Woman With Severe Chronic Pain Was Denied Medication for Being ‘Childbearing Age’

https://jezebel.com/woman-with-severe-chronic-pain-was-denied-medication-fo-1849569187

The woman, Tara Rule, told Jezebel she’s being blacklisted by local hospitals for sharing her story.

A New York woman says she was denied highly effective medication for a chronic, painful condition that’s caused her to contemplate suicide because her neurologist told her she could become pregnant, and the medication might cause birth defects—even though she never plans on having children. In a series of TikTok videos, Tara Rule (@pogsyy) included audio, in which the doctor explains to her that despite the facts that she uses protection, her partner would be willing to get a vasectomy, and she would have to get an abortion anyway (her hypothetical pregnancies would be high-risk), the risks to her hypothetical fetus trump her debilitating pain.

In the audio in one video, Rule asks if the issue preventing her from getting medication is solely that she’s of “childbearing age,” and, “if I were like through menopause, would this be effective for cluster headaches?” When the doctor says “yes,” Rule asks, “So the only thing that’s kind of stopping this is the fact that at some point in my life, I could get pregnant?” In response, the doctor changes the subject and asks, “How’s your sleep?”

Since sharing her story along with the recorded audio on Wednesday, Rule posted a TikTok in which she alleges that Glens Falls Hospital, where the incident happened, warned all hospitals in Albany County that Rule had livestreamed her visit (which she denies). This prompted doctors, who confronted her during a later visit to Malta Med Emergent Care, to “berate” and “threaten [her] with legal action.” Rule includes audio of some of this conversation in the video. On its website, Glens Falls Hospital doesn’t appear to have any policy against recording oneself in the hospital.

The threat of legal action, of course, is on top of the fact that Rule still can’t get medication to effectively manage her debilitating chronic pain. “It was frustrating to be in so much pain and just hear ‘no,’ for that hypothetical reason,” Rule told Jezebel in a phone interview, adding that she’s “pretty sure I can’t even get pregnant” because of several “reproductive issues” she’s had. “It’s already hard enough to deal with this condition. It’s already so misunderstood, it took me 10 years to even get a diagnosis, because it’s a very rare condition and the symptoms are all over the place,” she said.

In her first TikTok last week, through tears, Rule explained that she suffers from painful, chronic cluster headaches and Ehlers-Danlos syndrome—which, she told Jezebel, causes several excruciating comorbidities. Despite the severity and life-threatening risk factors accompanying her condition, Rule told me that doctors who confronted her at her Wednesday visit to Malta Med Emergent Care warned her that she was on a “tracker” and is essentially blacklisted from hospitals in Albany County for the alleged “livestreaming.” Rule has filed a complaint to Glens Falls Hospital and received confirmation that it’s being processed, but it could be up to 45 days before she receives any update.

Jezebel reached out to Glens Falls and Malta Med Emergent Care for comment about Rule’s allegations and will update this story if we hear back. New York is a one-party consent state, meaning only one party must consent to the recording of an in-person or telephone conversation.

Since the overturning of Roe v. Wade, we’ve seen horrifying ripple effects like what Rule says she experienced across the health system. As Jezebel has previously reported, several people say they’ve been denied life-saving medications from pharmacists, because these medications could supposedly double as miscarriage-inducing abortifacients. Rule told Jezebel that since she shared her story, numerous people have reached out to her about issues they faced getting medications due to pregnancy-related concerns, even before the overturning of Roe. Just last summer, a pregnant woman in Alabama was arrested and prosecuted for trying to pick up pain medications to manage a chronic back condition.

While Rule said the Glens Falls neurologist she consulted repeatedly cited the overturning of Roe for why he couldn’t prescribe her the medication, she believes it’s more likely he was pushing his “personal agenda.”

Our health system has prioritized fetuses and even hypothetical fetuses over women and pregnant people’s health and safety in plenty of documented cases, and the rise of anti-abortion fetal personhood laws post-Roe could worsen all of this.

On her TikTok, Rule details the most eyebrow-raising parts of her conversation with the Glens Falls Hospital neurologist: “I said, ‘Well, I’m not having kids, I wouldn’t do that to someone, it’s not a life. I’m in pain every single day.’ He said, as long as I am of childbearing age, regardless of birth control method, I can’t take the treatment because there’s a possibility I could get pregnant.”

In another video that includes audio of the visit, we hear the doctor ask: “So you’re not having intercourse?” When Rule clarifies that she is, he responds: “Well, you could get pregnant. The point is, if you get pregnant, what are you gonna do? You can’t deny the fact that you could get pregnant, ‘even if I’m not planning on it, the risk is low, this is my plan of action.’” Further, he added that for any treatment Rule is considering that could affect potential pregnancies, if she’s “with a steady person, you’d have to bring him in as well.” Prior to when Rule started recording, she says the doctor told her she could also experience unplanned pregnancy from rape—a comment that was “retraumatizing” for her as a survivor of sexual violence. Most state abortion bans that passed since the fall of Roe lack rape exceptions.

In a later video last Monday, Rule revealed the identity of her neurologist and pointed to a number of reviews from women accusing him of sexism and making them cry. In the video, Rule explained that she decided to identify him out of concern for other patients, explaining that his actions—for example, prescribing her an alternative, high-risk medication, solely because it wouldn’t cause birth defects to a hypothetical fetus—could “kill someone.”

Rule has since started a petition demanding policy change to prevent doctors from denying treatments to patients who are women or people with uteruses and of “childbearing age.”

“I think doctors often, in my experience, bank on the fact that people don’t know their patients’ rights,” Rule said. “We need policy change to reprimand any physician or insurance company that chooses to prioritize a hypothetical life that does not exist over the wellbeing of a suffering human being who actually exists.”

Filed under: General Problems