“It isn’t written on our foreheads that we have HIV”

After three months, I started to get better, and I went back to my studies. Once my prescription ran out, I didn’t renew it. I didn’t want the entire town to know my diagnosis, but then the illness got worse. I was living with my uncle at the time. I would normally have meals with the children, but I soon realized that they had begun to shun me. I was being stigmatized, discriminated against.

I attempted suicide twice. I had no information about the virus. It was the end of my world.

One day, I was listening to a show on the radio in which an activist, a peer educator at MSF, was talking about HIV and her diagnosis. She spoke the same language as I did. At the end of the segment, they gave out a phone number. I called it and the next day I met up with that same activist. She welcomed me and guided me. She said: 'If you accept your disease, you will be just like me. I live with HIV, but I’m not going to stop living.' She suggested I join a community-based organization and I agreed. I found comfort in that group. I even forgot that I was sick.

I heard that MSF was looking to hire someone to speak out publicly and tell their story as a peer educator. My family knew my diagnosis by then and I was no longer ashamed to share it with other people. I was available so I applied, and they hired me.

Since then, I have told my story publicly and MSF enables me to do that. There have even been documentaries made about me. That’s how I came up with some of my slogans, like: ‘HIV may be in my blood, but the struggle against it is in my soul.’

Now I also contribute to teaching people and demystifying misinformation about HIV in Guinea. I’ve spoken on television, in schools, and in public forums. Everywhere I can, I’ve spoken about my diagnosis. I’ve even participated in international conferences through MSF.

My role is to share my experiences with other sick people, to help them to accept their diagnosis, to help them live positively—like me.

Those of us who live with HIV are the best people to talk about it. I’ve also had experience of all the opportunistic infections that go with HIV. I also share my knowledge with other community-based organizations about rapid testing in the community.

In the past, there was no treatment, there was no counseling, there was no support available to people with the disease. Even the woman who handed out medications would mock the patients.

MSF has put in place a psychosocial care program. Some people say that treating HIV is 50 percent medical, 50 percent psychosocial. I’d say it’s more like 60/40 in favor of psychosocial care. If you take your medication with no information, you’ll just give up on the treatment. It’s the counselors who help you, who explain the side effects. They comfort you.

It’s also thanks to MSF that community-based organizations have been able to form. Being in a community-based organization is truly important. It’s another world. Even your family can’t offer what these organizations give you. I can say that the organization I am part of has given me a new life. Today, I’m healthy, even more so than some people who aren’t sick. And I eat way more. I have a family and children who are HIV-negative.

MSF is the only organization today caring for patients with advanced HIV in Guinea. The best-case scenario would be if there was a transfer of knowledge to the health authorities, to the community, and to community-based organizations. They are the ones who can keep the treatment going. And if the government accepted responsibility, things could get better.

This year’s theme for World AIDS day is ‘Give the leadership to the communities.’ The fight against HIV cannot exist without us, the community. We are eyewitnesses.

To this day, despite speaking freely, some people still don’t believe me. They have a hard time believing that someone like me, who has HIV, can speak so openly. But it’s what I know.

God wanted me to meet MSF. That’s why I want to keep up the fight against HIV until the day I die.”

The stigma against HIV patients is strong in Guinea. The neighborhood kids used to come to my house to watch TV. One eventually told me that the adults had discouraged them from visiting me because I had HIV. But I don’t condemn those who stigmatize; it’s the result of misinformation.

Some patients fear telling their families and communities. Some women don’t tell their partners about their diagnosis, for fear of being beaten. But those same husbands need to understand that marriage is for better or for worse, in sickness and in health. And sometimes, children abandon their parents.

I joined the Guinea Hope Foundation and in 2007 I volunteered to speak out openly. I fight to defend the sick, give them hope and courage. I help those who are afraid of HIV. I raise awareness and I am proud to lead the change. Today, stigma has decreased, and many things have changed.” 

