The independent London newspaper

Complete strangers help man raise £190,000 for cancer treatment only ‘millionaires could afford’

Mo Haque writes book of 'hope' about how people helped him access immunotherapy not available on NHS

15 June, 2018 — By Tom Foot

Mo Haque

A UNIVERSITY worker raised £190,000 to save his own life after being denied breakthrough cancer treatment on the NHS.

Mo Haque, who grew up and lives in the Ampthill Square estate in Mornington Crescent, was told two years ago that his chemotherapy had stopped working. The 35-year-old was told new “immuno­therapy” treat­ment could save his life – but only “millionaires could afford it”.

After his plight was featured in the New Journal, national media and on TV, thousands of pounds started flooding in from anonymous donors. This week, one year after being told the expensive treatment was a success, he has released a book about his ordeal, Choosing to Stay, out tomorrow (Friday).

Mr Haque told the New Journal the book was a story of “hope” and to show people that they were “never alone” however low they got. He welled-up when he recalled how a couple in New Zealand he had never met did a sponsored 40-day bike ride from the north to the south of country, raising five thousand pounds for his cause.

“I had no idea who these people were,” he said. “Most of the donations that came in were just marked ‘anonymous’.”

While the book has a cover to suit a Hollywood story, Mr Haque has endured serious side-effects. He now urinates “in a different way”, into a bag strapped to his waist. He has ulcers that cause him pain. He struggles to open heavy fire doors installed in his tower block after the Grenfell disaster. He described himself as “mentally tired, physically fatigued”.

He said he has been told that treating the side-effects from the immunotherapy with steroids could see the cancer return.

Mr Haque, who went to Holloway School, said: “If I go up to Camden Town, there are people and shops I can stop in on the way – but going somewhere further away, that’s difficult, you know. But I have to look at the bigger picture, I have to be grateful.”

Mr Haque grew up in Dalehead on the Ampthill estate and had a paper round and later worked in the newsagents in Eversholt Street. He was working as a student development director at Kingston University and had already spent several years reading philosophy and self-help books when, in 2015, he walked into A&E with “unbearable pain” that was making it hard for him to breathe. After initially being dismissed as “tummy ache”, after six weeks he found out he was anaemic and also had bowel cancer.

Mr Haque said that a day has not gone by without him thinking about death since his diagnosis.

In the book he recalls how, after around one year of treatment, a scan came back with “three pieces of information that his cancer was terminal”. He was told: “The chemo’s not working The cancer is growing. There is no more treatment available.”

Mr Haque was told about a new treatment that was not available for patients with his kind of cancer and that he “needed to be a millionaire” to afford it. Immunotherapy works by altering the immune system to enhance its ability to fight certain diseases.

Proteins are used to boost the system and immune cells are trained to better recognise cancer cells.  A standard treatment costs £20,000 a month. So he contacted Holborn and St Pancras MP Keir Starmer, who wrote directly to health secretary Jeremy Hunt, who replied that this was a matter for the independently-run NHS.

The oncology team at UCH applied for fund­ing on compassion­ate grounds but they were repeatedly knocked back as the drug, Pembrolizumab, had not been licensed by the National Institute of Clinical Excellence (NICE) for use on the NHS.

“The reasons are political and financial,” said Mr Haque. “But I think when there is compelling evidence that if the drug works – 70 to 80 per cent of patients using immunotherapy overcome their cancer – then it should be made available on the NHS.”

Fundraising became his only option but Mr Haque said at that point he spiralled into despair.

“The maths were simple, yet the numbers were scary,” he said. “I was nowhere near ready to go out and beg for my life. I questioned the price put on life and whether I was worth living. I found myself in a depressive cycle. I didn’t shower or change my clothes for days.”

It was only after a chance meeting with an inspiring friend in his favourite café, the former Yumchaa in Parkway, Camden Town – recently changed to Gail’s – that he “chose to stay”.

He started going to mosques, centres and community events. He contacted the press about his story and “soon I had become a local celebrity”, he said, adding: “I was stopped in the streets by well-wishers. ‘Are you Mo? Are you the brother with the cancer?’”

He raised £190,000 of his £200,000 target. All the money was spent on the treatment, in the private wing of University College Hospital For more information visit http://www.cancer treatment/immunotherapy/what-is-immunotherapy

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