Women are being eliminated from data collection and reporting. From government website scrubs to the dismantling of maternal mortality review committees, our voices and experiences are being systematically erased. These actions suppress critical health information, opening the door for more extreme policies and making it harder to demonstrate the harms and hold policymakers accountable. Health data is critical in achieving gender equity; advocates like us rely on it to illustrate gaps and help us inform policy reforms. NPWF is committed to highlighting how critical information on women’s health is being erased, misrepresented or weaponized, rendering our experiences invisible, undermining scientific progress and worsening health outcomes.
During the first weeks of Trump’s presidency, federal agencies were forced to scrub their databases of mentions of gender identity and other terms that conflict with the administration’s actions to deny the existence of trans people and force women back into the home, while simultaneously taking steps to eliminate data privacy. These removals included CDC documents on reproductive health, sexual health, intimate partner violence and other vital information. At a time when the Dobbs decision has heightened fears and confusion around accessing reproductive health care, accurate and reliable information is vital. The erasure of information on reproductive health issues, like the safe usage of contraceptives, is detrimental to women’s care and health outcomes. It deprives clinical providers of a reliable, medically-accurate source of information essential for providing clinical recommendations on contraceptives that are tailored to each patient’s health conditions and lifestyle. These attacks also involve funding cuts to vital research on women’s health, widening existing gaps in women’s health data and undermining progress in the care and treatment of women. NIH staff have been ordered to deny funding to research projects focused on issues of gender identity and diversity, equity, and inclusion. As the largest source of funding for medical research in the world, these cuts mean an end to thousands of research projects which are crucial for improving women’s health – on critical issues like menopause, endometriosis, heart disease, and more.
Certain states have suppressed their Maternal Mortality Review Committees (MMRCs), with some going as far as to halt reviewing maternal deaths in an attempt to deny and reject accountability for the fallout of the Dobbs decision. MMRCs play a crucial role in reviewing maternal deaths and providing recommendations to prevent future deaths. But anti-abortion policymakers are driving efforts to suppress these committees, denying the maternal deaths caused by their harmful policies. For instance, Idaho retired its MMRC committee following Dobbs, and other states like Texas are refusing to review and report on maternal deaths. In Georgia, all members of the state committee were dismissed in November 2024 after a ProPublica investigation reported on two cases of maternal deaths that the committee determined were preventable and caused by the state’s abortion ban. These efforts to censor and strip MMRC of their ability to analyze data and produce recommendations to improve maternal care harm women, particularly Black and Indigenous women who bear the brunt of the maternal health crisis. Without these committees, preventable deaths will be overlooked and ignored, making it nearly impossible to hold policymakers and healthcare systems responsible for preventing and addressing the crisis.
In other states, Republican policymakers are attempting to obfuscate and alter evidence about the number of abortions that have occurred since Dobbs. For example, South Dakota reported that zero abortions occurred in 2023 – a number far from true. People have continued to seek and obtain abortion care in spite of bans, and research shows that the number of abortions has increased since Dobbs. Yet anti-abortion politicians and groups have used these altered statistics to push the narrative that Dobbs successfully ended abortion care. This disinformation erodes public trust in science, confuses patients about their options, and normalizes restrictive abortion laws that undermine access to medication abortion and criminalize providers. Dobbs has not eliminated abortion but has made accessing it more expensive and challenging to access for millions in abortion restrictive states, who must travel further and risk criminalization to access necessary care. By altering abortion numbers and weakening MMRCs, anti-abortion lawmakers minimize and deny the impact of abortion bans and restrictions on women’s health, especially in relation to the maternal health crisis.
The suppression and altering of our lived realities is unacceptable. As critical datasets continue to be eliminated, we must remain steadfast in our defense – supporting public health professionals and advocates in preserving eliminated documents while pushing for their reinstatement. We have already witnessed powerful examples of scientists and advocates taking action to preserve critical data, creating data webs to store scrubbed data, such as recreating the CDC website: https://restoredcdc.org./www.cdc.gov/. And while these actions have been vital in protecting data, we also need policymakers and states to step in, calling out the harms of past and current efforts to ignore women’s experiences, demanding the restoration of datasets, providing robust privacy protections and investing in the inclusion of women in critical health research.
Our experiences matter. We must remain visible and included in health data and data must be used in ways that advance health, trust, and privacy – today and always.
Stay tuned for part two, where I explore the harms of prejudiced data collection and utilization.
