Statement on pharmaceutical industry and the non-transparency of pricing
Access to and affordability of medication and diagnostics is one of the core thematic areas for AIDS Action Europe. In our work, we focus on capacity building of patient activists on the current systems of research and development, approval of drugs and diagnostics, the nontransparent pricing procedures, and most importantly, providing examples of solutions to bring prices of medicines down, as well as how to enhance access. With this statement, and in line with our activities, we would like to express and explain our concerns with regards to the current trends and developments that influence prices and affordability of prevention, medical treatment and care, which are some of the major barriers to universal access to lifesaving medicines for HIV, viral hepatitis, TB and other related diseases.
This spring we were observing with growing concerns the situation developing in the USA around the access to HIV preventive medication (used for PrEP). With clear understanding of the impact that developments and trends at the pharmaceutical market in the USA, a key influencer of the drugs pricing policies worldwide, could bring to the WHO European region, we decided to voice that we are alert and pay attention to this specific case going on the US.
Reported data shows that around 70% of HIV treatment research and development funding comes from the public sector: public universities, research centres, ministries of health. Similarly, the discovery that Truvada can be used as pre-exposure prophylaxis or PrEP, which can prevent a person from getting HIV, took place in the public sector. The original discovery and patent for Truvada as part of HIV therapy belong to Gilead. In 2006, Center for Disease Control in the USA, funded by US taxpayers’ money, discovered that Truvada can be also used as a method of prevention for HIV, and received the patent for this in 2015. However, CDC received zero revenues from marketing and selling of Truvada as PrEP.
We observed similar developments a few years ago with hepatitis C treatment. Treatment that could finally play the key role in elimination of hepatitis C. Treatment that was not affordable for those who needed it the most due to aggressive pricing policies of Gilead. At the same time, it stayed unclear what was behind high pricing, why countries accepted it.
To this day, we have very little access to information regarding how prices for different medications are set and decided upon or how much investments comes from the private sector into research and development, this information is usually hidden behind confidentiality also known as “corporate or trade secrets”. However, these prices are established at the expanse of human lives and we must keep pushing for pricing transparency.
Andrew Hill, pharmacoecomonist, presented at the HIV Treatment conference in Glasgow in 2016 that, according to his calculations that were based on the price of active ingredient, costs for production and packaging and even included 50% margin, the generic price of 12 weeks of Sobosbuvir should be around 55 Euro. Comparing these 55 Euro with 50 000 Euro for course in Germany at that time, or even 13 000 Euro for course in Spain shows how extreme and how extremely inhuman price ranges have become.
In 2016 Gilead’s profit from Sovaldi and Harvoni, important drugs for curing viral hepatitis C infection, was 40 billion dollars. Including a 10-billion-tax avoidance due to being registered in Ireland. Just this profit alone, according to Andrew Hill, would be enough to treat everyone with hepatitis C all over the world.
With this aggressive approach, Gilead again fuelled the movement for affordable medication. One of the objectives of this movement is changing the narrative around research and development in order to separate it from sales (de-linkage model).
The world set the goal to end AIDS by 2030. This will not be possible to achieve without access to medication as well as to combination prevention. In many countries where we see issues with access, the pricing of medication is often the main barrier. Even in countries where medications are covered by national health insurance, high cost of medicines put additional burden on health budgets and affect access.
AIDS Action Europe as a network of HIV/AIDS service and community based organisations, will keep on watching the developments in the sector and Gilead but also other pharmaceutical companies to do their part on ending AIDS by 2030. We recognize the contribution of the industry but we also want the epidemic to come to an end. We urge governments, after exhausting all other possibilities, to enforce its patents by taking legal actions against companies that appear to be infringing on their patents. Public investment should be returned and affected populations must be treated. It is time to end the epidemic.