Just over three years ago, I was diagnosed with endometriosis, which occurs when tissue similar to the endometrial lining of the uterus grows elsewhere in the body. My diagnosis came after almost a decade of mystery pains and dead-end tests. It has been an excruciating and devastating road. Still, I consider myself lucky. Thanks to support from my family, I have been able to travel to see one of the best specialists in the country, and to afford his care. I have been able to take the time I needed to recover, including undergoing physical and psychological therapy.

But this disease affects roughly 10 percent of people who have or have had a uterus. What does it say that the majority of them may not have the same privilege to access proper care? Why is the quality of life for patients with such a common disease dictated by their financial resources? The fact remains that such a prevalent disease is still a relatively small issue in our politics and society at large—which means patients are often left behind.

Many, if not most, endometriosis patients are initially given the option of ablation or cauterization—which involves burning off the lesions caused by the disease along with hormone suppressors. But experts say excision surgery, which removes the disease by cutting out the tissue entirely, is typically the most effective option.

“Excision is the only thing that works for the largest majority of patients,” said Nancy Petersen, a retired nurse who worked alongside Dr. David Redwine, the doctor who pioneered the procedure.

Excision, however, is also one of the most expensive options, making it inaccessible for many patients. As opposed to ablation or cauterization, Petersen told Rewire.News, excision “needs to be done by experts.” With only a small number of surgeons in the world equipped to properly excise endometriosis, patients must often travel anywhere from a few hours to across the country to access care. A massive demand for a procedure that relatively few doctors can effectively do means many patients experience wait times to get appointments and see doctors—a significant barrier for a disease that is progressive and often unrelentingly painful. And for endometriosis patients, that wait time is often spent saving money for a surgery that can cost upwards of ten thousand dollars out of pocket, thanks to ineffective insurance coverage.

Heather Guidone, the surgical program director at the Center for Endometriosis Care (CEC), says it wasn’t until her own excision surgery—which came after some 20 prior surgeries—that she saw her quality of life improve. CEC, which was founded more than 25 years ago, remains one of the top practices for endometriosis patients in the world. It specializes in excision surgery, and patients routinely travel significant distances to receive care from one of the doctors who practice there.

But many in the wider medical industry, Petersen said, are often “oblivious to the impact on patients and their families, and in fact minimizes the pain and disability that this disease causes.”

“I believe they minimize it because they do not believe their patients and because they do not have the skill to effectively manage this disease,” she continued.

The endometriosis advocacy organization Endo What? is working to change that with a number of efforts.

Casey Berna is a patient’s advocate and the director of programs and partnerships for Endo What? Among other campaigns, Berna aims to raise awareness for excision surgery by targeting one prominent organization with a massive say in the matter: the American College of Obstetricians and Gynecologists (ACOG).

According to Berna, the ACOG standards regarding ablation and excision surgery fail to adequately convey the distinction between the two. She claims that ACOG has told experts and patient advocates—herself included—that there is not enough data to support excision over ablation. She says the ACOG guidelines direct providers to provide patients with palliative hormonal medications, “repeat, ineffectual surgeries,” and ultimately, hysterectomies. Beyond the inefficacy of ablation surgery, some experts believe endometriosis produces its own estrogen, and can continue to survive and grow in a body with hormone suppression even after the uterus has been removed.

What results, she says, is a “lifetime of loss and suffering for so many endometriosis patients.”

Dr. Hal C. Lawrence, ACOG executive vice president, told Rewire.News in a statement that the ACOG is aware of the “sensitivities and concerns surrounding timely and affordable diagnosis and treatment of endometriosis.”

“It’s our aim that diagnosis of endometriosis and care are both evidence based and patient centered,” Lawrence continued.

According to Lawrence, ACOG is in the process of reviewing its practice bulletin for endometriosis, and this review will consider research on the efficacy of ablation and excision.

Berna says that if ACOG were to recognize excision surgery and the multidisciplinary care required to treat endometriosis, it would be better positioned to compel insurance companies to adequately cover such care. While a number of factors affect insurance coverage for a particular procedure or condition, Berna says proper ACOG recognition of excision surgery is key.

As it stands, the industry “failure to recognize the vast difference between these two surgical techniques means that insurance companies pay the same amount to doctors who perform a 45-minute ablation on patients as they would to a specialist who spends 4-6 hours meticulously removing endometriosis,” Berna said. This means that the doctors who do perform excision surgery are woefully under-reimbursed; they are essentially paid by the insurance companies the same way other doctors who perform much quicker and less skilled procedures. And without any distinction in the eyes of insurers, other doctors have no financial incentive to learn the technique when a quicker, easier procedure is accepted as a standard of practice.

