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"HIVy League"?

Meet the First Graduating Class of Women Alive's HIV U.

July 2000

Getting educated about HIV is the best way for women to advocate for their treatment and health, and now there is an HIV University where women can get that education.

The first semiannual HIV University in Los Angeles held this spring gave women the chance to learn the ins and outs of HIV in a woman-friendly environment.

Cathy Lopez, a treatment advocate from Women Alive, said that the University helps participants manage the vast amount of information about HIV that is available. According to Lopez, unless someone infected with HIV has a medical background, absorbing that body of knowledge can be overwhelming. "You need a university to really learn about HIV," she says.

Gearing Topics to Women's Needs

The 26 women who attended the University ranged from age 15 to 60, and they ran the gamut from highly educated women to women who did not even have a high school education.

"The unique thing about this University is that it is geared toward women and the issues that most concern us," said Christina, one of the participants. "A lot of times you can go to a medical update with a large group of people [and] you don't feel like you can speak up and talk about your problems. In a small setting where it is only women, you feel like you can talk about anything. You can still get pretty good information at a medical update, but if the topics are geared mostly toward gay men, then you really aren't relating to it that well."

Women Alive mailed fliers to tell people about the HIV University. In response, women from as far away as Ojai in Ventura County signed up. To qualify as participants, and to be eligible for graduation, the women were required to be HIV-positive and willing to attend at least seven of the 10 classes.

The 26 women who signed up then met with Lopez to discuss what they wanted to learn during the 10-week University. According to Lopez, "Each HIV University will be different because we will gear the program to meet each group of women's needs."

Once the topics were determined, Lopez recruited top doctors who would present to the women during the University's classes.

So the women could start to understand HIV on a basic level, the first sessions of the University covered basic biology and an overview of the immune system. "We didn't just jump into a spiel on medications the first week," says Lopez. "People need to start at the beginning and learn the basics about HIV and then after they have the basic knowledge we can move onto more complex topics. This puts everyone on the same level."

After learning the basics, the women covered a wide range of topics including antiretroviral therapy, opportunistic infections, nutrition and mental health issues. "At first I didn't know how I was going to remember everything," said one participant, "but we got a lot of handouts and books so we'll have something to take with us and we'll keep straight what we have learned."

Knowledge = Power

Many of the women at the University said they believe attending the University will mean they will get superior medical treatment.

"The only way that these women can advocate for their treatment is if the educate themselves," says Lopez. "HIV University is where they can get that knowledge."

As one participant explained, she is "trying to soak up everything that they are teaching us so I can go to the doctor, and look at my chart, and finally see what is really going on."

Another participant described how she was empowered by the University. "I've had problems that doctors have told me I just had to live with," she said. "But I've learned I don't just have to live with these problems. There are answers to them.

"This University is going to help us form a closer relationship with our doctors," she continued. "As a patient you have this innate guilt that if you ask too many questions or take up too much of a doctor's time then you are not being a good patient. But now when I go to the doctor I know what I'm talking about, and it is much easier to advocate for a good treatment.

"I speak up. I'm knowledgeable. I'm articulate. Now I'm taken seriously."

"When I was diagnosed [with HIV] the doctor patted me on the shoulder and told me I had 10 years to live," said another participant in the University. "But 10 years isn't good enough for me. I want 20 years, and getting educated is what is going to make the difference."

Passing On the Knowledge

Patricia Alverado, another student, had a T-cell count of 127 and a viral load of 15,000 copies when she learned that she had full-blown AIDS.

"When you get that diagnosis, all you can think about is that you are going to die," she says. "But then after it is all broken down for you like it is at the HIV University, and you start to understand the disease, you realize you don't have to die from this."

Patricia plans on taking what she learned from the University to the streets in the South Bay/Wilmington areas to help other women learn how to protect themselves. She promises to talk to anyone who will listen.

"Then there are those women out there who already have the disease and they are hiding and won't acknowledge that they are sick," she said. "I have a friend who has an opportunistic disease, and she refuses to get treated because she refuses to acknowledge she's sick. This is a girl who needs this education but won't get it herself. So I'll get it and take it to her."

One mother-and-daughter team who have been living with HIV for 15 years, are taking the University together.

According to the mother, the University provided an opportunity to learn about HIV together. "It has brought us much closer," she said.

For the daughter, 15, the HIV University was the first time she was able to attend a group that really taught her about her disease. "Everything from how you eat to how you sleep is affected by this disease," she said, "so there is a lot to learn, and now I can pass it all on."

Tiffany, another student, said that participation in the University will improve her relationship with her husband. "I've been trying to get my husband to see where I'm coming from with this disease," she said. "HIV University has given me ways to help educate him too."

Getting Past HIV Paranoia

For women still in the closet with their disease, coming to the HIV University gives them a chance to talk about how they are feeling and what they are going through.

A 56-year-old grandmother attending the University said that she did not know anything about AIDS when she first found out that she was HIV-positive. "All I knew was that I was going to die and that everything was hopeless. Now I've learned that it's not so hopeless and people are living a long time with this disease.

"I used to be paranoid that HIV was printed across my forehead," she continued. "But the University has helped me boost my self esteem and I have met women who I've only known for five weeks and they are like my new family. I am closer to them than my real family."

Graduation Night

Nineteen of the 26 participants graduated from the HIV University at a ceremony held at the Hyatt Regency Hotel in downtown Los Angeles.

The graduates saw getting their diplomas as a great accomplishment -- especially those participants in the program who had never finished high school.

But for some, graduation does not mean the end of their involvement with the program. Many of the women who graduated from the University will return to help run the next HIV University, which will start this fall. Women Alive will also offer an HIV University taught in Spanish.

For more information about HIV University contact Women Alive (323) 965-1564 or (800) 554-4876.

This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).

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This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.
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