World AIDS Day 2015: Patients and Caregivers in Their Own Words

Lifesaving antiretroviral medicines (ARVs) are routinely not making their way to patients in sub-Saharan Africa, most often despite sufficient stocks already being present in countries. At the International Conference on AIDS and STIs in Africa (ICASA) 2015, Doctors Without Borders/Médecins Sans Frontières (MSF) released "Empty Shelves, Come Back Tomorrow: ARV Stock Outs Undermine Efforts to Fight HIV", a report based on surveys conducted in South Africa, Mozambique, Malawi, and Democratic Republic of Congo (DRC). It shows that most stock outs are due to the inability of ARV supply chains to ensure so-called last mile delivery, when necessary medicines are available in-country but do not reach peripheral clinics because of cumbersome procedures, logistical challenges, or lack of resources.

Click Here to Learn More and Download the Report

Here, HIV/AIDs patients and caregivers describe their experiences, and call for improvements to the supply chain to ensure that every patient can easily receive the lifesaving medications they need.

Democratic Republic of Congo

"We sometimes run out of HIV tests at the hospital level, in which case we need to send people back home even when we suspect they’re HIV positive. Considering the high levels of stigma in the DRC, many will be too afraid to [receive] a possible positive result and will never come back. They’re lost to follow up even before having a chance to know their status."

—Pierre Bilabi Butabambe, director of nursing, Mbankana Hospital, Kinshasa

"Stock outs are extremely frustrating. Because of stigma it’s very difficult to convince people to get on ARVs, and once they’re adherent we have to tell them that there are no medicine available! What can they think of this? It angers me.”

—Bijou Luboya Mudimba, nurse in charge of pharmacy in Bomoto Health Center, Kinshasa

"When my ARVs were out of stock I could only take Cotrimoxazole to avoid opportunistic infections. During that period I had fevers and pains and lost five kilograms. I had to take sick leave from my job when the symptoms became unbearable."

—Bébé Magazini, patient on ART, Kinshasa

Mozambique

"Once I was told that there was no cotrimoxazole at the pharmacy. It was difficult because I can’t stand spending a day without my medication but I couldn’t afford buying those at the private pharmacy. My aunt lent me 14 of her tablets to tide me over until the medicine was available again. At the time I didn’t report the problem to anyone because I had no idea I could do so. But if that were to happen again I would not hesitate to report it through the JAM hotline. I’m not afraid to do it openly because I know it is my right to receive my medicine. In fact, me and my friends from the community ART group have already reported stock outs through the hotline."

—Ana-Bela Fernando Mucuala, from Changara, Tete Province

"Once I was without my medication for two weeks because of stock outs, and I ended up buying two weeks worth of cotrimoxazole on the market. But a health center should never run out of medicine! Otherwise we may end up having to switch to second-line ARVs or get sick because of opportunistic diseases. At that time I kept silent—not because I was afraid to report, but because I didn’t know I had the right to do so. But now I would. In fact, people know I’m an activist, so I’m often approached by those who suffer from stock outs."

—Bernardo Suarte Raiva, from Changara, Tete Province

"Once [I went] two weeks without my ARVs. When I arrived at the health center I was told there was no nurse there and no one found an alternative solution for me, so I went back home empty handed and desperate. I know that without drugs the virus will multiply in my body, I will get sick and could die eventually. It also force us to walk long distance to return to the health center again and again."

—Sanculani Langui, from Marara Centro, Tete Province

"When the health center was out of stock I was without medication for two days. The staff told me that they were supposed to have received the medicines but the delivery was late, so I ended up buying them at the private pharmacy. I was very dissatisfied by this lack of information: I knew that without drugs I was running the risk to end up with full-blown AIDS. So I reported the incident to the JAM hotline and a few days after Ms. Dinda called me to say that the drugs were available for me to pick up. Health centers should not stay without products so we have to report those problems to help solve them. I would want for the government to find a way to make sure that the regional depot always has enough stock and that the drugs are available in my health center."

—Jao Branquinho, from Moatize, Tete Province

South Africa

"I was given alternative treatment because Tenofovir tablets were out of stock, I don’t remember the name now, but my system did not agree with it and I reacted very badly to the medicine. I could not take it anymore. I phoned the Stop Stock Outs Project hotline in February 2015, after getting their contact number from a friend of mine, to see how they can help me. After reporting this incident, a week later I received a call from the clinic to let me know that my treatment was available. I am happy to be on my treatment again because that other one was making me feel very depressed."

—Patient (46 years old) from South Africa

"I am a 40-year-old mother of two, living in Nelspruit Mpumalanga, originally home for me is in Pienaar Msogwaba. In January 2010 I was diagnosed HIV positive. I started taking FDC [fixed-dose combination antiretroviral drugs] in September of the same year; it is now five years that I am on this treatment. I also belong to a support group for people living with HIV at my clinic. It is here that I got information about SSP [the Stop Stockouts Project (SSP), an independent consortium of civil society actors], from the chairperson of the group. Since August 2014 to February 2015, I have been receiving two months’ HIV treatment. Getting two months’ treatment is a problem for me, because I work a part-time job and I have to use my second child’s grant money for transport to get to the clinic. At least with three months’ treatment I am able to extend my budget and only use the child’s grant for what the child needs. Also, the nurse kept on telling me that the problem is with the supplier. I wanted more information on why I am not getting three months’ treatment, like before. In March 2015 I decided to contact the SSP to find out more about this problem. When I sent the SSP [a message], they were fast to call me back. I gave them the information they wanted and they told me that they will follow up on this problem at the clinic. Today, I am still getting two months’ treatment, but, the project has been good because they update me on what is happening with the case. I am hoping that when I go for my next checkup, now in May, I will receive my three months’ treatment.  For now I eat healthy, I exercise, and I condomise, and my viral load has not gone up and my CD4 count is good. If someone I know has a problem with getting their medicine at the clinic, I will give them the SSP number."

—Patient from South Africa

Malawi

"It’s much better when us patients can group together to access our drugs through community ART groups. I would rather have long refill periods, five months or more, for my ARVs."

—Grace Hotti, from Nsanje, Malawi