Perspectives from Advisory Committee Members at the 2017 AMCHP Conference

Cori Floyd,
Program Analyst, Children and Youth with Special Health Care Needs; AMCHP

Nearly all of the 4 million infants born in the U.S. each year are screened by state newborn screening (NBS) programs, with more than 12,000 infants diagnosed with detectable, treatable disorders. Early diagnosis and treatment can help manage or prevent severe (often lifelong) consequences. However, emergencies can severely affect the availability of resources and continuity of operations in screening programs. For example, in 2005, Hurricanes Katrina and Rita destroyed Louisiana’s state public health laboratory, eliminating the state’s ability to perform newborn blood spot screening.

The 2008 Newborn Screening Saving Lives Act charges the Centers for Disease Control and Prevention, in partnership with the Health Resources and Service Administration and state agencies, to develop a national NBS contingency plan (CONPLAN) for a state, region or consortia of states to use in the event of a public health emergency.

The NBS CONPLAN was finalized in 2010, and in 2015, AMCHP partnered with CDC, HRSA, the Association of Public Health Laboratories and an advisory committee of expert stakeholders to update it. The advisory committee’s aims were to:

• Address gaps in laboratory, clinical and long-term follow-up;
• Add language on point-of-care screenings for hearing and critical congenital heart defects; and
• Strengthen emphasis on family engagement.

While the updated CONPLAN is in clearance review by CDC and HRSA, the advisory committee is getting the message out to the maternal and child health audience about the updated plan and how to engage in NBS contingency planning in all states and communities. As part of that effort, during a session at the AMCHP Annual Conference, the CDC, AMCHP and advisory committee members presented on the changes to the document, the revision process, key takeaways and next steps.

Advisory committee members Johnna Watson, program chief of the Newborn Screening and CCHD follow-up program at the Office of Genetics and People with Special Health Care Needs in Maryland, and Mary Castro Summers, patient and family resource specialist at Franciscan Children’s in Massachusetts, represented the Title V and family/consumer voices, respectively. Each provided her account on the importance of NBS contingency planning, as well as her experience with and lessons learned from the revision process.

Title V Perspective

Watson conveyed that while it is important to have a state NBS contingency plan, it’s also important to have smaller contingency plans for everyday matters. “I’m one person out of a two-person team,” she explained, “so if I’m not there and an emergency happens, my colleague will be responsible for ensuring that operations move forward. If that’s the case, how have we prepared her to handle an emergency? Particularly if she is the only one in the office and vice versa?”

Her point was that it is necessary to recognize that when an emergency strikes, not everyone may be present or reachable, so contingency-planning on a small scale, as well as cross-training for different scenarios, are imperative to ensure standard operations are not crippled by an emergency.

The Family Voice

Castro Summers emphasized the importance of intentionally and appropriately incorporating families in contingency planning. She was frank: “I believe this revision process went well but honestly, we can do a lot better and need to get better at incorporating the family perspective. Oftentimes, families know the gaps in care best and can also provide simple solutions, but they have to be at the table and considered an equal partner in order to do that.”

Castro Summers challenged the audience to think of how to include families in their contingency planning, and stressed that it is essential to have more than one family member present. “When you have at least two family members in the room, it not only makes us feel more comfortable to speak up, it allows you to get a fuller picture of the gaps in your system because each family will have a different experience,” she explained. “If you only have one voice representing a large population, then you may be missing other gaps that could be resolved.”

To Think About

Both speakers offered examples of key questions and considerations that Title V, newborn screening programs, family organizations and others can consider when engaging in NBS contingency planning in their states and communities. These considerations were based on lessons learned from participating in the CONPLAN revision process and include:

• Are you aware of contingency planning in your state’s public health programs (NBS or otherwise)?
• What public health programs and functions need to be supported immediately in an emergency (e.g., newborn screening)?
• What functions could continue effectively for a few days or weeks without additional support?
• Are you aware of collaborative agreements between local public health departments in your state?
• Are emergency personnel aware of special populations who may need special assistance during times of emergency?
• Do your state’s public health programs have a way to access data offsite?
• What opportunities are there to collaborate among state agencies and programs?

They encouraged stakeholders to consider this national NBS CONPLAN update not just within the scope of newborn screening, but emphasized it can also be used as a model for any contingency planning.

The conference session was the start of various dissemination efforts for the national NBS CONPLAN, including posting the finalized plan on CDC, HRSA and AMCHP’s webpages, as well as workgroup members sharing through their networks. For more information about the national NBS CONPLAN, please visit the NBS AMCHP webpage.