by Chris McGivern & SF Team, 1 October 2019
Achal Prabhala worked on AccessIBSA as a Shuttleworth Fellow from 2016-19. His goal was to increase access to medicine and improve innovation in healthcare by pushing for intellectual property reform in India, Brazil and South Africa. We caught up with Achal to reflect on his experience over a successful and illuminating three-year fellowship, and find out what happens next...
For the past few decades, the pharmaceutical industry has been taking advantage of weak and incredibly damaging legal frameworks for intellectual property and patents. These laws - thick with complex and technical language - are devised in wealthy countries where the ears of policymakers are finely tuned to the persuasive whispers of pharma lobbyists. They are enacted almost everywhere and enable drug companies to create unjust monopolies and restrict access to life-saving medicines. People die, needlessly, because the right to profit outweighs the right to life.
This is not just a social argument; the market suffers greatly from monopolies, too. While patent laws are supposed to promote innovation, evidence suggests this is a fairy tale. In reality, restricting access to medicine affects industry as well as health. It limits opportunities for small, independent companies to make breakthroughs, and encourages large corporates to direct resources away from developing new, affordable drugs and towards ‘lifecycle management’ - a process critics prefer to call ‘evergreening.’ This shady practice of making minor additions to existing drugs, often with no discernible therapeutic benefits, extends the life of patents way beyond the original terms. And it is far, far more profitable than creating life-saving medicines for rare diseases.
This is a broken system and a systemic injustice. Today, we see weak patent laws institutionalised almost everywhere in the world, thanks to the WTO agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPs), which effectively hands global pharma companies exclusive patents in all markets, and reduces governmental power to make cheaper, generic medicines for their citizens.
But wherever you find injustice, you will always find individuals looking for opportunities for change. People like Achal Prabhala, working at the forefront of the access to medicines movement for the vast majority of his career, who do not accept the status quo.
Achal is a writer, researcher and activist from Bangalore in India. He has spent the last sixteen years exploring the impacts of intellectual property, copyright and patents on access to knowledge, specifically around education and medicine. His path towards this field began in Guyana, in the early 2000s.
Guyana had a worryingly high rate of HIV and - like many other developing nations at the time - was in desperate need of antiretroviral (ARV) treatments for the growing number of its citizens developing AIDS.
“The drugs were too expensive for most low-income countries,” he explains. “A parallel struggle was unfolding in India and many other countries. In many ways, it was the nucleus of the access to medicines movement, and I was enormously inspired by what was happening, and very quickly got involved with activists.”
After moving to South Africa, Achal found himself in a country working hard to rebuild itself and move forward from oppression and turmoil, yet being held back by the cost of access to knowledge.
“In South Africa, for instance, you had all these schools, all trying to do their very best. But the books young students needed to learn were massively unaffordable, to the state who had to buy them for public schools and the students who had to buy them out of their own funds in college. So this led me to work on copyright issues which I did, very wholeheartedly, for several years.”
Achal became a respected figure in the movement, coordinating the Access to Learning Materials project in South Africa and creating the documentary People Are Knowledge, which looked at how the world’s spoken word, traditional history and information could be reproduced online.
“There was tremendous energy around that movement that came from the open source community, who wanted to establish new rules about how culture should be shared, remixed and sampled. But I didn’t feel like I was essential to that particular field in the same way I could be with access to medicine.
“The battle for access around copyrighted material and the monopolies of the mind can dramatically affect the kind of life you have. But to a certain extent, the battle for access to medicine is literally around whether you live or die.”
Pharmaceutical companies are rightly praised for improving and prolonging the lives of millions of people. But we should also inquire about the billions they exclude. By raising these problematic questions en masse, it has a significant impact, as we can see from the public reaction to the plight of millions of people with AIDS during the early 2000s.
Many citizens of developing countries paid the ultimate price. Outrage grew significantly as protestors demanded the right to live. Faced with this uproar and the worst publicity imaginable, pharmaceutical companies re-thought their policies. Some gave up their intellectual property rights to ensure people living with AIDS got the drugs they needed; others created schemes where people could access them for free, or at low cost. They were, effectively, shamed into action.
But AIDS is not the only scourge to health, and people power is dependent on the size of the crowd.
