Last month, when the Food and Drug Administration stopped using Johnson & Johnson’s Covid-19 vaccine to evaluate the risk of blood clots in women under the age of 50, many researchers noted that blood clots associated with birth control pills were much more common.
The comparison was intended to reassure women about the safety of vaccines. Instead, it has provoked anger in some quarters – not about the break, but about the fact that most contraceptives are hundreds of times more risky, and yet safer alternatives are not in sight.
The blood clots associated with the vaccine were a dangerous type in the brain, while birth control pills increase the chances of a blood clot in the leg or lung – a point that many experts quickly noticed. But the difference made a little difference for some women.
“Where was everyone’s concern about blood clots when we started putting 14-year-old girls on the pill,” a woman wrote on Twitter.
Another said, “If contraception were made for men, it would taste like bacon and be free.”
Some women heard on social media and elsewhere that they should not complain because they had chosen to take contraception, knowing the risks involved. “It just made me double,” said Mia Brett, a legal history expert focusing on race and sexuality at Stony Brook University in New York. “This is such a common response to women’s health care – that we point something out and it’s rejected.”
The torrent of rage online was well-known experts in women’s health. “They should be angry – women’s health just doesn’t get equal attention,” said Dr. Eve Feinberg, a reproductive endocrinologist and infertility specialist at Northwestern University. “There is a huge sex disorder in all medicine.”
Dr. Feinberg and many of the women online acknowledge that birth control pills have given women control over their fertility, and the benefits far outweigh the harm. Rebecca Fishbein, a 31-year-old cultural writer, started tweeting about the inadequacy of birth control pills almost immediately after the announcement of the break.
Still, “contraception is an incredible invention, thank God we have it,” she said last month in an interview. “I’m fighting anyone who tried to take it away.”
Birth control pills have also improved over the years with intrauterine devices and oral options that offer an ultra-low dose of estrogen. “All in all, it’s incredibly safe,” said Dr. Feinberg. “Everything we do has risks.”
But Dr. Feinberg said it was crucial for healthcare providers to discuss the risks with their patients and coach them on worrying symptoms – a conversation that many women said they had never had.
Kelly Tyrrell, a communications officer in Madison, Wis., Was 37 when doctors discovered potentially fatal blood clots in her lungs.
Mrs. Tyrrell is an endurance athlete – tired, strong, and not prone to anxiety. In early 2019, she started waking up with pain in her left calf. After a particularly bad morning, an emergency care visit revealed that she had high blood levels of “D-dimer”, a protein fragment indicating the presence of blood clots.
She had been taking birth control pills for 25 years, but none of the doctors were connected. Instead, they said that given her age, fitness and lack of other risk factors, her symptoms were probably not from blood clots. They sent her home with instructions to stretch her calf muscle.
When she felt a tightness in her chest while running in Hawaii after her grandmother’s funeral, doctors said the cause was probably stress and anxiety. In July 2019, she completed a 100K race in Colorado and assumed that her sore lungs and purple lips were the result of running for 19 hours at high altitude.
But she knew something was seriously wrong on the morning of October 24, 2019, when she became short of breath after going up a short flight of stairs.
This time, after ruling out heart problems, doctors scanned her lungs and discovered several blood clots. One had cut off the blood flow to part of her right lung.
“I immediately broke down in tears,” reminded Mrs. Tyrrell. The doctors put her on a course of blood thinners – and asked her never to touch estrogen again. Mrs. Tyrrell switched to a copper lUD. Over time, she added, the incident had escalated to a sharp rage that was renewed of the Johnson & Johnson News.
“Part of my anger was that a medication I was taking to control my fertility ended up threatening my mortality,” she said. “I’m angry I had not been given better advice on that risk or even what to look for.”
Emily Farris, 36, was prescribed oral contraceptives at the age of 8 to help with migraines. In all the conversations she has had with her many doctors over the years, “blood clots were never raised,” she said in an interview.
On Twitter, some critics pointed out that the efforts with birth control pills clearly describe the risk of blood clots. “My answer is a little disbelief in that,” said Dr. Farris, a politician at Texas Christian University in Fort Worth.
Insertions for most drugs have a long list of possible side effects, which puts “a huge burden on people trying to sort through medical research to sort through what probability and statistics mean,” she said.
Even with a PhD, “I can not assess these risks,” added Dr. Farris. “I think most Americans need someone to translate what the legal kind of pamphlet is, in real terms.”
For Mrs. Tyrrell, this lighting came far too late. Her lungs have not felt the same since her diagnosis, but she can not be sure if it is due to long-term damage from a previous blood clot, new blood clots that she should be worried about or simply her age, she said, adding, “I never think about that again.”