I found MSF, I found a doctor, and I found community-based organizations that helped me get treatment. The support I received from MSF, my friends, and community-based organizations saved me from feeling traumatized. I found a job and I was able to care for my children. 

Once again, I remarried and both my children were born HIV-negative, thanks to the prevention of mother-to-child transmission program. Today, they are 9 and 13. My daughter knows I’m HIV-positive and has become my confidante. I told her everything, to avoid the shock of her finding out the truth from someone else. She’s the one who reminds me to take my medication. I also told her to avoid touching my blood if I were to cut myself.

This year’s theme for World AIDS day is ‘Give the leadership to the communities.’ The fight against HIV cannot exist without us, the community. We are eyewitnesses.

Levels of stigma and discrimination are very high in Guinea and that’s why community-based organizations were created. I’ve been president of the Guinea Hope Foundation as well as president of the network for people affected by HIV/AIDS. These organizations help patients get psychosocial care. They also organize events, host radio shows, or find spaces for patients. Some organizations also manage places for the distribution of antiretrovirals, which are decentralized spaces created by MSF in 2020 and 2021 where patients can come and get their treatments easily.

Ignorance is still dominant here. People don’t know about the disease, and particularly about how it’s transmitted. Some people still believe you can only get infected through sexual intercourse, whereas it can be spread through cuts during certain ceremonies, in delivery rooms, or by way of sharp objects. But I am seeing the change from when I started raising awareness to today. People are now brave enough to say they have HIV. They are no longer mocked or rejected by the entire community like they used to be.

MSF supported me and never gave up on me. I realized I could do something with my life and give back to the community. Today I’m proud to help people, to bring them hope and self-esteem and help them find their path. I want to thank MSF for what it has done for the people of Guinea over the past two decades. I hope that state authorities will make MSF’s expertise their own, because MSF is the gold standard and the lead to follow.” 

Things have changed drastically since MSF arrived in Guinea. Psychosocial care has been put into place, groups have been set up for people living with HIV, peer educators have started speaking out openly on television and the radio, awareness campaigns have increased. All these factors help patients stick to their treatment and lower their viral load, the indicator of how much virus is in their blood. These advances opened the door to putting into place strategies to schedule appointments at three or six-month intervals. It also allowed the creation of community distribution points for antiretrovirals by members of groups for people living with HIV. Treatment methods have also evolved: 20 years ago, patients had to take as many as 12 pills a day. Today, they only take one or two.

In 20 years, thousands of lives have been saved and hundreds of people have been properly trained. But despite all the efforts made to tackle HIV/AIDS over the past 20 years, people in Guinea still face difficulties accessing care. The funds allocated to the fight are insufficient; medical stock shortages occur regularly due to logistical issues distributing medications; not all HIV testing is free, outside MSF-supported health facilities; and finally, there are too few sites providing quality services.

On top of all this, discrimination is still prevalent, and some people are fearful of being seen at patient centers and of being ostracized, so they refuse to be open about their diagnosis.”

When I returned to my family’s home, they isolated me in my room and bought me new things so that I didn’t have to borrow anything of theirs. One day, I went back to my home and found out my husband had changed the locks. He told me to go back to my family, where they isolated me again. The disease continued to develop. I lost all my hair, I had dermatitis on my face, I lost weight.

My family sent me to see a doctor who told me that I was HIV-positive. My life flashed before my eyes: what I had been through, the behavior of my husband and my family.

My brother and family supported me financially so that I could get treatment. In the 2000s, some medications weren’t even available in Guinea and were hard to find. After many months of treatment, my condition improved and I recovered, so much so that my family, thinking I was cured, deemed my treatment no longer necessary. They no longer wanted to spend their money on it. Fortunately, my brother was able to continue to help me. He was afraid I would take my own life. It was largely thanks to MSF that treatments finally became free of charge in Guinea.

