Legal Authority for Infectious Disease Reporting in the 50 States, D.C., and N.Y.C. with the 2009 H1N1 Influenza Pandemic as a Case Study

BACKGROUND:   Mandated disease reporting laws vary as to which diseases and who must report; specimen submission and medical records access; and the ability to rapidly add conditions. Using 2009 H1N1 as a case study, we examined the relationship between a state’s authority and its ability to collect data.

METHODS:   We used Westlaw to characterize reporting features in focusing on general communicable disease, influenza, and emerging infections. Features were combined to create measures for robustness in three domains: General, Influenza-specific, and Emerging Disease-specific. We surveyed key informants regarding data collection barriers during the pandemic, and data-based recommendations regarding schools, daycares, antivirals, and vaccine prioritization. A sample was interviewed regarding perception of how reporting laws functioned during then.

RESULTS:   37/52 (71%) had robust general laws; 8 (15%) robust influenza; and 1 (2%) robust emerging disease. 19/52 (37%) made changes since the 2009 pandemic. Of 8 that did not mandate reporting of individual cases at the pandemic onset, 7 changed to mandate some specific influenza cases, and 6 made reporting permanent. Of 45 respondents, none reported lack of legal reporting authority problems; 1 reported legal concerns with submitting data to CDC. However, 28/45 (62%) reported not collecting data (e.g. race/ethnicity) for reasons such as lack of resources. Respondents generally reviewed their data during and most adopted CDC recommendations for antivirals and vaccine without modification. Fewer states, but a majority, adopted CDC school/daycare recommendations during the first pandemic wave without modification.

CONCLUSIONS:   While most have robust mandatory infectious disease reporting laws, there is room to strengthen laws addressing influenza and emerging diseases. For instance, 40% did not have express authority to immediately add a new reportable disease outside of standard or emergency rulemaking procedures. Over 1/3 changed their laws since the pandemic to enhance their mandates.  States generally adopted CDC pandemic recommendations with no deviations in their own data than nationally.   The locus of decision-making may be different in a regional outbreak, which may rely more on the use of state-specific data. Reliance on cooperation during the pandemic may not be generalizable to other emerging infections. Influenza surveillance was generally pre-exiting and public health labs were often the only labs capable of detecting 2009 H1N1. A novel pathogen, or one that affects persons in a stigmatized group, might result in surveillance challenges that require legal mandates for reporting. States should be mindful of their mandated reporting parameters and review the robustness of their laws.