Living with Aids in the Inland Empire

Living with Aids in the Inland Empire

S.E. Williams
Contributor 

Editor’s Note: This year, the IE Voice/Black Voice News, is once again partnering with Deputy Director Michelle Burroughs and her team of talented interns at UCR’s Center for Healthy Communities to highlight health issues impacting the inland region. The new series begins with a look at HIV/AIDS from four demographic perspectives—each is the story of an inland area resident living with the virus. Two of their stories appear this week, the other two will be featured in next week’s publication. 

Saturday, December 1, is World AIDS Day, a day set aside by the international community to raise awareness of the AIDS pandemic caused by the spread of HIV, while also mourning those who have died from the disease. On this 30th anniversary of World Aids Day, the theme is “Know Your Status.”

According to the Kaiser Family Foundation HIV remains the leading cause of death world-wide. “Approximately 36.9 million people are currently living with HIV, and tens of millions of people have died of AIDS-related causes since the beginning of the epidemic.”

According to the Joint United Nations Programme on HIV/AIDS (UNAIDS) project there has been significant progress in the treatment of the illness since 1988. The good news today is–three in four people know their status, however there is still much work to do. There is a growing need to reach people living with HIV who do not know their status. In addition, once individuals learn they are HIV positive, they must also be linked to quality care and prevention services.   

The agency noted, “HIV testing is essential for expanding treatment and ensuring that all people living with HIV can lead healthy and productive lives.”

Sadly, stigma and discrimination still discourage people from taking an HIV test. Far too many still only get tested after becoming ill and symptomatic. 

Locally, its been a year since Riverside Public Health officials reported on the dramatic increase in the number of people in Riverside County living with HIV/AIDS. The report showed a staggering 51 percent more people are living with HIV/AIDS in the county than was previously reported. 

Although the staggering increase was largely attributed to a change in how the data was collected, the numbers raised eyebrows. This was because previously, there were 3,252 cases reported for 2016 (the latest figure available) compared to 5,522 based on the new calculations for the same period.

“Those of us working to address the health needs of people with HIV/AIDS have speculated that the demand for services was greater than the statistics illustrated,” said David Brinkman, Chief Executive Officer of Desert AIDS Project in Palm Springs. “We now have even more accurate data to better target our prevention and care efforts and evaluate what resources will be needed in the future.”

According to the Riverside Community Health System, in 2016 there were more than 5,500 inland area residents living with HIV or AIDS in Riverside County and since 2010 no less than 245 people a year are diagnosed with HIV.

The Centers for Disease Control has stressed that HIV transmission cannot be eliminated if individuals do not know their HIV status (i.e., whether they are HIV positive or HIV negative). An HIV test is the only way to determine if a person is living with the virus. Once an individual knows he/she is living with HIV, it is imperative they do all they can to eliminate the likelihood of transmission. 

Approximately 70 percent of new HIV infections each year occur among men, though women are also impacted. Men who have sex with men represent the largest proportion of new infections, followed by men and women who acquire the virus through heterosexual sex and injection drug use. More than half of new HIV infections occur among African Americans, while Hispanics are also disproportionately impacted. Associate Professor and UCR HIV Researcher Brandon Brown has also argued that interventions are urgently needed to reach older adults as well. 

“More than 1 million people live with HIV in the United States, with as many as 25 percent likely unaware of their HIV status. The Coachella Valley holds more than half the people living with HIV and AIDS in Riverside County, California’s fourth-largest county by population. Approximately 24 percent of people living with HIV in the Coachella Valley are aged 60 or older.”
UC Riverside Study—How Age and Ethnicity Impact HIV Testing

Following are the compelling stories of two inland area residents living with HIV.

Living with HIV: Aging with the Illness

Lilian Ortiz
Contributor

In the 1980s, Human Immunodeficiency Virus (HIV) was a mysterious illness that weakened the immune system of an individual and led to the development of Acquired Immune Deficiency Syndrome (AIDS).   

The fear of being diagnosed with a deadly new disease took over the lives of many people. Not only did fear of an inevitable death persist, but the rejection, stigma, shame and discrimination from the community was also present. 

Throughout the years, attention has been focused on the HIV crisis of the 80’s as well as the transmission and prevention of the disease, but what about the people who survived the epidemic and are aging with HIV and AIDS?

Dr. Brandon Brown, a community based participatory researcher and Associate Professor at the University of Riverside’s Center for Healthy Communities, said many older people who have HIV have been living with the virus for a while. It is also common he added, for older individuals to be diagnosed with HIV later in the course of the disease because many don’t realize that older people are still sexually active. 

Depression, loneliness and cognitive decline are challenges faced by many older individuals living with HIV due to both the loss of social support, and the fact they experience the disease of aging decades earlier compared to those without HIV. 

“Survivor’s guilt also poses a challenge for older individuals who lived through the 80’s crisis and have had all their friends and loved ones die from the disease”, says Dr. Brown.