It was my doctor who told me about community-based organizations. I began volunteering for them, and since then, I have fought tirelessly so that people don’t have to experience what I’ve gone through.

In 2011, MSF suggested I join their team of peer educators, to speak out and fight against stigma. I also became a founding member of the national network of associations fighting HIV/AIDS in Guinea, the REGAP+. I organize testing, give results, support patients, and raise awareness. I’ve also received formal training and participated in international conferences. I am sometimes told that I know more about HIV than some doctors.

I also wrote a book, which has been translated into three languages, as well as made into a children’s book. If I had had this wealth of knowledge and information when I was younger, I probably would have had a different life. 

Stigma was part of my daily life, in my neighborhood as much as within my family. It’s not HIV that kills, it’s stigma and misinformation. Levels of stigma were so sky high in Guinea. Today, thanks mainly to community-based organizations, stigma is decreasing."

After a time, my husband told his parents that I had HIV. That was when the stigma began. As I didn’t have children, my in-laws wanted my husband to get married to a second wife. But the fact I was unable to have children wasn’t because of HIV. My husband didn’t leave me. We are still together, and he remains HIV-negative to this day.

I’ve volunteered for the organization Les amis de la santé. I’ve also been a member of other groups for people who are HIV-positive, I’ve taken part in training sessions, and I’ve been involved. In 2010, MSF recruited me as peer educator to talk to the media and to encourage people to get tested. Today, I help people get married and gain acceptance from their families despite their illness.

I think it’s important to talk about HIV openly to avoid stigmatization. For me, HIV is no different from diabetes or hypertension. If you follow your treatment regimen, you’ll live a long life. It isn’t written on our foreheads that we have HIV. People can live with it.” 

In 2016, we participated in the Regional Technical Committee and we slowly became a strong supporting cast member. Since then, we’ve helped set up national guidelines for HIV care. Thanks to our donors, we also have the means to quickly put in place recommendations by WHO or the South African Medical Unit (SAMU). The national program to tackle HIV/AIDS can sometimes take years to implement these recommendations. In the past 20 years, we’ve also put in place activities that have gone on to be developed on a national scale. 

MSF also provides technical know-how in HIV care. Namely, we’ve put in place appointments at six-month intervals, mainly for people living outside Conakry. This allows people to have more autonomy in managing their condition and maintaining patient retention. In the past, patients had to spend the equivalent of their monthly salary to come and replenish their medication every month.  

We’ve also put in place points of distribution (PODIs) for antiretroviral medication managed by the members of community-based organizations. PODIs have allowed for a decentralized form of patient care within people’s communities, making it easier for patients to get treatment without having to travel long distances.
 
Across the eight health facilities that MSF supports, we treat one-quarter of the total number of people with HIV in Guinea. In 2022, MSF provided care for one-third of the women in the national prevention of mother-to-child transmission program.  

One of our biggest challenges is medical stock shortages. Sometimes adults, and more worryingly, children, can spend weeks without receiving treatment. This can lead to the emergence of strains that are resistant to antiretrovirals.

As a doctor, I see patients who arrive in an advanced stage of HIV every week, particularly at tertiary care clinic at the Unité de Soins, Formation et Recherche Donka, which receives support from MSF.

Today, some 16,500 HIV patients benefit from free medical quality preventative, curative health care and psychosocial support in Conakry, MSF’s intervention zone.

A final challenge of note that remains helping the ministry reach the UNAIDS 95-95-95 objective: to diagnose 95 percent of all HIV-positive individuals, provide antiretroviral therapy for 95 percent of those diagnosed, and achieve viral suppression for 95 percent of those treated by 2030. Where MSF’s active line is concerned, we have met the second objective at 99.8 percent and 90 percent of our patients on ART have an undetectable viral load. However, according to UNAIDS, on the national scale: 68 percent of HIV+ people know their status; 95 percent of those are on ART, and the data on viral load suppression is unavailable."