Rod Padua still remembers the day he realized something was wrong with his son. It was 2006 and they were celebrating Maverick’s ninth birthday when his wife noticed that an area of his stomach felt hard to the touch.
“We didn’t know it at the time, but his spleen had grown 11 times larger than it should be,” says Padua, who lives in Manilla with his family. “The following day, we went to see a general practitioner who told us to see an oncologist immediately. From then on, we knew it was chronic myeloid leukemia.”
In those early days, Padua, a civil engineer by trade, found himself ill-equipped to deal with the harsh realities of his son’s diagnosis. He quickly learned there were no CML support groups in the Philippines and no way to access the costly medication his son required. They were on their own.
“My son would ask, ‘Dad, why did this happen to me?’” Padua says. “That’s a difficult question to answer from your kid. I told him the disease was given to you because you are rare and God knows you can handle it. He said, “But Dad, I don’t want to be rare, I just want to be like any other kid.’”
The birth of an advocate
With few other options, Padua decided to send a mass email to everyone in his address book to ask for help. Over the next three days, he received almost 7,000 replies — one from a cousin living in New York who told him about a group called The Max Foundation. The foundation, his cousin said, provides free medicine to many countries around the world. The Philippines, unfortunately, was not currently on that list.
“The drug we needed was made by Novartis but if Novartis is unable to get an arm in a country, they go to The Max Foundation,” Padua explains. “The foundation challenged us to form an organization so they could ship us the medication for free. That’s how my group, Touched by Max, started.”
When his family finally got access to the medication they needed, Maverick took the little orange pills religiously for about a year. After that, he started to avoid taking the medicine and began to exhibit a trauma-like reaction to anything orange. His father was forced to bribe him with chocolate and, later, videogames to get him to take the pills.
While his young son was struggling with treatment, some of the children at his Catholic school were making matters worse. “He was called the Leukemia Kid,” Padua says, sadly. “One February day, I was called by the supervisor nun — the same nun that graduated me many decades ago — who told me that the parents of my son’s classmates were afraid they might catch the disease. I told her about my advocacy work and how leukemia is not contagious but it fell on deaf ears. A week later, we got a memo saying he was being dismissed for honorable reasons. It was traumatic.”
The hope and heartache of helping
As his family explored private and homeschooling options for Maverick, Padua pursued his advocacy work in the hope he could spare other children from similar experiences. His civil engineering job required his attention from 8-5, five days a week, but almost everything outside of that went to his new cause. “I never wanted this to happen to my son but maybe it was God’s way of telling me that I could help a lot more kids,” he says. “My special concern with CML is pediatric patients.”
This work, which has now spanned almost two decades, included figuring out how to send patient blood samples from Manilla to a laboratory in Australia to look for a mutation that can make CML medication less effective. This involved acquiring a special syringe and learning how to pack the samples in blue ice for transit. It also meant learning how to break the news to patients who were found to have this mutation.
“To my honest mind, I thought I was helping,” Padua says. “I was not prepared for patients with the mutation to ask me what they’re supposed to do now. It was like a death sentence for them and I was not trained to answer back. Maybe it was better that they didn’t know that they had the mutation. From then on, I was better prepared and was able to find a medication for patients with the mutation.”
His advocacy work recently took him to Switzerland to be part of the approval process for a new, fourth-generation drug. His role involved providing pharma companies with feedback about the quality-of-life of patients on older medications, while pushing them to provide greater access to new innovations. “We, as advocates, respectfully pressured them about why 81 countries have access to older drugs and only 41 have access to the new drug. What about the other 40?”
A day to make a difference
World CML Day is observed on Sept. 22, a date that holds special significance because the disease is a result of alterations to chromosomes 9 and 22. “We cannot say we celebrate it, because we don’t want to celebrate the disease,” Padua says. “We recognize it to make people aware that there are people in society who are suffering and need help.”
For Padua, that means making as much noise as possible because the CML population is relatively small compared to other types of cancer and it doesn’t have many famous patients or celebrities to help champion the cause. “Leukemia, in the cancer environment, is rare by itself,” he says. “And then there are four types of leukemia. So, you get less funding from the government because you’re in competition with other cancer groups. This is part of our power — us making noise.”
The Touched by Max group he founded will mark the day by hosting a symposium in a medical facility in Manilla. They’ll also be offering polymerase chain reaction (PCR) testing, a procedure that can help determine the presence of the disease in a patient. Most of them would not otherwise have access. “One PCR test is almost half a month’s salary of an employee here,” Padua says.
The real hope, of course, is that they’ll find a cure for CML — something Padua believes is only a matter of time. Advances in artificial intelligence have already made it easier to diagnose patients and quickly determine if they have the mutation that may make medication less effective. “The way AI is evolving and learning from itself, I think a cure is really possible.”
In the meantime, Padua has no plans to slow down his advocacy work. With retirement from his day job just a few years away, he’ll soon have more time to dedicate to the cause. His son, now 29, is taking his medication regularly and has plans to move into a place of his own soon.
“I told my wife that I will miss him because my man cave is near his room,” Padua says with a smile. “It will be quiet when he leaves but that’s OK, he won’t be too far away.”