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Period pain can be treated with continuous birth control.
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Period pain can be treated with continuous birth control.
BUREAUCRATIC NIGHTMARE

Period pain can be treated. But US regulators won’t follow doctors’ orders

Olivia Goldhill
By Olivia Goldhill

Science reporter

There’s no medical reason anyone needs to have their period every month, and many reasons why it can be best to avoid monthly bleeding. And yet patients in the US who are advised to take hormonal birth control pills continuously, which would enable them to skip their periods, are frequently denied insurance coverage when it’s time to get their medication.

This monthly agony reflects the US Food and Drug Administration’s medically inexplicable decision to recognize hormonal birth control as a contraceptive, but not for its medical uses. FDA guidance is to take “a pill every day” when using oral birth control; but this dosage includes the seven placebo pills that come in every pack of 28 pills. The pill is effective as a contraceptive if it’s taken 21 days out of 28, and the packets were designed to include seven placebo pills so that women could still get their periods as part of an attempt to make oral contraception palatable to the Catholic church. However, birth control must be taken continually, with no placebo pills, to be effective treatment for endometriosis or dysmenorrhea, which cause debilitating side effects alongside periods.

As FDA does not have clear guidance on taking birth control without any placebo pills, insurance companies are not required to provide that course of medication. And so those who need to take the medication have to pay out of pocket to get it on time; despite the fact that birth control is supposed to be fully covered by insurance in the US. The policy is also out of line with the medical community’s stance that there are no health risks from taking birth control continually. Indeed, in the UK, the National Health Service recently updated its guidelines, advising that all those who menstruate can take birth control continuously without the placebo pills. (British women were previously easily able to access 28 days worth of birth control medication if they chose, but this ruling means that it will be offered as the norm.)

This is not a niche medical issue. Around 10% of ovulating women in the US have endometriosis (when tissue similar to that which lines the uterus grows on other areas, often within the pelvic region), 20% have dysmenorrhea (the clinical term for intense period pain), and 10% have polycystic ovary syndrome (a hormonal disorder that causes enlarged ovaries with small cysts). Patients with these conditions are often medically advised to take birth control continuously, as monthly bleeding can cause serious symptom flare ups. “These three conditions are extremely common,” says Richard Legro, chair of the department of obstetrics and gynecology at Penn State Medical Center and College of Medicine. “Taken together, nearly every woman will experience one at least some point in their life.”

The pain that can accompany these conditions is immense, and can be almost as bad as a heart attack. Women, non-binary people, and trans men who suffer can experience debilitating headaches, vomiting, and stomach cramps that leave them on the floor, unable to move, every month. Cynthia Chuang, a professor at the Pennsylvania State University College of Medicine, who specializes in women’s and reproductive health, notes that chronic pain conditions can also flare up during periods, even if the reasons for this connection aren’t well understood.

Chuang says that insurance companies do, on occasion, recognize prescriptions she writes for patients to take birth control continually, but they are not required to do so by the FDA, and they’re just as likely to refuse. “There doesn’t seem to be an obvious rule. It’s often a little hit or miss,” she says.

In a statement to Quartz, the FDA noted that they can only approve a drug if a commercial sponsor or drug manufacturer applies to the agency for approval of the use of a drug for a particular treatment. “For example, if a sponsor wishes to obtain approval of their product to treat endometriosis or other conditions, the sponsor would need to provide FDA with data showing that their product has substantial evidence of effectiveness for this use and show that those benefits outweigh the risks,” said an FDA spokesperson. Unfortunately, most sponsors apply for agency recognition because there’s the promise of financial benefits from an FDA-approved drug; in this case, though there are medical benefits to birth control being used to treat endometriosis, no company could stand to benefit from sales of the drug for this use. “Health care providers generally may choose to prescribe an FDA-approved drug for an unapproved use or in a way that differs from the FDA-approved label when they determine that such use is medically appropriate for an individual patient,” added the FDA spokesperson, it’s just that this medical use wouldn’t be recognized by the agency. And so, when doctors prescribe birth control to treat endometriosis, this is considered “off-label use.”

The FDA has approved a birth control pill called “continuous use,” which is designed to be taken without break for three months at a time, and so comes in a packet with 12 weeks worth of medication, plus one week of placebo pills; but, as patients can’t get a new packet until the placebo pill has run out, this doesn’t really solve the problem long term. Patients still often have to pay out of pocket for extra pill packets.  Many simply give up when the pharmacy refuses their medication, says Chuang, and so she only learns that a patient’s condition has been left untreated when she sees them a year later at an annual check up. Legro says there’s growing acceptance that many people should take the pill continually—“more people are using it, pharmacies are getting more used to it”—but patients are still denied their medication far too often.

This is an experience I’m unfortunately all too familiar with. I have endometriosis which, when untreated, left me in debilitating pain (periods felt like a rusty metal pole being stabbed through the center of my body), as well as severe muscle spasms that twisted my spine and compressed my sciatic nerve. These muscle spasms cause serious physical effects: As someone who’s had three spinal surgeries, the intense pressure on my spine causes serious risks. And yet, every month, I found myself begging my pharmacist to call the insurance company so I could get my birth control prescription refilled early—I needed medication for 28 days, not 21. Sometimes the insurance companies agreed, after a debate, sometimes they refused and I had to pay out of pocket.

Suffering from what is an overwhelmingly women’s health condition can feel like you’re in an illogical dystopian world where medical professionals and health advisors are utterly ignorant and you have to fight, continually, for the knowledge and treatment that you deserve. In reporting this article, I spoke to one professor who researches women’s health care, but didn’t know that there were health conditions where women are medically advised not to take the placebo pills in birth control packets. Such extremely basic information simply isn’t discussed widely enough; there aren’t enough conversations about periods and women’s health and available treatment methods. “I don’t know why this hasn’t been more of an issue,” Chuang says.

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