In 1999, the National Institutes of Health referred to preeclampsia as a “rare and orphaned” disease, not because it was rare, but because it was “orphaned” – with no advocacy group working on its behalf.
A group of committed volunteers took up the mantle and the Preeclampsia Foundation was incorporated, as a nonprofit organization, on August 29, 2000. For 20 years, the Foundation has focused on education and awareness, working with healthcare providers to utilize the best practices for identification and treatment of the disorder, advocating for legislation to improve maternal health, and catalyzing research for a cure. Our story is your story and we will use the rest of 2020 to tell how you made this possible.
Today, over 2 million unique visitors rely on the foundation’s website for information and resources. Thousands of healthcare providers distribute the Foundation's patient education material, and a research registry of over 6000 survivors is used for numerous studies, including several that are funded by the Foundation through its Peter Joseph Pappas Research and Vision Grant programs.
As a partner in the Alliance for Innovation on Maternal Health (AIM), a voting member of the Council on Patient Safety in Women’s Healthcare, and as a member of numerous state, national and international task forces, the Foundation works to improve outcomes by bringing the lived experience to guidelines, best practices, research studies, and quality improvement initiatives.
The Society for Maternal Fetal Medicine’s (SMFM) 2020 president Dr. Judette Louis adopted preeclampsia as the focus of her presidential platform in recognition of the Foundation’s work and to advance preeclampsia’s research and clinical agendas.
An influential voice in federal policy, the Preeclampsia Foundation played an instrumental role in critical legislation like the Preventing Maternal Deaths Act, signed into law in late 2018.
“While we are proud of our accomplishments, our commitment today is stronger than ever,” says Preeclampsia Foundation CEO Eleni Tsigas, who started as a volunteer and has led the organization since 2009. “With 60% of maternal deaths due to preeclampsia considered preventable, our work is far from done,” says Tsigas.
 Main EK, McCain CL, Morton CH, Holtby S, Lawton ES. Pregnancy-related mortality in California: causes, characteristics, and improvement opportunities. Obstet Gynecol. 2015: 125(4):938-947.
We remember a day 20 years ago when a small group of preeclampsia survivors and providers set out to make a difference in the lives of moms and babies. As we celebrate “20 Years Later: Recognizing Progress and Renewing the Commitment”, we will share the perspective of these visionary leaders, the impact we've made and their vision for the future.
He was there from day one. Dr. Tom Easterling, a maternal fetal medicine specialist, a preeclampsia expert, and passionate advocate for the diagnosis and treatment of hypertensive disorders of pregnancy, sat down with us regarding his perspective on what the preeclampsia community has accomplished, what remains to be done, and his advice for the future. Dr. Easterling leads the Foundation's Medical Advisory Board and serves as a ex-officio member of the Board of Directors. We sat down with him to get his perspecitve on the last 20 years.
We have come to realize that preeclampsia is the result a very complex interaction between factors associated with endothelial health, immunological interactions at the maternal-placental interface, angiogenic regulation of placental invasion, and hemodynamic changes associated with pregnancy. Thus, the answer is not simple. Single molecule therapeutics are unlikely to be uniformly successful.
Clinically, the adoption of time critical and goal based utilization of antihypertensive therapy and MgSO4 for acute severe hypertension has led to improved maternal outcomes. This has been particularly effective within health care systems.
Expansion of the impact of preeclampsia beyond the immediate period of pregnancy: modifiable pre-conceptional conditions that may impact outcomes; identification of long term cardiovascular risks revealed by pregnancy outcomes.
Disparities in access to and utilization of health resources are associated with adverse maternal outcomes associated with hypertension in pregnancy. While we do not yet have the ability to prevent all preeclampsia, we do have strategies that can dramatically improve maternal outcomes. Barriers to care are in some cases straight forward, full equable funding of prenatal care. Yet, barriers to full utilization of care are more complex. I would aspire to the full integration of pregnant women and women at risk to become pregnant into a health care system that helps them safely achieve their reproductive goals.
The Preeclampsia Foundation has empowered women to be informed about and to advocate for their own health care – to trust themselves.
The Foundation has brought preeclampsia with associated short-term and long-term to the attention of public policy and health related funding organizations.
I have had great satisfaction helping women and families through complex hypertensive pregnancies. These experiences have probably given me the greatest personal satisfaction.
I am proud of offering support and some guidance to the leadership of the Preeclampsia Foundation such that the organization has achieved a place of prominence among patient based health advocacy organizations.
I am most proud of work expanding the understanding the hemodynamic and pharmacological basis for treatment of hypertension in pregnancy.
Think critically. Be brave. Be creative. Old ideas and old assumptions are not likely to move us forward. “I don’t understand,” is often the first step to a better understanding. Expand your clinical exposure to preeclampsia and let these experiences drive your questions and ideas. Remember the mothers and families affected by preeclampsia and let them serve to motivate you.
Am I hopeful? I do see ever improving attention to early diagnosis and critical surveillance and treatment of hypertensive disease in pregnancy. These efforts are penetrating deep into all levels of health care systems to the benefit of many women. I am hopeful, but not certain, that services to pregnant will be at the vanguard of effectively expanded health care access. The maps of high maternal mortality and lack of access remain overlapping. I am hopeful when I see medical students, residents and fellows who are bright and well educated with understandings of reproductive biology beyond what we ever had. I am less hopeful when I see them consumed by institutional medicine that does not seem to value innovation and medical progress over, or on par with the generation of RVUs. I am not sure I could have found success in this environment.
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