New hope for sufferers of the chronic bowel disease Crohn’s has emerged with the approval of the first ever one-a-day pill to treat the condition.
The debilitating illness affects over 150,000 adults in Britain, and is two to four times more prevalent among Ashkenazi Jews compared to those of non-Jewish European ancestry.
Currently, most people with Crohn’s are forced to take different medications every day to keep it under control. The worst affected inject themselves with powerful drugs every week, while some must wear colostomy bags, which seriously limits their day-to-day lives.
Yet a new daily pill for those with moderate to severe symptoms was approved in March of this year by the European Commission and earlier this month by British drugs regulators.
The capsule, called upadacitinib, has already been approved for the auto-immune condition rheumatoid arthritis, where the body’s immune system mistakenly attacks itself. Crohn's sufferers welcomed the new drug, saying it had the potential to change their lives.
TV producer Lucy Hershman hailed the drug, telling the JC, "anything to not have the injections would be great".
The Jewish 26-year-old’s Crohn’s was initially misdiagnosed as merely a weak immune system, and she used to sit in hospital for three hours every six weeks with arthritis symptoms so painful that some mornings she could not lift her legs.
At university, a nurse would come to her house every fortnight and inject her with Humira, an antibody drug.
"My twin sister is not afflicted with Crohn’s so I do sometimes think, 'for God’s sake, why do I get the sh*t end of the stick?'"
Now in remission but still on a different drug regimen, Hershman wishes she had known "how much stress and outside workings can impact your gut."
Like her, many who take medication find they do not work straight away. While on steroids for her Crohn’s, one Jewish mother of four said the medicine “masked the symptoms, but it didn’t deal with them.
"You get bloated, you eat more and you retain water. It's an amazing drug on the one hand, but it's not a long-term drug.
“It's a difficult time when you're young, you want to go out, you want to look lovely, and you’re all puffed up, feeling ugly and unsexy. I've never been on steroids since.”
First diagnosed at 17, Rachel (whose name has been changed) also self-injects Adalimumab, an antibody drug, every week.
At 21 she had a resection, an operation in which part or all of an internal organ is removed.
“There was such a narrowing in my intestine that in my naivety I said to the doctor, 'if something's bad, can you not just cut it out?'”
Though Rachel says she has never allowed Crohn’s to stop her doing what she wants, she does increasingly have a restrictive diet.
“There's no question of it. I don't have any pulses. If I were to eat a lentil, I'd be hospitalised. The consequences are quite extreme for me.”
She has been forced to accept, she says, "that if you need the loo and you're in the middle of nowhere, you must go.
"But if you don't go behind the bush, you will stay at home. I don't want to lead my life like that.”
Rachel believes she's “got quite a high pain threshold, because Crohn’s is so powerful in your stomach.”
"[The pain is] very sore and can go in waves," she said. "Although you know it’s going to come to an end, we’re talking 12 hours for it to go through the system.
"The other side to that is when you need the loo and you just don't have enough time. I don't think you ever get used to it, but you just deal with it.”
In Israel, there are some of the highest incidences in the world of Crohn’s disease and digestive condition Ulcerative Colitis, with 46,074 sufferers of the Inflammatory bowel disease (IBD) in the country in 2019.
Increased genetic risk factors of Crohn's seen in Ashkenazi populations appear to be rooted in a history of migration, catastrophic reductions in population, and then re-population from a small number of surviving founder families over many centuries, Dr Dermot McGovern, director of Translational Medicine at Cedars-Sinai, wrote in 2018.
These factors effectively concentrated genetic variations in a comparatively small population.
For Israeli-born IBS sufferer Gemma (whose name has been changed), the new upadacitinib pill is incredibly significant.
"Any research or advancement in this field is [important]. I mainly want more awareness and less shame."
At first, Gemma was embarrassed to speak about going to the loo, even with her doctor.
"It’s pretty debilitating and not the most aesthetic thing to talk about," she said.
Once while shopping in Zara, the sudden intense pain in her abdomen caused her to fold over and she could not move.
Now on multiple medications for pain, Gemma is less adventurous with trying new restaurants and makes sure to cut out "the green stuff": broccoli, spinach and sprouts.
"These were the cards that were dealt. Obviously I wish I didn’t have stomach problems, but I look at the positives. It’s made me independent."
Upadacitinib’s approval by the Medicines and Healthcare products Regulatory Agency was supported by data from three Phase 3 clinical trials, where in all studies, significantly more patients treated with upadacitinib achieved the "clinical remission and endoscopic response".
Thomas Hudson, chief scientific officer of AbbVie, said: "The EC approval of Upadacitinib in Crohn's disease is a significant milestone in offering patients the first and only once-daily oral treatment that can provide endoscopic improvement, and sustained symptom relief, making a difference in their daily lives.
"With existing therapies, not all patients are able to achieve adequate disease control to meet their treatment goals, which is why we continue to embrace the challenge of expanding our irritable bowel disease portfolio with new treatment options."