Brown remarked that older individuals living with HIV have a strong sense of community in Palm Springs, which is the location of his research. He explained that people from different parts of the United States, come to Palm Springs (Desert Migration) to retire in a more open community of older people living with HIV, which many younger individuals may not have. Brown leads his research in collaboration with the HIV & Aging Research Project-Palm Springs (HARP-PS). 

Jeff Taylor, a long-term HIV survivor, Executive Director of HARP-PS and Community Project Leader works closely with Dr. Brown as a co-Lead. Taylor described the early days of HIV as being filled with “an incredible sense of fear and paranoia among all people.” Not only did the fear of being infected with HIV exist, but the looming fear of the stigma was there as well, especially in the gay population. 

Jeff Taylor

Taylor acquired HIV sometime in 1981-1982. At the time, he was an exchange student, living overseas in Japan, he would later find out that people he dated had HIV. When he came back to the United States, the news of HIV had broken out—it was everywhere.

It was not until 1988 that Taylor received his HIV diagnosis. During a routine checkup, Taylor recalls his dentist examining his mouth. “Back then they did not wear gloves, I could taste the soap on her hands.” As the dentist noticed something unusual in his mouth, she promptly excused herself and returned a few minutes later. 

When she returned. she was dressed from head to toe in a white disposable biohazard containment suit. She said, “I don’t mean to alarm you, but I noticed you have some white hairy fuzzy plaques on the inside of your mouth and tongue that is often a sign of a weak immune system, I suggest you get tested for HIV”.

Luckily for Taylor and many others, the HIV testing process could be done anonymously. At the testing site, he found it strange that he was asked what he would do if the test results came back positive. After responding by saying he would seek treatment, he was blatantly asked “Would you kill yourself?”  In order to be allowed to take the test, Taylor recalls trying to convince the test administrator that he would not attempt suicide. 

At the time, the waiting period for results was an excruciating two weeks. When he returned for the results, Taylor was asked the same question again.  Finally he was told, “I’m really sorry to tell you this but you have HIV, the virus that causes AIDS, you have about two years to live. I suggest you go home and start making arrangements”

Regardless of his diagnosis, Taylor was determined to live. In the years to follow, he did anything within his reach to improve his health. “I watched friends go through this, I noticed they lost a lot of weight, and they looked like concentration camp survivors.”  Knowing this, the first thing he did was buy a gym membership. 

When Taylor was diagnosed, he had to change his lifestyle, he became a health fanatic and began to work out, eat healthy, and drink protein powder. Taylor did everything he could to maintain his weight and combat wasting. He never smoked or took any drugs.

Taylor began to look into treatment options available at the time—there were few options. Taylor recalled, “There wasn’t much information about resources, this was before the internet, there wasn’t easy ways to access information.” 

It was during a town hall meeting that he learned about the work taking place at Western University—it was conducting all the government funded research as part of the Nationwide AIDS clinical trial. He entered a study for AZT, the first drug that was available, and that was his stepping-stone into gaining access to research. “I was doing it purely for selfish reasons, I knew it would help other people, but I was doing it as a desperate bid to stay alive, I guess it worked because I’m still here and I just went sequentially from trial to trial,” says Taylor.

In 1992, Taylor was living in San Diego. One of the top HIV researchers in the world headed a research program in the city, and that is exactly where Taylor wanted to be. During this time, he came down with Pneumonia. Doctors were not able to get his lungs to inflate, the Pneumonia had eaten away at his lungs. 

At the time he was dealing with this, he was told he only had two T-cells—these special cells help fight off infections and they are destroyed by the HIV virus. A normal range for T-cells is between 500-1,500. 

After undergoing lung surgery as a result of the Pneumonia, he weighed only 120 pounds. He was put on anabolic steroids and in a matter of six weeks, he gained 30 pounds and his T-cell count increased to 300.

In the earlier years of the epidemic, doctors began to take notice that patients who were bodybuilders, and specifically those taking anabolic steroids, were not getting sick. It was because of this observance that other patients like Taylor began to take use of them. 

Aging with HIV means encountering health problems earlier in life than they should occur.  Taylor mentions cognitive dysfunction as being a real issue faced by people living with HIV. “People develop early Alzheimer’s, or something similar—it is a huge fear. It has been documented and it is happening [to people with HIV] early on in their 40’s and 50’s. It is a real concern to address”, said Taylor. 

According to Taylor, living with HIV means that everything is accelerated, he also suffers from acid reflux, a disease that his 88-year-old grandmother was recently diagnosed with. 

Through his advocacy work, Taylor is well aware of the stigma that still surrounds HIV.  However, he feels because he advocates for himself and others he does not feel as affected by it. In the past, according to Taylor, he self-stigmatized “I was very cautious about entering relationships with people, and using condoms, it affected who I dated and what I did with them.” 

Today, Taylor is an inspiring advocate for HIV. In recent years he has been busy and has managed to channel his fear, frustration and anger into activism. In his view, this is healthy coping mechanism for the depression, isolation and unresolved grief that he faces. 

