September, 8, 2017
Dear Dr. Zahn,
As the Vice President for Practice Activities for The American College of Obstetricians and Gynecologists, the person who oversees the “development of essential recommendations for best practices and other clinical guidelines for Fellows, such as Practice Bulletins, Committee Opinions, and Task Force Reports,” I am hoping you can help transform the lives of 176 million patients worldwide.
Your Practice Division’s activities are wide-reaching in its goal to provide guidance to obstetrician-gynecologists in order to enhance and improve care for women. You also are in charge of educating “other stakeholders – including health care professionals in other specialties, health insurers, government personnel and policy makers – regarding safe, effective and efficient health care for women.” You lead the way in women’s health. You set the standards that others follow.
I was so encouraged to read that you, a leader in gynecologic care, feel that it is an absolute honor and privilege to be “advancing care of women as well as advocating for patients.” As a patient advocate who works every single day to support and educate patients, I feel that we have many similar goals. I respect and admire that you have committed to putting “[a] new emphasis on patient education, in addition to health care provider awareness” which you felt would “lead to more informed patients” and “enhance their care as well as the physician-patient relationship.” I am hoping that we can work together, as patient advocates, to fix the ongoing crisis in the gynecologic community by providing more awareness and education to both providers and patients.
Endometriosis is a physically and emotionally devastating disease that impacts 1 in 10 women, 5 million total in the United States alone. I recently created a petition to The American College of Obstetricians and Gynecologists to update its standards of care for endometriosis patients, because I wanted you, Dr. Zahn, to be able to see that it is not just one social worker calling for change – it is the entire global patient community. The petition has been shared by many leading non-profits and centers for excellence, including, The Endometriosis Research Center, Endometriosis Australia, the Center for Endometriosis Care, The Endometriosis Association of Iceland, Endometriosis Network Canada, Endometriosis New Zealand, Endometropolis Online Support Group, Endo Warriors, EndoWhat Nurses Initiative, the Fair Treatment for the Women of Wales, the Latina Endometriosis League of America and Nancy's Nook Endometriosis Discussion and Education online group, a leading endometriosis education collaborative between physicians and patients comprised of over 25,000 members. The AAGL, the world’s leading professional minimally invasive gynecologic surgery organization, also supports the petition. The petition has also been endorsed by the International Pelvic Pain Society. Leaders within the community agree that the standards of care for endometriosis patients are insufficient and are causing physical and emotional distress for patients. This is a public health crisis of global proportion.
Despite the prevalence of endometriosis, it can take up to ten years for a patient to get diagnosed. Also, patients can see up to 5 physicians or more before getting a diagnosis. In his March 2017 article, ACOG’s Tom Gellhaus, MD shared that up to “63 percent of general practitioners feel uncomfortable diagnosing and treating patients with endometriosis, and as many as half are unfamiliar with the three main symptoms of the disease.” This delay in diagnosis results in needless suffering for patients. Currently the best educational resources for patients are private Facebook groups runs by patient advocates, sadly, not the patient’s gynecologist. This petition is a call to action for ACOG to use its wide-reaching influences to advocate for the many needs of endometriosis patients. Educating practitioners and supplying them more tools to not only establish a potential diagnosis, but educate their patients on this disease, are ways ACOG can truly enhance and improve healthcare for endometriosis patients.
As you will learn from reading the many stories shared by patients on the petition, the other major obstacle that endometriosis patients face is having access to complete and appropriate surgical care. ACOG does not recognize endometriosis as a complex surgical disease. When reading your “Summary of Recommendations and Conclusions” in the ACOG Practice Bulletin titled, The Management of Endometriosis, excision surgery is only mentioned as best practice in relation to removing endometriomas. It is confusing as to why if excision is recommended on delicate structures such as the ovaries, it is not then best practice to try and excise every bit of the disease throughout the entire pelvis. I understand that your average ob-gyn is not trained to visualize or excise endometriosis in its entirety, including invasive bowel or bladder disease. This task can often be just as difficult as gynecological oncology surgery. Indeed, this supposition was confirmed by Shakeri et al., who concluded that “82% of gynecologists admit to not being able to perform advanced Laparoscopic surgery.” [Shakeri, B., Nadim, B., Reid, S., Condous, G. and Mongelli, M. (2016), EP27.03: Cost-benefit analysis for the utilization of detailed preoperative ultrasound in women with complex endometriosis disease. Ultrasound Obstet Gynecol, 48: 378]
Why, then, is it not recommended for patients to be referred to a specialist who can excise all of the disease? Dr. Zahn, fostering a culture of referral among providers and providing referral guidelines will help both patients and your members. Patients often endure multiple, impartial and ineffective ablation surgeries. Your members could be trained to take extensive pictures during diagnostic laparoscopy and then refer the patient to an endometriosis excision specialist who could fully treat the disease while preserving the patient’s fertility.
