The conversation we should be having about blood clots

Rachel Pinker was a healthy, happy, 33-year-old in the prime of her life. She had two beautiful daughters and a loving husband – a close-knit unit of four. She made balancing young children and a high-flying job look easy. Outdoorsy, she walked an hour to work every day, loved swimming in Brighton’s icy waters, and wrangled life-long Londoner, Helen, into buying a tent and joining the family’s camping trips. Last October, Rachel’s life was cut tragically short. “She wouldn’t be dead if it wasn’t for the pill,” says Helen, her friend and neighbour in Brighton.

A month before she died, Rachel began to feel lethargic. Nobody thought it was anything out of the ordinary – not in COVID times. Helen went to visit her during a play-date. She asked Rachel if she’d been on her running machine – she was always active and exercising – but she hadn’t, she just didn’t have the energy. “That wasn’t like her,” says Helen. “She seemed a bit down in the mouth. I said, ‘Come round on Sunday, we’ll have a barbeque, the last one of the season.’ And she did. And then she was dead two weeks later.”

Her death left everyone reeling. What had happened? At the inquest, the coroner described a string of contributing factors – “a perfect storm”. Rachel had been more sedentary than usual. Work was busy; she was tied to her desk. She’d taken a flight to Greece. But the coroners, the doctors, and Helen, are certain of one thing: the pill was to blame. “The coroner was without a doubt clear that if she wasn’t on the pill, this wouldn’t have happened. That’s the mitigating factor in her death,” explains Helen.

Rachel had a family history of deep vein thrombosis (DVT), something that should have automatically barred her from the combined contraceptive pill. Post-mortem, they discovered a genetic mutation making her 30 times more likely to develop blood clots. In that final month, she had been in a prothrombotic state, her body continually creating clots. Some were breaking up and travelling to her lungs, making it difficult to breathe. She was given an asthma inhaler. When she continued to deteriorate, her husband, Charlie, took her to hospital. They found clots and administered suppressor drugs. She was sent home. 20 minutes later, she collapsed on the kitchen floor; a massive blood clot had travelled to her lungs and heart. An ambulance was called. Charlie couldn’t be with her due to coronavirus restrictions. He waited in the carpark. Rachel was on her own when she died, an hour later, from another catastrophic clot.

Rachel’s story is devastating and so important to tell. But it is by no means the only one.

After her death, Helen and her wife embarked on a Googling frenzy. They found numerous other cases of young women on the pill dying suddenly from blood clots. A quick search confirms the same: a daughter, aged 22; a mum on her dream holiday, aged 42; a teaching assistant, aged 21. The list goes on.

Coronavirus discourse has recently been engulfed by a debate about blood clots and the AstraZeneca vaccine. Following the discovery of a handful of cases – thought to be linked to the vaccine – much of Europe slammed the breaks on their AZ roll out. Only last week, the UK announced it would offer under-30s an alternative. For many women, the AZ debate has sharply reinforced another one: gendered healthcare bias.

“The coroner was without a doubt clear that if she wasn’t on the pill, this wouldn’t have happened. That’s the mitigating factor in her death” – Helen

Let’s put the peril in some perspective. Of the 18 million people who have received the vaccine in the UK, there were 30 reports of blood clots. The UK medicines regulator found no link and no greater risk to the population than blood clots generally. Now, the combined contraceptive pill. (This is the most common type of pill, containing both oestrogen and progestogen. Alternative contraception methods exist, including the mini-pill (progestogen-only) which is thought to cause a negligible, if any, risk of clots, and the coil and implant, which have no link to clotting). In some estimates, the risk of blood clots when taking the combined pill is 1 in 1,000. Research has found the pill triples the risk of blood clots; in others it was found to increase it 7.5 times.

Yet the pill is given out, like candy, to women every day. 842 million women across the world take the pill. Many are prescribed it without being aware of its side effects – regardless, these are often deemed “acceptable”. (Note: the male pill-equivalent was terminated mid-trial due to “intolerable” side effects including muscle ache, acne, and mood disorders). At best, your blood pressure is taken and your health and family history examined. Too often, the pill is handed out, no questions asked. Certainly, there is no test to determine if you have a rare blood type, or gene, that means this decision – taken so lightly in the bland, familiar surroundings of your GP – could be fatal.

Granted, there is the hobbit-sized information pack dispensed with your prescription. True, within the maze of hobbit-sized information there are details of side effects. But what 16-year-old is going to take the time to read the small print?

