In 2001, I stood in the UN building in front of a huge picture of a woman dying with somebody next to her holding her hand. The writing under the poster read: “you mustn’t die alone”. I wanted to shout: “she mustn’t die full stop”. At that time the new antiretroviral medicines had started to work miracles, bringing people from their deathbeds back to life. Yet as a Ugandan doctor truly said: ‘the medicine is in the North but the disease is in the South’. The pharmaceutical industry was happy to sell the medicines at very high prices in rich countries while turning a blind eye to the rest of the world.
It was largely thanks to a huge global mobilisation of civil society led by people living with HIV that leaders and pharmaceutical companies started to feel embarrassed about denying access to life-saving medicines to millions of people. But it was only after generic competition kicked in that access to medicines became something policymakers talked about. An offer by an Indian company to sell a cocktail of the three basic medicines for one dollar a day slashed the prices of antiretrovirals, meaning that today over 9 million people are on treatment,, including over 7 million in Africa.
Generic competition was possible because India had not at that time implemented the Trade Related Aspects on Intellectual Property Rights (TRIPS) and thus was able to manufacture the medicines. Since adopting TRIPS, India’s ability to produce medicines has been limited. Yet the country has been under immense pressure from multinational pharmaceutical companies, the US and the EU to tighten its IP rules even further and thus to limit access to medicines to those who need them.
It seems that the world is obsessed by granting more and more monopoly power to pharmaceutical companies rather than by investment in research and development (R&D) for medicines and vaccines that are needed for public health.
For this reason Ebola is the other side of the coin to HIV as the intellectual property rights system allows the market to shape R&D priorities, rather than public health needs. That same system allows companies to charge high prices that are unaffordable in developing countries as the HIV crisis taught us.
The fear of Ebola crossing borders and affecting people in the US and Europe has changed the situation – clearly there is now a market for travelers, but more importantly the threat of a global epidemic means that donors may be willing to pay for products that contain the spread of Ebola and other hemorrhagic fevers.
The most promising vaccines that are now being rushed through clinical trials have been developed with public money, mainly from the governments of the US, Canada and the UK.
It is not ethical, sustainable nor safe to leave commercial interests decisions and financing for R&D for products, capable of modifying global health threats, to be dictated by the commercial interests of pharmaceutical companies.
Governments, under pressure from multinational companies, have agreed to a profit -based system (TRIPS) instead of looking for more innovative ways of financing R&D.
Throughout the history of medicine’s development, public funding has played an essential role in developing breakthrough medicines, including for the treatment of HIV and now prevention of Ebola. We need to change the present monopoly ownership system to allow public funds their proper place in stimulating accessible and affordable technologies that make our world a safer and more humane place.
With great enthusiasm I started my 33 hours flight from Bolivia to the big country-continent: Australia. But my first night in Melbourne was filled with tears as I turned on the television and heard of the attack to the Malaysian flight MH17.
The opening ceremony of the 20th International AIDS Conference paid respect to the scientists and advocates who died in this tragedy. Throughout the conference, almost all plenary speakers spoke about the “now more than ever” feeling and the importance of Stepping Up the Pace of the AIDS response. In this blog I share some of my reflections from my week in Melbourne.
• I was reinvigorated by the effective activism on Hepatitis and HIV as activists protested against the hypocrisy of the big pharmaceutical industry pricing life-saving medicine beyond the means of people and governments
• It was interesting to learn about the issue of “Grey HIV” as we are seeing people living with HIV getting older in developing countries. Getting old with medications and with HIV looks scary for me because I am also living with HIV and I am already 37!
