Appendix 1-1
Have You Ever Advocated for Your Own Needs Or for Someone Else’s Needs With a Service Provider Or Someone Else Like That?

If Yes, What Did You Do?
Job Related Advocacy (8)

• I work for a family medical center and do presentations on HIV/AIDS and do  outreach work on safe sex.

• I worked for the PWA committee in Maryland for 2 years (Vice President). I attended advocacy meetings in DC and Maryland. Resigned because of health but still keep in touch.

• I’m the head of an AIDS ministry at my church. I get material, if they need to know anything; I give them information.

• I got my own housing in Philadelphia, Meals on Wheels, and got help from my case manager. I am happy with my medical services. I don’t have resources for women with AIDS in Pennsylvania.

• Yes, I work for an OB/GYN. I am able to work with women who come into our office. I work with women’s collective and provide guidance and a shoulder to lean on. I wish I could dedicate even more time.

• Yes, I advocated for the rights of abused and neglected children. I work as a therapeutic counselor.

• I am an access advocate, linking clients to devices, medication, grievances, and empowering. I am also involved in the HIV-community coalition of DC. Service providers are cooperative, when they are not; I have to be more assertive. I start with informal grievances, then if they still are not cooperative I start with formal grievances, in order to have affective funding for HIV women in general.

• Yes, this is what I do at work. I work at the health center in Prince Georges county’s-in the HIV program. I help women find the social services or funding for their medicines they need. I feel like I advocate on behalf of these women, and as far as I know there’s no discrimination at this level in my workplace.

Community Involvement (15)

• For my child and myself. I have done speeches on HIV and met the vice president for AIDS awareness. Advocated for other people in my apartment with children’s and special needs in school.

• I’m in a peer education group now. All the information I’m getting, the names, numbers, I give referrals to others in my groups. A friend wanted to attend this and wants the information. I am an alumnus of the recovery program. HIV has been a "blessing"- I have direction now. The women’s collective has taught me a lot. My groups didn’t know what to tell young people. Now the information I’m getting I can give to them and others.

• Trying to be positive with my experience and share with others and try to make the negative experiences more positive. I try to share information on spirituality and healthy healing direction.

• I go to Whitman Walker clinic and I facilitate a group.

• Yes, for others in my 12-step support group. I encountered people who were recently tested and were waiting for results. I would provide them with my number and ask the women to call me.

•   A friend needed help and I didn’t understand why some were getting help and others were not. I went to Casey’s clinic and advocated for this friend.

• I explained what I did to friends who did not have medical services/clinics. I gave them information and helped them work through getting information.

• I went to public schools to discuss protective sex with young people to avoid getting the disease. I spoke at seminars. I also spoke up to doctors and made them speak up to talk to me about this disease.

• Fighting for Our Lives and Pat Nalls inspired me. I attended planning council meetings for women and children. I am a member of the Maryland HIV alliance and chair in PWA committee. I am also a planning council member.

• I have been on housing committees. I advocated for baby-sitting. I was also involved in Ryan White committees for mothers and children on transportation.

• I am in PWA committees. I am involved in regional work group coalition and I set up a clown to go to schools and educate children.

• I went to Ryan White housing planning committees and talked to the board about housing.

• I am a volunteer in a family medical clinic. I am also a peer educator, I talk to other people about HIV and safe sex, etc.

• I often find myself helping others access the medicines they need. When some of the women from my support group or other women lack their medicine, they call me and I help them, guide them as to where they can go to obtain medications. I also call places for them. I participate in things like this because I know of more avenues than they may know of. I also help them find transportation. I call several people to tell them about this training.

• There was a transportation issue with the HIV/AIDS special populations and I went to the area businesses to get them to donate tokens and fare cards.

Self (19)

• I advocated for services with my case manager to get support groups and social services. I try to tell my family that there is not a certain profile for being HIV-positive. I tell them things I’ve learned, especially my little brother, because he is young and out there. Men have a certain mentality - just because women look good, does not mean they are.

• I went to Capitol Hill legislative advocacy, different meetings for youth rights (NAPWA), and adult groups.

• I’m in a group for women now. My social worker has helped me get medical services. I’m currently going to school.

• For myself-no difficulty. I’m not afraid of going straight to the supervisors and directors of those service providers. I don’t have a problem with that like some women do.

• I advocated for myself by coming here. I got medical services through my case managers help.

• Medical, housing, and social services it’s been easy for me. With medical I had faced some obstacles, not a lot though, such as with medicines and the social worker.

