Access, Human Rights Matter:

World AIDS Day

By Zamná Ávila, Assistant Editor

Wade Cook is a recovering alcohol, methamphetamine and sex addict. He also is a man living with HIV-AIDS for more than 19 years. For a time, Cook believed his days were numbered.

Cook's story illustrates both the challenges and hope that will be addressed at this year's World AIDS day on Dec. 1. Studies show that the ranks of young people becoming HIV infected is growing—and growing because they were not witnesses to the massive number of deaths from HIV/AIDS at the height of the epidemic and the physical impacts treatment had on survivors.

“At the time, before some of the medicines that are out now,” Cook recalled, “people didn’t live very long. I expected to live out the rest of my days shortly.”

The 52 year old disabled art teacher contracted the disease in 1991. Three years later he became severely ill and ended up in a wheel chair. His health improved as new medications became available.

Since the mid-90s, the barriers to HIV-AIDS treatments, in terms of pharmaceuticals, have lessened in the United States. More medications are available that are more effective in fighting the virus, with less side effects. But, in addition to scrambling for funds in harsh economic times, AIDS advocacy and care groups still struggle with decreasing the number of new infections every year.

“There is a problem with access in the sense that so many people infected with HIV are walking around without knowing they are HIV infected,” said Paul Lovely, patient education coordinator with the Comprehensive AIDS Resource and Education Program, which offers medical treatment and case management services in Long Beach.

“We are doing a terrible job with testing people. Most people right now, if they get tested, they get tested because they go to a place that has HIV testing, such as the Center (Long Beach).”

According to a 2009 Kaiser Family Foundation survey 21 percent of people who are HIV infected and are unaware that they are infected cause about half of new infections. Moreover, the infection rates (bout 7 to 8 percent or 56,000 each year) have not changed in more than ten years. Most new infections are people younger than 30 years old, he said.

In Long Beach, there are about 6,000 people living with HIV-AIDS, according to the Los Angeles County Department of Epidemiology. About 1,500 people or 25 percent are unaware of their status.

Traditionally, education and prevention groups in different parts of the country have focused most of their efforts on encouraging condom use and practicing safer sex, but what many public health advocates are finding is that those efforts are not enough in combating the spread of HIV. People who are HIV infected must be identified and be placed on treatment in order to make a realistic dent in stopping the spread of HIV, but that cannot happen if they are undiagnosed, Lovely said.

In 2006, the Centers for Disease Control and Prevention recommended that every sexually active American should be routinely tested, but not many strides have been made in that area, partially because most health care providers are not offering HIV prevention as part of primary care to their patients.

The Kaiser Family Foundation found that about 82 percent of people they surveyed said their primary doctor had not ever suggested that they get tested.

Early detection and treatment, can lower the viral count, and make it less likely to infect others.

“Now, that doesn’t mean that you can’t infect other people, but if people are on HIV meds and their virus is controlled to very low levels, they are much less likely to transmit the virus to other people,” Lovely said.

San Francisco, for example, was able to reduce the numbers of new infections from 800 to 400 with a test and treat strategy from 2004 to 2008, according to a presentation provided at a recent Conference on Retroviruses and Opportunistic Infections. Lovely said, interestingly, other sexually transmitted infections had not been reduced, so it seemed that it wasn't that people in the city were practicing more safer sex, but that it was a result of the city taking a more aggressive stance on treatment.

There is more than one reason that HIV-AIDS infections continue to be an issue. Among them are emotional and mental health issues on the one hand and recreational drug use on the other are significant risk factors.

Cook, who has been sober for three years, grew up with an alcoholic mother in a very conservative Mormon family.

“So, I had a lot of deep self-hatred,” Cook said. “As much as I swore I would never do what my mother did, once I took the first drink, I didn’t have control.”

As a methamphetamine addict, he sees his behavior and the behavior of others as something that is driving the epidemic. What helped Cook turn his life around was an intervention by his former partner and friends.

