Hope for the Future: Hawai’i to Zero Conference resumes in person with inspirational stories

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Adam Castillejo, Marc Franke and Paul Edmonds were special guests at the Hawai’i to Zero conference on September 21. They shared their stories of overcoming HIV.  

When Adam Castillejo found out about his HIV diagnosis in 2003, doctors told him that he only had a few years to live.

“It’s kind of challenging for anyone,” he said. 

Castillejo, who hails from London, was also diagnosed with stage 4 cancer in 2012 with Hodgkin’s lymphoma disease and underwent a vigorous chemotherapy regime for years, while being denied a bone marrow transplant due to his HIV diagnosis.

“Being HIV, you are three times more likely to develop cancer,” he added. “I was diagnosed terminally ill in 2015. There were not many choices for me – and I realized that HIV was stigmatizing me.” 

Though the circumstances seemed dire for Castillejo, he received overwhelming support from his partner, who helped him to resume to normal life. 

“[He told me], ‘HIV doesn’t need to define you,” Castillejo recalled. “It doesn’t define our relationship. And that was something really important for me because a lot of people have discrimination and stigma.” 

Eventually, things looked up for Castillejo. A new medical team stepped in and allowed him to have the transplant he needed. The operation proved successful, and in 2016, Castillejo was confirmed to be cured of HIV. 

Castillejo, along with Paul Edmonds and Marc Franke, who were also cured of HIV, shared the stage at the fifth Hawai’i to Zero Conference (H20) at the Ala Moana Hotel. This event marks the first in-person conference since the COVID-19 pandemic. They shared their stories, in hopes that it would encourage those living with HIV (and/or) AIDS or working towards a cure. 

Edmonds, who is from California, had been diagnosed with HIV for more than 30 years. He witnessed the beginning of the epidemic in the 1980s, and how it plagued his community. Edmonds was diagnosed in 1988 with acute myeloid leukeumia (AML) in 2018. His doctors suggested he seek treatment at City of Hope National Medical Center in Duarte, CA. There, his stem cell transplant donor had a genetic mutation that prevents HIV/AIDS, which led to his eventual cure in 2022. 

Franke, who is from Germany, lived with HIV since January 2011, and was also diagnosed with AML. He learned about Timothy Ray Brown, the first patient in the world to be cured of HIV/AIDS. Franke, who met his now-husband in the same year and was encouraged by Brown’s story, felt hope about receiving treatment. 

Franke relapsed with leukemia in October 2012, in which a stem cell donation was necessary, then received a T-cell donation in 2013 due to his chimerism being removed.  He stopped antiretroviral therapy in 2018. His donor encouraged him to go public with his story, in hopes to encourage others that they're not alone in their fight. 

“We want to give hope to people living with HIV today,” Castillejo said. “Don’t allow HIV to define you. I know it’s difficult, but people around the world are trying to find a cure for you out there. Stay strong and be positive.”

Other highlights of the conference included interactive discussions to start the conversation on curing those with HIV/AIDS in the state. Currently, Hawai’i has dozens of people diagnosed each year, according to the Hawai’i Department of Health (DOH). As of 2021, 64 people have been diagnosed with HIV/AIDS in the state. 

Dr. Cecilia Shikuma, who is the director of the Hawai’i Center for AIDS (HICFA), has been working for more than three decades to combat HIV/AIDS.

“The HIV epidemic is not over,” she commented. “We want to do everything that’s possible to drive HIV to zero, which means zero stigma and zero deaths.”

Since its opening in 1991 under the Hawai’i AIDS Clinical Trials Unit (and later became the Clint Spencer Clinic), HICFA has serviced more than 700 patients who are either infected or at-risk with HIV/AIDS. The clinic opened its current location in December 2015 on the John A. Burns School of Medicine’s Kaka’ako campus, where clinical trials and research also take place. 

“We participated in a lot of the advances, certainly in antiretroviral therapy,” she said. “So to us, it’s important that our HIV community participates in being the solution.” 

The focus for Shikuma is to provide solutions for those living with HIV/AIDS on the neighbor islands. Many of these individuals also have underlying health conditions on top of their diagnoses and have limited access to resources in their areas. She hopes that in the next year or so, the efforts will start to build momentum. HICFA sends a team to Maui and the Big Island each month to provide these services as more starts to develop. 

 “We talked about transportation being an issue,” said Shikuma, who also sees the stigma on HIV/AIDS as a concern. “As the HIV population ages, we're going to face more issues - increases in heart attacks, dementia, heart disease, liver disease. But we’re also going to proactively have to think about how to support this community. Curing HIV is the final frontier of this research endeavor. And I’m hoping to be able to have some thoughts as to how to make this a reality.”

To learn more about what HICFA is doing to eliminate HIV in Hawai’i, click here.