Berna explains that another consequence of the way insurers cover excision surgery is that many expert providers practice out-of-network because they are inadequately compensated for their work—and the few who take insurance are often confined to their state. For patients with limited insurance, traveling for a procedure may not be feasible, and even for those who manage to afford the surgery can struggle to cover the costs of travel and accommodations for themselves and their families or caretakers. For patients with endometriosis on their lungs, diaphragm, or other areas that require complex care, Berna says surgeons are in even higher demand. Beyond that, endometriosis patients require multidisciplinary care to properly recover, including pelvic floor therapy and mental health support—treatment where insurance barriers also exist.

Berna says that while some patients have had success getting their excision surgery covered through their provider, that requires what she calls a “grueling” appeals process.

Lawrence notes that the process to update coding for insurance coverage is led by the AMA CPT Editorial Panel, which has a standard of set requirements; it is not directed by ACOG. He says that surgeons promoting excision for endometriosis have simply not met the requisite standard for updating the coding.

But Berna, who prepared a bulletin of research on excision surgery with CEC’s Guidone, notes the import and power of ACOG standards among practitioners and patients. She hopes that in light of the available studies, ACOG will advocate for the revision of what she calls “outdated codes in relation to gynecological procedures” where endometriosis is concerned, as she says it has done in the past.

Meanwhile, new “treatments” are coming to market with the promise or possibility of insurance coverage, despite advocates’ continued insistence that surgery is the gold standard and that hormone treatments can be especially ineffective and even harmful for endometriosis patients. A new AbbVie drug called Elagolix, for example, promises to treat endometriosis; it was met with significant pushback from advocates, including Endo What? AbbVie also manufactures Lupron, a controversial drug often prescribed for endometriosis by physicians who do not practice excision.

In my case, I underwent one ineffective 45-minute ablation surgery and subsequent hormone treatments at a big hospital in Boston, all of which were covered by insurance. When that didn’t work, I turned to a specialist, whom I found through “Nancy’s Nook,” an online community of endometriosis patients, doctors, and advocates, overseen by Nancy Petersen. I then underwent two hours-long excision surgeries. While my care in the hospital—including my nurses, an overnight stay, and my pre- and post-operative care—was covered by insurance, the doctor’s fees were not, as he operates out of network. This meant that while the bulk of my surgery’s cost was covered, thousands of dollars still had to be paid out-of-pocket.

Guidone, who has worked at the CEC for 15 years, says the struggle is not new.

“Sadly, many are still walking a similar path today, three decades after me, for many of the same reasons,” she said. “They are still being pushed off on to ‘new’ drugs that do little more than their predecessors and bring a host of side effects. They are still being told pregnancy, hysterectomy, or menopause will cure them. They are still being told all doctors treat the disease the same way, and that all treatments are equivalent.”

And, of course, the significant barriers to care some patients face are only further exacerbated by the nature of the disease and the havoc it wreaks on every aspect of a patient’s life.

“The more pain a patient is in, the more it impacts their quality of life.  Some patients who are in pain struggle to find or maintain employment. Without employment, many patients do not have access to health care. It is a difficult cycle which can often lead patients to despair,” Berna said.

Guidone, Berna, and Petersen are also working with Shannon Cohn, the co-founder of Endo What?, to take this fight to Capitol Hill. In June, the organization announced it would be partnering with Sens. Orrin Hatch (R-UT) and Elizabeth Warren (D-MA) on a new “groundbreaking, bi-partisan initiative to create widespread awareness & meaningful change for the millions of people living with #endometriosis.”

Cohn, who describes endometriosis as “the most common, devastating disease that most people have never heard of,” told Rewire.News the initiative has allowed her and her team to work closely with senators on the Hill to do the crucial work of spreading awareness. They are also working toward tangible goals, including obtaining federal funding for endometriosis beyond NIH. For instance, endometriosis research has been included for the first time in the Department of Defense’s (DoD) Congressionally Directed Medical Research Programs in the fiscal year of 2018.

Berna and Cohn hope the funding will be used, in part, to build a body of studies to impress upon policy-makers, including those at ACOG, the benefits of excision surgery and multi-disciplinary care.

Guidone will serve as an advisor on Endo What?’s new initiative. She says it is a shining example of what happens when those with patients’ best interests at heart—often the patients themselves—are at the forefront of organizing and moving toward a greater good for the endometriosis community.

In a nod to “marginalized communities who step up and demand to be counted,” Guidone outlined the overarching theme of the campaign: “Nothing about us, without us.”