A lot of change has occurred since HIV surfaced in the 80’s. In the early years of the disease, the diagnosis meant that an individual’s life would be cut short. Being diagnosed with HIV is no longer a death sentence. There are effective treatments available. People with HIV can live long and happy lives. 

Lilian Ortiz is a former UCR School of Medicine’s Center for Healthy Communities Intern and a Cal State University of San Bernardino alumnus with a Bachelor of Science degree in Healthcare Management. She intends to pursue graduate studies in the field of Public Health.

Living with HIV: A Black Perspective

Mohamed Jawara
Contributor

In the 1980s, being diagnosed with Human Immunodeficiency Virus (HIV) was a death sentence. Not much was known about the disease, and there was no effective medicine to treat the illness. 

After being diagnosed with HIV, it was only a matter of time before the disease progressed to Acquired Immunodeficiency Syndrome (AIDS), which weakens the body’s immune system and increases the chances of being susceptible to other opportunistic diseases such as Pneumonia. 

Over the years, researchers have made great strides in shedding some light on the transmission, treatment and prevention of HIV. 

Although there have been many achievements in the field of HIV research, individuals that suffer from the disease still experience shame, stigma, rejection and discrimination in the communities where they reside. To provide context, Albert, a twenty-eight-year-old African American male, shares how his life has changed since his HIV diagnosis two years ago. 

According to Albert, his partner at the time suggested he get tested for HIV, but Albert was not sure why his partner was so persistent. When Albert went to get tested, the result from the blood test came back negative. Nevertheless, he later went ahead and got tested for the second time—the result was inconclusive, meaning it was neither negative nor positive. At his third test, the result showed Albert was positive for HIV. After he tested positive, Albert’s partner revealed to him that he was also HIV positive and had withheld his HIV status from Albert while they were together. 

A sketch by Albert

Initially, after being diagnosed with HIV, Albert did not have a strong relationship with his family. However, over time, Albert’s relationship with his family has improved and they have become more accepting. 

According to Albert, “Later on my mom tried to get to know the real me, to understand that the only son that she has is going through this crisis.” There was even a point when Albert’s mother purchased tickets for him to see his favorite artist, Beyoncé, and he was very happy and surprised by his mother’s gesture towards him. 

Albert’s friends on the other hand were not as supportive as he would have liked them to be.  Albert believes that the lack of support from his friends may have stemmed from the stigma that surrounds HIV. The support that Albert lacked from his friends was gained from local HIV support groups in his community. Albert stated that “The Foothill Aids Project (FAP) and TruEvolution are the only support groups that I have in Riverside. TruEvolution and FAP have been doing a lot for me and I can’t wait to see what they can do for me in the future.” Through these support groups, Albert is able to receive HIV therapy, transportation, food vouchers, and also housing assistance. 

When asked how HIV has impacted his love life, Albert stated, “I feel like now I’m in a place where I have this illness, and no one wants to be with me. That’s what’s missing in my life and I feel like that’s what I need. I know that I am only getting older.  I just hope that someone will love me for who I am with my illness.” 

Albert mentioned that perhaps the reason others are afraid of being in a relationship with someone who has HIV can be attributed to the stigma and misconceptions surrounding the illness. “They [researchers] have proven that HIV people can be with negative people and negative people can be with HIV people. An HIV positive person can have a sexual relationship with another HIV positive person so long as protection is worn.” He added, “You cannot get HIV by eating behind someone and you cannot get it by kissing or through saliva.” 

Albert believes that through education, some of the misconceptions about HIV that exists in many communities will be dispelled and this will lead to a waning of the stigma associated with the virus.

Despite the challenges he has faced, Albert considers himself a survivor because he has lived with HIV for two years now. He is staying strong and very optimistic about the future. Explaining his optimism Albert shared, “I want to be here because I have nieces and I have a nephew on the way.”    

Albert willingly offered advice to younger people living with HIV. “I advise them to take their pills and don’t let family stress you. You’re going to have problems with depression and suicidal thoughts, but don’t give up. If I can do this for two years you can do this for two years. The more you can outlive this thing, one day they are going to have a cure and I just hope that they do come out with one.”

He concluded, “For those that are out there that don’t know their status, I recommend for them to go get tested—know who you are and know your status because your life is worth it. We are humans and we are going to encounter problems—but, just pray. If you have faith, things will get better.” 

If you or someone you know suffers from HIV/AIDS; or, you would like to get tested, please reach out to the TruEvolution via https://TruEvolution.org and Foothill Aids Project via http://fapinfo.org for more resources and support. If you have questions or feedback, please feel free to email chc@medsch.ucr.edu.

Mohamed Jawara is a University of California Riverside alumnus with a Bachelor’s of Arts Degree in Political Science and Law & Society. He currently works at the UCR School of Medicine’s Center for Healthy Communities and contributes health content for the I.E. Voice Newspaper. Mr. Jawara intends to pursue graduate studies in the field of Public Health and other health related fields.

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