A transcript of Dr. Marlena Fejzo’s acceptance speech to the National Organization for Women on receipt of their 2024 Victoria J Mastrobuono Award
The mission at NOW has always been near and dear to my heart and I am ecstatic to be recognized for my research on morning sickness and the most severe form, hyperemesis gravidarum (known as “HG”)! This recognition is bringing much-needed attention to HG.
We have been able to put a man on the moon for decades, but women are still dying from nausea and vomiting of pregnancy.
It was reported to be the fourth leading cause of maternal death in Botswana in 2019 and even killed a woman right here in Los Angeles in this century. In 1999, I suffered nausea and vomiting of pregnancy so severe I could not eat, drink, or move without violently vomiting. I had to lie totally flat and still for weeks and was eventually put on seven different medications at once, but nothing worked. During that time, my doctor told me I was exaggerating my symptoms for attention. I knew that wasn’t true, but I didn’t have any energy to argue. I finally ended up on a feeding tube, but it was too late and I lost the baby in the second trimester.
Once I recovered, I saw how little was known about HG. I have a PhD from Harvard in medical science where I found the first genes for uterine fibroid tumors, so I decided to take things into my own hands, and have been researching HG ever since. I discovered HG is very likely to recur, can lead to PTSD, can increase risk of neurodevelopmental delay in children, that it runs in families, and I discovered the genes.
HG was not just serious in my case. In addition to extreme weight loss and malnutrition akin to prolonged starvation in pregnancy, people in my studies have had their eardrums burst, their esophagus tear, and their retinas detach from the endless violent vomiting. There continues to be reports of people getting brain damage due to vitamin B1 deficiency. HG is associated with increased risk for postpartum depression and post-traumatic stress. Babies exposed in utero to HG are at increased risk of preterm birth and neurodevelopmental delay, smaller brains, autism spectrum disorders, respiratory and cardiac disorders, and even childhood cancer. HG has serious consequences. Nutritional deficiencies are the likely culprit.
The importance of adequate nutrition seems obvious since all pregnant people are encouraged to take prenatal vitamins and eat well in pregnancy. Yet this advice goes out the window with HG. The first-line recommendation by the American College of Obstetricians is to substitute prenatal vitamins with folic acid, suggesting folic acid is the only vitamin that matters for maternal and fetal health. That is not true. Babies born with vitamin K deficient embryopathy are living evidence that in the case of HG, the baby does not always get everything it needs from the mother.
In addition, the tools we have are inadequate. Most people do not start gaining lost weight back within two weeks of initiating use of anti-nausea medications. Obstetricians are not trained to screen patients for HG and since it occurs early in pregnancy, the first doctor HG patients see is often an untrained emergency room doctor. Right now, HG patients, violently ill, spend hours in emergency rooms only to be treated and released and come right back again. I am working to change that by opening specialized centers to treat female conditions of unmet need, starting with HG. I am delighted to announce that we opened our first Harmonia Healthcare Center in NJ this May with the next in NYC in the fall.
Morning sickness leads to an average of 23 days of missed work and it is estimated that >100,000 pregnant people in the US missed > 60 days of work last year due to HG. In order to work and care for families, pregnant people are forced to make the agonizing decision of taking anti-nausea medication off-label with no evidence of effectiveness or safety because pregnant people have historically not been included in clinical trials. We deserve better.
Some solutions in addition to opening our specialty care Centers include more funding for studies, revised education that includes better training of obstetricians and ER doctors, and OBs will hate me for this one but, a law that requires outcome reporting of exposures to any off-label medication prescribed in pregnancy to a national database. That is the fastest way I can think of that pregnant people can know whether the medications they have to take in pregnancy are safe and effective.
With decades of hard work and the help of many including the dedication of Kimber MacGibbon, HER Foundation director, 23andMe, and Regeneron, I discovered the severity of nausea and vomiting of pregnancy is primarily determined by a nausea and vomiting hormone called GDF15.
In partnership with an international team of scientists including Cambridge endocrinologist Stephen O’Rahilly, we now have ways to potentially prevent and treat HG. These must be tested, which means we need both funding and a reasonable path forward. This will be determined in part, by the FDA. In the past it has been prohibitive to test medications in pregnant people, and that must change. Currently approximately 6% have therapeutic terminations and 14% use cannabis with the primary reason being nothing worked. There are significant disparities in prescribing practices. People from BIPOC communities are less likely to get prescriptions and more likely to end up hospitalized for HG. Regulators must understand that both cannabis use and undernutrition and resulting adverse maternal and child outcomes are the consequence of not having medications available. Turning a blind eye is doing more harm than good.
It should not have taken me, a woman scientist who lost a baby to HG, decades to make progress for this common affliction. In addition to more support for female healthcare, we need more support for females in science to better the health of women and AFAB people. We can do better. We must do better. The result will be better health for generations to come.
About Dr. Marlena Fejzo
A deserving recipient of NOW Foundation’s Victoria L. Mastrobuono’s Award in Women’s Health, Dr. Marlena Fejzo has led a distinguished career focused on researching health challenges most often experienced by women. In March, Dr. Fejzo was honored as one of Time’s Women of the Year and, in May, she was named one of Time’s 100 Health leaders, advancing safe pregnancy. Dr. Fejzo has made significant breakthroughs in research on Hyperemesis Gravidarum (HG – a severe form of vomiting during pregnancy), fueled by her own personal experience with the condition. She successfully identified the gene with the greatest risk factor for developing the condition and is now turning her attention to identifying potential therapeutics.
Marlena Schoenberg Fejzo is a women’s health scientist. She received her Ph.D. in Genetics from Harvard University in 1995. From 2000-2020, she worked on ovarian cancer in the Department of Medicine at the University of California, Los Angeles, in the laboratory of Dennis J. Slamon. Currently, she is a research faculty at the University of Southern California, Keck School of Medicine in the Center for Genetic Epidemiology.
Dr. Fejzo has published peer-reviewed scientific articles on many diseases of women including ovarian cancer, breast cancer, multiple sclerosis, and discovered the first genes for uterine fibroids, nausea and vomiting during pregnancy, and Hyperemesis Gravidarum (HG). In 2018, Fejzo, in collaboration with personal genetics company 23andMe, Inc. published the first link between the placenta, appetite, and vomiting hormones. Fejzo made the top 10 list of 2023’s Fiercest Women in Life Sciences. In December 2023, Nature published a study by Fejzo et al. that identified ways to potentially prevent and treat both nausea and vomiting in pregnancy and HG.
Fejzo is Research Director and Board Member of the Hyperemesis Education and Research (HER) Foundation, Board Member of the Foundation for Women’s Health, CSO of Harmonia Healthcare, and an advisor for NGM Bio. Dr. Fejzo is currently seeking funding opportunities and grants related to her work on Hyperemesis Gravidarum.