As the year 2017 approached, David Downs could feel that his health was deteriorating. He made the New Year’s resolution to lose 10 kilos and spend more time with his friends and family.
“Be careful what you wish for. Only a month later I had lost eight kilos and was diagnosed with blood cancer, lymphoma,” Downs said.
He was 46 years old and told by doctors that he needed chemotherapy, but after eight months of on/off treatment, the cancer kept coming back.
“I was having different types of chemo to fight it but none of the treatments worked. The doctor told me they couldn’t operate because it was cancer of the blood.
“I was told it was terminal and I had less than a year to live. In New Zealand there was no next step,” Downs said.
The father of three teenage boys had been writing an online blog about his experience throughout the ordeal which was being read by 100,000 people a week.
Through his public exposure, Downs was contacted by an immune therapy doctor in New York who wanted to help.
Researchers at Harvard University in Boston were looking for participants for their upcoming trial using CAR T-cell cancer therapy and Downs fit the profile, but it wasn’t cheap.
“The initial quote I was given to be on the trial was a $1 million USD deposit. I thought, ‘Oh my god I don’t have that,’ I have a family and had been off work for quite some time by that stage.
“The money was another hurdle to overcome. Luckily it didn’t cost as much as the initial quote but it was still hundreds of thousands of dollars. We managed to raise some money through the Givealittle website and via a charity concert that some friends of mine put on, who are comedians.
“We raised enough to negotiate with the billing department at the hospital for the deposit.
“I flew to Boston in December 2017 and the doctor let me join the trial along with 180 other people,” the Westpac customer said.
CAR T-cell cancer therapy works by drawing out the patient’s white blood cells – a process called leukapheresis. The T-cells are then separated in the lab and reprogrammed with a new genetic sequence so that the T-cells produce new surface receptors called CARs.
CAR T-cells can recognise and destroy cancer cells, so that when the patient’s blood is infused back into their body, their own immune cells kill the cancer.
Downs was in the US for a total of four months in order to be tested before, during and after the trial but the actual CAR T-cell therapy was a much quicker, much less painful experience than chemo.
“The infusion of around 2.5ml of genetically engineered blood only took around 20 minutes. After about a week I had flu-like symptoms, because my body was acting as if it had spotted an infection and was fighting that infection the same way it does with a cold for flu.
“The flu lasted a week as the cancer was being killed. Five weeks later I went back to the doctor to get a full PET scan to see if there was any cancer.
“The doctor said I was completely in remission – there was no sign of cancer. This was five weeks after I was terminal,” Downs said.
Today, over a year after his CAR T-cell therapy, the now 48-year-old is fit, healthy and still in remission. Downs still has to fly to Boston for regular checks though and will be followed by Harvard University for 20 years as part of the trial.
Downs has also become an ambassador for the medical institute in New Zealand that is working on the same cancer therapy and is helping fundraise for their research.
The Malaghan Institute is preparing for CAR T-cell therapy clinical trials to get underway in Wellington in the near future and the institute says there should not be direct costs to participants.
“CAR T-cell therapy has the potential to target a range of different cancers,” Clinical Director at the Malaghan Institute, Dr Robert Weinkove, said.
“To date, it has proven most effective in trials targeting B-cell cancers, such as certain types of leukaemia, lymphoma and myelomas. However, as this technology develops further we expect this to change.
“The T cells can act as ‘living drugs’, providing long-term protection against relapse, similar to a vaccine.
“We began working on developing this technology (by refining the treatment and the CAR T-cell production methods) here in New Zealand in 2017 in partnership with NZ-Chinese joint venture Wellington Zhaotai Therapies Ltd.
“CAR T-cell therapies have recently been licensed in Australia, the United States and Europe to treat patients with certain types of lymphoma and leukaemia. Efforts are underway worldwide to extend the effectiveness of these early versions,” Dr Weinkove said.
“We are trying to raise money through philanthropy and when the Malaghan Institute trials start soon, I’ll be working with some of those patients to help them,” David Downs said.