Ted Anderson, MD, PhD, American College of Obstetricians and Gynecologists (ACOG), Mary Lou Ballweg, Endometriosis Association, along with Tammy Boyd and Kineta Sealey, both from the Black Women’s Health Imperative (BWHI), discuss a new Alliance that will help address the growing need for care among women with endometriosis, why the establishment of this Alliance is an incredibly valuable resource for patients and clinicians alike, and explain how health care providers can help inform their patients of this Alliance to help get more patients involved.
Dr Anderson has a PhD in Anatomy, completed an internship in pathology before his residency in ObGyn and a fellowship in reproductive pelvic surgery. He currently serves as vice chair for clinical operations and division director for gynecology at Vanderbilt University Medical Center in Nashville, TN. He is also the immediate past president of the ACOG.
Ms Ballweg is the president and executive director of the Endometriosis Association, an organization she cofounded in 1980 after her own experience with endometriosis. The goal of the association is to provide support and information for families affected by endometriosis, educate the public and medical community about the disease, and promote/conduct research. Besides founding and leading the Association for 40 years, Ms Ballweg has overseen the publication and production of four books on endometriosis, three educational tapes, development and execution of two multi-million-dollar campaigns aimed at awareness, and more. She also spearheaded the establishment of the first research registry in the world for endometriosis and has led the endometriosis field in understanding the importance of pain in endometriosis. The association’s research has been replicated many times and has partnered with world-class medical establishments like National Institute of Child Health and Human Development, Geisel School of Medicine at Dartmouth, and Vanderbilt University School of Medicine to continue research.
Ms Boyd is the chief policy officer and counsel overseeing policy for the BWHI. Prior to her current position, she worked on Capitol Hill on the United States House Ways and Means Subcommittee on Health for the late Congressman John Lewis and at Johnson & Johnson.
Ms Sealey is a policy counsel for the BWHI. She has always had a passion for health care. After receiving a Bachelor of Science degree in health management sciences, she pursued a career in the pharmaceutical industry where she served as an ally to patients and physicians in treating a variety of diseases. This was followed by work experiences in law firms and on Capitol Hill where she worked collaboratively to address, strategize, and provide recommendations on issues, including those in health care. Today, she works to achieve health equity for Black women and girls nationwide.
Let’s talk about the background of endometriosis. Why are women often dismissed for their pain, and why do they go without diagnosis or support? What are some of the financial and personal burdens from this disease?
Dr Anderson: There is no uniform set of clinical symptoms experienced or described by women with endometriosis. Even if you consider common symptoms like menstrual-associated pain, there is a lot of variability in the normal range so that physicians do not always recognize the possibility of endometriosis. Furthermore, perception of pain differs among patients and patients often have no frame of reference of what normal or excessive pain is.
There is some hesitance by OB/GYNs to pursue surgical evaluation before trying several medical options, especially in the younger years when endometriosis is more likely to present. So it is a matter of recognizing symptoms that could be endometriosis and thinking of endometriosis as a possibility: the eye doesn’t see what the mind doesn’t know.
The burdens of endometriosis, in addition to the cost of seeking care, medications, and ultimately surgery, include lost time activities due to pain (work, social, sports, etc) and possible contributors to infertility. In severe cases, other organ systems can be affected, kinking or blocking the ureters or invading the bowel) causing serious medical problems.
Ms Ballweg: We have been pursuing the answer to that for 40 years! The bottom line is that women with any pain related to reproductive function tend to be dismissed due to the long-standing myth that it is normal to have pain particularly with menstruation. Now, science has shown that is not the case and pain typically signals that something is wrong, but because menstruation is laden with taboo and stigma, women and girls themselves have been reluctant to bring it up to their physicians and physicians may dismiss it.
We, the Endometriosis Association, conducted a study in the past that showed we are dealing with a societal bias that manifests in families and in the health care provider space that deters women and girls from getting the resources they need to deal with this disease.
Because of this, in regard to financial or personal burdens, we often see girls face hardship in getting through college due to dealing with ongoing, severe pain or their struggle to tell prospective romantic partners about their disease (discomfort, infertility, pain during sex, etc).
Ms Boyd: The BWHI is working toward educating providers so that Black women do not have to deal with implicit bias and negative stereotypes impacting their diagnosis and treatment with diseases like endometriosis.
Ms Sealey: Thanks for asking this question. Endometriosis is a painful and debilitating disease. Generally speaking, women’s pain is not taken as seriously as men’s and we fight stereotypes that categorize us as overly emotional and hysterical. These misrepresentations directly affect our medical treatment.
For Black women specifically, the situation is worse. Studies have shown that White doctors see Black patients as less sensitive to pain due to racial and implicit bias, therefore Black women are perceived as overstating their pain and as a result, it may take longer for them to get proper diagnosis and treatment.
Endometriosis is a difficult disease to diagnose due to symptoms that can seemingly be caused by other diseases or conditions, like uterine fibroids. Because of this, there is an up to a 10-year delay in diagnosis. Endometriosis can cause a variety of financial and personal burdens. It is one of the leading causes of infertility, and its debilitating symptoms can cause an individual to miss days at work, which could result in a financial toll.
The Alliance for Endometriosis was recently announced. What does this Alliance mean for this patient population? How does it help
address the growing need for care among this population?
