The Inconvenient Truth Regarding Endometriosis Advocacy

Women's Health Facts

  •          “Big Pharma” is a term used to describe large companies that make money selling pharmaceutical drugs to patients. 
  •          Medical organizations like the American College of Obstetricians and Gynecologists “ACOG” and the American Society of Reproductive Medicine “ASRM” represent thousands of medical providers that treat patients.
  •         Medical organizations publish practice bulletins based on peer-reviewed science based-evidence and expert opinion. These bulletins summarize current information and provide definitions of and policies regarding medical conditions. These bulletins provide the techniques and clinical management issues that guide the treatments that patients will receive from providers.        
  •          Big Pharma companies finance research which provides a portion of the science based-evidence used in these bulletins.  
  •          Big Pharma companies donate generously to, sponsor, as well as financially support, medical organizations such as ACOG, ASRM, and their providers. (https://www.abbvie.com/content/dam/abbvie-dotcom/uploads/PDFs/2016-AbbVie-Grants-and-Contributions-Report.pdf )
  •         Big Pharma companies and medical organizations donate generously to, as well as financially support, and sometimes even lobby for endometriosis, infertility and other various women’s health and reproductive justice non-profit organizations.  

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For many women’s health issues, there exists a symbiotic relationship between Big Pharma, the medical organizations, the non-profits in the women’s health communities, and the patients that are being served. For instance, Big Pharma, the ACOG, non-profits, and patients all agree that birth control should be legal, affordable, and accessible to all who need it. All parties benefit from this advocacy alignment. Patients who need birth control have access to it, providers and medical organizations have access to more research and treatment options for the services they profit from and Big Pharma makes billions. Non-profit organizations benefit when their community has what it needs and their donors are able to continue to support their efforts.  

A similar alignment appears in the infertility advocacy world. Big Pharma, ASRM, and its members have been very supportive and generous to organizations that help the infertility community. Infertility patients often need access to reproductive endocrinologists and fertility medications to build their families. Doctors and drug companies profit from patients in need.

These are not unique areas of care. Right to abortion, maternal health, PPD awareness and intervention are among some of the many issues that Big Pharma, medical organizations, and non-profits work together to create solutions for in order to respond to the needs of vulnerable patients. 

Real harm arises, however, when you have a vulnerable patient population whose needs do not benefit Big Pharma or the majority of the providers in a medical organization. The harm comes when these medical organizations fail to make policies that will benefit patients, because it will not benefit them. 

Endometriosis is a disease that impacts more than 5 million women in the United States alone. 1 in 10 women have endometriosis. Patients can suffer symptoms of this pervasive, painful disease for the majority of their lives. While endometriosis is often linked to a patient's menstrual cycle, some patients can experience symptoms before they get their period and others experience continued pain even after menopause.  There is no cure. There is a 8-11 year delay in diagnosis . During the 8-11 years, on average that they suffer while awaiting a diagnosis, patients report being dismissed, demeaned, rejected, ignored and misdiagnosed all while struggling with the physical symptoms of endometriosis and the uncertainty of what is happening . The results can be devastating. Many patients arrive at a final diagnosis having suffered devastating losses to their fertility, careers, personal relationships, self-worth, and their hope.

When providers suspect that a patient may have endometriosis, the ACOG practice bulletin currently gives the following directives to treat patients:

 

 

Recently, the endometriosis patient community, backed by professional organizations such as the AAGL, petitioned the ACOG to change their practice standards and use all of their available organizational resources to educate their providers and patients. The patient community has asked the ACOG to make robust efforts in shortening the diagnostic delay by teaching their members how to screen patients for endometriosis symptoms and asking about family history of endometriosis or painful periods like they have done successfully for other illnesses. Patients are also asking that the ACOG teach their members to refer endometriosis patients out to surgical specialists who are properly trained to remove this invasive, complex disease like they do for other complex diseases . (see also: https://www.sgo.org/wp-content/uploads/2012/09/Referral-Guide_when-to-refer-a-Gyn-Onc.pdf ) 

Sadly, our call to action was met with a lack of action. The ACOG was presented an entirely rewritten practice bulletin for endometriosis, reviewed by specialists in the field and built on solid, clinically-evidenced studies. While we were told the revisions, the patient testimonials, expert opinions and the folders of science-based evidence would be "passed along" to the bulletin review committee, we were also told that patient advocates and endometriosis experts will have no part in the review process and can check their website for updates. 

Experts who treat endometriosis and patient advocates agree that early diagnosis and referral to an expert surgical excision specialist, with the support of a multi-disciplinary care team, can not only help save a patients’ fertility, but it can truly save her from decades of suffering. On the petition, patient after patient testifies how their lives have been irrevocably damaged. Patients talk about how practitioners placed them on hormone after hormone for years without investigating the cause for pain.  Patients talk about enduring multiple, ineffective and partial surgeries. Patients talk about undergoing a hysterectomy only to find a specialist who could have preserved their fertility.  Patients, backed by experts in the disease, have urged ACOG to make immediate changes. Hormone medication merry-go-round, repeat, partial surgeries and hysterectomies; who are the real beneficiaries of the ACOG Practice Bulletin if not patients?