• I don’t like my case management. I want only one case manager dealing with women so that I am not looked upon just as some other person with HIV. I have one that deals with both men and women. So I’ve been going to women’s collective because that’s what I want. For myself, I went around and gathered information on where services were available, especially in my area of southern Maryland. In the first two years, I had to come to DC for everything.

• For myself. I question my doctor about how to take care of others and myself and how to protect others.

• I have just gotten to the point where I can deal with this.

• I am newly diagnosed and only focusing on what is happening in my life.

• I’ve made decisions about medical care. I was lucky with service providers. Doctors were very negative, thus, I had to find my own way. I also advocated to not be separated in jail because of HIV.

• I have just started and recently went to counseling with newly diagnosed women.

• I work in field transportation assistance. The facility I work for is taxpayer-funded space. Even if others tell me they don’t want me there, that’s my space. I have a right to be there. I advocated and asked for reasonable accommodations at my job. They went out of their way to get a humidifier to release lavender or vanilla and a heater for cold. I wrote a letter to everyone for changes.

• I advocated for medication, social services, and SSI for myself. Hopkins home helped me. Non-profit programs helped me more than Whitman Walker.

• I advocated for housing, medical, legal service, and support. Some providers were more responsive than others. There were some obstacles. I became more aggressive with medical providers.

• I recovered from substance abuse by going to 12 - step meetings. I also sponsored women in treatment. I am limited because of employment in ultra - conservative organizations.

• I went for appointments, programs, support groups, and meetings. I made sure service providers met my needs. I took others with me.

If No, Why Not?
Recently Diagnosed (4)

• I was recently diagnosed with HIV.

• I was recently diagnosed so I am still trying to come to terms with that. There’s been nothing but helpful things done to and for me.

• I am new to the game. I have been diagnosed for a year now. But I always advocate for my own needs.

• I’m new in this struggle. I’m feeling more and more like an advocate though because I’m getting more involved. Personally, I’m satisfied with the relationship I have with my doctor. Though, sometimes it’s difficult to get my medicines.

Ashamed (4)

• I have personal reasons. I was ashamed of the disease and I am not really over it. I separated myself from my disease. It took me a long time to accept it.

• I am just getting the feel of this advocacy thing. I was so much in the closet. I didn’t want to tell because I was ashamed and afraid of not being accepted. It’s a problem until you fully accept it. In my mind, I didn’t have it so I didn’t want to do anything. I went to Ryan White council meetings and sat on committee meetings.

• I have had the opportunity, but where they want me to go, they know my husband there. I don’t want other people to know.

Education (3)

• I haven’t been educated enough. It was a positive thing to read literature and to gain knowledge in the workshop.

• I haven’t known about it. And I haven’t had time to check it out.

• I haven’t been present in an organization that will train me to help before today.

Other (6)

• I haven’t really had to. My case manager takes care of all things for me. Whenever I have a problem, she takes care of it. She’s on top of my treatment.

• I never needed to. I was happy with my service providers.

• First time at Fighting for Our Lives. But I’ve gotten medical services by myself.

• I have looked for resources, tried to find support groups and information mainly on the women’s collective. Every time I have attempted to advocate something has always gotten in the way.

• I don’t know. I just haven’t.

• I am trying to take care of my kids and me.

Summary of Appendix 1-1

• A few women mentioned that they have advocated through their jobs.

• Most women also mentioned that they had advocated for themselves and others in the community by acquiring medication and directions on preventative care through their medical doctors and case managers.

• Some women advocated for their own needs with case managers and doctors. Several women stated that they did not fear confronting their service providers if they felt mistreated.

• The women that had not got involved were fighting feelings of shamefulness and the fact that they had recently been diagnosed.

• While a small proportion said that the lack of knowledge was holding them back from advocating, some women were actively trying to acquire correct information.

Appendix 1-2
Does Participating in Fighting for Our Lives Make You Want to Get More Involved In Advocating for Women Living With HIV/AIDS – Either for Yourself Or for Other Women? How Much?

If Yes, How Would You Get More Involved?
Educating Myself/Others (40)

• Have a big lunch for men and women with HIV. Have more support groups around and travel to different places to talk about it. Educate younger generation more so they have a better understanding.

• I would like to do service advocacy and coordinating services. Case managers don’t know as much as clients. Help make brochures for organizations to reach isolated women.

• Start an HIV meeting for women in my community.

• Start a support group for the emotional needs of the women in the community. Do the same things I’m doing now.

• Come to more meetings. Participate in things and learn what I need to know.

• Attending more seminars like this one. Sharing what I’ve learned here with others in other social groups like church and work.

