against the value of saving lives, and when compared to other states’ fees, the legislature and the Department of Health were able to reach an agreement that will benefit newborns in North Carolina now, and into the future as new conditions are added. This great work only happened as a result of great coordination and passion with the support of so many wonderful advocates and families. We’re especially thankful to the North Carolina State Legislature and the Department of Health for seeing the value of this legislation and making it happen!

Family Advocates Help Colorado Pass Bill

Baebies answered a call to raise support for passage of a bill in Colorado that would also enable the state to stay at parity with the RUSP. The Colorado Children’s Hospital, March of Dimes and several other organizations introduced the bill. Towards the end of session things began to look bleak. But we helped to mobilize several additional supporters, including families with children who have rare diseases, and the bill successfully passed.

More Bills = More Healthy Starts

Many states added conditions this year:

  • Virginia passed legislation to add Pompe and MPS I to their state test menus as a result of a legislator feeling compelled when a family who lived in his district had a child with MPS I. The disorder was only caught because the baby was born in a hospital just over the border in Tennessee that screened for MPS I.
  • SMA was added in Illinois and Indiana, putting them ahead of the curve since SMA was recently added to the RUSP.
  • Several states including California, Idaho, Pennsylvania and New York began to focus on CMV by passing awareness resolutions and beginning to educate the population about the condition.
  • Aidan’s Law was introduced in the US Congress, the first attempt to pass a national mandate to add a condition, in this case X-ALD. The bill is still in committee in the House and there’s some speculation that it’s unlikely to pass, but the fact that it was even introduced is great progress!

Still Work To Do

There were some losses suffered this year too, unfortunately. Georgia and Washington both decided to delay funding to add Pompe and MPS I until next year. Iowa and Connecticut both made an attempt to enable RUSP parity, but neither state crossed the finish line. The Florida Advisory Committee hasn’t yet reached a vote to add Pompe and MPS I, but it’s likely to happen in August. These would be the first conditions added to Florida’s test menu since they passed a “RUSP parity” bill in 2017.

As we look to 2019, we are hopeful that many states will consider the addition of conditions, and seek more efficient ways of adding conditions. We know and appreciate the many who work hard every day to make sure newborns in our country have every chance to be all they can be. We’ve been humbled by the level of engagement, true passionate concern, and desire for knowledge that so many of you have expressed over this past year and we look forward to doing some more good work next year.

Baebies believes that everyone deserves a healthy start!

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