Endometriosis and the Affordable Care Act: A Far From Perfect Match

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Writer and tea lover, caught somewhere between Eleven and Diane Nguyen.

March 31st marked the end of endometriosis awareness month, and while some people may never speak of the disease again now that we’ve turned a calendar page, patients living with endometriosis are reminded of it every day, either by their symptoms or the politics surrounding their care. In case you missed the endless infographics circulating around social media all month, endometriosis is a condition that causes a person’s endometrium to grow beyond the uterus and encapsulate other reproductive, and sometimes gastrointestinal organs. Common symptoms include long and excruciating periods, painful penetrative sex, and irregular bleeding. If left untreated, symptoms will continue to escalate and may result in infertility. There is no known cure, so patients spend their lives managing their symptoms with hormones or excision surgery. The reproductive disorder affects roughly 1 in 10 uterus-bearing people, but it takes an average of seven years for most people to obtain an official diagnosis.

Dr. Kristyn Brandi, a family planning specialist with Physicians for Reproductive Health, has treated patients with endometriosis in her years practicing medicine. She described treating the disease as a sort of “trial and error” process and said she’s seen her patients face several barriers—including lack of adequate insurance coverage—that prevent them from accessing certain medications and surgeries that may relieve some of their symptoms. Brandi described birth control methods—namely hormonal contraceptive pills and intrauterine devices (IUDs)—as the “front line treatment” for endometriosis, and described the obstacles endometriosis patients faced before their private insurance was required to cover contraceptives.

“I’d seen several women space out their [birth control] pills to every other day, just so they could have enough to cover them because they couldn’t afford it, and IUDs cost hundreds of dollars out of pocket,” Dr. Brandi explained. “So women would, unfortunately, not seek care or not get treatment just because of a lack of coverage.”

However, Dr. Brandi says after the Affordable Care Act went into effect in 2010, access to birth control has been less of an obstacle for insured patients. The Patient Protection and Affordable Care Act (ACA), often nicknamed Obamacare, is a United States statute that was signed into law by former President Barack Obama in 2010. The law reshaped healthcare and insurance practices, technology, and regulations with the intentions of insuring more Americans and making healthcare more accessible. The ACA mandates that plans in the Health Insurance Marketplace cover FDA-approved birth control methods—such as common endometriosis treatments like oral contraceptives and IUDs—except in cases of certain religious organizations. Previously, insurance providers were not required to cover contraceptives.

In addition to providing access to contraceptives, the ACA removed lifetime and annual spending caps from private insurance policies, meaning endometriosis patients who need several medications or surgeries no longer need to worry about being cut off or denied insurance. The U.S. Congress just decided last month against a vote to repeal the ACA, a decision celebrated as a victory for reproductive health care advocates across the country. But despite this increase in overall access to these frontline treatment options, the ACA leaves endometriosis patients with a far-from-perfect solution to their persistent, challenging symptoms.

“Any second-line treatment such as Lupron, which is an injectable medication, is really expensive and a lot of insurances don’t cover it,” Dr. Brandi explained, noting that infertility treatments are also sometimes difficult for patients to get covered, even after the ACA. “I see patients of lower socioeconomic status, I see a lot of minority patients, patients on Medicaid, and a lot of them don’t have the coverage that they need in order to afford that medication.”

Sarah S. was diagnosed with endometriosis when she was a teenager, and her gynecologist put her on a birth control regimen to try to manage her symptoms. Living in Illinois at age 18, she was taking five birth control pills per day and an anti-depressant and had multiple surgeries with no improvement in her condition.

“I just got to the point where I was really fed up,” Sarah said. “I was told it would be really difficult for me to have kids, I was feeling like there was no light at the end of the tunnel.”

In a last-ditch effort to improve her condition, she started Leuprorelin, or Lupron, an injectable medicine used to treat estrogen-dependent conditions like endometriosis, as well as certain forms of cancer. She said almost instantly, her symptoms were under control. After two years of injections, she manages her remaining symptoms with Ponstel and says she is in much better health.

“It was like night and day,” she said. “I had actually forgotten what it was like before, and I had never been so happy in my life.”

Sarah’s employer-provided insurance covered her Lupron injections, but not all endometriosis patients are so lucky. Latisha is a single mom and full-time student living in North Dakota who started showing symptoms of endometriosis as soon as she hit puberty. She started receiving Lupron shots in 2009 before the ACA was implemented, so her insurance at the time did not cover them. At $100 per injection, she would not have been able to afford the treatment if it weren’t for coupons her doctor found for her. Five years later, at age 32, she would finally need surgery to remove her endometriosis.

“After the Affordable Care Act, I was on insurance and they had to take people with pre-existing conditions, so luckily all my surgeries were covered,” she said, reflecting on her multiple excision surgeries and eventual removal of her uterus and ovaries.

Today, Latisha relies on Medicaid for her health care coverage and pays $110 a month out-of-pocket for an estrogen compound and Progesterone, both of which are not covered under Medicaid. She said that for insurance to work for endometriosis patients, coverage needs to be more adaptable to the customization of treatment. Since every patient’s hormonal makeup and needs will be different, there is no one-size-fits-all treatment, and the most customizable options—like compounds–aren’t covered.

“Instead of just pushing estrogen, they need to look at all women, we’re all different, we all have different levels,” she said. “When I talked to my pharmacist in Dickenson, she said that most insurances just don’t cover compounds.”

Another endometriosis patient, Liz Stern, believes that the best way for insurance to work for endometriosis patients is for the government to stay out of the equation. Although it took Stern decades to seek treatment, she had been on and off birth control to manage her symptoms—even before her official diagnosis. After having emergency surgery to remove two cantaloupe-sized endometriosis growths, Stern says she had an easier time seeking treatment before the ACA. She actually skipped the Lupron treatments that should have followed her surgery because she could not afford insurance after the ACA enactment.  

“All the bills go up, and I’m still making what I was making 10 years ago,” the Nevada resident said. “I think the government needs to get its butt out of it. If health insurance went back to being a free market, they could be competitive and the premiums would go way down. I actually had a chance of having health insurance before the Affordable Care Act.”

Stern emphasized the importance of federally funding Planned Parenthood in a free-market insurance industry. She said Planned Parenthood acted as a supplement to her changing insurance plans, as she knew she could always turn to them for affordable, accessible birth control options to manage her symptoms in the years leading up to her diagnosis and surgery.

On the flip side, Dr. Brandi suggested a solution may be to move more to the left regarding health insurance systems. Although she is unsure of how attainable an improved system is in the current political climate, she recognizes the possibilities that alternative insurance systems hold and remains optimistic that the country will soon be ready to adapt a system that works for all patients.

“Private insurance companies make a lot of errors, and it’s in their best interest to do so because they make money off of people not receiving health care,” she said. “I think having systems like single-payer or having systems where states can compete for prices with insurance companies makes it more affordable. I don’t know if, politically, we’re there yet, but I’m hopeful that we will be.”