“It’s been the hardest thing I’ve ever done... Even harder than being in a wheelchair for two years, because I’ve had to confront some of my deepest, darkest demons and secrets, and change all my behaviors that didn’t work,” he said.

It’s not surprising that most of the new infections are among young people, not only were they not witness to the devastating deaths at the height of the epidemic and the physical impacts treatment had on survivors, youths continue to be injected with negative messages from society, and often their own families, which often leads to self-destructive behavior, he said.

“In terms of young people, and this whole bullying focus and exposure bullying is getting,” said Cook, referring to recent news stories about bullying and teen suicides as a reaction to bullying in school. “All of that points to the fact that young kids need guidance and they need support … When I put myself in the shoes of somebody who didn’t know and (ask myself,) what would be most effective? What did I need when I was out there before I tested positive?

“And, what I needed was self-esteem. I needed to feel better about myself.”

However, often reaching out to youth can be a difficult task, especially when faced with the taboos fostered by parent and social roadblocks. Difficult but not impossible said Garry Bowie, chief executive officer of the Long Beach AIDS foundation.

Parents have the most influence, whether they know it or not, on their kids,” Bowie said. “About half of all new infections affect that age group, 15 to 24, and half of them don’t know they are infected.”

The “Just Say No” message is no longer enough, and more creative measures need to be taken, he said. Among some of the ways the foundation tries to reach out to youth, is the Project Red Paint event, which takes place each year in observance of World AIDS Day, which is commemorated Dec. 1 each year.

Project Red Paint is an HIV through art awareness campaign and contest the organization does in partnership with the Long Beach School District. Students are asked to create an art piece in any medium that includes a red ribbon, symbol of AIDS awareness.

“This is a great way to introduce HIV awareness through art without getting involved in sex education classes, because we left it up with the student, we left it up to the parents and we left it up to the teachers to approach the subject,” Bowie said.

The group also is using new technology in an effort to better relate to youths such as YouTube videos and chat rooms.

Still, there are other under-served communities that need attention. While HIV-AIDS continues to impact men who have sex with men, there is a growing trend of heterosexual people being infected with HIV-AIDS, communities of color, people with mental health issues and homeless people who are on survival mode, he said. For example, the rate of new infections among Americans of African descent is seven times higher than that of whites, Latinos have three times higher rates of new infections, according to the Kaiser Family Foundation.

Lack of funding and lack of innovative approaches in outreaching to these communities are some of the major challenges to stopping new infections.

“The only way it’s going to happen is that we bring educational awareness to those groups in a way that connects with them,” he said. “Let’s get in front of all groups with prevention and education and treat all groups based on their sensitivities to their culture. For instance, let’s not do the same prevention program to the Cambodian community as we are going to do to the African-American community; it’s not going to work.”

What's clear is that AIDS continues to be a reality, and that while medications are available, the long term impacts and effects on individuals still have many unknowns. Although people are living longer with the disease, a cure has yet to be found. With awareness must there must come action.

“Part of the power of World AIDS Day is to really confront stigma, to confront secrecy by speaking aloud and also gathering support,” said Cook, who for the first time is undetectable for the first time and taking steps to improve his life. “It’s a powerful experience any time I participate in any kind of event to see people who are affected and infected all gathering together. There is something healing about that.”

LB World AIDS Day Events (Dec.1)

(Long Beach) Red

Long Beach Mayor Bob Foster is promoting (Long Beach) Red, a rally at 5:30 p.m. in front of the Long Beach Performing Arts Center’s Terrace Theater.

The mayor will initiate the illumination of some downtown Long Beach’s notable structures with red lights. Participating businesses will donate a portion of their profits to four nonprofits: Long Beach AIDS Foundation, Wells House Hospice Foundation, The Center Long Beach HIV Counseling and Testing Program, and C.A.R.E. Program.

Details: www.LongBeachRED.com

Venue: Terrace Theater

Location: 300 E. Ocean Blvd., Long Beach

Details: www.lbaidsfoundation.org

Venue: Art Theatre

Location: 2025 E. 4th St., Long Beach