Dr Anderson: Establishment of this Alliance is an incredibly valuable resource for patients and clinicians alike. Being able to address the multiple facets of endometriosis in a coordinated fashion will provide medical, surgical, and educational benefits as well as a comprehensive system of resources and support for patients suffering from endometriosis. Increasing the dialog between patients and clinicians will elucidate the multiple facets of endometriosis and the problems faced from it to allow better recognition and understanding of how to care for these patients more effectively and comprehensively.
Ms Ballweg: From my perspective, the Alliance means everything. It means the medical groups, advocacy groups, and industry partners are part of validating that this disease matters and is a medical issue that we need to stop passing off as something that women just have to live with. So from my perspective, and the Association’s perspective, it means everything and we are hoping it leads to fewer dismissals of patients’ burdens or insulting medical encounters where women are not believed, especially if prestigious groups are sending the message that awareness needs to be broadened and the stigma reduced.
Ms Sealey: The formation of the Alliance is quite exciting. With an up to10-year diagnosis delay, there is a significant demand among the endometriosis community to address the needs and concerns of endometriosis patients. This Alliance is the path forward, bringing a new approach to endometriosis care through listening to the patient experience and building educational programs for providers and patients alike in an effort to encourage faster diagnosis and improve treatment options/experiences for patients.
Ms Boyd: The formation of the Alliance means the ability to raise awareness and advocate for policy change as well, so we are excited about it. It is an opportunity for us to actively listen to the endometriosis community’s needs.
Can you talk a little about how this Alliance will impact the future of care? How can health care providers help inform their patients of this Alliance to help get more patients involved?
Dr Anderson: The most important impact that the Alliance will have immediately is bringing together resources from a variety of diverse perspectives (industry, education, clinical support, the patient voice, patient support) to focus on identification and treatment of endometriosis. Patients will play a critical role by describing their journey with endometriosis and elucidating their desires and needs for treatment and support. We as clinicians need to encourage patients to engage with the Alliance to get the help they need but also to improve endometriosis care for generations to come.
Ms Ballweg: I hope that health care providers will refer their patients to the Alliance and our website—perhaps we’ll be able to get their participation during Endometriosis Awareness Month to spread the word.
Ms Sealey: Absolutely. This Alliance is a comprehensive approach to impact the future of care for patients with endometriosis. Understanding and relaying the patient experience to health care providers is a key factor of our educational programs, which will benefit both patients and providers in achieving better health outcomes. The Alliance will also target the research community to drive more research and funding for treatment options and diagnostic tests. Our goal is to increase awareness and reduce stigma. One way health care providers can inform their patients of the Alliance is to encourage them to visit the website where they can learn more and get involved.
How will this Alliance help address the financial and personal burdens of this population? What does the future of care look like for this patient population? How will the use of addressing the population health needs of this community change over time?
Dr Anderson: Addressing the burden of endometriosis will be addressed mostly by increasing early recognition and education on a variety of effective interventions that can be tailored to patients’ symptoms and outcomes desired, whether it is the pain, bleeding, fertility, etc. Thus, the financial and personal burden of the disease can be addressed sooner and more effectively. As awareness of endometriosis increases in the clinical and patient populations, patients will be more likely to seek help earlier, be a more active and informed driver of their health care, and reduce the long-term sequelae of the disease.
Ms Ballweg: In regard to alleviating the financial burden—endometriosis was first named by infertility specialists and their goal was understanding how to help women have a baby, so their focus was never on treating the pain. If the Alliance can help people to get diagnosed early on, they will at least have an accurate disease and won’t be accused of trying to get fertility treatments, resulting in support from insurance companies.
Additionally, the personal burden is very clearly lifted when there is social recognition of the disease. Early diagnosis is crucial in allowing support for the patient to increase, support from the family to increase, and mental health accusations to decrease. Patients need that personal validation that the pain they are experiencing is not normal pain. The Alliance can help us hugely in those areas.
What excites me about the future of care is that as we find better diagnostic tools that don’t require surgery, expenses, and some risk, we will draw other medical specialties into the field and with that will bring different perspectives and perhaps different treatment options that we have not thought of yet.
Ms Sealey: We are hopeful that the Alliance will address the numerous financial and personal burdens associated with endometriosis through educational programs and a true understanding of women’s experiences that will help physicians comprehend the impact this disease has on patients’ lives and foster better conversations between the patient and physician around treatment options. Ultimately, we are hoping this will lead to earlier diagnosis and better treatment options. As a result of the work of this Alliance, the future of care for this patient population is positive! We’re hoping to ensure their pressing health needs diminish over time.
Is there anything else you would like to add?
Dr Anderson: We really need to establish evidence-based medical and surgical treatments for different levels of endometriosis. Furthermore, we need to have a mechanism for training gynecologic surgeons in advanced surgical techniques to treat endometriosis and the sequelae of the disease. Finally, we need to establish a recognition or certification of centers of excellence to identify where patients can be assured that they are getting state-of-the-art evidence-based interventions.
Ms Ballweg: The bottom line is that there are studies which show women’s pain is simply not taken as seriously as men’s pain. We have to look at this as an issue of health disparity for women overall, but especially for women of color and adolescents. Why is it that women’s problems have been relegated to the back shelf? It is very important for women and girls to stand up and say, “Enough.” If we want a healthy population, we are going to have to provide health care starting with young people, especially young women.
Ms Sealey: Women with endometriosis experience real pain, deserve to be heard and believed, and to receive the best possible care. We are excited to work amongst our separate organizations and with doctors for the benefit of the endometriosis community to progress this critically important conversation for women’s health.