“I was not coping with HIV and used to stay at home not even talking about it.”
That 38-year-old woman, of the Nelson Mandela Metro district, was not alone. Many people infected and otherwise affected by the HIV virus go through some period of not coping.
They are the people that the Integrated Access to Care and Treatment (I ACT) program was established to serve.
More than 250,000 people have engaged with the HIV support program since its founding in 2009. The program provides education and encouragement to South African adults who are either HIV positive or affected by the virus because someone they love has it. The goal of I ACT is to keep HIV positive people in the health care system. This increases their chance of accessing anti-retroviral drugs as soon as they are ready, and reduces the number of people lost to health care follow up. Services include facilitated group meetings that provide support and advice on self-care, acceptance and how to tell others about your status, and broader information about HIV and sexual health. I ACT uses a closed group model, with six clearly defined educational goals and an interactive approach to empower participants.
Below are some of the voices of brave, strong and beautiful people who are part of the I ACT world.
I ACT meetings are powerful. For many attendees, I ACT meetings are the first place where they feel comfortable saying, “I need help.”
“The first few days after diagnosis I was referred by the facilitator to the support group. I could see that I was not alone and had friends. There are other people out there who live positively with the HIV diagnosis.” —K.M.
“Meeting other people helped a lot as I was even scared to go to the clinic thinking that people will see me as a person with a disease that is not acceptable. I realized with support from other people that I am not alone. I was scared with all the thoughts coming into my mind but through talking, light came and I felt the connection.” —Z.M.
“The first meeting made me feel happy and strong. It gave me the confidence to talk freely about my status. Since I ACT arrived in my life, when problems come, I can call one of the people to assist me with support.” —N.R.
“In the first meeting, I got freedom of speech. Everything was called by name, like ‘circumcision’. There were no secrets. I gained confidence to talk in front of the group and share with other people.” —P.S.
“You think that you are alone but there are people who have the same problems. The day I was raped I talked with friends and family. I did not want to accept the fact that I was raped but they showed me there are many other people who have gone through that. I found talking to people helped because I was suicidal but friends and family stood by me. I advise people when in trouble to talk in order to get support.” —N.M.
“When my husband was admitted to the hospital fighting for his life, I can’t recall a moment that I was left alone by my friends. They were there each and every step. They have stood by my side to this very day.” —J.B.
“I used to think, ‘Why must I let other people know about my problems?’ But participation in I ACT helped me realize that sharing with others does help. I wish I could tell everyone not to lose hope. Through I ACT I learned to believe and accept.” —M.N.
Acceptance and Self Care
For some people, the most powerful help they receive from I ACT is the ability to accept their status as HIV-positive. The Accepting Status meeting advises people that they are not alone, that they must accept that the virus is within them, and that they need to change their lifestyle.
“Joining I ACT helped me to cope and mix with others. I was scared and thinking that people will talk about my status. But instead I was accepted and given lots of support. I also learned how to advocate for myself.” —F.D.
“I exercise, practice good nutrition, take my treatment regularly, and drink enough water — eight glasses a day. I learned all of this from I ACT. I also have a small garden at home.” —L.M.
“I was taught to be faithful to my partner and when having sex to use protection. I also learned to talk about things that are bothering me and when angry at home to take a walk.” —Z.M.
“My family member has been diagnosed and it does help me to meet with the people from I ACT.” —S.M.
“It helped me to assist those who did not disclose to sit and talk with their families and loved ones and also to accept that they are living with the virus. I let the person cry, and after that the person talks, state his or her emotions.” —N.M.
When do you tell someone that you’re HIV positive? How do you do it? I ACT sessions help people think about these questions and develop their own answers.
“I learned the importance of readiness to disclosure and that there are different ways of disclosure.” —N.R.
“With strategies of disclosure from I ACT, I know where, how, why and when to disclose.” —N.M.
“It helps to disclose to someone and there are benefits of disclosing such as love, support, and encouragement.”—M.V.
Learning about HIV, HIV Prevention, and HIV Treatment
I ACT also provides practical information and medical help for HIV — what it is, how transmission works, how further infections can be prevented, and what steps are necessary for treatment to work.
“I now know that even if you are both infected, you still need to condomize to prevent opportunistic infections.”—J.B.
“I abstain if the partner does not want to use a condom. And having a treatment supporter is especially empowering.”—V.M.
“Not adhering to treatment puts you at risk for opportunistic infections. I also learned that I should take treatment every day for the rest of my life.” —L.M.
“First of all, I was clueless and had no idea. Now I am much better than before and I know the importance of treatment. That’s why I encourage others.” —M.V.
“I learned that if a person adheres to treatment, you can live a long and happy life. That made me go and do community work. I am now employed as a patient advocate where I educate people around treatment literacy.” —K.M.