MY 8-YEAR-OLD son was diagnosed with chronic myelogenous leukemia (CML) in 2006. CML is a rare form of cancer in which the bone marrow makes too much abnormal white blood cells or leukemia cells. Eager to know more about the disease afflicting my son, I joined Touched By Max (TBM) Philippines. Established in 2006, TBM is a nonprofit support group for Filipino patients with CML and gastrointestinal stromal tumor (GIST), another rare type of cancer that usually develops in the stomach. To date TBM has 2,000 members, many are children with CML or GIST and their families.
Monitoring is crucial in determining whether a patient with leukemia is responding to treatment. Without monitoring, a patient’s chance for survival can be significantly compromised. There are several monitoring tests for CML treatment. A complete blood count or CBC, which shows the number of white blood cells, costs the least. Cytogenetic testing, which costs more than CBC, determines the number of cells with the Ph chromosome in the blood or bone marrow.
Most TBM members can only afford regular CBC, with some able to pay for periodic cytogenetic testing. Real-time quantitative polymerase chain reaction (RQ-PCR) is the CML monitoring test recommended by experts. RQ-PCR is a very sensitive test that can detect extremely low levels of the bcr-abl gene (an abnormal gene that causes leukemia cells to continue to grow and divide) in a test sample. This test is capable of finding small copies of genes even when other tests cannot detect it.
RQ-PCR costs over P12,000 per test locally. Treatment guidelines recommend RQ-PCR testing four times a year. Hardly surprising that very few patients in the country are able to undergo regular RQ-PCR testing.
Some CML patients develop resistance to the standard first-line medicine. Treatment resistance is caused by genetic mutations that can be identified through special genetic tests. Unfortunately, laboratory facilities capable of performing such tests are not available in the Philippines.
In 2011, we partnered with The MAX Foundation and the International CML Foundation to send the blood samples of 30 underprivileged Filipino CML patients with possible genetic mutations to a state-of-the-art testing facility in the University of Adelaide in Australia. This was an unprecedented initiative that put the Philippines in the international CML map and, more importantly, helped improve the treatment of underprivileged Filipino children with CML. What was never done before anywhere in the world, TBM repeated two more times in 2012.
On behalf of TBM members and their families, I thank all the individuals and organizations that continue to support us through the years. However, well-meaning multinational pharmaceutical companies and foreign health institutions can only provide so much assistance. I am appealing to the Philippine government to fulfill its promise of Universal Health Care by helping CML patients gain access to affordable treatment and monitoring.
I have been a CML advocate for seven years now and have counseled many gravely ill children. Yet I often feel that it is the ailing children who are actually counseling me. Once while trying to cheer up a child with CML, I said he is special because his disease is rare. The child, in all candor and innocence, replied, “I don’t want to be special. I just want to be a regular child who can play, go to school and have fun.” I will forever remember and cherish this child and all the other children suffering from CML.
Rod N. Padua is the president of Touched by Max Philippines. The ONCOURAGE Health Information Advocacy promotes public awareness and continuing medical education on the prevention, detection and management of cancer and blood disorders. It is a collaboration between the Philippine Society of Medical Oncology, Philippine Society of Hematology and Blood Transfusion, the Philippine Charity Sweepstakes Office, Philippine Foundation for Breast Care-Kasuso, Touched by Max Philippines, Balikatang Thalassemia and Novartis Oncology Philippines.