Bexley mum with Von Hippel-Lindau celebrates victory over new drug

Kathryn Chapman lives with Von Hippel-Lindau (VHL) that causes the growth of both malignant and benign tumours and affects 1 in 36,000 births.

Kathryn, 42, was diagnosed with the condition at the age of 10 and has undergone eight operations over the course of her life, and had a “gruelling” battle following a Whipple procedure in June 2022.

The surgery involved the removal of half of her pancreas, along with some of her stomach, gall bladder and some upper intestines, and left her in intensive care.

The mum-of-two said: “It affects everything, every decision you make with regard to relationships, family, travel, a plan for next year's holiday.

“It affects every part of life, really.”

Kathryn has been a trustee for the VHL charity for the UK and Ireland, and has been a key player in assisting with talks with NICE in a bid to get a drug to treat the condition approved.

The drug, Belzutifan, a take-at-home pill that has had successful use for treating the condition in the United States, was approved for use as an alternative to surgery, which up until now has been one of the only options to remove tumours for patients like Kathryn.

Kathryn has been a key player in assisting with talks with NICE in a bid to get a drug to treat the condition approved. (Image: Kathryn Chapman) Kathryn said: “I’m still in shock it has happened.

“There are a lot of patients who need to be on it now who are desperately ill and it will be life-changing to them now.

“But for me, even though I don’t have any tumours that require treatment now, I can start to think about the future, unlike before.

“Before, if I had a tumour that got too large, the only option was surgery, but now with this drug there’s always going to be another option, and it feels like a weight has been lifted.”

Kathryn was one of the trustees who worked with the charity alongside NICE during the consultation stages, conveying patient accounts of their experience with this illness that affects around 800 people across the UK.

Following clinical trials, 95 percent of patients who took Belzutifan did not experience any tumour growth within two years, and 56 percent of patients’ tumours had shrunk.

The drug, made available from September 5 in the UK through NHS England’s Cancer Drug Fund, is estimated to help 100 people in the first year and 50 people per year following on from that.

Kathryn described the news of the drug’s approval as a “seismic victory” for both her and her family. (Image: Kathryn Chapman) Kathryn, who feared the drug may not be approved, described the news of the drug’s approval as a “seismic victory” for both her and her family.

Kathryn said: “It’s a seismic victory, it feels huge.

“There’s never been a treatment for this disease, it's always been surgery.

“But many of them are huge surgeries with massive repercussions and risks and it's taxing having to go through it over and over again.

“There's never been a time before this drug when people have got a scan result, and they've been told it's reduced in size or it's gone.

“That's just not something that a VHL patient would ever hear. But with this drug, that is a possibility.”

But it’s not just Kathryn who also feels the relief of the news, its also her family too.

Kathryn described her youngest daughter's reaction to the news, saying that she “burst into tears”.

Kathryn described her youngest daughter's reaction to the news, saying that she “burst into tears”. (Image: Kathryn Chapman) Kathryn said: “My oldest daughter has been very supportive throughout, but it's not always been easy to explain things to my younger daughter, who is now eight, on why we’ve had to make sacrifices.

“I told her and said that there’s now a drug that will mean I don’t have to always have operations and be apart from her, and she burst into tears.

“When I asked her to tell me how she felt she said ‘I'm just so happy, because I don't like it when you go for operations, I miss you.’

“And I just thought the impact of this is huge, on everybody.”

For Kathryn and others like her, the drug will now mean that patients are faced with more than the one option of surgery to treat these tumours, which can often cause a large number of side effects from diabetes, vision loss, paralysis and even the need for life-long dialysis.

For Kathryn and others like her, the drug will now mean that patients are faced with more than the one option of surgery to treat these tumours. (Image: Kathryn Chapman) Speaking on her involvement, Kathryn said: “I'm really proud of the input I've had, and the fact that I know that this will definitely change people's lives, and has offered me hope, and potentially changed my life and that of my children and the people I love.

"I'm proud and I'm relieved that the hard work has paid off.

“Just knowing there's an option, reducing anxiety about fear for the future.

“We can plan a bit more with confidence that our health might be okay.”

Chair of VHL UK/Ireland, Graham Lovitt, said: “We are delighted by NICE’s recommendation of belzutifan (Welireg) under the managed access agreement, a significant milestone in the fight against this rare disease. 

“This decision brings hope to patients and their families, offering them an alternative treatment option, where others become too high risk.

“VHL UK/Ireland remains committed to supporting those affected by the condition and helping everyone who can benefit from this breakthrough medicine to access it.”