Mum files £2,400 cancer drug tax bill over post-Brexit VAT changes

Gemma Lee has been diagnosed with stage four brain cancer and is paying £5,000 a month for medicines she can’t get in the UK. She has now been hit with an additional tax bill of £2,400

Gemma Lee and her husband Graeme
Gemma Lee and her husband Graeme

A terminally ill mother has been handed a £2,400 tax bill for her cancer medicines due to post-Brexit VAT rules.

Gemma Lee, 41, has been diagnosed with stage four brain cancer and is paying £5,000 a month for medicines she can’t get in the UK or the NHS.

But the mother-of-two says she was billed an extra £2,432 due to changes in how VAT is calculated after Brexit.

Gemma began taking ONC201, a German investigational drug, after doctors said she had just a year to live. She says the drug has “massively changed” her life.

“I just got this letter, opened it and gasped,” she told Teesside Live.

Gemma Lee says she has been hit with an extra £2,400 tax bill


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“You are fighting for your life and you are also fighting bureaucracy and taxes. Since taking them I have remained stable which has been amazing. That shouldn’t happen to me.”

Gemma had previously endured a grueling 30 rounds of chemotherapy and radiation therapy – the highest doses a person can have – but it didn’t change the size of her tumour.

“It was for six weeks, every day,” said Gemma, who is being treated privately.

“It took a tremendous toll on my body. We ended up getting a scan saying it hadn’t made a difference. It was soul crushing.

“I thought, ‘At least I’ll get rid of it,’ then the rug was pulled out from under me.

“We as a family just didn’t want to accept that it was like that from that day on, and we started looking for alternatives.”

A ‘Go Fund Me’ campaign was launched to raise money for treatment and the response from well-wishers was incredible.

Gemma was so ill that she could not travel to Germany to take care of the treatment herself.

Her husband Graeme, who is Hartlepool United manager, had to make the 24-lap journey alone.

“I’m just looking for more time,” she said.

“I want to shout it from the rooftops, I see people in the waiting room, other people like me going through what I’m going through and I want to say there’s other things out there.

“You really have to look closely, they cost a lot of money – and that’s the problem. The drug is in the second phase of studies and is available in France.

“I’m sure it will eventually be recognized and used here, but it might just be too late. To this day it costs £5,000 a month.

“And on top of that, we get an invoice for the shipping.

“The tumor I have is more common in children. It makes me even more angry that this drug is mainly going to children and they are charging these tax amounts.”

Medicines prescribed by a registered pharmacist are exempt from VAT in the UK. However, a VAT exemption is not available for imports.

An HMRC spokesman said: “We are sorry to hear of the client’s circumstances.

“Supplies from the EU are now subject to UK import VAT, rather than EU VAT from the supplier, and EU suppliers should have adjusted their charges to reflect this position. There is no general VAT exemption for medicines sold in the UK.”

They added: The recent cost increases mentioned for 2022 are not due to changes in VAT or tariffs, as these have not changed since leaving the EU.”

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