Francine Clement, a teacher on Guam, is weighing what might be the hardest decision of her life: whether or not to go off island for continued cancer care.
“I’m so torn,” she said.
Diagnosed with a rare type of the disease with less than 600 known cases, Clement said it was “so fortuitous” that she even received a diagnosis on Guam. Two years after her symptoms began, a doctor who recently moved to Guam from Houston just happened to walk by and look at her scan from Guam Radiology Consultants.
“Because he came from Texas, it was something he was familiar with. But he had never seen a case of it because of its rarity,” she said.
After having surgery at Guam Regional Medical City, she was told her cancer was back and she needed to seek further treatment elsewhere because there was nothing more that could be done for her here.
But leaving meant struggling with her insurance company. She eventually left without knowing whether her treatment would be approved. “I’m not going to sit on Guam and die waiting for them to figure out if they were going to cover me,” she said.
Back on Guam after 1 1/2 years in Los Angeles, Clement is once again faced with leaving the island for care. “I feel right now I can get better care back there,” she said.
But having to make that choice “sucks,” she said. “The hardest thing is being away from family. I just don’t want to be without my kids again.”
Clement is not alone.
'Everybody's journey is different'
“Everybody’s journey is different,” said Marie Borja Luarca. Luarca also made the choice to seek treatment off island after being diagnosed with breast cancer in 2005 at age 47, six months after her symptoms began. “Mammograms do catch it, but mine didn’t,” she said.
While Luarca’s insurance covered the cost of her medical treatment, she and her husband racked up $17,000 in credit card debt during their six-month stay in Hawaii. “We didn’t have a choice. You have to do what you have to do,” she said.
But navigating cancer care on island is complicated – it comes with more than just decisions on whether or not to leave the island.
Josette Marie Lujan Quinata, a social worker and advocate for cancer patients who combines “the medical information with the emotional support,” said a “disconnect” exists between local resources.
“We do have resource on island ... but they are all working independently of one another and isolated,” said Quinata.
“Instead of navigating through all of these resources, we are navigating through gaps,” she said.
Communication needs to be “streamlined,” she said. “It comes back to communication – providers aren’t sharing why or what to expect.”
Daphne Lujan, a caregiver by profession, found this out firsthand when her boyfriend was diagnosed with cancer. She said they had to wait to get his diagnosis because the doctor who was treating her boyfriend was off island. “We begged them to tell us,” she said. The social worker knew before they did, she said. "But she was like, 'I couldn’t tell you because I’m not the doctor,'" said Lujan.
Like Quinata, Lujan said what is needed is a “network” for cancer patients.
Cancer costs can be crippling
Dr. Samuel Friedman, one of four oncologists practicing on Guam, said the majority of cancer treatment and diagnosis can be received right here on island.
Yet the choice for many may come down to not only whether a patient can get the necessary treatment but if they can afford it, too.
“In regard to the financing of health care, every company would like to have care being done in an area that is somewhat more efficient cost-wise, if it is beneficial for a patient, because the family incurs expenses as far as a copayment,” said Frank Campillo, health plan administrator at Calvo’s SelectCare, one of the health care insurance providers that covers cancer care on island.
Friedman said that while treatment off island may be cheaper, it comes with added expenses. “If you can’t be treated on Guam, then you have to go to Hawaii or the mainland and that entails a whole new bunch of expenses for travel,” he said.
“The problem is, the knee-jerk reaction with the private insurance is 'go to (the Philippines)' because it’s cheap,” Friedman said.
Not so, contends Campillo. “The individuals are given the option; they are not forced,” he said.
The wide range of choices is matched by the high rate of cancer on island.
“The island has a rare and high incidence of cancer,” said Campillo. “Some people are really concerned about this. The University of Guam in conjunction with the University of Hawaii are conducting studies on this.”
What Friedman does agree on with Campillo is the cost of cancer can be crippling for many.
“The cost of cancer care is insanely costly. It’s one of the most expensive and shattering experiences one can have in many ways,” Friedman said.
Topping the list of expenses is the cost of medications used to treat cancer.
“Those medications are very expensive. Especially because of the drugs that are being used, and the companies are charging very high amounts,” said Campillo.
Some cancer medication can cost up to $200,000 a year, added Friedman. “It’s just madness,” he said.
'It takes a community'
For Clement and Luarca, the battle for their lives could not have been fought without an outpouring of support from family and friends. Both said they depended on donated leave in order to stay afloat financially.
Luarca worked at the Department of Public Health and Social Services at the time of her diagnosis and treatment, and said that between the donated leave from her colleagues at the department and donated leave by her husband’s colleagues from the Guam Department of Education, they were able to avoid bankruptcy.
Clement said she has been on leave for more than two years and still is able to receive a paycheck only due to the generosity of donated leave from her family and friends.
Quinata, who has worked with cancer patients from all walks of life, stresses that it takes a community to combat the disease.
But she believes strides can be made in offering cancer patients more support here on Guam and said it starts with listening to those who are at the center of the storm.
“The people out there need to hear from them, they need to hear from the actual people that are being affected,” Quinata said.
Change, she said, is possible.
“Can it happen? I believe it can,” said Quinata.