Interview conducted by April Cashin-Garbutt, BA Hons (Cantab)
There have been many positive reports recently regarding the fight against HIV/AIDS, but how even is this progress?
People mainly speak about the progress in HIV/AIDS. We at MSF know and are very conscious of the fact that there has been enormous progress, but the progress is very uneven.
We want to ensure that people do not think that the problem of HIV/AIDS is over. Our teams in the field see the patients still struggling every day because they need to get treatment.
We want to bring back a sense of urgency as well as progress and make people aware that many people are still waiting to access lifesaving treatment. In fact if almost 10 million people worldwide are on treatment, there are still over 18 million eligible and not yet accessing it.
Please can you outline how AIDS deaths vary country by country?
Estimates show that last year 1.2 million people died from HIV/AIDS, but the number varies between countries. If you live in Southern Africa, the HIV rate is very high but HIV also causes a lot of deaths in countries that have lower HIV rates such as the Democratic Republic of Congo (DRC) and Nigeria. In DRC, it is estimated that 52,000 people died from HIV last year, while in a smaller country such as Lesotho, the number was about 15,000.
The other issue is the proportion of people dying from HIV, not just the total number. For example, in Malawi, where the antiretroviral (ARV) rollout has worked quite well, about one in ten people with HIV might die, while in DRC, the rate is about one in four. It very much depends on the access to ARVs. If you have to wait a long time before starting ARVs , there is a high risk of death due to complications of the disease. Also, if you start treatment late, you may already have many infections and therefore compromised health, which is much more difficult to recover from.
In the clinic that MSF works at in Kinshasa, DRC, the great majority of patients have very advanced disease and about one in four don't survive, which is a very high death rate.
How has access to antiretroviral therapy (ART) in countries with high HIV rates changed over the last decade?
Generally, in countries with high HIV rates, there has been remarkable success in the rolling out of treatment. Globally, the number of people that are on treatment now compared to a few years ago, has tripled. In Malawi over the last 10 years, for example, they have not only reduced the number of deaths due to HIV but the number of HIV-related TB cases has also gone down. Globally, there has been quite a remarkable change that is noticeable within communities and also in terms of the total number of deaths.
There are problems in some countries with high HIV rates such as Lesotho where since last year, treatment coverage has reduced which is really very worrying because one would expect that we could improve the situation every year rather than it becoming worse. In other countries such as DRC where there is a consistently low rate of coverage, it is worrying that there is stagnation at these low levels and a bit frustrating that a lot of people are waiting for treatment and we do not seem to be able to obtain it.
Aside from the variation by country, I would say there are some particular groups that are underserved such as children and pregnant women who have less opportunity to access ARVs. Also, people with special needs and high-risk groups such as commercial sex workers, men having sex with men and migrants, often face enormous difficulty in accessing ARV treatment.
Why do so many people in low- and middle-income countries start HIV treatment dangerously late?
The late start is really due to the fact that when people start to get ill they cannot access easily HIV treatment. Moreover, people are not tested early enough. Health workers do not offer the test systematically and people don't come to the health center early enough. Stigma plays a large role in this because patients are scared of being diagnosed with HIV because they know that their family, their community or their partner might react negatively.
The main problem and one that varies so much from country to country is access to care and how much healthcare is offered and organized. For example, one of the first barriers people have to overcome is the distance they need to travel to receive testing and ARV treatment, which can be costly for many of them.
Then, in some countries none of the testing is free of charge. You might have to pay for your CD4 count, which determines whether ARV is needed and that can cost up to $25 or $30 in Kinshasa, which is extremely expensive for a person from an average household there.
Besides the financial barriers, another major problem is stock-outs. If the health center does not have the ARV in stock, a person might be told they cannot start the ARV now and to come back later. We have just released a report on South Africa showing that one in five facilities experienced stock-outs during the last three months. In west and central Africa a survey should one in three patients on treatment experienced stock outs.
Why are some heath centers experiencing stock-outs?
Stock-outs occur for different reasons in depending on the country. Often, there are problems with supply, with the treatment not arriving in time or the wrong treatment arriving.
Also, the authorities often do not respond quickly when notified of the fact that there is a problem and the health center is left to manage the problem single-handedly.
One of the common coping mechanisms is to give patients less drugs and instead of a patient visiting once every three months, for example, they have to come back in, say, two weeks’ time. This not only increases the transport cost for the patient, but the health worker has a busier workload to manage.
In the worst case scenario, a, patient may have to stop their treatment. In South Africa, about 20% of patients get referred to other health facilities or are sent home, because no drugs are available, which is a huge problem.
Why is there a lack of HIV testing in these countries?
Again, the reasons vary depending on the country and may be due to a combination of factors. One of the problems is stock-outs again; sometimes the tests are out of stock at the health center or youth centers where they should be available. The other problem is that the centers may be located in areas that are distant and inconvenient to reach.
In DRC, only 3% of adults received an HIV test over the last year, which is very low rate. This is mainly due to the fact that the testing is not really free of charge. Although you do not have to pay for the test itself, you have to pay for a consultation with a doctor or nurse before they do a test.
People also worry about whether or not the health center will assure confidentiality. Stigma still makes people scared that somebody else other than the health worker will know their HIV status and could cause a negative reaction within their community or family.
How much of an impact does stigma and discrimination have on those that are HIV positive? What do you think can be done to eliminate stigma?
Stigma still has a very strong impact unfortunately, especially in communities with lower HIV prevalence rates where people with HIV are in the minority.