“Structurally, governance for intellectual property for patents in medicine did not change,” says Achal. “And beyond AIDS, there were other medications available for diseases like hepatitis C, cancers, autoimmune diseases and cholesterol. A lot of new drugs were coming out - many of which were really useful and effective - but none priced affordably.
“People who had these conditions were not quite as organised, and the diseases did not have the same degree of international name recognition. There wasn’t as much public sympathy, so pharmaceutical companies could do whatever they wanted.”
Unsurprisingly, they did. And with Big Pharma reinforcing its global power, the access to medicine movement stepped up again, this time with a focus on Achal’s home country. TRIPS - and its granting of monopoly rights to foreign patent holders - had come into effect in 2005, and he and a group of activists worked to re-tilt the balance of power back towards the public’s benefit. The drive to question lax patent laws, create new directives and raise the bar for patent standards in India culminated with a high-profile court case between the Indian government and Novartis. The government won after judges agreed that the cancer drug Gleevec did not deserve Exclusive Marketing Rights as provided under the TRIPS agreement.
The court outcomes were threefold. Firstly, companies making generic versions of Gleevec could continue selling them at $USD 177 to 266 per patient per month. Secondly, Novartis could not sell their version of the drug for $2,666 per patient per month. And finally, it led India to enshrine a stricter patent policy into its laws, to ensure pharma companies could not pass off minor product alterations as real innovation. This new legislation gave India an opportunity to take control of its own health security and is, perhaps, one of the most liberal with regards to access to medicines in the world. However, progress was painfully slow, and for Achal, it just wasn’t good enough.
“So, I started working on access to medicine again in earnest, a few years ago,” he explains. “And I found that third world countries respond curiously. There were small countries which don’t have much economic or political sway, and they would often go along with whatever the US or the EU wanted, or whichever state they were closest to.
“But there were bigger countries like India, South Africa and Brazil, which were leaders in their own continent and had very strong robust independent economies. These countries - coined as BRICS [Brazil, Russia, India, China and South Africa] - were deemed to have the highest economic growth rate anywhere in the world at the time.”
Although Russia and China were out of the question due to their autocratic, closed nature and resistance to national activism of almost any kind, India, Brazil and South Africa offered significant opportunities to test new ideas around access to medicine. All three were democracies and regarded as leading nations in their continents.
More importantly, each BRICS country operated outside of the old, Western order and had the potential to upset the applecart of an unfair global system, massively gamed by the pharmaceutical industry. Achal had experience advising and discussing patent and IP issues at the governmental level in each. He also recognised these three up and coming countries as the very best hope for reformation at scale to create a more rational, equitable patent system that could - and should - be replicated elsewhere.
India was the perfect starting point. Given the Indian patent office was struggling to implement its new model correctly, the next step was to ensure the policy theory became a practical reality. India also acted as a useful template for what could happen in South Africa: the focus here would be on sharpening the minds of decision-makers to the reality of bad patent laws, and then push for policy change. In Brazil - a country in a certain amount of political turmoil at the time - the job was to raise awareness of the impacts of lax patent laws that put the profits of private interests way ahead of public health.
It was a tri-continental approach based on academic research, data and practical examples to expand access to life-saving medicine to those that need it most. The next step was to find someone to fund his idea.
Achal was awarded a fellowship in September 2016. His AccessIBSA project was designed to create a sense of urgency around access to medicine issues, and push for reform of the intellectual property frameworks that surround them. We felt he had the potential to ensure further progress and protection for emerging and developing countries, helping them institute higher patent standards and defending them from attack by private interests. By introducing openness to an industry typically shrouded in secrecy, he could shine a brighter light on the creative ways drug firms extend their monopoly rights. In turn, this could lay the foundations for other countries to consider implementing fairer, more equitable patent laws.
“I’d known the Shuttleworth Foundation for many years, and helped them in various ways in the mid-2000s” explains Achal. “I thought of them straight away.
“We set up the AccessIBSA project under the auspices of the Shuttleworth fellowship. It allowed me to work with large teams in each of the three countries, and to do contracts and other things - always working towards the same goals, but in a different context.”
Throughout his fellowship, Achal employed a three-dimensional approach to his work that involved everything from behind-closed-doors meetings with policy officials to involvement in street protests. His ability to bring together people from all walks of life - industry, activism, academia and government - is a shining example of how an individual can inspire a community around a single goal and have a significant impact.