• It was inspiring to hear daring talks about sexuality in conservative contexts such as those in some Muslims countries and Christian conservative settings. I was pleased to hear that faith leaders are increasingly tackling this issue and talking to their peers
• Although the theme of the conference was “No one left behind”, I heard a lot of the discourse of “shared responsibility” in the AIDS response. Ultimately, this is the idea that countries will have to “find your own funding”. For Middle Income Countries (MICs), the pressure is already mounting and there is a real risk that these countries will be left behind
• I did not hear a lot about women and girls as a key population and the links to gender based violence and HIV. Moreover the debate on vulnerability to HIV infection and impact must recognize that each community and country has its own vulnerabilities that need to be considered in AIDS response
• Children living and affected by HIV were notably absent and this is a fundamental mistake, given the fact that this group is really voiceless and vulnerable. There are huge gaps in the coverage of treatment for HIV and TB for children. I am really enthusiastic about UNITAID because it invests in shaping the market for diagnosis and treatment of children
• As someone coming from Latin America, I felt the strong absence of my region, not only in that very few delegates from Latin American and the Caribbean were present, but also in the fact that the UNAIDS’ “global analysis” included incomplete data from these two regions. At the conference, I realized that there is much misunderstanding about Latin America and the Caribbean. Some donor countries seem to believe these two regions have universal coverage of treatment and prevention services. The reality is that Latin American countries vary a lot and there is huge inequality and disparity.
At the end, I left Melbourne without seeing the sun nor one Kangaroo!
Reflections on AIDS 2014 – Stepping up the Pace and Leaving No one Behind By Georgia Burford (CAFOD) The International AIDS Conference in Melbourne 20-25 July 2014 is the 20th gathering of the largest regular conference of any health or development issue, bringing together politicians, scientists, epidemiologists, practitioners, policy makers, the private sector and communities of people living with and affected by HIV. There is uniqueness in this fight against HIV in that it is a social movement, pulling people together and putting people at the forefront of the response to sustain our efforts on addressing HIV. It’s a powerful reminder that HIV has not gone away and is still affecting the lives of many today. The theme of this year’s conference was ‘Stepping up the Pace,’ summarised by Bill Clinton when he said ’It says much good work has been done, but it’s not an excuse to slow down. Right now we must redouble our efforts on areas like stigma and discrimination, which after 30 years is still increasing in some regions. We have the tools; we need to step up the pace.’ There has been remarkable progress since the 1980s, when HIV was a condition that had no name, no tools to diagnose, prevent or treat it. Today, there are 15 million people on treatment, yet there are still alarming challenges that must be tackled in order to even contemplate an AIDS free generation. Statistics from 2013 show there were 1.5 million HIV deaths, 2.1 million new infections and 35 million people living with HIV. Of the 35 million people living with HIV, 55% (19 million) don’t know they have the virus. They haven’t been tested and if they don’t find this out, they will die. The conference highlighted many reasons as to why people do not access or drop out of treatment. Reasons can be due to lack of services; however, a large part is due to stigma. Studies and personal testimonies have shown that:
In many cases it may be easier to ignore the positive status than deal with the consequences of seeking support. The need for this is highlighted in a recent report produced by STOPAIDS Entitled “Increasing DFID’s contribution to Addressing HIV among key populations which makes a series of recommendations about ways to advance the rights of communities who are disproportionately affected by AIDS. The report was launched at the conference alongside a recent film focusing on people who use drugs in Moldova. We must tackle stigma and discrimination at every level including state policies. The AIDS 2014 conference organisers released the AIDS 2014 Melbourne Declaration, calling for an end to discrimination against people with HIV and the eradication of criminalising laws and practices.  Another key issue highlighted at the conference is the importance of monitoring viral load to ensure PLHIV are able to access necessary medication in order for treatment to be optimally effective. However, currently very few high-burden countries routinely offer viral load testing to people receiving HIV treatment. Since 2012, UNITAID has supported projects working to make viral load testing technologies available in resource-limited settings in Sub-Saharan Africa, but these do not yet address viral load monitoring needs on the large scale required. More efforts are needed to make new viral load testing technologies must be affordable and appropriate for poor resource settings in order to be used effectively. In Melbourne, UNAIDS launched the Diagnostics Access Initiative which calls for improving laboratory capacity to ensure that all people living with HIV can be linked to effective, high-quality HIV treatment services. Lack of access to Treatment is still a huge concern especially that there is a 10 fold price increase from 1st line to 2nd line treatment. In reality, the international community is facing huge challenges to control HIV. Therefore, governments, policy makers, funders, and civil society need to:
In the expressive words from Sir Bob Geldof, ‘We have come so far but there is a preposterous reluctance to fund the last mile. The advocates get tired, the same message goes out to the same people and it becomes less effective.’ I can’t help but think that many of the UK based members of the STOPAIDS network feel the same. It’s not only a challenge on the global stage, but often within many of the organisations we work in. We must not become those tired advocates beating the same drum, but come back from the conference championing the successes of our work over the last 30 years and enter a phase of renewed energy to ensure we step up the pace and most importantly leave no one behind.
