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"Ask Up" -- Fight Back

January 1997

The following article is intended to inspire audience participation from women living with HIV at the National Women's Conference.

THE NATIONAL WOMEN'S Conference has 3 distinct tracks addressing: 1. Treatments and Care, 2. Public Policy as it relates to AIDS, and 3. Prevention. Take a look at the program schedule for each day and attend presentations that are important to you.

Information is presented in 3 main formats: The Plenary sessions are intended to be an overview of where we've been and where we are going in the AIDS epidemic. The state-of-the- art speeches are focused on where we are today. The abstracts are presented at workshop sessions and are supposed to be the new and exciting breakthroughs that have never been presented before.


Late Breakers

In addition to these 3 main ways of getting information, there are also symposiums, and late-breakers. Women Alive will be hosting a symposium about resistance to therapies in the treatment of HIV. It will be held from 6-9pm at the Doubletree Hotel, 191 N. Los Robles Ave. on Monday night. This session will provide life-saving information. Please plan to attend.

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Women Alive & Women At Risk will also be presenting preliminary findings from our mail-in survey on protease inhibitors. Watch for this one, and please be there even if you do not take these drugs. We need your support. If you have not yet mailed in the survey, they are available at the Women Alive booth/table.

In all of the above mentioned information platforms, there will be opportunities to ask questions.


Overall

Overall, this conference will present many studies that simply observe and count women with HIV. But there will be far less information on how to treat these women. We must keep asking for and demanding solutions to the problems that researchers are identifying. Every chance we get, we must demand research that finds answers, instead of more research that counts problems.

As you decide what you will attend, consider writing down what you want to learn most about each topic. That way you can ask for the information you need even if it is not covered. Bring a pen and note pad with you, in case you need to take notes or write more questions down.


Tips On Asking Up

The most important thing to remember is that this conference is about your life. It is your right to ask questions. It is your right to get answers. It is your opportunity to find out what you need to know to prolong your life. Take as long as you need at the open microphones. Remember, you are getting information about your life.

If it seems like there is an obvious problem with what you are hearing, then there probably is. Ask about it. Further, if you are not sure what you heard, but think you heard something that sounded like it could be a problem, it is perfectly appropriate to say; "Did I hear you correctly when you said ...?"

Listen closely to the answer. If it doesn't answer your question, ask again. If it does answer your question, but the answer is disappointing or unclear, feel free to say so.

If you feel shy about asking a question, stand up immediately and approach the microphone. You might want to write your question down and simply read it. It's the best way to get over shyness. The first time might be hard, but each time gets easier.


Examples

The following examples address issues that are appropriate to ask about at this conference, and are also relevant to an array of others: National, International, Regional, or Local. There are a few fool proof questions that you can always ask, like:
  • "What is the simple summary of this research that will make a difference in the lives of women today?"
  • "How is the data from this study going to help me (and other women with AIDS) to stay healthier or live longer? "
  • "What would you recommend as standards-of-care for women based on your findings?"
  • "How did HIV+ women give meaningful input to this project?" "Did any community women have input prior to the final design or implementation of your project?"

If the presentation is about a specific drug or therapy, you could ask the presenter :

  • "Who paid for this research project?" "Was it the drug company that makes the product?"

If you are attending a session on perinatal transmission and AZT, ask:

  • "Was there any information about cancer or drug resistance in the informed consent for this trial?" OR "Are pregnant women still being prescribed AZT monotherapy?"

In sessions about behavior, depression or compliance to treatments, ask:

  • "Did you do these same or similar studies in men?" If not, "Why not?" If so, "Did you do a gender analysis?"

In presentations about research on treatments, you can't assume that the research was done in women. If the presenters don't make it clear who the study population was, ask them:

  • "Was this study done in women?" OR "How many women were enrolled in this study?" If the study was with both men and women, ask:
  • "Did you do a gender analysis?"


It's Your Life

It's your life! You are getting information about your own life. Whatever you need to do to get it, is your birthright! In fact, you will be doing other women with HIV/AIDS a favor if you ask questions, because everyone gets to hear the answers.

Take breaks between sessions. The PWA lounge is a good place to share information and experiences with others who are living with HIV/AIDS. Here is where we can talk amongst ourselves, and network with others. If you need help in any way, the Women Alive table is a good place to start.

Together, we can make a difference. Fight back against ignorance and indifference, "ASK UP"! Our lives depend on it.




  
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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.
 

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