“I felt like all hope was gone. On one hand, I have this treatment and on the other hand it was too expensive. I couldn’t afford it.”
Born and raised in London, United Kingdom, Muhammed Haque, or Mo as his friends call him, has always lived a healthy lifestyle. But at age 31, everything changed when he was diagnosed with colorectal cancer. To survive he needs immunotherapy, which is unavailable on the NHS (National Health Service) and costs more than £200,000, leaving Mo with no option but to fundraise for his treatment.
In October 2014, Mo was on his way home from work when he felt a slight stomach pain. The pain kept on getting worse but he brushed it aside for the night.
“At the same time I intuitively thought that I might not wake up next morning so I wrote a note to someone as it was my last note.”
Next morning, the pain was still there so M0 messaged a friend to ask for advice. “I don’t necessarily do doctors so I needed reassurance that this was serious,” Mo said. His friend told him to go to nearest hospital.
At the Accident and Emergency Department (A&E) at University College Hospital (UCLH), Mo had a series of blood tests, x-rays and an electrocardiogram. When a doctor asked about his family medical history, Mo revealed that his dad had died of bowel cancer when he was only two-years-old.
Back to hospital
Six weeks later, Mo returned to the hospital for an endoscopy, a procedure in which the stomach and small intestines can be viewed by a camera inserted through the mouth, and colonoscopy, a similar procedure in which a tube is inserted through the rectum so the colon and large intestine can be viewed.
“The endoscopy didn’t show anything but they couldn’t finish the colonoscopy procedure because of an inflammation,” he explained. Mo through an emergency Computed Tomography (CT), a detailed scan of the body. After the scan, the doctor said he had either cancer or Crohn’s disease.
On 11 December, Mo was called into the hospital to see a consultant. It was 9am when Mo and his sister arrived at UCL Hospital. After a long wait, Mo’s name was finally called and he walked into the consultant’s office.
“The consultant just nodded his head and said ‘Yes, it’s cancer.’”
His first reaction to the news was the memory of a message he sent to a friend, telling him to stay strong. He said: “This is what I said to somebody else and I needed to do it for myself.” He looked at his sister, who was seated next to him, grabbed a pen and a piece of paper, and started taking notes about the next steps.
The next visit to the hospital was to see an oncologist, who said he had a small chance of success. Immediately, Mo decided to reconnect with people who he had let go in the past.
“I had to make peace with people and seek forgiveness, because I didn’t know how long I had left.”
The colorectal cancer results left him devastated, but Mo feels like his lifestyle and interests had prepared him for it. Ten years before the diagnosis, Mo became interested in personal development, meditation and spirituality. He attended personal development events, read motivational books and went on spiritual retreats. One of Mo’s favourite life coaches is Tonny Robins, who specialises in helping people like Mo to achieve their goals.
He said: “I never felt pressured to decline chemotherapy or accept chemotherapy because I knew I had support.”
Mo’s first chemotherapy session was scheduled for Christmas Eve, just a few days after he turned 32. “It was kind like a Happy Birthday, Merry Christmas, Happy New Year, all in one,” he laughed. After three months of intense chemotherapy, the tumour started to shrink, which meant the doctors were able to operate. The surgery was successful and the doctors removed the tumour.
Immunotherapy unavailable on NHS for colorectal cancer
Following an additional three months of chemotherapy, Mo’s oncologist told him that the cancer was growing again. This time, he needed either second-line therapy, a treatment given when initial chemotherapy doesn’t work, or immunotherapy, treatment that uses certain parts of a person’s immune system to fight cancer.
Second-line therapy did not work. The only option left was immunotherapy and the doctors were confident that this treatment could save Mo’s life. The immunotherapy, called Pembrolizumab, is unavailable on the NHS.
The NHS said that the medication has been used to treat other cancers, such as melanoma, but not colorectal cancer. However, cancer specialists believe Mo is the “perfect candidate” for immunotherapy.
“I’m assuming my age, being fit and healthy makes me a strong case,” Mo explained.
An NHS England spokesperson told the IPF: “The company that markets Pembrolizumab hasn’t yet applied for a marketing authorisation for treating people with colorectal cancer.”
MERCK, the pharmaceutical company marketing the drug, confirmed that they have not yet sought approval and that they are still evaluating the efficacy and safety of the treatment.
Mo’s consultant made an Individual Funding Request asking the NHS the fund the live-saving treatment. Mo also approached the pharmaceutical company to ask if they could provide the treatment for free on compassion. Both requests were declined.
“I felt like all hope was gone. On one hand, I have this treatment and on the other hand it is too expensive. I couldn’t afford it.”
Stress caused by the cost of the treatment made Mo decide to go on a short spiritual trip to Saudi Arabia, where he was able to forget about everything happening back home.
“When I was in my trip in Saudi, I asked the spiritual leader if it was ok to fundraise to pay for my treatment and the leader said that it is 100 per cent my duty.”
As soon as he got back from Saudi Arabia, Mo and his friends came up with a plan to raise money to pay for the treatment. He explained: “At the time I thought if the NHS was not going to fund it, there might be lots of people out there who can help me.”
Fundraising for his own treatment
Mo set up a JustGiving page, explaining why he needs help to fund his cancer treatment and asking friends and family to donate. He has now raised more than £60,000, which allowed him to have his first dosage of the drug on 1 June. More than a thousand people have donated and some have organised their own fundraising events, including a London to Paris cycle ride. Mo has also made live fundraising appeals on TV ONE, Sky 849, a British Bangali TV channel.
Mo speaks at an event about his experience
“There is no guarantee that treatment will work but there’s a good chance it will. That’s why I’m pursuing it but I can’t sit back and do nothing,” he said. “Whatever happens, I want to know I have done the best I could do.”
Although Mo’s future is uncertain, it hasn’t stopped him from making plans for what he wants to do when his battle with cancer is over. Mo told us that he wants to dedicate his life to helping people, starting by opening a school for orphans in Bangladesh, where his family is from.
“I don’t want the school to be a place you go in and learn English, Maths and Science,” he explained. “I want it to be a place where kids can go and explore who they are.” Because of his experience, Mo also wants to set up a charity providing help for people going through a similar situation.
“I don’t know if this is idealistic but I think everyone should do what they love and what they are naturally called to do.”
You can read more about Mo’s story on his personal blog and you can donate here.