• Go out and learn more. Go to council meetings. Just learn as much and tell as much as I can.

• Know more about what is going on with me personally and letting people know without being afraid of their feedback.

• Advocating in my community and staying involved in support groups.

• To learn more. Take as much as I can. Learn more about Ryan White Titles and what they do.

• Share about the disease by coming to Fighting for Our Lives. I Wouldn’t really change anything. Use this information learned to help other women and myself with HIV.

• Because I want to be the person that is on the forefront. I Just want to get things done for women quickly and correctly. Needs of women have to be met. People have issues but they are telling the wrong people. I want to fix that.

• From the time I found about my status, I’ve wanted to help others.

• Yes, because it is important for women to have a voice, volunteering and being able to help others.

• I Like to know what is going on. Talk to women and make them feel better and let them know what I can do

• Taking the advocacy training next weekend. I would like to start a women’s collective in Southern Maryland because I know women who are still in hiding and there aren’t many women specific programs not so medically oriented. I would do more volunteer work, face-to-face activities with schools and churches.

• I would probably talk to my support leader, who is also good with meetings to direct me to things I would be good at. She’ll help me to find areas that will be effective for me.

• Realistically I don’t know, but I want to get more involved in events that will happen in the future.

• At first, I was very misinformed. I want to inform women what they can do for services and especially for lesbian women.

• I would like to join a women’s collective and national association of women living with HIV/AIDS. Also, I would like to work with newly organized women.

• I would like to get information out to more women with stigma and want to find other answers.

• I want to educate myself and see what the needs are. Then, tackle and work with it and get involved. I would like to increase awareness and legislation.

• I would support the women because I know the symptoms. I need to be more enlightened for treatments and support groups.

• I feel much better than last year as I participate more and more. I became a committee member. I go to small groups and speak as well.

• I could learn things here such as getting empowered, doubling my doses. They pump me up with knowledge so I could be an advocate for others and myself. I could do anything to change. I can lobby, forge good relations with politicians, and help develop user-friendly laws in every language that the state recognizes. I want user friendly and language friendly laws so that information can be accessible to all.

• I am involved now. I would like to address programs for young women and gender sensitive lesbians.

• I would participate through outreach. I can also get involved as a speaker, who would communicate face-to-face at school.

• I want to extend advocacy international. It’ll be like a training ground for me. I wanted to take these same concepts and take it to an international level.

• I am going to attend some meetings from Pat Nalls.

• I would definitely get more involved. A lot of people don’t know where to go to get services. The help is out there and I can tell people about the help especially via Ryan White. They should not suffer with this virus. More service providers must tell people about the help and I must tell them too.

• Fighting for Our Lives makes me want to educate more people. I want to explain what the disease is and how people can feel good about themselves. I’ve been positive for 2 years and I have done a lot.

• I think I want to start my own group in Northern Vancouver.

• I started working for a women’s collective and plan together with other women.

• I can go to schools and organizations that want to see a face with HIV. I can give women hope. I want to work more with substance abuse.

• I want to do more volunteer work. I want to help Fighting for Our Lives set up, etc. I would like to talk to women who just found out as well.

• I want to join and help. I can do paper work and pass out flyers.

• I want to go out and share. I want to talk to people about HIV. I can pass out condoms and do positive stuff.

•   I will definitely try it. I’d like first to explore what avenues there are to do it. And I still feel a little lost as to how to begin. I’m interested in changing things at the financial level the bureaucracy of that is interesting to me. I want to see how money is distributed to the different agencies, medical departments, and research and service organizations. I want to understand that at a personal level.

• I want to do it very much. I’ve gathered a lot of strength from my support group and the women there. I always go because I see that it makes a difference, all of us are better. Well, I’ll advocate for whatever I know about. If I know about it, I’ll say it and share it. Whatever it is.

Ethnic Groups (3)

• I would like to help other African Americans, especially Ethiopians.

• Especially with women of various ethnicity’s. I was not aware of how many women of various ethnicity’s were impacted by the disease.

• Yes, I very much want to change things for immigrant women, especially those of us with HIV/AIDS. There are a lot of barriers for us to climb even without this disease. I want to do outreach so that we feel less marginalized because there’s power in our being together.

Esteem/Empower (9)

• Getting women to find ways to love themselves. I would help women to build their self esteem, to find positive information, to let them know that they don’t need a man to be happy, I can also teach them how to be sisterly and hang out with each other.

• Yes, for other women. It keeps my mind off of me and there is always someone’s issue that is worse off than mine. It makes me feel sad for others and I know that there is someone else I can help.

