Arizona Newborn Screening Program Expansion

According to the March of Dimes, prior to the 2021 legislative session, Arizona’s newborn screening program was the worst system in the country. The state tested for just 31 of the 35 core conditions and none of the 26 secondary conditions contained in the U.S. Department of Health and Human Services’ Recommended Uniform Screening Panel (RUSP).

Arguably, the root cause of this poor rating was a statutory provision that required the newborn screening fee to be established by the Arizona Legislature, as opposed to an executive state agency, such as the Arizona Department of Health Services. At the time, Arizona was one of only two states in which the Legislature established the fee for newborn screening tests, with the overwhelming majority delegating that authority to their respective departments of health or equivalent agency.

As a result, the state’s ability to keep pace with those conditions that were added to the RUSP was complicated by the need to secure legislative approval before a condition could be added to the state panel. As a practical matter, by virtue of its power to set the fee, the Arizona Legislature was effectively determining which conditions comprised the state’s newborn screening panel, rather than pediatricians and other public health professionals. This meant that new conditions were added to the state panel only after heart wrenching testimony was provided by parents and advocacy groups who shared their tragic stories at the Legislature and if the measure made it through the political appropriations process.

As the maxim states, there had to be a better way.

During the 2021 legislative session, the firm represented a client interested in modernizing the process in which conditions could be added to the state panel. Accordingly, the legislative goal was to create a mechanism in which conditions on the RUSP would be automatically added to the Arizona newborn screening panel within two years of being added to the federal panel. In order to achieve this goal, the statutes would have to allow the Arizona Department of Health Services to set the fee as opposed to the Legislature, thereby removing the existing financial and logistical limitations.

While the firm contributed to the legislation throughout the session, the bulk of the firm’s involvement was spearheading a labor-intensive stakeholder process leading up to the 2021 legislative session. The firm was responsible for negotiating the competing financial interests and operational concerns between the commercial insurance industry, the state health plans that serve as the managed care organizations for the state’s Medicaid program, hospitals, and the Arizona Department of Health Services.

Given the uncertainty of COVID-19’s impact on the 2021 legislative session, it was critical to preemptively resolve the stakeholder issues and avoid the political leveraging that would likely occur if the issues were addressed during the actual legislative process. Despite the predictable setbacks and challenges common in complex negotiations, the firm, using the art of shuttle diplomacy, was ultimately successful in finding solutions that satisfied all impacted parties without having to debate the issues in a public forum.

The firm also designed a legislative strategy that proactively addressed the concerns of conservative legislators uncomfortable with granting a state agency director the authority to set fees outside of the legislative process. Borrowing from previous experiences, the firm met with key legislators prior to the start of the 2021 legislative session and created a series of “guard-rails”

that led to political comfort for legislators to then delegate the fee setting authority to the Arizona Department of Health Services.

Political equilibrium was accomplished by including the developed fiscal safeguards in the introduced version of the bill to demonstrate good-faith and to avoid any initial adverse reactions to the new authority provided in the legislation. As a result, conservative legislators never publicly expressed reservations about relinquishing their fee setting authority to an executive state agency.

Under the new program, Arizona will include all core and secondary RUSP conditions to the state newborn screening panel that are currently on the RUSP by December 31, 2023, with new conditions that are added after 2021 required to be added within two years of their addition to the federal panel. The commitment to developing consensus, as well as the collaborative mindset of the Goodman Schwartz Public Affairs team, created a public policy change that will quite literally save children’s lives.