A new documentary film opening in UK and Irish cinemas this week tells the story of what its makers call “the Crime of the Century” – how available low-cost antiretroviral medicine was blocked from reaching Africa and other parts of the global south in the years after 1996. The film signals the dangers of the increasingly-perilous outlook for access to essential medicine in developing countries.
Fresh from its much-talked-about premiere at the Sundance Film Festival in Park City, Utah, last month, Fire in the Blood opens at the Irish Film Institute (IFI) in Dublin and the Prince Charles Cinema in London later this week. The film will be released in cinemas across the UK on Monday 25th February. The film tells a harrowing story of inhumanity and heroism, with a highly compelling cast of characters. It details how it could come to pass that millions upon millions of people, primarily in Africa, were left to die horrible, painful deaths, while the drugs which could have saved them were being safely and cheaply produced and distributed just a short airplane ride away.
“I was curious to see what the reaction in the US would be”, says writer-director Dylan Mohan Gray. “So much indoctrination about the necessity of high drug prices has gone on there that the Big Pharma Research & Development (R&D) defence is very much a sacred cow… even those with profound reservations about how the industry behaves tend to grudgingly accept its validity. This is very easy for me to understand, since I was more or less that way myself when I began digging into all this.” Gray was, however, gratified to discover that the American audiences who waited in line to attend six sold-out screenings at Sundance had much the same reaction after seeing the film that he had had when he began to work on the story. “There is a very strong sense of betrayal when people find out what their governments have done in their name… and a very powerful conviction that the prevailing system of developing and commercialising medicine has to change”.
As the film points out, drug companies actually do very little basic research for drug discovery. “84% of drug discovery research is funded by government and public sources”, says Gray, citing the landmark work of Professor Donald Light, “Pharmaceutical companies fund just 12% of such research, while the lion’s share of their spending goes into marketing and administration.” These facts will come as little surprise to those familiar with the industry, but many have never really contemplated the repercussions of pricing essential medicines at levels only a tiny sliver of the world’s population can afford.
While the film tells the story of how multinational drug companies and the Western governments collaborated to keep low-cost generic AIDS drugs out of the hardest-hit countries at the height of the HIV/AIDS pandemic – at a cost of ten million or more lives – it also tells the fascinating story of the unlikely group of people which came together in order to try and break this blockade. Among this number were front-line doctors, HIV-positive activists, generic drugmakers, intellectual property specialists and individuals of global stature such as Desmond Tutu and Bill Clinton (both interviewed in the film). “That’s what really set this story apart for me”, says Gray. “It was a real-life David versus Goliath tale, full of incredibly interesting, daring, courageous mavericks who took on the world’s most powerful companies and governments to do what virtually everyone else at the time said was impossible (i.e. mass treatment of HIV/AIDS in Africa), and against all odds they won…”
While the inspirational story of how low-cost generic AIDS drugs, first and foremost from India, came to save millions upon millions of lives in Africa (and beyond) is at the heart of FIRE IN THE BLOOD, the film concludes on a distinctly alarming note. “The story this film tells was on the verge of being forgotten, something we can’t afford to let happen”, says Gray. The film details the tireless efforts of Western governments, working on behalf of industry, to impede and cut off supplies of affordable generic medicine from countries like India and Thailand to other parts of the global south, primarily by means of bi- and multilateral trade agreements which low- and middle-income countries are placed under enormous pressure to sign.
“The drug industry is stagnant, its pipeline is anemic and it has pinned all its future hopes on China and India”, notes Gray. “Almost all these companies are publicly-traded, which means their bosses have to keep turning profits quarter-by-quarter if they want to try and keep their jobs… as they see it, they simply can’t afford to take a humanitarian view on issues of access.” With the World Health Organisation having estimated that one-third of all deaths worldwide are attributable to treatable and preventable diseases, largely due to lack of access to medicine, the stakes could not be higher.