• I want to find out what I can do to help next year in music therapy. I want to open up a session with prayer and something about music. Then, sing a universal song. I think that a woman singing is a power of its own. It’s a blessing in a sense to be HIV positive, since now I get to focus on living one day at a time.

• Yes, it’s amazing, beautiful, and educational. It’s beautiful to see all women come together with the same disease live with it. We are not the outcast of society and we need to know this. Fighting for Our Lives builds our esteem to make us feel good about ourselves.

• I think our voice needs to be heard more. I want to go out and speak to women who are afraid to come out.

• I want to help other women especially younger women just finding out.

• I’ll do it so that other women won’t feel that they’re alone, to share emotions and solve problems together. So that they know what services are available. When my husband would leave the house and I didn’t have enough to pay the rent, I would go crazy. Then, I found out about and got help through Whitman Walker and that relieved me and took away my anguish. I’m no longer depressed. We need each other’s help because I was depressed and sick, all of us women go through these difficulties.

• I want to get more involved in prevention efforts. We need to leave behind all thought forms that say it’s shameful to talk about more intimate subjects. Women need to have a voice for themselves and for our daughters. We must move beyond submission.

• I want to do advocacy but in my area it’s impossible. People are going to look at me and say look his wife had AIDS. That can’t happen. My husband’s friends and coworkers may be around. If I can go further outside of where I live, I would do more.

Child Care (4)

• Yes, especially young women, because I too have children.

• I am more interested in women’s rights around childcare, as well as child bearing because a lot of women still believe that they can’t have children when they are HIV-positive.

• I want to help women with children who are going through the struggle. I am good at giving advice.

• I want more support groups for women with children. I can help to plan and activate community functions.

Housing (4)

• I want to get more involved in the planning committee. I want to advocate for housing and services for jobs.

If No, Why Not
Other (2)

• I am already busy. I do a lot already and I don’t have the time to get more involved.

• There are too many attitudes here that I don’t like them. It’s not organized well enough.

• Several women stated that they definitely wanted to get involved with supporting the HIV/AIDS issue, but that they needed a solid educational basis first. They believed that education might be obtained by joining a women’s collective, support groups, and/or attending sessions such as Fighting for Our Lives.

• A few women suggested that they would like to advocate for their own community because of the constant barriers that exist for them.

• Women felt that self-esteem and empowering were two major areas where they needed help. Some women said they would like to join woman’s groups where they could be exposed to and voice more positive voices.

• Childcare and housing were two mentioned areas of possible projects to undertake. Respondents noted that mothers living with HIV/AIDS needed to be aware of how to take care of their children and search for housing security.

Appendix 1-3
Have You Ever Participated in Meetings Where People Make Decisions About Policies and Services for People With HIV/AIDS (such as Planning Council Meetings)?

If Yes, What Kinds of Policy Meeting(s)?
Planning/Advisory HIV Council Meetings/Groups (22)

• HIV support groups at medical clinics.

• HIV related council meetings.

• Planning council, Maryland suburban consortia.

• I live in a house for women and children with HIV and I am on the advisory committee.

• I have attended the PWA meetings twice in Washington DC. I didn’t know what they were talking about, but I was there.

• With my job, being a PWA and working with special populations. I have been able to work with policy procedures and I sit in meetings that ensure confidentiality. I have changed things around at my job.

• I participated in the DC community coalition. I was apprehensive about coming to Fighting for Our Lives and about working in the field. There is a code of ethics. I am a PWA myself and I work in an organization that treats PWAs. I started those meetings but I can’t go and that’s the problem. I am trying to develop more professional meetings that are created for people like me.

• I participated in a DC planning council, national alliance meetings, PWA meetings CPG (community planning group), and application community which sets up applications for prevention in Maryland.

• I participated in a conference, which I attended every month to make decisions about PWA meetings. It was okay.

• I went to a meeting with Pat Nalls on new protocols.

• Yes, all the time. I go to different support groups in the Washington DC area.

• I participated in two support meetings. Slowly, but surely, I am taking my head out of the sand.

• I was in the planning council for Title I. I am a member of Title II Consortia.

• I went to Washington DC for a care meeting as a PWA.

• I attended meetings at children’s national medical center discussing the Ryan White act and how it affects families.

• I participated in Ryan White council and housing committee.

• I worked with PWA council. The only thing I belong to is PWA since I been HIV positive. I do a lot for them so I don’t have much time.

• I used to attend HCC (HIV Community Coalition). We would vote and give suggestions for policies we want to give to Ryan White council.

