By Janice Nesamani
NORTHWEST ASIAN WEEKLY
When it comes to life-saving bone marrow transplants, Asians afflicted with blood cancer are at a disadvantage because there just aren’t enough donors on the registry. Filipino pop star Guji Lorenzana is calling for more Asians aged 18-44 to register to be donors and save lives.
It was February 2016, a day after Guji Lorenzana was married. The festivities had hardly died down, then his family learned Lorenzana’s mother was diagnosed with cervical cancer.
“It was an emotional rollercoaster — from the height of the wedding to finding out she had cancer,” recalled the popular singer, songwriter, and actor. His mother did chemotherapy and radiation and Lorenzana saw how strenuous it was for her.
“I wrote a song — Be Alright — to encourage, give her hope and decided to surprise her by releasing it on Mother’s Day in 2018,” he said.
Unfortunately, the cancer spread to her lungs and Lorenzana’s mother passed away in June 2018.
“That’s when my song took on new meaning. It became an anthem of hope and encouragement, not just for my mom but everybody going through the same thing. I decided to make a music video to honor my mom’s memory,” Lorenzana said.
The music video features cancer survivors and started to make some noise within the Filipino community. It soon grew into a campaign advocating cancer awareness and prevention, and Lorenzana found himself getting involved with organizations within the Philippines, Asia, and the United States. Recently, the pop star collaborated with the Asian American Donor Program (AADP) and Be the Match to make an impact in the Filipino and Asian communities.
“I started to learn about the disparity in registry numbers. There’s such a huge gap — only 0.4 percent of the registry is recognized as Filipino, which is sad because we have a huge Filipino community in the U.S.,” Lorenzana said. “Every three minutes, somebody is diagnosed with a type of blood cancer. If you are Caucasian, you have a 90 percent or better chance of finding a genetic bone marrow match. But in the Asian or Filipino community, that number goes down drastically,” he said. “Once you go into specific Asian ethnicities, it becomes much more difficult to find a match — whether it’s for the Cambodian, Vietnamese, or any other group. I encourage all Asian ethnicities to register as donors, it’s so easy,” he added. Lorenzana calls out to students in college, who have time to do this.
“I know students are eager to help and looking for encouragement, I encourage them to do so,” he said.
Treasurer and AADP Executive Director Carol Gillespie said, “Guji’s message is very powerful and personal. I believe his story will resonate with not just Filipinos, but people all over the world. I am really happy about this collaboration. It does take somebody with a personal story like that to be motivated to help.”
AADP started 30 years ago. Gillespie said,“We’ve been recruiting in the Asian American community for about 10 years, and realized other ethnicities needed our help and expanded to all ethnic minorities.” AADP is affiliated with and are partners of Be the Match registry. It hosts about 500 drives throughout the Bay Area and sometimes beyond Northern California. “We’ve been registering anywhere from 8,000 to 15,000 donors a year,” Gillespie said.
Lorenzana’s Be Alright campaign focuses on the Overseas Filipino Workers (OFW) community.
“We have a large community of Filipinos that live internationally and many of them form my fan base. I wanted to use my platform to inform them that they can be a big help and should register.
A lot of my fans live in the United States and it would be beneficial if they could realize the number gap and learn that becoming part of the registry could significantly help a Filipino brother or sister diagnosed with cancer,” he said.
Lorenzana acknowledges that becoming a donor does not top most people’s to-do lists.
“They don’t realize how easy it is. All they need to do is log onto join.bethematch.org/BeAlright and register. You get a kit in the mail with a cotton swab for your DNA. Return it and if everything matches, you get put on the registry. Then you wait. If somebody with a genetic match needs a stem cell donor, you get contacted,” he explains. To him, what holds people back from signing up is the lack of urgency and sometimes it’s not somebody close to them but a stranger that’s going to need their donation.
“Concerns people have are whether it is an expense, whether it is painful, and how long will it take.
For the most part, it doesn’t cost you anything, it’s not painful at all, and doesn’t take long to do. I need them to realize it is closer to home than they think.” Gillespie observes that in the Asian American community, the Japanese community has only 34,000 registered donors, while the Filipino community has 79,000.
“It’s going to be difficult for someone to find a bone marrow donor using those numbers. So, we continue outreach to all ethnic minority communities, addressing each group’s quirks,” she said.
Lorenzana is using his platform to get people involved and working closely with Be the Match.
“We are trying to plan several events this year. I suggested touring colleges on the West Coast and talking to Filipino organizations on campuses. We have something planned with Loyola College, Chicago. I manage artists, too, some of them are based in Los Angeles and are popular on YouTube and in the Asian community. I plan on getting them involved as an incentive to college students.”
