About 3,500 Filipino children are diagnosed with cancer every year, with a mortality rate of 80%. The social cancer is not knowing.

THE WALLS of the playroom are splashed in full, bright hues of red, yellow and blue. On the left are shelves of books, stuffed animals and all sorts of toys. Tacked to the bulletin on the right are children’s artworks: Cats and rabbits formed from clay and stuck to bond paper, a jellyfish with tentacles made of yarn, and a googly-eyed dinosaur called Stephen the Stegosaurus.

Grace* is cutting out circles to make badges for a paper sash. She is 13, but is small for her age and sits at the low table. A gray beanie fits snugly on her head. There are no signs of hair.

A volunteer from Kythe-Ateneo pokes his head through the door, announces: “The Ateneo Blue Repertory is performing. Come out and see!” Grace grins from under the disposable surgical mask and gets up to grab her crutches. This is the first time we notice that her right leg is not there.

In the pediatric ward, the student actors are delivering a series of Disney songs. This is just one of Kythe’s special parties for the kids; the organization is comprised of hospital volunteers for psychosocial formation. Some of the kids they volunteer for are diagnosed with cancer.

The students are dressed for the roles; they’re Anna, Ariel, Pocahontas, Simba, Aladdin and Jasmine. A Nemo with a bulging belly rushes to take photographs. The kids clap their hands, their parents smile, and there are Kythers—Snow Whites and Incredibles and Wilderness Explorers—at every bedside. At the end of the hall is the isolation room where Grace is spending the week.

Diagnosing the problem

Grace came all the way from Leyte with her sister for her treatment; if Super Typhoon Yolanda had not delayed the results of her first biopsy, they could have prevented the cancer from spreading.

She is one of many; a United Nations report found that every year, about 3,500 Filipino children are diagnosed with cancer. As of January 2013, it is the third leading cause of death in the Philippines.

Cancer happens when the cells of a body start dividing uncontrollably, forming malignancies and moving to other tissues. The process, called metastasis, leads to death—an internal betrayal from what is supposedly the basic unit of life. Cancer is the body at war with itself.

According to a report from Interaksyon, eight out of 10 kids lose the battle, often due to financial problems. The statistic is a whopping reverse of the 80% survival rate that Western countries boast. The most common cancer in children is leukemia, which has proven to be curable.

Dr. Amy Dy, pediatric oncologist and founder of the Cancer Treatment and Support Foundation, pegs expenses to reach over a million pesos in private hospitals. In public hospitals, the government shoulders bed and lodging, meals and doctors’ fees. Patients have to shell out money for medicines in chemotherapy and services—like magnetic resonance imaging scans or surgeries—that are not available in their hospitals.

Drug price ranges from P50 to several thousand pesos per vial. The frequency of purchase will depend on how many rounds of chemotherapy are needed, and how long the treatment lasts.

Dy says there are plenty of patients who could have made it. “Because we cannot buy the medicines, we cannot afford some procedures… We lose them,” she says. “Not because they really had to die already, no. They just couldn’t afford [treatment].”

Government prescription

Cancer patients in the same situation as Grace usually seek financial assistance from government institutions such as the Philippine Charity Sweepstakes Office (PCSO), the Office of the Presidential Management Staff and the Department of Health (DOH). Dy says that in the current state of the economy, it is difficult for the government alone to provide for medicine.

Another government-owned and controlled corporation, the Philippine Health Insurance Corporation (PhilHealth), developed a program called the Z Benefit Package in 2012. Available to PhilHealth members and their dependents, the package grants P210,000 to child patients with acute lymphoblastic leukemia. The amount is supposed to cover a complete course of chemotherapy, essential laboratory procedures and blood support.

Dr. Melanie Coronel Santillan of the PhilHealth Product Team for Special Benefits explains that the corporation’s primary mandate is to provide cancer support in terms of giving financial risk protection. “For all disease conditions, a member of PhilHealth should not get impoverished or be driven into poverty when hospitalized for an illness,” she says, “especially catastrophic illnesses such as cancers.”

Rough road to recovery

Santillan identifies low support value as a problem they encountered; patients and their families are led to source funds from out of their own pockets. Dy says that there are donations, policies and support from DOH, PhilHealth and non-government organizations, but “it’s still not enough.” Then there are families like Grace’s, who do not subscribe to insurance, relying on PCSO funding that often comes late.

For a treatment worth a million, the government shoulders P210,000, close to the P200,000 average household income that the average Filipino family earns in a year. However, the 1.6 million families living in extreme poverty earn less than P200 daily.

There is also a lack of information technology support. Santillan says that there is no tracking system for important data like mortality rates, follow-ups and transfers. Healthcare resources, such as equipment and manpower, are concentrated in the National Capital Region, making accessibility a challenge for those from far-flung areas. There are little over 20 actively practicing pediatric oncologists, most of them based in Metro Manila.

Therese Tiosejo, a psychology junior and the vice president for Advocacy at Kythe-
Ateneo, also notices a lack of basic facilities, like wheelchairs, and cramped physical spaces for the patients. “It’s sad, because a lot of children have cancer, and they have to come here from the province,” she says. “Sometimes, the hospital can’t accommodate them… These are lives at stake.”

Lastly, Santillan considers the political climate a challenge in cancer care. “Health priorities, especially for cancers, change depending on the current leadership and political health agenda,” she says. “For example, sin tax has been on the agenda for several years, but it is only during the Aquino government that it was approved.”

According to her, improvements in the cancer care situation in the country after the Z Benefit Package implementation cannot be measured as of now. “Utilization of the Z Benefits for leukemia in children has not been maximized because of the challenges [mentioned earlier],” she says, adding that adjustments to reflect financial support needs were underway.

Waiting room

“Children with chronic illnesses have a different outlook on life. It’s very mature,” says Tiosejo. “And as a child, it’s kind of hard to take in [your condition], but they’re able to do it. The strength that they have to actually smile after knowing what’s happening to them, what’s happening to their body, after every injection, after every operation that they have… It takes a lot of maturity to be that way.”

But Tiosejo likewise adds: “Just because you have cancer doesn’t mean that you don’t deserve a childhood.”

At the table, Grace has come a long way from home. She is shy, but is not afraid to answer questions, ask for the scissors and grin under the mask. She has come a long way from where she was a year ago, believing that the pain in her foot was a mere sprain. But Grace is a good singer, her sister says. She wants to be a teacher in the future.

Dy expresses hope for the future because, with the help of the Food and Drug Administration, innovative treatments, like gene therapy, are now available. There is a new batch of young oncologists, and she continues to encourage them to pursue their profession, to work in provinces.

The masks do not filter the children’s laughter as Tiosejo speaks. “A lot of people asked me, ‘Why do you stay in such an org? Why do you stay in an org that’s so depressing, [when] you know [that] they’re going to die?’” she says in a mix of English and Filipino.

“It’s this misconception that we’re here because they’re going to die. We’re here, we’re Kythers, because they have life.”

Editor’s Note: The name of the child has been changed for her privacy.