In Southern Africa, almost everybody knows a family or community member who is HIV positive and they are more likely to hear about HIV in the news and to learn about the benefits of ARV treatment and how it can allow for a healthy, long life. In countries with a low HIV prevalence, the issue is much less talked about in public and there are also less role models.
What we see in Guinea, for example, is that there are very few patient associations. This would make a lot of difference. If people can be supported by their peers that is crucial in overcoming stigma.
One example of an action that can be taken to overcome stigma, is the fashion show we organized in collaboration with patient associations, in Kinshasa. It was a regular fashion show in terms of the nice clothes worn and the very nice models involved. However, all the models were HIV-positive women. We were trying to convey the message that you can be healthy and active when you are on treatment, and do whatever you want, like anyone else can. That was an example of how to publicly demonstrate the positive life that can still be lead even if you have HIV, if you get the correct treatment.
Why do many people struggle to continue with HIV treatment?
It's very important to continue taking your pills regularly because this is what will suppress the virus and stop it circulating in the blood and possibly transmitting it. However, it is difficult for people to take the drugs every day.
The situation has improved a lot because the three pills that had to be taken each day have now been combined into one daily pill, which makes a big difference. However, in some countries such as Guinea and DRC, the drugs used are still not optimal and they also cause some side effects that people cannot cope with, meaning they stop taking the drug.
The other issue is distance. If you have to travel to the health center every two weeks or every month to get your drugs, it is quite a financial burden in terms of transport and also the amount of time that is spent queuing and waiting in the health center. This is why community treatment is so interesting because people can get their pills closer to home and without being so inconvenienced.
If you ask people why they were treated so late or why they stopped treatment, the most frequent reasons given are stock-outs and financial burden because people have to pay not only for the consultation, but also for the lab tests and for the transport.
You mentioned that some countries are not using the optimal drugs. Why is that the case? Are the optimal drugs more expensive?
Yes. The new World Health Organization (WHO) guidelines that came out in 2010, recommend that people shift to more optimal treatment regimens, but some countries decided they did not have the resources to pay for these more expensive drugs.
Now, the price of these better drugs has fallen, but those countries have already bought the less optimal drugs, meaning they are now shifting to the newer drug gradually but late.
This shows that basing a choice of drug on price alone is not a good idea because it costs a lot. People stop treatment or experience complications and then need to be treated in a hospital, so the saving made by choosing cheaper drugs is often a false economy.
It is thought that three out of four pregnant women with HIV in developing countries are not receiving treatment. What can be done to help these women access treatment?
It's very important that pregnant women get treatment on time because immunity is affected and you will get ill more quickly after HIV infection.
Many of the pregnant women start taking ARVs in order to prevent transmission of the virus to their unborn child. However, too few women get the drugs for themselves, for their own health.
WHO recommends that the approach should be simplified and optimally all pregnant women should immediately start treatment as soon as they are diagnosed as HIV positive and stay on treatment for life.
In countries where women have many pregnancies, it would be much simpler to start treatment early and keep the women on treatment rather than starting and stopping all the time. This approach has been tested in Malawi with really good results, especially in terms of how many more pregnant women got access to treatment.
How many children are affected by HIV/AIDS and what challenges do parents face in disclosing their HIV status to their children?
Children are mainly affected by HIV in low- and middle-income countries. About 300,000 new infections occur among children in low-income countries. Overall, about three million children live with HIV in Sub-Saharan Africa. Worldwide, about 1,000 children are infected each day, which is a high number.
If a child is born and the parents realise the child is infected, it's a very difficult situation. It is difficult enough for the parent to accept that they themselves are infected, but to then have to tell your child that they are infected is really difficult for parents.
Naturally, parents also want to protect their children against negative reactions and stigma. In addition, many parents feel somewhat guilty, because if the child asks them how they transmitted the infection, they have to explain it was via the mother. Many parents worldwide, still feel very uneasy discussing that with their children.
However, experience has shown that it's important for parents to gradually disclose to children that they are infected, and also to do so early on enough because, otherwise, children may hold a grudge against parents.
We have observed that when children only learn later on that they are infected and then realise that everybody around them knew whereas they have only just been informed, they often get very angry.
We have seen very good results now e.g. in Mozambique and in South Africa using the approach of gradually disclosing to children, even from a relatively young age, that they are HIV positive. They get important information on how to lead their lives and how to take their treatment. It's also quite important that these children remain motivated to adhere to their treatment and that they understand why it is so important to take their pills.
About Dr. Mit Philips
Dr. Mit Philips is a medical doctor with a Master degree in Public Health in developing countries from the London School of Tropical Medicine and Hygiene in 1993 and a diploma in Tropical Medicine in 1985 in Antwerp.
She works in the MSF headquarters in Brussels since 1999, first as Director of Operations, and now as health policy analyst in the Analysis and Advocacy Unit. Her main focus of work at MSF concerns HIV/AIDS, financial barriers to health care and health financing, the crisis in human resources for health, health care in fragile states and health systems policies.
In 2010-2011, she worked also as part of the team of the Health Policy and Planning Unit at the Institute of Tropical Medicine in Antwerp, Belgium. Her work focused on global health policies, on health in fragile states and mixed emergency-development contexts.
Before being based in Europe, Mit Philips worked and lived abroad during 15 years in Africa (Chad, Angola, Sudan, Ethiopia, Kenya, DRC) and South East Asia (Cambodia) for Médecins Sans Frontières.