Erika Langhart

A vibrant, healthy, 20-something-year-old woman isn’t supposed to drop dead of blood clots that choke off the blood supply to her lungs. But that’s what happened to 24-year-old Erika Langhart. Was it because of the controversial NuvaRing birth control she was using?

I recently had dinner with Erika’s mother, Karen, at a conference. Within minutes, I put down my fork, sick at heart to learn how her bright, compassionate daughter, en route to a brilliant future, instead collapsed in her DC apartment. “One of the very first questions the doctor asked us was whether she was on birth control, and if so, what type. As soon as the doctors learned that she was using the NuvaRing, they removed it.”

Erika was in a coma for three hellish days. Finally, doctors told the Langharts their daughter was irreversibly brain dead. Brokenhearted, they agreed to remove life support. It was Thanksgiving Day, 2011. The Langharts donated Erika’s organs. All but her lungs, which were choked with blood clots.

Erika’s Parents

“When I see young women out on the street, I want to run up and shake them and say, ‘Do you use the NuvaRing for birth control? Do your friends? Please stop using it. It can kill you.’” Langhart’s website offers the stories of some of these women. She’s since taken her battle for better warnings to Congress and the FDA.

An article in the January 2014 issue of Vanity Fair magazine looks into the potential dangers of newer hormonal birth control pills. “Newer” means “came on the market since the ’90s.” The popular NuvaRing, a convenient, insertable ring a woman changes monthly, while used by millions of women without adverse effect, is associated with a higher risk of life-threatening cardiovascular problems. Merck, which makes the NuvaRing, says it has complied with all FDA directives, and that “there is substantial evidence to support the safety profile and efficacy of NuvaRing.” The company has offered $100 million to settle a class action suit brought by nearly 4,000 plaintiffs. (Minus legal fees, that’s about $16,000 per plaintiff.) The Langharts won’t settle.

NuvaRing Warning

Consumerist.com offers some take-aways from this article, below. As for warning labels, according to the nonprofit Institute for Safe Medication Practices, an estimated three out of four patients throw out the medication leaflet stapled to the prescription bag without reading it. Even if they do read it, what healthy, non-smoking 24-year-old would see herself in the warning on the right?

More effective communication from our trusted physicians and pharmacists and better warning labels would help. But I for one am not waiting for Merck and the FDA to address questions hours of research couldn’t answer. Like whether extreme temperatures (a prescription left in a hot car while you run errands?) can cause the ring to release a spike in estrogen levels. I left my dinner with Karen Langhart, Googled “NuvaRing blood clots”, and told my 20-something daughters to stay away from the NuvaRing. There are other choices out there…why risk it?

Which brings us to RATT, which stands for Read for yourself, and Tell Two people. (Or, #RATT on Twitter–Read & Tweet Twice.) Please RATT, RATT, RATT this information, in person or on-line, so you’ll never have to tell a bereft parent “Oh I’m so sorry, I heard about that a while ago but never thought…” Here’s a suggested Tweet:

Is your daughter’s birth control a ticking time bomb? READ, and TELL TWO People #RATT http://patientvoiceinstitute.org/2015/01/862/

The Patient Voice Institute is working to ensure all patients—and those who love them– will have open and available access to what other families have learned. We understand no medical intervention comes without risks. But we should be making these choices fully informed. Anything less is unconscionable. And for the Karen Langharts of the world, unbearable.

Highlights of the Vanity Fair Article from Consumerist.com:

• NuvaRing was developed in the ’90s by Organon, a Dutch drug company. It hit the U.S. market in 2002. Schering-Plough bought Organon in 2007, and Merck in turn acquired Schering-Plough in 2009.
• Study results vary, but the Food and Drug Administration says that women using contraceptive rings are 56% more likely than women using a different hormonal contraceptive to suffer a venous thromboembolism (VTE), a life-threatening blood clot. A study in the British Medical Journal found that women using rings were 90% more likely to have a VTE than women using other forms of birth control.
• This significant increased risk doesn’t really come up during the office visit when women get a prescription for NuvaRing or a free sample. Vanity Fair’s reporter sent two young women out to a college clinic and to Planned Parenthood to seek rings. Neither health care provider mentioned the increased VTE risk [even when the patient described a family history of blood clots]. The relative risk is low, but women still should know about the symptoms.
• The real danger of delivery systems like patches and pills is that they may deliver hormone spikes. Organon found evidence of this in its initial studies before launching NuvaRing.
• The article takes us to visit a New York law firm that’s working on multi-state litigation against drug companies over VTEs caused by third- and fourth-generation birth control. The attorney leading the charge against Merck learned something important from his work, and called his daughters with a succinct warning. “Do not ever use any third- or fourth-generation birth control,” he tells Vanity Fair that he told them. “It could kill you.”
• According to internal e-mails, Schering-Plough drug reps were instructed to minimize the risks of NuvaRing compared to other birth control when discussing the product with doctors. Marketing provided them with handy scripts to steer the conversation and compare the product favorably to competitors like the Ortho-Evra patch.
• One tiny early trial of NuvaRing showed huge, dangerous spikes in test subjects’ estrogen levels. This trial wasn’t part of Organon’s original application to the FDA.