• I went to the Washington Center with the organization of my support group to a meeting with lawyers and other officials on immigration. They talked about jobs and other services. A head of a federal assistance program was there. And so was the Chief of Police. They talked about what services there were available and we said what we thought about it and what we thought was needed. Most of us in the group had the opportunity to speak.

• I helped bring about a law that requires doctors to inform pregnant women with HIV of services they may be eligible for. They have to offer them the tests and treatments. I can do more of that now that I’m a case manager. Before I was a registered nurse.

• I went to a planning council meeting through my involvement with the women’s collective. I also went to a PWA meeting in Washington DC. But I participated only at an informative level. It was a bit confusing for someone who’s new at it. It was all at the level of discussing services and money. It was too much information for one day. The pie seemed too big, enormous. Before I didn’t know about this. Then something just clicked in me

• I’ve been in forums where our groups try to succeed in getting things. Romagoza, the director of Clinica del Pueblo, called me to go to Lincoln High School. He calls me sometimes so I can go speak to the politicians. There were five government representatives there. They talked about some issues and I told them "don’t ignore this, don’t make your ears deaf to this, you should act because there is great need." We got it. Romagoza told me we won. I don’t remember exactly what it was. So he calls me. I ask him why he calls me – there are other women in my situation and he says because I speak up. So I like doing that because it makes me feel good and accomplished and it results in changes. But then the press put my picture on a prominent page of a Latino paper and it said my name and that I have AIDS. And that’s why a lot of my friends’ husbands I speak to discriminate against me. I didn’t like that.

Church (2)

• The archdiocese meeting, getting ministries in catholic churches. They have been supportive of my efforts.

• At St Anthony’s church. This meeting was about getting the mayor’s office more aware of women’s issues with HIV/AIDS.

Housing (5)

• Housing planning council, family connections, comprehensive HIV, intervention/prevention services (chips), support groups, family ties project.

• A meeting on housing and different resources for medicines. I got involved by seeing a letter in a doctor’s office and also through WISE program. When I go, I feel angry because these people have a job doing this and when I ask them for what they proved, they give me a big run around. I would like to be employed with insurance on a job where I can help people with HIV especially women with children.

• Yes, women with and without the virus have helped with housing. I belong to the Northern Virginia consortium and incarceration committee.

• I participated in Ryan White housing commission

• I participated in PWA committee meetings and monthly support groups.

• PWA and Maryland alliance - voting member. Took care of Ryan White funding.

• I didn’t know about the group for women with HIV.

• I would like to, but I’m very busy and I don’t know what’s out there.

• I participated in the safer sex infomercials on MTV and policy components in the NAPWA.

If No, What Prevented You From Participating?
Confidentiality (7)

• Because of my husband. I fear that they will think badly of him.

• Self-conscious. Just got my teeth out and having them fixed. Recently came out and I’m feeling good about myself.

• Because my partner was in denial, so it was hard to be out in public since he had not even discussed it with the family.

• I haven’t had the opportunity. I have gone into schools, institutions to tell my story about HIV/AIDS. I don’t want to be on TV or anything because I need to protect the children.

• I didn’t want people to know. I didn’t want to risk confidentiality.

• I am just beginning to face my diagnosis.

• I just started accepting that I am HIV-positive.

Unaware/Don’t Know (9)

• Hard to find in Philadelphia. Trying to talk to case manager to get connected. Johns Hopkins years ago hooked me up, diagnosed me and referred me out to many places.

• Didn’t know about these kinds of meetings before. This is my first time doing something like this and I would like to do more.

• Haven’t heard of them. I would be interested in attending if I did know.

• I never thought I needed to do it. If you are not part of it, then you don’t know what to do.

• I didn’t get a chance to. I never heard of or have been invited to a council meeting.

• I haven’t been too involved in the HIV community. I was newly diagnosed. It’s my goal to be in policy making, etc.

• I didn’t know where to go.

• It’s something new and I haven’t gotten to it.

• I didn’t know about it. And I didn’t think that I could have a say in all those political things.

Time (3)

• Time has prevented me. I am going to school.

• No, because I was really disorganized.

• Time prevented me from participating. If I am not sick, I have to go to work. It is difficult to attend meetings in the middle of the day. My case manager says she will get me more involved.

• I am new in this country. I’ve been here for one month. I’m from Cameroon.

• I got the wrong information about having HIV/AIDS. It was all about discrimination. "if you have this, you can’t work here or there," etc. In this community, I was getting the wrong information in recovery meetings as well.

• Fighting for Our Lives is the first big meeting with all women and I enjoyed it.