It’s not only ob-gyn’s who are missing the mark, but reproductive endocrinologists and the ASRM should be doing more to help endometriosis patients. It is estimated that 40% of women with infertility have endometriosisSeeing as 20-25% of endometriosis patients could be asymptomatic, it is possible that some patients with unexplained infertility could have endometriosis making it more than 40% of women with infertility. Many infertility patients who present with endometriomas are likely to have deep, advanced, fibrotic disease throughout their pelvis, including on their bowels. Are doctors telling patients that? Or are patients being given a quick diagnostic laparoscopic procedure, leaving the majority of the disease inside their pelvis, and then given fertility treatments? How many patients are getting referred to the quality surgical and multi-disciplinary care they need?

While there are studies that show that endometriosis patients can have successful IVF’s without surgery, are doctors educating patients on the true meaning of endometriosis and giving them the tools they need to navigate the rest of their life with a chronic illness? If patients are able to get pregnant and have a baby, does it make not educating them or treating their disease okay? What about patients who cannot get pregnant or are done with fertility treatments? Are these patients being referred to specialists and multi-disciplinary care providers?  More research needs to be done to answer these vital questions to see if the vital needs of endometriosis patients are being met. 

Who is solely looking out for the health needs of the endometriosis patient? Should organizations made up of doctors who are financially benefiting from certain practice policies be the only ones making those policies? Is it ethical for medical organizations to take money from Big Pharma? How do patients know if their doctors are recommending certain treatments because of their financial ties to Big Pharma? Should research funded by Big Pharma be allowed to be included in Practice Bulletins when these companies will benefit financially from policies that encourage certain courses of treatment? While all organizations, including the ACOG, have codes on ethics, in the case of endometriosis treatment, things do not seem so clear.

Standing up to Big Pharma and powerful, political medical organizations like the ACOG and the ASRM isn’t an easy task for the healthiest of people, but it can be especially difficult for endometriosis patients. Endometriosis patients live in chronic pain. Endometriosis patients don’t have access to affordable, appropriate medical care. On top of endometriosis, many patients also struggle with other co-current diseases, including the financial, emotional and physical hardships of infertility.  Major endometriosis non-profits, fertility non-profits and advocates, non-profits dedicated to sexual health care and reproductive justice, other medical organizations like the AMA or the ACS, women’s health law advocates, celebrities or people in places of power or influence should be the ones stepping up and working with endometriosis patient advocates to help revolutionize care and offer protection.  Unfortunately, with a few exceptions, many of these entities are working with and being funded by the medical organizations and Big Pharma.  

Recently, I read a great quote that said, “The opposite of brave isn’t scared. The opposite of brave is quiet.” Is the silence throughout the adjoining women’s health communities regarding the injustices in endometriosis care thoughtless or calculated? It is nicer to think that the absolute silence of these organizations is due to a lack of awareness regarding just how serious the problem is. But the truth is that Big Pharma and medical organizations such as the ACOG and the ASRM donate a lot of money and resources to patient health and advocacy groups.  The urgent crisis that the endometriosis patient community faces continues to be ignored.  

In recent history, we have seen the patriarchal abuses of power start to crumble and women’s voices are being heard more and more.   Change only happens when everyone is willing to stand up to those in power and lend their voice to those who are vulnerable, oppressed and in need. The endometriosis community is in need. We are calling upon patient organizations and advocates that have the mission and resources to protect our livelihoods and our fertility, to stand with us and change these policies that have been causing endometriosis patients so much needless suffering.  The fates and the fertility of millions of patients are in your hands.

What does it mean to stand with Endometriosis Patients?

  •  If you are an endometriosis non-profit, standing with endometriosis patients means that if you or any of your employees or board members take money from the acog or big pharma you do so transparently and honestly share it's possible impact on mission. 
  • If you are an infertility advocate or organization you recognize that at least 40% (or likely more) of those you serve have endometriosis.  You include endometriosis patients and specialists on your boards and make sure 40% of your community is represented in positions of influence in your organization giving a patient voice in organizational programs and initiatives.  You challenge the medical organizations and providers you work with to support policies that would refer patients in need to specialists and multi-disciplinary care providers sooner. You think about endometriosis and include patients on egg freezing initiatives which could help spare their fertility from a disease that has the potential to eat away at their reproductive parts, including the ovaries. 
  • If you are a women's health and reproductive justice organization like Planned Parenthood, you create opportunities to work with endometriosis patient advocates to change internal practices and policies that can help patients attain an earlier suspected diagnosis and greater support.  You also are transparent about your relationships with medical organizations like the acog and use your voice and influence to help pressure them to make the sexual health and wellness for millions of endometriosis patients a priority.  
  • If you are a celebrity with endometriosis or a person with financial and/or political power lend your power and influence to help patients challenge those in power to change harmful policy instead of working for them. You also choose not to be used as a prop for the women's health organizations that are obstructing care to patients or remaining silent.

The endometriosis community is more organized and more educated than ever. Patients are learning to look up their providers and their associations and see if they have links to Big Pharma. Patients are starting to look at major non-profits in the community and see who is willing to fight those in power for needed change and question those who are remaining silent. We are living in a time where our voices and experiences matter more than ever.