Women suffering from debilitating nausea and vomiting during pregnancy, called Hyperemesis Gravidarum, constantly wonder why there are no safe and effective medications for this disease in which over 200,000* women worldwide endure annually. The answer is multifaceted – just think about the impact from the thalidomide disaster in the 1950s! Since we cannot go back in time to persuade researchers from decades ago to find a treatment to help us today, the best thing we can do is use our experiences to improve care for the women who have survived and would like more children and for future generations of women yet to become pregnant. With little research being done by companies who have large sources of funding, we are fortunate to have grassroots organizations continuously polling HG moms in an effort to improve treatment. Please support the following organizations:
1. The HER Foundation: The OG of HG Research!
The HER Foundation is a non-profit organization where the founders, board members and volunteers are all HG survivors (or the spouse of one) who give their time and money selflessly. Many of them have made this their full time focus for decades. They are always updating polls and creating new studies. They also have guidelines ready to share with your providers. Participate in a poll or research project with them today: www.hyperemesis.org/research/current-research-opportunities/
*Full disclosure: I am a former board member as well as a participant in their first study which led to their researchers discovering the genetic connection of HG. Read the results in the journal Nature. I am also a co-author on a study looking at the pharmacogenetic variations of ondansetron and its connection to patient perception of its effectiveness and the need for TPNs.
The International Collaboration for Hyperemesis Gravidarum Research consists of patient organizations and practicing clinicians who are working on international research projects. Founded by Pregnancy Sickness Support in the UK, they collaborate with many groups including the HER Foundation.. Sign up to support their organization. If you’re in a medical profession or a student practitioner, you can partner with them to support research.
Their biennial conference is coming up soon, October 5-6, 2022 in London. Attend if you can! https://www.hgresearch.org/ichg2022
Stuff that Works was started in 2021 by data scientists with tech startup experience through crowdsourcing after one of the founder’s daughters had a disease that doctors said was “mundane” yet it upended her life. Her daughter had a different disease but experienced the same reaction HG sufferers experience from the medical community!
The Stuff That Works team is gathering data on every disease state using artificial intelligence (AI). The idea is to gather personal experiences on an enormous number of people, the larger the better, to improve patient care through informed decision making. Click the link above and start answering questions about HG now!
Who will compile the results of the research to create guidelines?
In the medical community, guidelines are used to make treatment decisions and are so powerful that few practitioners will risk swaying away from them. This is because guidelines are derived from evidence-based medicine, often from a compilation of clinical studies and years of evidence, and agreed upon by a group of experts in that field of medicine. These experts are proud to quote what study, often with a quirky name or acronym, from which the guidelines were derived. In a perfect world, guidelines are clear, concise and consistent, but science is also an art, and unlike other disease states like blood pressure or cholesterol which have quantitative results, HG is not easily be measured by numbers.
Which agency or group of experts are the ones to write the guidelines varies by country and disease state. Sometimes, there is an overarching government-funded organization that determines treatment guidelines. In the United states these agencies include the Agency for Healthcare Research and Quality (AHRQ), which is a clearinghouse for medical guidelines, the Center for Disease Control (CDC) and the National Institute of Health (NIH) which has a subcommittee for women’s health. Other times there are committees of medical experts who are part of a disease-specific association who write the guidelines. For example:
- Blood pressure guidelines by American Heart Association, American College of Cardiology and nine other health professional organizations
- Diabetes treatment by the American Diabetes Association
- Sepsis by the Society for Critical Care Medicine, called the Surviving Sepsis Campaign
When it comes to HG guidelines, obstetricians follow guidelines written by the American College of Obstetrics and Gynecologists (ACOG). These guidelines, in my opinion, are too little and too late because pregnant women are suffering from Hyperemesis and extreme nausea long before they see an obstetrician, and the practitioners that HG patients are seeing, like Nurse Practitioners in the emergency room, are not members of ACOG. By the time an HG patients have an thorough appointment with an obstetrician, they have missed a vital opportunity ranging from weeks to months to stay ahead of the disease and receive medical interventions that not only increase the quality of life but may prevent complications from occurring later in pregnancy.
We need Hyperemesis Gravidarum guidelines to be taught in medical schools, pharmacy schools, nursing schools, and in programs for physician assistants and all other medical professionals who may work with pregnant women. I am therefore urging everyone to participate in the above research organizations and to advocate to their representatives and research universities to make standardizing effective treatments for Hyperemesis Gravidarum a top priority. My hope is that the results from these grassroots agencies will be examined by a group of experts in our field to create a conclusive set of guidelines and ensure they are well-known.
Need immediate support? Join the HG Clinical Solutions Facebook support group now!
*2% of 140 million births https://statisticstimes.com/demographics/world-death-and-birth-rate.php