• I wanted to but the women’s collective was too far. I am enjoying this though. This has reinforced the information I already had; I would like to learn more.

• I was never able to. I was in the military so I was always moving around.

• No one has asked me to participate in meetings.

• I go to group settings where I share. I’ve started to go to meetings.

• The policy meetings in which the women participated included: Ryan White Planning Council, The Housing Council, PWA Council, Ryan White Council, Church and Educational Institutes.

• Other women indicated that they have participated in a number of different planning councils, conferences, and consortiums in their respective states.

• Most women who did not participate said that they did not know about these meetings or they were not able to participate because they wanted to maintain their confidentiality for their family’s sake.

• A few women remarked about time restraints in their present situations.

Appendix 1-4
Does Participating in Fighting for Our Lives Make You Want to Get More Involved in HIV-Related Policy Activities (such as Planning Councils Or Other Policy Groups)? How Much?

If Yes, How Would You Get More Involved?
Council Meetings/Planning Meetings (14)

• I was at an HIV Council Coalition women’s group on Friday.

• See what bills can be made to make people with HIV lives simpler. Want to join a women’s collective and work with family clinics to help them out.

• Yes, the policy area as well as policy concerns. I can extend my hands to women who have different experiences from my own such as one with drug problems. I can extend myself to them.

• I would like to share experiences regarding Medicare. I would like to join council for HIV. I have lot of resources to pull from.

• I am getting ready to be appointed to the planning council-drug policy committee. I would like to get more involved in that.

• Fighting for Our Lives makes me want to get more involved in everything. I want to get more political. For example, to change social security system for us. I want to speak out about lot of things, like housing.

• I want to get more involved by helping to develop policies that affect everyday lives.

• I am trying to get with the HOPWA programs. I want to join committees for DC care. I want to help friends, housing, and services.

• I want to get involved on where they spend money. I want to affect the type of information given to women.

• I want to get more involved in planning councils.

• I want to work with women with the virus and help them get assistance. I know that there’s lot to be done in terms of policy.

• I want to help people advocate and to help them know their rights. I want to join committees, planning councils and things like that.

• I do plan to become more involved. But sometimes its depressing because you confront many establishment interests. I was disappointed at the planning council meeting because I expected something more human, more practical. It was very aggressive. But I need to learn more about the distribution of services and money so that I can participate more actively. But first the whole thing has to make more sense to me. Later, this year I’m going to another conference for training advocacy.

Other Groups/Committees (15)

• Helping others by starting those meetings.

• Letting people know you don’t have to be afraid – people love you. Stay healthy – take your medications and take care of yourself. Before I didn’t want to live, now I want to live. Hopefully they will find medications that will help me.

• More meetings. Become more vocal and have my voice be heard.

• Look for more meetings like this. This is a start.

• This is the type of meeting I attended before and I would go again.

• I will be starting a program with transgender people and making sure they are involved and feel comfortable.

• I attended the Medicaid workshop and I plan to attend a meeting on May 26^th to change the policies related to Medicaid. The meeting is in Washington DC and I live in Maryland but I am going anyway.

• I would like to speak, and make decisions. I am thinking about taking training. I would like to join other committees that are related to HIV women.

• I would like to listen to Latina women, since there are cultural, language, spiritual barriers. I want to especially target the Latina population. I also want to target discrimination.

• I would like to get involved through outreach work and speaking at the schools.

• I want to get hands on with interviewing and speaking to women. I need to get enough training from women’s collective and institutions in aids administration. I would take what I learned from the trainings and use it my best. I would go out and convince people with HIV to fight for their lives. When people are convinced, I would have policy makers fulfill the people’s wishes.

• I want to get more involved by working to help women access services. I want to start HIV support groups in St. Mary’s County.

• I can go to meetings. I can show my face and be seen. I can get involved in groups dealing with medical and hospitals. Also, I can help out with housing and case management.

• My English is not too good so I can’t get too involved. But I can to the extent that I can assure other women how to get certain types of services. I will try to do things. I always told myself that since I have been doing well since I found out about this disease I would help other women do the same. I’ve recovered, and have what I need, others can too. And if they don’t know it, I will be the one to tell them. I will probably go to those political events through my support group organization.

Education (11)

• Participate in meetings that have you learn more about HIV. Talk to other women with HIV. They don’t have to hide in the closet with it like I did.

• Going to more meetings like this one.

• Get out more from these enclosed training session types and bring them out.

• Attend more meetings like this. Would like to join other organizations. Something that was missing was school in my life, that is why I am going back.

• Getting more information. Coming to more conferences. Staying in touch with the advocates here at Fighting for Our Lives.