His work was also an invaluable example of pursuing change that activists in other areas would do well to follow. Strategically, Achal recognised the need to build up from legal foundations with the weight of institution behind him, before starting to poke at the policies culture and practices that lie at the heart of the patent system. Given the myths and PR spin from the pharmaceutical companies, another vital part of the puzzle was to ground everything in evidence. Also, to ensure this is openly accessible to all.
“Often there is no popular support for activism, simply because no one’s aware of the problem,” says Achal. “So the more good, public work we put out there, the better. In our case, we spent a lot of money on data, with rich, deep analysis. And that data was expensive, and is excellent. But because of our ethos, every bit of data is free to use. So, not only can people see our analysis, but they can also use our data and come up with their own analysis. I’m so pleased about that.”
The impacts of this data set have already rippled out to the wider world. A paper written for AccessIBSA by Joseph Stiglitz, Aryan Jayadev and Dean Baker - three of the world’s most prominent economists - referenced it to set out arguments for a new approach for innovation, intellectual property and development. The report is written in several languages, but having been published with a Creative Commons license, it is free to be translated elsewhere, extending the crucial messages into new territory.
“Out of the blue, I got a request,” says Achal. “It was from a leading university in China, and they wanted to translate it. And of course, they could - the paper has a Creative Commons license and is for everybody. I have no doubt there will be more consequential effects of this work, even if we have to wait a while.
“A large percentage of our work is entirely public. A small portion is not, because it would jeopardise certain activities and it would be in bad faith. But I don’t see a contradiction, because everything I do is in the service of openness. We’re looking at monopolies created by patents in medicine, and thinking of dismantling those monopolies as a way of enabling a more open world. Nobody has done that before. And I think it’s a new way of thinking because it doesn’t come with some of the familiar aspects of openness we have been accustomed to until now.
“So there was a lot of trust around the evolution of my process from the Foundation, and they had trust in me that I could lay out a coherent strategy and schedule of work. But there is also mutual trust. I think this is a key part of the fellowship. On my part, I trusted the Foundation to understand the work I was doing and allow me the freedom to achieve the results I wanted.”
Those results have been significant. In India, AccessIBSA has been at the forefront of the conversations on patents and access to medicine, exposing weaknesses and raising national public concerns about its new - supposedly stricter - patent laws.
“In general, we found that Indian patents were really smart. But patents on medicines in the country were still being granted with a 70% error rate,” he explains. “The Indian government still has no idea how to implement its new law. It is a complicated situation that needs a little refinement, but we’re fighting that in two ways.
“First, we were invited to submit comments on how it could be achieved, and we were also invited to structure that process. Unfortunately, that hasn’t taken off yet or hasn’t had that much momentum. We provided the advice, and while it doesn’t mean they are doing the opposite of what we want, they are certainly not addressing the urgent issue in the room. So now, one of the things we need to do is be publicly angry.
“In Brazil, the work was made more complicated by the Brazilian government changing in the last year of my fellowship. It’s not really functional in any discernible way. It’s become more like China or Russia … a sort of autocratic maze where it’s hard to affect policy.
“Even in the two years before that, Brazil was engulfed with political chaos to such a degree that it was really not possible to meaningfully penetrate the country or Congress with anything that was not a national issue. There was no time for something that was not on the front page of the newspaper. And access to medicines is not on the front page of newspapers.”
Despite the challenging political climate in Brazil, Achal managed to complete necessary and vital work. AccessIBSA was heavily involved in stopping a major EU trade deal with MERCOSUR, the South American trade bloc, by researching, analysing and presenting the cost implications for the nation’s health. It also produced a groundbreaking report highlighting government waste when procuring life-saving medicines under unjust monopolies, which will have long term effects on how Brazil decides to shape its patent law in the future.
However, his most prominent win, undoubtedly, came in South Africa. AccessIBSA has pushed a new narrative by working extensively with the media and worked closely with government policymakers as they seek to reform and improve patent law for the benefit of public health rather than private profit. This will be a landmark step for access to medicines, and offers a lot of hope; not just to South Africans unable to afford life-improving drugs, but also as an example to other nations that increased access to medicines is achievable.
“We’re very happy about it,” says Achal. “There is a delay because of elections, but it’s still in process. What we achieved in South Africa happened very early in the process, and we didn’t expect to get as much and as quickly in Africa. But by the same token, we didn’t expect to get as little and as late in India.
