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Recognizing Progress, Renewing Commitment

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[1], our work is far from done,” says Tsigas.

[1] 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

 

2020 Visionary
Dr. Thomas Easterling  

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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.

1. In the past 20 years, what progress has been realized in the field of preeclampsia? (research or clinical care)

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.

2. What is your greatest aspiration for the field of preeclampsia for the next 20 years?

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.

3. What do you think the Preeclampsia Foundation’s greatest achievement or impact has been?

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.

4. Which of your many contributions to the Preeclampsia Foundation’s mission are you most proud of?

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.

5. What message would you leave for the next generation of “visionaries” in the field?

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.

6. What are you most hopeful about?

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.

2020 Visionary
Dr. S. Ananth Karumanchi

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Dr. S. Ananth Karumanchi has dedicated his professional life to the study of hypertensive disorders of pregnancy. Having published more than 275 papers on preeclampsia, his tenacity and professional dedication has had a profound impact on understanding this disorder. For the Preeclampsia Foundation he has served on both Medical Advisory Board and the Scientific Advisory Council and serves on the Review Committees for both the Peter J. Pappas and Vision Grant programs.
 
As a visionary in the field of preeclampsia research and dedicated volunteer, we asked what Dr. Karumanchi sees as the greatest accomplishments of the last 20 years and his exciting vision for the future. Here's what he had to say:

1. In the past 20 years, what progress has been realized in the field of preeclampsia? (research or clinical care)

While we do not understand the origins of the disease, we have a much better understanding of the pathways that lead to the clinical signs and symptoms of the disease.  20 years ago, the disease was largely descriptive; however we now have characterized molecules that can give you a quantitative burden of the disease in a woman and that can be used for the early diagnosis of the disease.

2. What is your greatest aspiration for the field of preeclampsia for the next 20 years?

To develop therapies based on a sound mechanistic understanding of the disease. Because we now have deep understanding of the pathways that mediate disease signs and symptoms, it is possible to develop personalized therapies that target specific pathway in a given patient.  I am hopeful that these therapies will not only lower maternal morbidity, but also extend pregnancies in a safe fashion and avoid prematurity.

3. What do you think the Preeclampsia Foundation’s greatest achievement or impact has been?

  1. developed very useful website and educational material that has helped raised awareness of the disease for both patients and family members
  2. supported research by providing start-up funding for young investigators
  3. helped create new legislation such as “Preventing Maternal Death Act”.

6. Which of your many contributions to the Preeclampsia Foundation’s mission are you most proud of? 

I have participated in the scientific review panels for the Foundation’s research grant programs. I have also participated in fund-raising events such as Saving Grace, Promise walk events etc. But I am most proud of engaging with patient community and working in developing policies to improve health care practices. Learning patient perspectives and incorporating that into guidelines (for example, ACOG task force in 2014  for pregnancy hypertension) was very rewarding.

5. What message would you leave for the next generation of “visionaries” in the field?

“Status Quo is not OK”.  Next generation of scientists/visionaries need to make an impact (either in basic, clinical or health care policy) that will lead to better lives for women and their children.

6. What are you most hopeful about?

Given that the clinical disease can be measured quantitatively with biomarkers, I believe there is push now to tested targeted therapies. I am optimistic that we will be testing several biomarker-driven mechanism based therapies in the next 5-10 years

 

2020 Visionary
Dr. Catherine O'Connell

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By day, Catherine O'Connell, PhD, is a researcher at University of North Carolina Chapel Hill and an Associate Professor in the Department of Pediatrics.
 
Though not a preeclampsia researcher, Dr. O'Connell is a HELLP syndrome survivor who wanted to use her experience and professional expertise to help the field of research and began volunteering with the Preeclampsia Foundation. For 10 years now, Dr. O'Connell has worked behind the scenes with the Foundation's Vision Grants and Peter J. Papas research program.
 
"So much work goes into collecting, organizing submissions, communicating with candidates, and assisting with the oversight of these two major programs," says Eleni Tsigas." We are so very fortunate to have Catherine's expertise. Her contributions to this program are invaluable."  Here's Dr. O'Connell's perspective:
 

1. In the past 20 years, what progress has been realized in the field of preeclampsia? (research or clinical care).

This is a hard question to answer as a non-preeclampsia researcher.  I think as a non-clinician, I continue to be impressed by and respect the positive impact of the quality implementations first initiated in California and now being mirrored in other states.  The impact on maternal morbidity and mortality was both immediate and dramatic. On the basic research side, I am confident that the PF hasn’t missed an opportunity to support highly innovative research using the most current approaches to go to the edge of the unknown. 

2. What is your greatest aspiration for the field of preeclampsia for the next 20 years?

More progress for more mothers.  In an era where “personalized medicine” is being realized, better and more deconvolution of preeclampsia away from a syndrome towards better tailored diagnostics and treatments for all its myriad manifestations. 

3. What do you think the Preeclampsia Foundation’s greatest achievement or impact has been?

Not one but two magnificent achievements: 1) on behalf of women and families affected by preeclampsia, the establishment of a community that hears their pain, amplifies their voices and rejoices in their progress towards successful pregnancies and healthy babies. 2) a patient-led organization that demands, funds and achieves focus, rigor, ethics and innovation by clinicians and researchers trying to make progress towards better understanding and therapy for preeclampsia. I think that many non-profits have been recognized for one or the other, achieving both is a bit special.

4. Which of your many contributions to the Preeclampsia Foundation’s mission are you most proud of?

Heavens, I don’t know that I’m particularly “proud” of any contribution that I have made.  It is/was a relief to make tangible contributions to the mission of the PF because doing so helped me come to terms with the experience of a preeclampsia-affected pregnancy and the subsequent nerve-wracking fear I experienced when pregnant again. I’m awkward in person as anyone who ever met me on my occasional, stumbling outreach could tell you.  I’ve NEVER been able to ask anyone for money. The early days of the PF’s bulletin boards served as therapy that helped me put my experience in context, as much as new way to share knowledge with other women who had been pulled from their trajectories by preeclampsia.  I’m glad that my academic career and experience equips me to support the research arm of the PF.  I’m a basic-science researcher in my professional life, I empathize with the angst, stress and process of formulating and presenting an idea for funding and it is a pleasure to support applicants through the review process of the Vision and PJP grant programs.  

5. What message would you leave for the next generation of “visionaries” in the field?

It’s going to take a village of clinicians, basic and translational researchers, epidemiologists and teachers to advance. Your project might be the one that makes the biggest difference in the end. Have confidence that your contribution will have value, if the PF supports your research then it has recognized your potential to have a positive impact on this challenging problem.

6. What are you most hopeful about?

The PF has grown into a respected and impactful organization. Where once it spoke primarily to the community directly impacted by this disease and to the physicians that managed it, now it advocates at the highest levels of political life.  It’s most recent drive to recognize and address racial disparities in outcome and access to optimal care reflects an organization that doesn’t falter in the face of big challenges. I’m glad that it can speak on behalf of all of us with authority and credibility.

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