• Learning about lobbying efforts. Need to get more services in the suburban Maryland area.

• Overall, I feel neglected. We are a unity and I need information.

• I want to understand what the hell is going on so that I can inform others.

• I want to get involved in research in reference to how the disease affects women.

• I need to get educated on policy stuff. I can get more involved through DC planning council meetings. I haven’t had the avenue to get plugged in yet.

• There is opportunity in my new job to become more involved in the political staff. I can extend myself more, even work on informing the public from my position now. I can inform officials and politicians about what I recognize as barriers for the women I care for. Indirectly, I see myself involved but I I like the political arena very much. They categorize people too much. Those are the interests of Latinos and African Americans, etc. I want to see things that way. I like social service work and prevention activities and being involved with people like me, not view things from above.

Voice to the Public (9)

• Voice my opinion. Stay on the backs of these people – the committee, congress, anyone who could get something done for these women. Letters, calls, meetings. I want them to know who they are talking to.

• Yes, I have many experiences, and I have a lot to give, but no one heard my cry to get involved.

• It gives me a chance to empower myself and give the information to others who may not be able to get out.

• I would act as the voices for women not being heard. HIV is described as a male disease thus, I would like to become more informed and go to different communities to help. I would like to get involved in the women’s collective HIV/AIDS clinic.

• I wouldn’t want to be working in an organization because of little money. I would speak to groups where there are no cameras. I would sit in agency or meeting (policy meetings, planning council).

• I would like to answer and work towards questions such as: Where do the friends go? What road are they on in terms of cure How the medicines work? etc.

• I want to get trained to be a spokesperson against legislation to fight for funding.

• I want to talk about medications etc. to let people know that if they take medications they will be on the right track and viral load down.

• Yes, but I don’t agree with the medical protocols so where do I fit?

Other (3)

• I’ve already had that inspiration but I want to put myself out even more. Hopefully, more women will be able to participate in these types of activities.

• I’m still very new to this struggle, I’m afraid of what’s going to happen that people -distant friends or neighbors or some family members are going to find out about me. I wouldn’t like that. I’m not like the others. I just recently started carrying this charge. I’m not very strong yet. I’ve known for only one year and ten months

• Yes, like I said, if they call me for these things,. I’ll try to go. I’ll say what my experiences have been and represent other women like me. Plus I’ll learn more. So I’m going to try to get my citizenship, because it will make me free.

If No, Why Not

• Their attitude has turned me against wanting to help out.

• More than half the participants interviewed indicated that they were very much influenced by the training experience to pursue further work in HIV-related policy activities. Some women were already involved in the field and others, as a result of the training experience, were now able to find an advocacy direction they wished to follow. As one woman stated, "I want to help people advocate and to help them know their rights."

• Some women noted that they needed to gain more information on the policy associations before they got involved.

• One woman said it was important for her to be a representing strong voice for those women who were not as bold. She was interested in advocating for funding.

Appendix 1-5
Do You Have Any Other Comments About Fighting for Our Lives?

Good Program (22)

• Really good program. Enjoyed it and they should have more.

• Inspirational. Would love to do this more often whether they pay me or not.

• Really enjoyed it. Would like to be more involved with something like this again. Hopefully I will get on the mailing list and get something like this in Philadelphia.

• Enjoyed myself.

• It’s been very helpful to the women. Healing, support, nurturing. It’s my second time here. Better than last year. Women are opening up more. I Feel comfortable, no ones judging one another. Hopefully, everyone will take the word out to their communities.

• It was great and enlightening. It’s getting better. I can see how they are reaching other people. It’s not getting smaller; it’s getting bigger.

• This was a good thing. We could just get a lot of information. My first time and it’s nice.

• I learned a lot and there is so much material available. I think it’s a wonderful program. I just wonder how many women are aware of the information.

• We need more women. My first time here. This has been a lot of information and it has been great. I am like a kid in a candy store.

• This is my first time attending and it has been great for me.

• I enjoyed being here. I learned a lot from the workshops and other women who are HIV positive.

• I had a great time so far. Fighting for Our Lives seems to be growing in the process. The location was too far, but other than that, it was okay. Last year it was a little less organized. This year is running smooth, more personalized. They met special needs.

• It’s great every year.

• It was a wonderful experience. The people feel connected. Food was great. The meeting place is nice. The information I received through literature and verbal are very useful. The interactions between participants were smooth.

• This was a very positive experience. I was excited to come and I am so very glad that I came. I was the first person here today and I have remained excited. I have nothing negative to say at all.

