“My son was just 9 years old when he was diagnosed with Chronic Myeloid Leukaemia and he was being bullied in school. It’s a 100% Christian Catholic school. One day I was called in to the school by the head nun who said, “The parents of your child’s classmates have held a meeting because they are afraid their children might get the disease that your son has”.

I told her, “I went to this school. Now I am in this position to tell the whole world it is not a communicable disease. And I’m in front of you telling you it’s not.” One week passed and I got a memo from the school: an honourable dismissal of my son from the school – I was just shocked.”

Today, that young boy is 28. “But even now he’s like a hermit,” continues Rod. “So often he would not leave his room. He’s still living with me, even at 28.”

A long road to understanding CML

Rod’s son was diagnosed with Chronic Myeloid Leukaemia (CML) when his grandmother insisted that he needed medical attention. The day after seeing the family doctor, Rod’s son was referred to a specialist, who diagnosed CML. Rod knew nothing about CML or cancer in general. From that moment, which has led him to help thousands of other people, he began his long journey on the road of understanding CML and its treatment, and his commitment as a patient advocate to improve access to treatment for other patients.

“I knew so little medical science. I am an engineer by profession, and I love engineering. So I started my research –  what was the benchmark in the Philippines? Are there groups there that could help and inform? And there were no groups. So, I thought to myself, I have to do something. So that’s when it all started. I wrote an email, the same email to eleven people.  And the following morning I had many replies in my inbox. Two of them mentioned the Max Foundation in the USA and that’s when things really took off.

Group formed represented by all sectors of society

“I formed a support group,” he continues.  “We registered it with the Securities and Exchange Commission. We had 15 board members at the time, from all sectors of society, who had CML or knew somebody who had cancer. It just snowballed and snowballed. Through the years we were able to make noise, with the government  supporting access programmes with the treatments and laboratory testing.”

But that progress didn’t mean things became straightforward for those living with CML, not least Rod’s son. “He has to take four pills every day and something happens within your body that upsets it, such as gastrointestinal problems. You turn pale, your fingernails turn black. So it’s like a trauma.”

‘I had to bribe him with chocolate’

“It was important for him to understand adherence to treatment. He was following my instructions during the first year of treatment, but during the second year, I had to bribe him with chocolate, M&Ms, Snickers bars, everything I could lay my hands on that a child would want. And then came the Sony PSP, followed by the DSLR cameras.”

Rod emphasises that scientists are still some way from finding a cure.  “But during this past decade,” says Rod, “There are some patients on a controlled clinical trial in Germany, France, Italy and they stopped taking the medicine. The disease has not come back, so it’s called treatment-free remission or TFR. However, these third and fourth generation drugs are not available in the Philippines. My feeling now  and my 18 years of experience working with people who have CML is that most of our CML patients might already be in that TFR stage, but since there are no tests available, we wouldn’t know.”

First-line treatment far too expensive in the Philippines

Rod is also clear about what is holding back better treatment in the Philippines. “Firstly, the guidelines say you have to have PCR testing monthly for the first three months and then every six months thereafter. One PCR test is about half a month’s salary, US$ 300. That’s a lot – so that cost holds us back.

“The other key hindrance is lack of education and resources in general. The Philippines is made up of 7,000 islands, only half of which are inhabited. In order to neutralise the disease some people try to use herbal concoctions, or burn money to force the bad spirits out. Usually those suspected of having leukaemia would be lucky to have a GP in their community. They don’t have money to travel all the way to Manila to consult a  specialist so that that’s a major constraint.

“Those that do get to Manila, if they have a chance to email me or message me I am able to help them, to help navigate them to the proper agencies, which gives free medicine. And sometimes they might just borrow money to go to a consultation in Manila.”

Blood samples to test for mutations

Rod is also very humble about the extent of the help he can give to CML patients. “Working with the University of Adelaide and the Max Foundation, as we don’t have a patient testing facility in the Philippines, we sent 30 blood samples across the seas from the Philippines from our member patients who are suspected of having had a mutation when the drug is not working any more.”

“Then we did this twice more, so a total of 90 patient samples. The first time I did this, I was so sure of myself helping these patients. But then the results came back after one month and eight of the 30 had mutations. So I told them, “I’m very sorry. You have mutations.” And what I did not expect, what I was not trained for, was when they asked me, “So what do we do next?” For the third batch, I did my research that there is indeed somewhere in the world with one medicine for mutations.”

Rod also noted that following the licence negotiated between Novartis and MPP, the likely greater availability of nilotinib is great news for those living with CML in countries like the Philippines. “For patients with worsening disease levels taking imatinib, making generic nilotinib available is a much welcomed option,” he says.

Rod also welcomes MPP’s activities in the field of access to NCD treatments. “MPP’s has a daring strategy where no-one else dares explore. MPP has to work with so many partners to convince them of the value of access to treatment for people in need. I can only say that with noble intentions such as this, I as an advocate, remember why we are here in the first place: to save as many lives as possible.”