Meanwhile, for all its insistence that high prices are the only practical trade-off for an industry that spends so much money on R&D to find new and innovative medicines, Gray noted with a wry smile that the who’s who of senior pharma executives will be gathering in London for the industry’s can’t-miss event, the Pharma Summit, just a few days after FIRE IN THE BLOOD opens theatrically in the UK. “I was amused, but not surprised, to read that the theme of this year’s summit is Should pharma cut its losses and get out of R&D?”.
Araddhya Mehtta is a global heath campaigner for Oxfam GB.
In 2001, I stood in front of a huge picture in the UN building in New York. It showed an African woman on her death bed with another woman hold her hand. It said: “You must not die alone”. I screamed: “You must not die full stop! There is treatment!”
My friends in the UK were living and working thanks to treatment provided free through the public health system, so why not this lady?
Today, interviewers ask me: “What are the major challenges for HIV in country X?” My response is that there are four challenges facing all countries dealing with HIV: funding, health systems, medicines and prejudice.
AIDS has uncovered many ills in the world: donors’ lack of long term commitment, weak health systems and flawed drug research and pricing. Not to mention deep-rooted stigma, prejudice and discrimination against marginalised including women, men who have sex with men, drug users, and sex workers.
Achieving the goal of an AIDS-free generation and the control of HIV is in sight but action is needed now.
1. Donors dragging their feet
Firstly, donors are dragging their feet from supporting the Global Fund which provides grants to countries to finance effective prevention, treatment and care programmes. Clearly donors need to re-think their reluctance. The more people we treat now and the more infections we prevent, the less costly the AIDS response will be in the near future and the more lives will be saved. The opposite is also true: ignore scaling up of prevention and treatment now and pay later not only in terms of lives lost but also in terms of money needed to contain an escalating epidemic.
2. Drug companies – part of the problem as well as the solution
Second, drug companies! They are a big part of both the problem and the solution. Thanks to Indian generic companies’ competition, the price of first line antiretrovirals dropped from £10,000 per patient per year to under $100. But now patients need more effective medicines and some need new ones which are still under patent. To avoid the patent block, civil society organisations and others supported UNITAID, the international drug purchasing facility, to establish the Medicine Patent Pool (MPP). MPP acts as a one stop shop where the big international pharmaceutical companies license their medicines to the pool and then generic medicine manufacturers can make the needed combinations – paying royalties on sales in countries that have patent on those drugs.
Yet so far, the big companies are dragging their feet or refusing to join. Only Gilead issued a license, which represents a good start but still needs to be improved. ViiV Healthcare (created by GSK and Pfizer), Boehringer Ingelheim, Bristol-Myers Squibb, Roche and Bristol Myers Squib are taking a long, long time to negotiate with MPP. I am not sure when they will conclude these negotiations with decent licenses. We cannot wait forever!
Other companies – notably Johnson & Johnson, Merck and Abbott – refused to join. Instead, they are trying hard to polish their public image by cutting separate deals with generic medicine manufacturers but the terms of the licenses are not transparent and they exclude patients in many countries. For example, the latest J&J deal on the drug “darunavir” excludes the West Bank and Gaza where the drug is sold at USD 5900 per patient per year!
When will drug companies put patients’ lives before making huge profits?
3. A critical need to invest in public health systems
The need for treatment programmes highlights once again the fact that investing in public health systems must be a priority for all governments and donors. Without qualified health workers (including managers, planners, pharmacists, etc) infrastructure, health information systems, and medical supplies, we will not be able to scale up treatment to reach all who need it. Yet some government donors still see investing in public health system as a remote goal to dream about rather than an urgent action to be performed now. A decade of increased funding for HIV response and most countries still face bottle necks in the drug supply chain – because of a lack of investment.
4. Addressing discrimination
Last but not least, all governments, community and societal leaders must address the deep-rooted discrimination in their societies. Countries cannot continue to ignore the rights of women, girls and marginalised groups under the cover of culture, religion or any other banner. In this age where young people across the world are communicating and sharing views and ideas about rights, it is not possible to continue with discriminatory laws and rules.
For a start, access to prevention, treatment and care is a right for all.
Mohga Kamal-Yanni is a Senior Health and HIV Policy Adviser at Oxfam GB.
This blog was originally posted on Oxfam Policy and Practice website on the 1st December 2012.