• It’s been wonderful. Fighting for Our Lives provided food for the soul.

• I really enjoyed it. It was eye opening, heart warming, and a genuine experience. I became aware of other sisters.

• I learned a whole lot here. In this group, there was a lot I didn’t know. Fighting for Our Lives helped me carry and manage other people with HIV/AIDS.

• I think it was well put together and I haven’t had a chance to think about how to improve it. I wish could bring it closer to my neighborhood.

• This is really good because there’s a lot of stuff out there for women. Everything is geared towards men even the medical studies until recently.

• I found them to be very helpful and caring. I wish Fighting for Our Lives could reach out to more women because it’s all word of mouth.

• There is something very positive when we women come to help ourselves. And we can bring our children because there’s childcare. Regrettably, this wasn’t a very balanced group. I would like to see more Latinos here. And more young women. Maybe we didn’t put out enough information.

Good Workshops (4)

• Make it a three-day workshop because there is so much information. I liked this as two weekdays instead of two weekends. All the workshops were good last year and this year. If it’s good, why change it? Gynecology issues and sex and sexuality are the most popular workshops.

• The workshop helped me a lot. Fighting for Our Lives helped me to understand the disease and the people with the disease. Also, I understand what medications can do to me. The people who are dealing with the disease are living with it and are happy with their lives.

• I am in a daze but everything was great. I think we needed more time with gynecological issues.

• This workshop needs to be done more than once a year. Women need to make commitments to advocate as part of workshop.

More Time (5)

• This was excellent. Liked the mix of people - participants and panel. Some workshops could have been longer. Add an extra day so you could get more information. Facility was great and convenient to get to. Great for networking. Have it again - workshops and retreats.

• Even though the day seemed long, there is not enough time to do the workshops and answer all the questions. I guess you can make the days a bit longer. Last year, I had a hard time deciding which workshops to go to because so many of them started at same time.

• The only thing that concerns me is that we need more time for questions. We have a lot of questions and there should be more time for questions that are related to women.

• A three-day training would be very meaningful and more knowledgeable. They classes should be longer, an hour for the class and half hour for questions and responses. The people who are selected to come should know that it’s not just about the stipend.

• I have an affair for women who couldn’t attend. I think issues on holistic medicine and alternative medicine should be addressed.

Inspirational (3)

• I have enjoyed myself. Would like to come back next year. It has given me a lot of inspiration.

• It was an outstanding experience. It’s given me that extra push for standing up for women living with this virus here in the metropolitan area, and to take it to other places like, California, Boston, etc.

• I want to thank them for helping me to fight for my life. People should help others to fight for their lives, not based on gender or race.

Organization (5)

• They need to be more organized. I had problems finding professional people to speak.

• The center needs to make itself more known. It’s very low-key. Center for Women Policy Studies needs to get involved with a lot of other groups so that they know about the center and how they can benefit. I think Fighting for Our Lives can make events more successful by increasing awareness.

• I think last year was better. There’s too much background talking. People are impersonal, conversations and speakers are not being heard. There are too many distractions. Otherwise, they are doing a great job.

• Fighting for Our Lives should have separated groups for people who just found out versus people who have known for a long time. I didn’t like the food this year.

• It’s very important that we increase the number of women involved in this every year, to the same extent that this disease multiplies itself. I want our voices to be heard and that it reaches the politicians. Maybe the cure would be more imminent.

Other (4)

• Wanted to able to bring one other person with me. She was a nurse, a friend of mine. She wanted to come, but she didn’t know what to do or who to contact.

• We should enforce sensitivity and tolerance in regard to everyone here. People should be asked to leave. The incident with the camera should not have happened. We should have been more sensitive to others.

• They shouldn’t tell people what to do if they are newly diagnosed. They need to spell that out better.

• I think when it comes to sensitivity, there is zero tolerance for people that are mean. When it comes to transportation etc. You can get the instruction and literature but not for feelings. They should put "sensitivity in bold, 42 point."

• The consensus was that the Fighting for Our Lives program was outstanding and very informative. A few women mentioned though that it needed small changes in the next year, it was well organized and well worth attending.

• Women also commented on the sheer magnitude of information that was provided during the weekend. For women who were first-time attendees, they reported being thrilled by the experience.

• Some women commented on the time allotted to individual workshops and suggested that they might be extended so that women would have the opportunity to obtain even more information.

• A few women mentioned how they would have like to bring a friend with them, but were not to sure on how to do that.

• There were a few comments made on the training organization because some participants did not act as sensitively as needed.

• Some participants felt that the workshop should include even more people so that everyone could benefit from the information provided.