Out of Despair, Hope: Pam’s Story

Pam, at left, and my mother Earline having fun under an umbrella on a sunny day. (Photo courtesy of Priscilla Mensah)

With the right combination of medicine, a nurturing and loving support system, and adherence to a healthy lifestyle, those living with the HIV virus can live just as long, if not longer, than people uninfected by the virus. Years of successful treatment of HIV-infected individuals with “drug cocktails” of medications have prevented HIV from progressing to full-blown AIDS (acquired immune deficiency syndrome), and thereby robbed the HIV diagnosis of the death sentence it carried in the early years of the AIDS epidemic in the 1980s. And today, there are treatments known as PEP and PrEP that prevent the virus from fully expressing itself if a person has been exposed to it.

Even so, we don’t too often hear the stories of those living with the disease. Perhaps due to a combination of fear, shame, and a continued culture of silence surrounding HIV, the stories of those living with HIV often go untold. In trying to break this culture of silence and, frequently, shame that accompanies HIV, I interviewed my second cousin Pamela Bullock who is HIV positive.

Pamela, 59 years old, has lived with the disease for, in her own words, “nearly 21 years now.” She credits taking her medication regularly for her longevity. Like so many others that I have spoken to, she is quick to remind me that “HIV is no longer a death sentence.” Pamela adheres to a strict daily medication regimen of 800 milligrams of Prezista, 500 milligrams of Norvir, 50 milligrams of Edurant, and 50 milligrams of Tivicay.

In addition to her daily regimen, Pam says her “supportive doctors at Lincoln Center in the Bronx,” have been quick to treat any HIV-related illness, such as pneumonia, and thereby have kept her in good health. Moreover, Pam’s doctors explained to her that each person’s immune system was different and thus required different care. Pam sought out their advice when she was dating a man who, like herself, was HIV positive. She is grateful for a team of caring and thoughtful doctors.

Beyond the medical assistance that Pam has received, she has also been the beneficiary of social programs aimed at helping those with HIV enjoy a respectable existence in New York City. For instance, Pam lives in an affordable housing complex inhabited exclusively by those who have the disease. Pam notes joyfully, “I have my own studio.” This shows just how important housing is to wellness. At the very base of being well is being able to have shelter. To support herself, Pam has enjoyed modest modes of employment. For example, Pam has been a babysitter, and has also worked as a maid in a hotel and as a maintenance worker in a mall. Currently Pam is living off government assistance.

The more Pam and I talked, the more I learned. Though Pam and I speak regularly, we had never in great length talked about her personal life. Usually, she is more interested in my life, and how I am doing. One thing that I took note of was that Pam seemed to have gotten a new-found confidence after I “interviewed” her. There was something different about her when we were done talking. She almost seemed relieved.

The interview took place in Baltimore, Maryland, where my family members had gathered on the occasion of a memorial service for my great uncle “Paint,” and for a while it was difficult to talk. When Pam and I were finally alone, though, I asked her questions that I had always wanted to, but never had the courage to ask. She shared with me the unfortunate circumstances surrounding her diagnosis.

A combination of drug use and naivete were at the core of Pam’s being infected with the “virus,” as she refers to HIV. I could tell that in talking freely, sharing her story without feeling pressured, Pam was releasing a load off her shoulders. By the end of our impromptu interview, she even told her first cousin, who is my second cousin, that “I have the virus.” From that admission, I could tell that letting her tell her truth was therapeutic for her.

In the past, I had never heard Pam talk about HIV in any way. In fact, I found out that Pam had HIV only when I was in college. It was my mother Earline, her first cousin, who told me, and I was shocked when I found out. For many years I saw HIV as being a problem that “others” had. Little did I know that someone in my own family, whom I knew and interacted with regularly, had the virus. Yet despite all of that, here Pam was telling a cousin whom she is in contact with less frequently than me that she has HIV.

Although it is great that people with HIV like Pam can be so forthright, there are still issues that need to be addressed pertaining to the disease. For one thing, it’s been the case for many years that Black and Latino communities are disproportionately affected by the disease. For example, neighborhoods like Spanish Harlem, Bedford-Stuyvesant, and Crown Heights are seeing higher than normal rates of new HIV/AIDS infections. Why, I have wondered, is that the case? And what can be done to change those statistics?

Racism is a key factor, public health experts believe, in explaining such disparities. NYC Commissioner of Health Mary T. Bassett, writing in the New England Journal of Medicine, noted that in New York City, the rate of premature death is 50 percent higher among Black men than among white men, and that this gap reflects “dramatic disparities” in many health outcomes, including cardiovascular disease, cancer, and HIV. She added that “even as research on health disparities has helped to document persistent gaps in morbidity and mortality between racial and ethnic groups, there is often a reluctance to address the role of racism in driving these gaps.”

The effects of racism on health outcomes can range from the neglect a health care professional may exhibit toward individuals of color to the absence of social support networks. It has been widely noted that minorities are underrepresented in the health care professions, especially among the doctors who may be treating HIV patients of color. And those physicians and nurses who do treat HIV patients may not be culturally competent, that is, they may not have the ability to interact and be of service to those of different ethnicities.

Recognizing the impact of racism on health outcomes has made me re-examine my hypothesis which held that a culture of silence is likely to blame for the high incidences of new HIV infections in communities of color. Yes, there is a culture of silence in certain communities as it pertains to HIV. But I wonder: Doesn’t endemic racism in fact encourage people of color to avoid going public if they learn that they are HIV positive?

“Extended and creative educational campaigns”

It’s also important that the latest HIV prevention protocols be promoted across all communities. Dr. Catherine Derber, who holds a medical degree in infectious diseases from Eastern Virginia Medical School, notes that to prevent the spread of HIV in any community the “care continuum and treatment as prevention” are vital. She strongly advocates for the “PrEP and PEP treatment to reduce the disproportion of the disease’s impact.” New York City is actively promoting PrEP and PEP through advertising and public service outreach, and in public health clinics.

Finally, there has to be buy-in from communities in squarely addressing HIV and AIDS. Spencer Casseus, marketing and outreach specialist of Bridging Access to Care, Inc. of Brooklyn, New York, cited the extensive community outreach that the not-for-profit organization conducts to provide education, HIV testing and other services within the community.

“Extended and creative educational campaigns have been widespread in high-risk areas, like Bed-Stuy, Crown Heights, East New York and Brownsville in promoting testing and linkage to care,” Casseus noted. “Front-line workers such as street outreach workers, health navigators, community health workers are working longer to make sure everyone is tested for HIV and gets treatment immediately after [being] diagnosed.” Bridging Access to Care, for instance, has a mobile unit van active in several Brooklyn communities providing a package of services that includes screening for sexually transmitted infections (STIs), mental health and substance abuse screenings, HIV testing and counseling, syringe distribution and disposal, and referral and linkage to primary medical care and other services.

To close, I will refer to Pam’s story. From the conversation I had with Pam, I got to see just how important it is for those with HIV to tell their stories. Not only is it good for their health, but telling their stories can also potentially prevent others from making mistakes in similar fashion to those made by people living with HIV. Pam’s story underscores the culture of silence and shame that exists in communities of color as it pertains to HIV. It also sheds light on the role that race and its close cousin, racism, play in creating health disparities in relation to HIV. If certain populations, namely minority ones, do not talk about the disease, they may be less likely to engage in behaviors that protect them from it. Talking to Pam gave me clarity on a question that had long mystified me.

Priscilla Mensah is a reporter for Our Time Press. This article was written as part of the Health Reporting Fellowship of the Center for Community and Ethnic Media and funded by a grant from News Corp.

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