Sandra Rogers

Where did your story begin, specifically as it relates to HIV in the Black community?

In 1994, I was offered the opportunity to start a support group for women of color
in South Los Angles. The offer came from Ann Copeland, co-founder of Women At Risk (WAR), which was created to provide HIV-positive women with support groups and peer support as they navigate through this new way of life with this diagnosis.

At that time, WAR had support groups in several suburban areas in Los Angeles County, but not in South LA. When I questioned Ann about this, she offered me the opportunity to start and facilitate a support group. Though I had never done anything like this, I did have several people in my life who were diagnosed with HIV and it affected me very much.

I accepted the task and never looked back. We had our first group on June 14th, 1994, and the group continued for 17 years. I kept the group going for long-term survivors after WAR closed its doors. This group was for any woman who had an HIV diagnoses for 15 years or longer. This group has not met in a few years, mainly due to the COVID pandemic; however, I will be starting it up again.

2. What did you see, experience, encounter, and observe at the height of the AIDS epidemic? What was happening? What was its impact on you?

In 1994, I always say the casket was in the room. The support group met as a group of women who were terrified at what their life was going to be moving forward. They feared what HIV would do to their bodies, and they feared how they would die. They also had concerns about telling their loved ones, being looked at as dirty or promiscuous, being rejected by family and friends, being alone, dying alone.

All they had at that time was AZT. Men knew more about HIV/AIDS and AZT than women, because the gay male population were the ones hit hard in the beginning. The focus, of course, was mainly on men. The focus was not on women. They didn’t know how toxic women taking AZT would be or how different their bodies could handle the meds in comparison to men. If men had side effects from HIV meds, then women’s side effects could be and were worse.

However, that was all they had. So you had some women in the group that took AZT, and you had some who did not. Some went the herbal route, others did neither, but in the end the concern was who would be by their side when they transitioned from this world. They did not want to die alone. The group made sure that didn’t happen.

All this impacted me very much. At first, I was saddened seeing all these strong, beautiful, educated, powerful women; some were mothers, some gave birth to positive children, so that was HIV on another level. It hurt me to see them go through this devastating diagnosis; but after a while, I was able to put the sadness aside and become in awe of these amazing women. Their honesty, their strength, and transparency— before transparency was even a thing— was life changing. They taught me what strength in the storm truly looked like. It was a powerful experience.

What did you do? What did your roll become?

What I did was show up. I made sure the group happened. If it was only one or two women there that night, we still had group. I made sure that in their inconsistent life, group was something they could count on. I made sure I was as available as I could be for them. If they had questions or needs I could not answer or meet, I made sure I called APLA or some HIV organization that could give them the answer or help they needed.

4. How did you show up in the space?
I made sure I was present and there for whatever the conversation of the night would be. Whether It was about death and dying, fear, stigma, loss of relationships because of the diagnosis, dating, rejection, family members not eating or drinking after them or with them. Anything they wanted to discuss, no matter how uncomfortable the conversation, I made sure I was there with my non-judgmental attitude and compassion, love, and honesty, always for them.

5. What’s your perspective on where we are as a community around HIV/AIDS and ending the epidemic?

My perspective on where we are around ending the epidemic is that I believe because HIV is now manageable, some have forgotten that people are still dying, and the rate of newly diagnosed cases of women is still very high. I hope that just because we now have meds that are fantastic and are helping people with HIV live long, productive lives, that we have not put the work of finding a cure on the back burner. There is a lot of money in HIV medication, and we are thankful that the medications are available; but the cure is needed, and the epidemic needs to be eradicated so people will no longer receive this life-changing diagnosis.

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