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Lessons from the First Pandemic: The Clint Spencer Clinic and the fight against HIV

Written by Marybeth Kotrodimos
Featured photo: Dr. Bruce Shiramizu; Dr. Cecilia Shikuma; Dr. Dominic Chow, researchers at the Hawaii Center for AIDS. Vina Cristobal photo.

In recognition of December as HIV/AIDS Awareness Month, we asked Cecilia Shikuma, MD, Director of the Hawaii Center for AIDS (HICFA); Dominic Chow, MD, PhD, MPH, Director of the Clint Spencer Clinic and Investigator for HICFA; and Maya Barney, BSN, RN, Clinic Manager of the Clint Spencer Clinic if they would take time from their very busy schedules to talk with us about the work they do, the progress Hawaii has made in combating HIV, and how HIV relates to the Coronavirus pandemic.

HICFA – formerly known as The Hawaii AIDS Clinical Research Program (HACRP) – is comprised of The Hawaii AIDS Clinical Trial Unit (HACTU), several specialized laboratories; international collaborations in Vietnam, Thailand, and the Philippines; and University Health Partners’ (UHP) Clint Spencer Clinic, which services about 650 patients, including about 250 on Maui and The Big Island.  The contribution these researchers and clinicians have made to the control of HIV and AIDS in Hawaii is immeasurable.

Dr. Shikuma recounted how the Clint Spencer Clinic began by providing medical care to HIV patients participating in the early HIV medication trials held by the AIDS Clinical Trials Group which was a part of HICFA.  When they completed their trials the patients were given a list of outside physicians to treat them.  “But the patients would never leave,” she said. “We therefore continued to provide their medical care, and this dedicated group of individuals living with HIV formed the core of our research participants who made our research program a success.” Over time, she said, there were more and more patients doing that. “Then, fortunately, we got Dr. Chow who was willing to turn this into a real clinical operation to provide primary and specialty care.”

“This was the late 80’s and early 90’s,” Dr. Chow said. “To be fair, a lot of our patients did not feel welcome at many physicians’ offices and clinics, so they struggled to get care elsewhere. Clinical trials were their main source of treatment when nothing else was available.”

“Good HIV medications were not available until 1996,” Dr. Shikuma explained. “HIV care is very specialized, and a lot of doctors just didn’t have the training to treat these patients.”

“There were meds,” Mrs. Barney said. “They just weren’t that great.”

Addressing the goal of Hawaii to Zero (Zero new HIV transmissions, zero deaths from HIV, and zero stigma toward those living with HIV), Dr. Shikuma said, “Regarding deaths, I think we are very close. No one with HIV should be dying of HIV related infections. While there are some added medical challenges, individuals living with well controlled HIV can now expect to live as long as their HIV-negative peers.

“I think the major research goal is currently to cure HIV,” she said, adding that this is a difficult thing to achieve since the virus works its way into the human chromosome. “So essentially, it becomes part of you, and to yank that little piece of genetic viral material out – it’s very difficult and very challenging.”

She said that Dr. Chow and Mrs. Barney are very focused on preventing new infection by following the procedures and guidelines for PrEP (or Pre-exposure Prophylaxis), a prevention method used by people who are at high risk from getting HIV infection.  Dr. Chow added that they are very lucky to have Dr. Elizabeth Kiefer, another member of the HIFCA/UHP faculty, with her expertise with PrEP.  About 60 to 80 of the people who receive services from the clinic are PrEP patients.

Hawaii has been recognized for being highly successful in its struggle to control HIV, and the work of the people in the Clint Spencer Clinic and HICFA has been recognized as being very instrumental in achieving that success.  But Dr. Shikuma is quick to credit others and other factors for our state reaching such low numbers of transmission and death due to HIV-related causes.

“We have a very close-knit community with fantastic AIDS service organizations and a very responsive Department of Health (DOH).  I think the State has done very well,” she said. “There are a lot of resources available in Hawaii to individuals living with HIV.

