The following provides a guide for newborn screening staff with important steps to consider when making policy changes. Veteran NBS advocates may also find it helpful.
What You'll Need
To successfully address policy changes for newborn screening programs, you should determine your state's specific needs in order to meet the timeliness goals. Some steps will include:
- Becoming familiar with your state's existing NBS transit times, courier service and operating hours
- Involving your health department's government liaison
- Developing contacts at other organizations who be interested in this issue, including those who advocate for maternal and child health, parents and caregivers, healthcare providers and hospitals. Newborn screening covers a broad array of conditions and the issue is of the and the issue of interest to advocates from rare diseases and research communities.
- Confirm your state’s current newborn screening program’s transit times, courier services and lab operating hours. See the NewSTEPs state profiles.
- Identify the mechanism for changing this policy. In some states, it can be changed through a state advisory committee or Board of Health. In others, it will require a change in regulation or through legislation. In many cases, it will require additional funding. See ASTHO's Laws and Regulations Decision Tree in Section 3 of this toolkit.
- Determine whether there is currently an interest in your health department for a change in policy.
- Determine whether there is interest in the advocacy community to take action. Other organizations may already be considering work on the issue or willing to engage. Organizations interested in NBS policy include March of Dimes (see the list of contacts for each region here), Baby's First Test of Genetic Alliance, American Academy of Pediatrics, rare disease organizations, and hospital associations.
- Determine your best arguments for promoting this policy change. State health officials and policymakers may be more interested in knowing about the short or long-term public health impact, cost, and cost-effectiveness, or the experiences of other states that have already implemented the change.
- Develop a fact sheet to explain the need for the policy change. See Section 5, Communication Materials, for more information.
- Tell an impactful story through a family experience or a narrative about a newborn screening program feature.
- Utilize social media to help educate the public and policymakers about the program’s needs.
For more information, see "Developing an Advocacy Strategy" (Chapter 3) in UNICEF's Advocacy Toolkit for additional information.
Tips on Writing a Policy Statement
A policy statement describes an organization’s stance on a particular topic and contributes to the policy base of the organization. Policy statements serve to clarify the intent, position, and justification to stakeholders and the general public.
A good policy statement should:
- Contain a clear statement of position, preferably in the first paragraph
- Include background and rationale for the position
- Include any relevant information and cite/include links for other documents
- Avoid any contradictory statements within the policy statement or with other organizational policy statements
For more information about policy statements and policy langugage, including examples, please refer to APHL's Residual Dried Blood Spot Educational Toolkit.