“We’ve given the best technical advice, but you also need to get the right people. So in South Africa, not only did we go to the ministers, but we also brought Joe Stiglitz with us. If a Nobel Prize-winning economist is saying higher patent standards is a good thing and would help both Africa and the world, that’s a lot of reassurance.
“But there is also a public issue. Nobody knows about this, because the idea that pharmaceutical companies have invested billions of dollars of their own money into new medicines is one of the great PR successes. Yet it is a misrepresentation.
“There’s a real moral problem with the price of drugs, regardless of whether or not the pharmaceutical companies deserve that money. Regardless of what the access situation is, the manner in which pharmaceutical companies misrepresent the cost of making them is astounding.
“All of them get huge state support. So in the US, for instance, literally billions of dollars of taxpayer money goes into an institution called the National Institutes of Health. And that is further directed to University Medical Laboratory to do research on these drugs.
“Now, pretty much any drugs you take - from antiretroviral to medicines for heart disease and cancer - all of them have their origins in some state funding. But the problem is that the US taxpayers are asked to pay for these drugs twice because they’ve already paid actually part of the development of the drug through the taxes. And then the pharmaceutical company markets them back to the same taxpayers.
“So, it’s true that pharma invests vast amounts of its own money, but only in one or two areas. Beyond that, almost every single other thing they create has had a large percentage of public money invested in it, which is never accounted for.
“This is what I am fighting against: a powerful idea, embedded in the heads of everyone in the world.”
Exposing the public to the realities of the pharma industry became an increasingly important focus for Achal as his fellowship progressed. He worked with campaigners in the UK to successfully drum up massive press coverage around a lack of access to a drug called Orkambi, and he is in the process of making a film about the access to medicine movement. After sixteen long years advocating for more equitable patent laws, there is a sense that op-eds, street protests and lobbying is not quite enough to tip the balance of public opinion.
“I’ve been doing this for a living for a long time, and almost every single person I meet expresses disbelief about the problems with access to medicine today. So I want to make a film on the power of this movement and on the things that inspired me, in the hope that it will inspire others to think about these issues.
“If ordinary citizens don’t understand, governments and corporations can get away with a lot. It’s one of the problems that I have felt working on this over many years - it was the most important thing in the world for me, but no one was talking about it. And I don’t want to do this forever. These sixteen years have been incredibly important to me, but now I’m going to embark on a new professional journey. So this film will be a bridge.
“I didn’t start the fellowship with this intention. It grew out of communicating these important social ideas to beginning to reflect on how communication happens and impacts society. It’s a natural next step, is still in line with what I wanted to do, and also links to the creative art I want to embrace next - writing about culture, cinema and society.
“I can do that because of the flexibility offered by the Foundation. Any sensible, connected, useful idea is welcome. It is something that I’m incredibly grateful for and it is so invaluable.
“I can’t think of a single other founder or project who would give me a lot of their money and allow me to say, look, in addition to advising government, I would like to change the lives of millions of people by making a really engaging documentary. It’s inconceivable that anyone else would accept that. But the Foundation did - literally, in five seconds.
“The fellowship - and this is 100% true - has been my best professional experience to date, by far. In fact, so good that I’m worried that I won’t experience better.
“And I have to say that in the beginning, I was a little sceptical about the idea of having a fellowship community. I did wonder whether it was just a gathering of people who’ve been given a lot of money by the Shuttleworth Foundation, which is a pretty good motivator to get people to talk. I knew it would be friendly and fun, and I think I knew that I would get along with everybody. But I wasn’t necessarily sure how useful it would be.
“I was wrong. It turned out to be far more useful than I thought. I work on something almost nobody else worked on within the community, but my interests outside of work are very much the subjects of the fellows. And it wasn’t about what I could get out of other people; it was how we could help each other grow.
“I am so happy that not only did I gain from the community, but also, as a fellow, I could help shape that community - and I think that is both better for me, the fellows, and better for the Foundation.
“I’ve received numerous instances of absolutely crucial support and help from other fellows, and I am incredibly grateful. The fellowship has been wonderful - really wonderful. I think that finding those real points of connection was just an incredible, unexpected and wonderful bonus which I will always cherish.”
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