Letter to the Hon. Alex Azar, Secretary of Health and Human Services - Underwood, Lewis Urge HHS Secretary Azar to Improve Coronavirus Data Collection, Reporting, and Research for Pregnant Women

Letter

Dear Secretary Azar:
We are writing to urge the Department of Health and Human Services (HHS) to ensure that the
United States is taking all available steps to adequately understand the unique risks for and
effects of the novel coronavirus (COVID-19) in pregnant women.
According to guidance for pregnant women from the Centers for Disease Control and Prevention
(CDC), "there are currently no data showing that COVID-19 affects pregnant people differently
than others, [although] we do know that pregnant people are at greater risk of getting sick from
other respiratory viruses than people who are not pregnant. Sometimes, this causes adverse
outcomes for the mother or child."1 CDC's guidance reflects a clear need for more robust data
collection to fully understand the risks that pregnant women might face due to COVID-19.
Further, as we seek to collect more comprehensive COVID-19 data for pregnant women, an
equitable approach must include a focused consideration of women of color, who already
experience disproportionate rates of adverse maternal health outcomes.2 People of color are also
suffering from higher rates of COVID-19 hospitalizations3
and fatalities.
4
In order to take appropriate steps to protect pregnant and postpartum women from COVID-19
risks, we must gather a stronger evidence base to inform future policy. Already, the CDC Human
Infection with 2019 Novel Coronavirus Case Report Form includes pregnancy-status data
collection. However, further guidance is needed to ensure complete reporting from health care
providers to public health agencies. For example, the Council of State and Territorial Epidemiologists reports that pregnancy status is rarely included by providers on orders for
COVID-19 tests when specimens are sent to laboratories. As such, when laboratories report
testing results to state public health departments, pregnancy-status data are not included,
preventing this important demographic information from being aggregated and analyzed.
It is critically important that pregnancy status be included as part of demographic data collected
and reported on COVID-19 testing numbers, confirmed case counts, hospitalizations, and
fatalities. In recognition of these urgent issues, we request a written response to the following
questions:
1. What guidance has HHS offered to health care providers to ensure that providers are
including all relevant demographic data, including pregnancy status, when sending
COVID-19 testing specimens to laboratories?
2. What additional steps is HHS taking to ensure that pregnancy status is included in
COVID-19 data collection, documentation, and reporting from health care providers to
public health agencies, particularly at the time of the initial or first report?
3. In what specific ways is CDC adapting its Surveillance for Emerging Threats to Mothers
and Babies program to evaluate COVID-19 among pregnant and postpartum women?
a. In which states are COVID-19 data being collected through the Surveillance for
Emerging Threats to Mothers and Babies program?
b. In states that are not included in the program, what steps are being taken to ensure
that important pregnancy-related data are being collected, reported, and analyzed
in the context of COVID-19?
c. What steps is CDC taking to align the Surveillance for Emerging Threats to
Mothers and Babies program with other CDC surveillance programs, such as the
National Notifiable Diseases Surveillance System, to minimize reporting
requirements for states?
4. We are encouraged to learn about recent efforts to understand the effects of the COVID19 pandemic during and after pregnancy, like the National Institutes of Health study
through the Maternal-Fetal Medicine Units (MFMU) Network. However, we must ensure
that such efforts include proactive steps to promote racial, ethnic, and geographic
diversity among participants. What steps is HHS taking, through the NIH MFMU
Network study and other research, to ensure diverse participation in studies conducted to
understand the effects of COVID-19 on pregnant and postpartum women?
Thank you for your attention to this matter. We look forward to working with you to ensure that
the health and safety of pregnant and postpartum women is protected during the COVID-19
public health emergency and beyond.