Dylan Gray writes about the documentary film he made FIRE IN THE BLOOD which tells the story of how Western pharmaceutical companies and governments blocked access to low-cost AIDS drugs for the countries of Africa and the global south in the years after 1996, and of the people who decided to fight back.
If you’re dying and there is knowledge that can save you… it is a crime not to use that knowledge to save somebody’s life, if you can do it.
2001 Nobel laureate (Economics)
There is no developed country which would have tolerated the loss of millions of their citizens while life-saving drugs were available.
Peter Mugyenyi, MD
Founder-Director of JCRC, Africa’s largest
HIV/AIDS treatment and research centre
Drug companies are not there to protect the Third World. They’re there to make money. Pure and simple. That’s it.
Peter Rost, MD
Former Vice-President, Pfizer Inc.
Like many documentary films, Fire in the Blood began with a short article I happened to read in the newspaper nine years ago, one of those from which it is plain to see that what is going on between the lines is far more intriguing than what is in them. The piece dealt with the ‘power struggle’ over low-cost AIDS medication for the global south, and took a decidedly belligerent tone toward the coalition of activists, generic drugmakers, public figures and civil society organisations it accused of conspiring to bypass international patent laws in order to halt the carnage of HIV/AIDS in many countries where people were dying in shocking numbers. By sheer happenstance, a colleague I was sitting with as I was reading this (later my partner) mentioned being related to one of the key figures in the article, Yusuf Hamied, then the head of the socially-conscious Indian generic drug company Cipla, whom the writer of the article seemed intent on damning as a “pirate”, even though as far as I could tell he was doing exceptionally important and laudable work. Taking advantage of this connection, I had the opportunity to meet and get to know Dr. Hamied in Bombay several months later, and through him a number of the people who would later become key contributors to the narrative of Fire in the Blood.
Through getting to know and talking with these people, I began to learn the story of the deliberate, systematic blockading of safe, effective and available low-cost medicine to fight HIV/AIDS in the hardest-hit countries in Africa and other parts of the global south at the height of the AIDS pandemic: an action which resulted in ten million or more painful, totally unnecessary deaths and which I would come to view as one of the great crimes in human history.
Aside from basic current affairs reporting, there was, as far as I could tell, no book or film which set out to examine this as an atrocity (as opposed to an “unfortunate-but-inevitable” phenomenon), to investigate how such a thing could have come to pass and go virtually unremarked-upon – with no one at all called to account – and then begin fading into the mists of time. An otherwise brilliant, four-hour PBS documentary on the history of AIDS released in 2006 to mark the 25th anniversary of the first diagnosed cases, for example, didn’t even mention it.
Three things had quickly become clear: (1) this was an immensely important historical subject about which there was essentially no adequate record, (2) the story was quickly being lost (even many people I met who were deeply involved were beginning to forget the details of what happened, often remarking that no one had ever asked them these questions) and (3) the groundwork was being laid for similar assaults on access to medicine – conceivably with even more horrific consequences, unimaginable as that might seem – to occur in the not-too-distant future. After unsuccessfully trying to convince a few documentarian friends to take the project on (they immediately saw what a massive amount of time and work it would demand from anyone foolish enough to do so), I woke up one morning in early June, 2007, clear in the realization that the only way anything was going to happen was if I were to do it myself, regardless of my obvious lack of background in non-fiction filmmaking.
Even though what I originally thought would be a one-and-a-half or perhaps two-year project has turned into almost six, I still feel incredibly grateful to have had the opportunity to tell the story of Fire in the Blood – and that of several of the incredibly brave and inspirational people who came together to break the blockade of AIDS drugs to Africa, thereby saving millions upon millions of lives in the face of intense pressure and resistance from the world’s most powerful governments and corporations. What quickly emerges, however, is that, while the specific history of HIV/AIDS in Africa: the incredible devastation it was wreaking across large swaths of that continent, and the disdainful indifference patent-holding pharmaceutical companies, and so many others in the West had for the idea of extending treatment to the tens of millions of Africans in desperate need of it, was uniquely powerful and striking in its gross inhumanity; this was never destined to be a story about AIDS.
It in fact clearly needed to be a story about global commerce, the degree to which the business interests of giant corporations completely supersede those of the human race – no matter how cataclysmic the consequences might ultimately be – and more generally it serves as an exceptionally illustrative tale about how we as human beings treat each other.