ACOG recommends palliative hormone based therapies and ablation - yet admits that there is a significant rate of pain recurrence with both treatments. As the last resort, ACOG states in the Practice Bulletin, “When medical management has failed, undergoing significant surgical management is appropriate in those who do not desire future fertility.” There are no indications of pain recurrence after hysterectomy listed in the Practice Bulletin, but I know from my advocacy work with patients and from listening to experts in the field, a hysterectomy is not a cure for endometriosis and any disease left behind can cause pain.
By ACOG’s current standards, endometriosis patients are to be treated with two options that are associated with significant pain recurrence, and then they are to be given the option of hysterectomy if they are still in pain. Dr. Zahn, I need you to read the patient testimonials on the petition. I need you to understand how these standards are impacting patients. You will read many horrible stories, to include tales of patients who felt the only option left was to have a hysterectomy because that is all they were offered. You will hear about how disease was still left on their bowels, bladder, appendix, pelvic sidewall and other areas after their hysterectomy, and how they still continue to live in a great deal of pain. Many of them lament that if their gynecologist only knew about complete excision and referred them to a specialist sooner, their fertility and their quality of life could have been preserved. If a patient with deep infiltrating endometriosis is on Medicaid and they do not have an excision specialist in their state or one who takes Medicaid, it is almost impossible for them to see a specialist who can fully remove their endometriosis from their entire pelvis. These patients are much more at risk for having a hysterectomy. This is a reproductive justice issue.
Delaying quality surgery for years exposes patients to failed pain control putting them at risk for infertility, opioid dependency, destroyed personal relationships, anxiety and depression. I am not sure how you can read the stories on the petition and not be deeply disturbed by how patients are currently being treated. This certainly does not fulfill your vision of safe, effective and efficient healthcare for women. Patients feel completely powerless. You have the power to update the Practice Bulletin and create postgraduate courses that teach your providers how to recognize the disease, validate patients’ pain, educate patients about the disease and refer them to a specialist. These simple changes would absolutely transform healthcare for endometriosis patients and provide more support to your members.
Leading surgeons in endometriosis care, researchers, non-profits, advocates, mental health workers, pelvic floor therapists and educated patients all agree on the same standards of care that ACOG, the leader in women’s healthcare, has yet to recognize. The result is that many of your 58,000 members on the front lines of this disease are woefully unprepared to deal with the challenges of endometriosis and patients are in physical and emotional crisis as a direct result. With the help of endometriosis thought leaders, ACOG could not only help their own providers, but help gastroenterologists, urologists, emergency room doctors and agencies like Planned Parenthood better serve endometriosis patients. There are so many incredible opportunities for ACOG to lead health care professionals in other specialties, health insurers, government personnel and policy makers to make the changes needed.
Dr. Zahn I am writing to you because I know that you have the power and have expressed the desire to support the role of the patient in women’s health. I simply do not believe that there is nothing else that ACOG can do. I am pleading with you to sit down and work with leading surgeons in endometriosis care, researchers, non-profits, advocates, mental health workers, pelvic floor therapists and educated patients to change the fate of the 176 million women suffering.
Endometriosis patients have spoken. We are not going away. We are motivated to learn more about the obstacles in the way of quality care. At this time, over 6,300 people have signed the petition and are awaiting ACOG’s response. Patients are organizing and resolved to come up with creative ways in which to prove to you just how serious we are. We are in pain and our bodies feel broken, but we will take to the streets in protest if we have to, to get the consideration that this disease deserves to not only save ourselves, but to save future generations of patients.
*The above letter was delivered via email to Dr. Christopher Zahn, Vice President of Practice Activities of the American Congress of Obstetricians and Gynecologists, today, September 8, 2017. The letter will also be printed and combined with the printed list of signatures from the petition and sent through the mail as well. The decision was made to keep practice activities separate from coding issues. A different letter focused on coding will be sent to the ACOG executive who oversees that area of practice. Haywood L. Brown, MD, the current President of ACOG, was also copied on the email to Dr. Kahn.