“If you have no medical insurance, for example, the State will provide you with medication free of charge and will also provide physicians and medical clinics with blood tests on everything that is needed to provide good medical care for that individual,” Dr. Shikuma said. HIV patients “are very well taken care of. I’m very proud of our state.”

“Those of us in HIV work,” Dr. Chow said, “work very closely with the DOH to make sure that those people who are positive are getting appropriate medicine, and not only medicine, but also to make sure that all their needs are met. We have to make sure they have shelter, they have food, and there are social networks that can help them with taking their meds.”

“Our state does a really good job of collaborating between different agencies, working really closely together,” Mrs. Barney added, “no matter where the patient enters the system.”  The state is also working to make the PrEP program “more robust,” she said.

She talked about how those at the clinic make the effort to “normalize” the sexuality of the HIV patients they see as well as combat the stigma of HIV. She said they have “hard conversations” with their patients, “letting them know that they will support them no matter what” but they need that personal information from the patients “or we’ll miss something.”

As for the impact that the coronavirus pandemic has had on the HIV community, Dr. Chow reported that “the rate of COVID among people with HIV is lower.  We’re not sure if it’s because of the antiviral medications that they have already taken, or if it’s because people with HIV tend to be less reckless in their social networks. For our patients, the rates are lower, thankfully.”

Dr. Chow also said that we have learned much about how to handle the coronavirus from our experience with HIV. “How to treat and manage COVID is actually very similar.” In dealing with other disorders, he said, we “have learned a lot from HIV in terms of the networks that were formed. AIDS Service Organizations that cropped up in the 80s and 90s are models for how to deliver care to the rest of the world.  A lot of what we learned from HIV is what we are currently using in managing the second pandemic, which is COVID.”

Dr. Chow said he has felt “really affected by that first pandemic” since he was in high school, and that experience drove his desire to work on HIV. As part of the University of Hawaii, he said, “we are researchers trying find a cure for HIV.”  Also he is driven to fight this disease because “the patients are really committed. I can’t think of another disorder for which patients would come into our clinic to willingly take experimental medications or to do diagnostic laboratory tests to further science.”

Dr. Shikuma said that she loves her work with HICFA. “It’s really challenging.  I like that what we do really contributes to enhancing the medical care of a community of people that probably would be underserved in Hawaii.”

Mrs. Barney said that one of the things that drives her to work in HIV is that an uncle, who she was very close to, lost his life to this disease when she was 8 years old. “I was very aware of him and of his diagnosis. When he died it was incredibly devastating,” she said. She called her work at the Clint Spencer Clinic, “one of the most satisfying jobs I’ve ever had in my life.

“I love what we do here,” she said, “I love the impact we make on patient’s lives. Building relationships with our patients and being the constant support that they know they can count on is a really nice feeling. They make an effort to get to know us. They ask me about my kids. I am just very thankful to be able to work in a community and be somebody who, hopefully, is positively contributing and making our patients lives a little bit better.”

Dr. Shikuma said that she is “very grateful to our HIV community because they always stepped up and participated in research, saying, ‘It might not benefit me, but maybe it will help someone else’. They work to make all our lives better.”

“What I’ve seen is hope,” Dr. Chow said. “When I was in high school, we really didn’t see an end in sight, kind of what we see with COVID. But with hope, and with the commitment of the patients, HIV is no longer a death sentence. It’s a disease that can be managed.  I’m hopeful that we can find a cure soon.”

“If you have a diagnosis of HIV,” Mrs. Barney said, “I urge you to think of this as a chronic medical condition and just take care of it. The diagnosis doesn’t define you as a person. It is just something you need to address. And if you need PrEP, there are so many resources available.  Please make sure you are taking care of yourself and protecting yourself, so that we can work toward that goal of getting Hawaii to Zero.”

“Together,” Dr. Chow added, “we can all get to zero.”

For more information on how to get help or to prevent HIV, contact the Clint Spencer Clinic at 808-692-1310.

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