The more one explores the prevailing system of developing and commercializing medicine, the more one is struck by its essential contradictions. The system of “intellectual property” rights, which originally evolved on the principle of serving the public interest, seems in this case (as in many others) to do almost precisely the opposite. Those who claim to be “innovators” have no apparent interest in innovating outmoded business models which are disastrously flawed and utterly ill-suited to alleviating public health problems. Companies which claim they need to charge astronomical prices in order to recoup their huge expenditures on innovative research actually do precious little such research, and spend vastly more on marketing, lavish executive salaries and paying lawyers to extend their lucrative monopolies. Meanwhile, governments which actually fund the overwhelming proportion of global basic drug discovery research all but give the fruits of this research away to giant, profit-crazed corporations, which then proceed to sell the resulting products back to government and the public at wildly inflated prices, meaning that many of the luckless taxpayers whose money funded the breakthrough research in the first place will suffer and die without receiving any benefit from it (and may well go bankrupt in the process).
Regulating “Big Pharma” is the only area of politics I can think of where you find people on the right side of the political spectrum howling in favour of government-granted monopolies, while those on the left loudly bang their drums for “free market competition” and denounce patent restrictions for “distorting the marketplace” and “not allowing capitalism to function.”
Having spent so many years working on this project, consciously attempting not to take an ideological approach to the subject, I nonetheless often find myself astonished that we find ourselves where we do with medicine, given that the stakes are so incredibly high and we are clearly doing such an abysmal job at it. 84% of worldwide research for basic drug discovery comes from government and public sources (Light, BMJ, 2012), and the proportion of public money only rises where life-saving drugs are concerned. Yet the world, both rich and poor, is getting a terrible deal, despite investing tens of billions of taxpayer dollars per year on finding new and better drugs. The levels of profiteering on patented medicines are shocking, and out of all proportion to the expenditures involved. Yet of course this can only happen with the complicity of officialdom. I often say that the real villains of this story are not pharmaceutical companies or their fearsome lobby, but national governments which instead of fulfilling their mandate to protect the public interest, and in particular to safeguard the basic well-being of the most vulnerable in society, invariably do the exact opposite when it comes to pharmaceuticals. One can speculate as to precisely why this is, but where such vast sums of money are concerned, the conclusions are unlikely to be surprising. The companies, meanwhile, behave more or less as any capitalist entity might be expected to under the existing framework, using their “fiduciary duty” to maximize profits for shareholders as a fig leaf whenever anyone asks.
Far from improving, things are actually getting progressively worse. Using international trade mechanisms, Western governments led by the United States continue to work relentlessly to cut off supplies of affordable generic drugs to low- and middle-income countries, and if anything have only redoubled their efforts in recent years. Many of these schemes are now entering their end games, in particular the proposed EU-India “free trade” agreement and the multi-country trade deal known as the Trans-Pacific Partnership (TPP), both of which contain harsh provisions intended to expand markets for Western brand-name drug producers at the expense of access to affordable medicine for huge swaths of the world’s population. Which is why it is sadly no exaggeration to say that a catastrophe like the one which occurred during the years lower-cost generic AIDS drugs were withheld from Africa may just be a taste of things yet to come. As Dr. Peter Mugyenyi, director of Africa’s largest Aids research and treatment centre told me a short time ago, “We are on standby awaiting another bloodbath.”
This would all be incredibly frustrating in and of itself, but it is only more so since things so clearly need not be this way. Once monopoly is removed from the equation, things quickly look very different indeed. Earlier this year, India’s Supreme Court reached an extremely important decision in a case brought by the Swiss-based pharma giant Novartis, which was appealing the denial of an Indian patent on its leukemia drug Gleevec (also called Glivec). The case was mainly significant for two reasons. It confirmed that India (unlike other major countries) would not grant patents on minor modifications of existing drugs without substantial benefit. In fact, such patents are the bread and butter of the pharma industry: an estimated 90% of drug patents have no meaningful clinical advantages for patients, but are used to extend monopolies, thus impeding access to lower-cost generic versions. India’s stand – which is fully in line with international agreements to which the country is signatory, most notable the TRIPS (Trade-Related Intellectual Property) Agreement promulgated by the World Trade Organization (WTO) – will undoubtedly serve as an important example which other countries will feel emboldened to follow, particularly those in the global south which are struggling to provide their populations with affordable medicine in the face of enormous pressure from Western trading partners.