Charlotte was put on the combined pill when she was 16. “It was the normal thing… heavy periods, a long-term relationship,” she tells Dazed. “I went to the doctor and just got given the pill. I didn’t get my weight taken, blood pressure, or anything. It was just really easy. At that age, a lot of girls were starting the pill. It was common among my friends. It felt safe. It felt like the normal thing to be doing as a girl.”

Two years later, on a night out during her first year of university, Charlotte’s chest began to feel tight. She was wheezy. She started coughing up blood. The following day, the GP referred her to hospital for an X-ray: perhaps she had a stomach ulcer or collapsed lung. In the week-long wait for results, the pain got exponentially worse. “I could barely breathe,” Charlotte says. “I couldn’t walk. I was constantly coughing up blood. The pain was horrific. I couldn’t sleep. I couldn’t lie down.”

Her mum intervened. At A&E, multiple blood clots were found across her lungs (DVT). They discovered that Charlotte has a genetic clotting condition called Factor V Leiden. “The nurse was like, ‘You’re lucky you haven’t had a heart attack, you haven’t had a stroke, and you’re still alive.’” They could find no other cause for her clots than the pill.

It is important to note, however, that for most women, combined contraceptives are safe. The British Pregnancy Advisory Service (BPAS) recently issued a firm statement on avoiding a repeat of the 1995 ‘Pill Scare’, where fears of a connection between blood clots and the pill led to many women ceasing to take contraception and an uptick in unplanned pregnancies. Patricia Lohr, medical director of BPAS believes drawing a comparison between the vaccine and the pill is “problematic”. She tells Dazed: “That’s where the crux of our concerns lay – it was not in any way to say that the contraceptive pill carries no risks. All medical interventions carry some risks. But that comparison could lead people to decide to stop taking their oral contraception and not get the AZ vaccine, despite there being significant advantages to both.” One of these – avoiding pregnancy – is pertinent in the blood clot debate: the risk of blood clots during pregnancy is even higher than the pill, at 1-2 in 10,000.  

“All medical interventions carry some risks. But that comparison could lead people to decide to stop taking their oral contraception and not get the AZ vaccine, despite there being significant advantages to both” – Patricia Lohr, BPAS

Nonetheless, a yawning void of knowledge, education, or adequate warnings around the risks (or the fact that there are safer alternatives) persists. Highlighting these and sparking a more granular examination of the guidance being offered is essential. What can and should be done to prevent deaths like Rachel’s?

“It’s absolutely essential that anybody prescribing the pill does a thorough medical history and ensures the patient is low risk for that pill,” says Lohr. “But even so, they need to discuss the small but present increased risk even in people who don’t carry these clotting disorders or family histories. The important thing is that each person can make an informed decision and understand the risks and signs that something untoward may be going on so they access care quickly. One of the things we wanted to do by highlighting this was to put accurate information into the public domain about the risks of these contraceptives so women can feel empowered.”

Gendered medical bias is a wider and older story than contraception. Centuries of female exclusion from medicine has meant women’s diseases are often missed, misdiagnosed, or remain a mystery. Doctors, scientists, and researchers have historically been men; as have the cells, animals, and humans studied in medical science. That means many diagnoses and treatments are tied to the experiences, physicalities, and symptoms of men – with serious consequences. Only in the past decade has this been recognised, and begun to be combated. 

“There’s damaging female underrepresentation in both scientific studies and health datasets, which generally leads to poor outcomes for women,” says Dr Sumera Shahaney, Head of Clinical Operations at Thriva – a health platform that recently launched a female hormone test to fill the ‘information gap’. “I read a paper the other day that said one in three women in the UK suffer from reproductive problems, but there is five times more research into erectile dysfunction which affects 20 percent of men. The disparity means there is very low awareness of female-related health issues.”

The consequences? “It’s two things: the lack of research means that as doctors we’re less equipped to be able to provide women with the answers they deserve,” Shahaney explains. “Secondly, there might be medications and we just don’t know how they will impact the individual in front of us because they’re a woman.”

Shahaney reveals that Thriva data shows women often suffer in silence: “About 80 percent of women we interviewed said they would ignore symptoms rather than seeing their GP and would accept symptoms like bloating, headaches, mood swings, and low libido as just part of being a woman.”

Many women are fed up with acceptance and compromise when it comes to their health – and the vaccine debate has intensified the feeling. As Helen says of the pill: “Why have we created something that’s not fucking 100 percent safe to use? Why do we have to compromise? Why can there not be something that’s safe? I don’t understand why not.”