Gillespie said, “Lorenzana and I talked about hosting mini-shows when he was in the U.S., I thought it was fantastic. These are the ideal people we want on the registry, the younger generation aged between 18 and 44.”
That’s because their bone marrow is more viable, transplant outcomes are better, and they are probably more willing than the older generation.
“Even doctors are selecting younger donors for transplantation. Colleges are a perfect venue and yes, we are going to work with him and get a little mini-show going. I think it will be fabulous and people will really love it,” she said.
Lorenzana also plans on starting a registry in Asia. “The world is a lot smaller today. I don’t think we need to concentrate only within the U.S. to find donors, we have facilities in Asia, too. Be the Match has partners in Singapore, Hong Kong, China, and Canada, and the Philippines is just a few hours away from some of those places. We can try and set something up so there are more Filipinos readily available to donate stem cells. That is why I’m targeting the OFW community,” he said.
“There is a plan for things we are trying to get going this year. It’s just starting now, but I foresee it continuing and we just want to get more people involved and raise awareness,” he added.
To register to be a donor, go to join.bethematch.org/BeAlright, or text the word BEALRIGHT to 61474.
Janice can be reached at firstname.lastname@example.org.
Waiting for a new lease of life
Martin Lintag worked as an accountant for an auctioneering firm in British Columbia. He played in leagues for 10-pin bowling, volleyball, and ultimate frisbee. He would lift weights daily or go for a jog. He coached kids in a 10-pin bowling league and served as a treasurer for a nonprofit that promotes the sport in British Columbia. In June 2018, Martin started getting tired quickly. By mid-June, he had strep throat and took a week’s worth of antibiotics, but didn’t get better. It was then that his family doctor suggested further tests, which showed his white blood cell counts were through the roof.
“I had just turned 30 on June 30, 2018 and I was diagnosed with mixed Phenotype Acute Leukemia on July 5, 2018. The two types of Leukemia I have are Acute Myeloid Leukemia and Acute Lymphocytic or Lymphoblastic Leukemia. I’ve been waiting for a match as soon as they started treating me, but at this point, there hasn’t been one. My mother is a backup, but she is not an ideal candidate because of her advanced age,” Lintag said.
“In the beginning, I felt I was physically fit and that would pull me though. Unfortunately, because I have been waiting so long for a match and with all the medications and chemotherapy, it’s been hard,” Lintag said.
Not finding a match soon enough has complicated Lintag’s situation.
“In November, I was in early relapse even though I had achieved remission back in September,” Lintag said. Last month, he learned his cancer cells had jumped from an early relapse of 4 percent to 60 percent. “They are offering only palliative care at this point. That changes things because in order to get a stem cell transplant, you have to be in remission,” he said. “Because my cancer is so active right now, I can’t get a transplant until I get back into remission.”
Lintag finds the strength to keep going through his parents, girlfriend, and friends.
“They help me with daily tasks, especially when I was having a tough time physically from the chemotherapy. They are my support group, they cheer me and keep me going.”
He urges people, especially those from the Asian community, to take the time to sign up as donors and get tested.
Martin’s family and friends have set up a GoFundMe page and will organize a fundraiser so he can explore treatment options outside Canada. To contribute, visit gofundme.com/martinlintagsupportfund.
April Cruz (name changed) works in the technology industry in Northern California and is mother to a little boy. She’s an active, outdoors person who’s always been interested in the medical field and heard about a donor drive.
“I figured it was an opportunity for me to help, and I decided to go ahead. It was a no-brainer.”
Cruz remembers the day she got a phone call and was told she was one of five potential donors and needed to do tests to see if she would be a match.
“I thought I was pretty lucky to be the match. There was no special diet, there wasn’t anything extra,” she said. The procedure Cruz had to undergo was an older hip extraction method which required an overnight hospital stay. Today, the more common method for bone marrow donations is Peripheral blood stem cell (PBSC) donations, which is a non-surgical procedure. Usually, donors are given injections of filgrastim to increase the number of blood-forming cells in their bloodstream for five days before the procedure.
“When I made my donation, I was in the hospital overnight and was back at work in a couple of days. What was amazing was that people knew this was an attempt to try to save someone’s life. They offered me vacation days, which I didn’t need. It wasn’t painful. There was some soreness, but I remember I took only Tylenol and was back at work,” she said.
“Whether it’s a day or two days, or a couple of years, it makes a huge difference to a person’s life or a family’s life. A lot of people don’t realize they can help people right now.,” she said. “It’s kind of like air. Imagine if you were the one person who could provide air for someone to live or extend their life. Why would you not do it?”