More importantly for the poorest of the poor – a huge proportion of whom live in India itself, as well as in dozens of ‘least-developed countries’ with no capacity to produce medicines – the judgment reiterates India’s longstanding commitment to balance incentives for research and development of medicine with access to the resulting products, not just for elites but for the general population; and since India is the largest exporter of generic drugs on the planet – often referred to as “the pharmacy of the developing world” – this commitment provides hope and a measure of security to people and countries throughout the world who are reliant on Indian generic medicines, which in a great many cases represent the only affordable option available to them.
Monopolies enable profit-hungry drug companies to focus on where they can charge the highest prices and maximize profits: generally this means products for the richest sliver of the world’s people, and focusing on the ailments those segments tend to suffer from and are willing to pay handsomely for. In the case of HIV/AIDS, notwithstanding the fact that it was (and is) overwhelmingly a developing-world problem – with 95% of HIV-positive people living in the global south – the market for HIV drugs in the West was still a very lucrative one for brand-name drug companies, which went to great lengths to protect it. Global health needs which affect mainly poor people in developing countries tend to be of no interest to these companies, for obvious reasons, and therefore little money is spent on research into such things as malaria, river blindness, and so on. While this is a problem which urgently needs to be addressed, it will likely never be alleviated under the current system which entrusts development of medicines to for-profit corporations.
For other diseases, namely those which impact communities both rich and poor, there can be little doubt that the prevailing arrangement is fundamentally unsustainable and incredibly destructive (as well as wasteful and immoral). Even the wealthiest countries increasingly suffer from its gross imbalances: nearly half of all Americans now say they have problems affording their prescription medicines and numerous countries with advanced public health systems find themselves unable to pay for high-priced new drugs (especially those for the treatment of cancer). In resource-poor countries, with little in the way of public support and the vast majority of drug purchases coming directly from patients’ own pockets, the situation is infinitely grimmer. Even if the industry’s claims about its vast investments in R&D were truthful, which they very clearly are not (GlaxoSmithKline’s CEO Andrew Witty recently referred to the pharma lobby’s oft-repeated figure of over a billion dollars invested by drug companies for each product which successfully makes it to market as “one of the great myths of the industry”), none of us can be satisfied with a set-up which systematically excludes all but a tiny segment of the world’s population from the benefits of (overwhelmingly taxpayer-funded) scientific research because of corporate-controlled monopolies on medicine.
How then to incentivise needed investments by private sector players without creating monopoly scenarios? There are many feasible solutions, including a number with significant historical precedents, such as prize funds (whereby organizations or consortia of scientists would work on a given public health problem and receive a significant cash prize from a government or group of governments if they succeeded in solving the problem, or a lesser prize for solving some aspect of it). Perhaps the simplest approach, however – one which could be instituted virtually overnight, at little cost and with minimal bureaucracy – is that which was used in Canada for almost 70 years during the 20th century, whereby monopolies on medicine were explicitly prohibited, but patent-holders received a statutory royalty on any sales of generic equivalents based on their patented products. This arrangement maintained substantial profit incentives for innovation, while ensuring the public was not held hostage to monopoly pricing (it did not, however, allow for the kind of astronomical profits to which the industry had become accustomed, and, after decades of trying, US trade negotiators acting on behalf of the powerful American pharma lobby had it killed under the terms of the 1992 North American Free Trade Agreement).
Though many in Canada now regard the decision to cave in to US government and pharma industry pressure and dismantle this highly successful system as one of the single worst decisions their government has ever made, the fact that it worked so well for so long (and that in an advanced economy with a significant R&D ecosystem) nonetheless serves as a time-tested example of how incentives for research and access considerations can be equitably balanced, without creating monopolies which obstruct access to new medicines for decades on end, resulting in needless suffering and death for tens of millions of people every year.
As former Vice-President of Pfizer Dr. Peter Rost says at the end of Fire in the Blood, however,
Why would anybody who is benefiting from this system want to change or tweak it? None of the people who make money off of it, none of the people who derive power out of it, want to change it.
Anyone who knows their history will tell you that it is almost always foolhardy to expect the powers-that-be to do the right thing, even when proven, easy-to-implement solutions are staring them in the face. Nonetheless, as we have seen time and again – in the story of Fire in the Blood and numerous other cases – a few key individuals, armed with clear, strong arguments and ready to go to the barricades for their beliefs can quickly expose the emperor as having no clothes, prove the impossible is possible, and ‘suddenly’ the world changes for the better.
Fire in the Blood by Dylan Gray was selected for the Sundance Film Festival 2013