December 17, 2020
By Julie Gould
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.
Let’s talk a little bit 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?
Ted Anderson, MD, PhD: 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 ObGyns to pursue surgical evaluation before trying several medical options, especially in the younger years when endometriosis is more likely to present. Sort 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 contributions to infertility. In severe cases, other organ systems can be affected 9eg, kinking or blocking the ureters or invading the bowel) causing serious medical problems.
Mary Lou Ballweg: We’ve 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 longstanding myth that it’s normal to have pain particularly with menstruation. Now, science has shown that that isn’t 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 (Endometriosis Association) conducted a study in the past that showed we’re dealing with a societal bias that manifests in families and in the healthcare 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.).
Tammy Boyd: The Black Women’s Health Imperative 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.
Kineta Sealey: Thanks for asking this question. Endometriosis is a painful and debilitating disease. Generally speaking, women’s pain isn’t 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?
Ted Anderson, MD, PhD: 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.
Mary Lou Ballweg: From my perspective, the Alliance means everything – it means that 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’re hoping it leads to less dismissal of patients’ burden 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 needs to be reduced.
Kineta 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 improved treatment options/experiences for patients.
Tammy Boyd: The formation of the Alliance means the ability to raise awareness and advocate for policy change as well, so we’re excited about it! It’s 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?
Ted Anderson, MD, PhD: 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.
Mary Lou Ballweg: I hope that healthcare 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.
Kineta 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 healthcare 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 healthcare 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?
Ted Anderson, MD, PhD: 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 healthcare and reduce the long-term sequelae of the disease.
Mary Lou 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’re experiencing isn’t “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 haven’t thought of yet.
Kineta 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’re 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?
Ted Anderson, MD, PhD: 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 they are getting state-of-the-art evidence-based interventions.
Mary Lou Ballweg: The bottom line is that there are studies that 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’s very important for women and girls themselves to stand up and say “enough.” If we want a healthy population, we’re going to have to have to provide healthcare starting with young people, especially young women.
Kineta 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.
About the Speakers
Ted Anderson, MD, PhD: I have a PhD in Anatomy, completed an internship in Pathology before my residency in ObGyn and a fellowship in reproductive pelvic surgery. I am currently the Vice Chair for Clinical Operations and Division Director for Gynecology at Vanderbilt University Medical Center in Nashville. I am the immediate past President of the American College of Obstetricians and Gynecologists.
Mary Lou Ballweg: I am the President and Executive Director of the Endometriosis Association, an organization I co-founded in 1980 after my own experience with endometriosis. Our goal 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, I have 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. I spearheaded the establishment of the first research registry in the world for endometriosis and have led the endometriosis field in understanding the importance of pain in endometriosis. Our research has been replicated many times and we have 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.
Tammy Boyd: I am the chief policy officer and counsel overseeing policy for the Black Women’s Health Imperative. Prior, I 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.
Kineta Sealey: I am policy counsel for the Black Women’s Health Imperative. I’ve always had a passion for healthcare. After receiving a Bachelor of Science degree in Health Management Sciences, I pursued a career in the pharmaceutical industry where I was 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 I worked collaboratively to address, strategize, and provide recommendations on issues, including those in healthcare. Today, I work to achieve health equity for Black women and girls nationwide.