Luis Mendão on the role of civil society in bringing down the prices for ART

Luis Mendão
Chair of the Board of GAT – Treatment Activist Group, member of the European AIDS Treatment Group (EATG), Portugal


  • Can you tell us why is there such a spread in the price of antiretroviral drugs worldwide? Why do they cost more in Russia compared to, for example, South Africa?

The Western World created the system of rewarding innovations for new medical products by introducing patents. Patents allow the producers to set the price for their drugs. As everybody knows the tendency is to increase the price non-stop. Then in the 21st century we witnessed a revolution – the world community decided that it was not possible to let 30 million people die in Africa because of the lack of medicine. There was a tremendous struggle in 2000-2005 for letting the pharmaceuticals be produced in India and other countries where they have the capacity for scaling up the production and selling at very low costs. So if a country is in a desperate need of putting its people on treatment and it can pay only the required minimum for the drugs and not a penny more then we arrive at the situation when a consensus on that price is achieved. Thanks to the competition among generic drug companies in India and other countries we saw the decrease of the prices. If you don’t pay for the patent or the interests on the innovation you can have the medicines at very low cost. Russia is considered upper-middle-income country, it has money. At the same time the country has huge dynamic, outside the African one it is the biggest we know of. So for the Western European prices it’s absolutely impossible to offer treatment to everyone. I think that for the last 10 years many of us who have been working in the communities were discussing the question of medicine affordability and equity of access. We cannot change the world and put every country on the same economical level but we can at least defend every person with HIV, hepatitis, TB or any other disease, ensure they have access to the best medicines at a price that their national systems can pay. The reduction of prices in Russia is possible and is happening right now. I remember the first time when we discussed the question of prices in Russia, it was several years ago and they were 5-10 times higher compared to what they are now. Still they need to go down further. If Russia wants to achieve the set goals by 2020, 1 million people should be on treatment. It is a big commitment and the cost of drugs needs to be much lower then 500 US dollars per year. In a huge country like Russia quality ARV drugs can be produced locally, I know you’re working on that. They undoubtedly should be pre-qualified so that the patients feel safe by using the medicines produced in your country. I believe joint ventures with India are possible. Russian patients have the right to the best drugs, same as South African or Portuguese patients, they should not be confined to only using the drugs they are already out of patent. You should have an opportunity to negotiate the production of the best drugs possible. We are here to assure you that you are not alone in this, you have our full support and solidarity. We live in the same world and we can put enough pressure to change the situation.


  • How do you see the role of civil society champions in bringing the prices down?

Their role is critical. It cannot happen without the participation of the civil society. Businesses tend to be non-transparent and the citizens need to know how public money is spent. Civil society representatives know the best alternatives, they know how many patients need to be treated, they understand that the system has to work in the interest of the patients, they can contribute to more transparency, more honesty in the system, more pressure over the distributors. I strongly believe that this pressure and this participation is critical in bringing the prices down worldwide. Civil society in Russia is highly qualified and courageous, I hope it becomes the driving force for changes.


  • You have been living with an open HIV status for over 20 years. How has the civil mobilization changed over this time? What do you see in our region?

The HIV epidemic changed a part of the world. I remember being confronted by this epidemic when HIV infection meant fatal outcome. There was nothing to be done and people were dying like flies. They were diagnosed with AIDS, frequently at a very young age, no treatment was available. There was this huge mobilization from the people living with HIV urging for more money to be allocated on research. I remember I became a treatment activist after seeing a sign during a march that said “We need good research, we don’t need hysteria. We need investment in research, we don’t need to discrimination”. We had the first medicines in 1987 and then finally in 95-96 we got efficient combinations for the first time. Unfortunately, with huge side effects – they changed your body, took the fat from your limbs and your face, shifted it to your belly, gave you a buffalo hump etc. Around the year 2000 we started to get very efficient drugs. And then the question was – how do we give those drugs to everybody in need? The fight that I was involved in the 90s was completely different from the fight that we are having now. I dug deeper into the situation in the region of Eastern Europe and Central Asia not very long ago. It was strange because I witnessed a sort of a replication of the situation that we had in Portugal 15 years ago: a huge epidemic of drug consumption and drug injection, very young people getting infected, the system not prepared to respond to these situations and an alarming spread of the epidemic. Some colleagues I met here in Russia tried to explain it to me. They said that denial was one of the major causes. Battling it is fundamental. In Portugal when we put the truth, the reality in the open is when we got additional commitments and resources to control the epidemic. The activists in the 80s were very passionate about their cause, now we have to be more strategic, more informed about epidemiology, public health. In the end the important thing is that every human being has the right to health care. We are where we are now because we were born with rights. It is the only way to move forward.