The Coronavirus pandemic raises many questions about public health, global diseases and the way we produce and distribute cures and treatments. Who pays for the corona vaccine and how? How is that innovation organised? Who profits?

Commons Network has been an advocate in this domain (‘access to medicines’) for years. In the next few months, we will publish a series of articles about the problems with the current system and the ideas and visions that exist to change this. Today, we discuss the proposal for a Covid-19 Knowledge Pool.

COVID-19 is a global health crisis that demands an immediate global response. But this crisis also lays bare many other crises in our societies. In many Western countries, the response to the virus has shown the vulnerabilities in our public health systems and other essential sectors of society. One major issue that the coronavirus exposes is the dire state of our biomedical system and the role that pharmaceutical companies play in that system.

• In The Netherlands, for instance, hospitals didn’t have enough test kits because Roche, the world’s largest biotech company, initially refused to hand over the recipe that is needed to perform these tests.
• In the United States, Trump’s ‘corona-minister’ Alex Azar released a statement saying that the government could not guarantee that a potential cure for Covid-19 would be affordable, because the innovation that is needed for that cure would only be spurred by high profits.
• The rush to create a vaccine was delayed for up to two or three years, because in most countries, pharmaceutical companies had sold their vaccine research facilities. And the companies that still had the capabilities to do the research had effectively scaled down their coronavirus research because there was no money to be made.
• Scientists were close to a coronavirus vaccine years ago, and then the money dried up.
• The vaccine market was even called ‘an oligopoly’ by Wall Street analysts at AB Bernstein. In fact, after countries abandoned infectious disease research, most companies also moved away from investing in this field, according to DNDi director Bernard Pecoul.
• In France, it was debated why a testing kit for coronavirus should cost 135 euro, eventhough the production costs are only 10 euros. The sub-optimal availability of tests was cited as a major reason for not testing in the fight against the pandemic in many European countries, leading many people to ask if this had economic reasons as well.

More and more people have now come to realise that the global race to find a cure for Covid-19 and a vaccine is slowed down considerably by the fact that the system we have now runs on market incentives and patent monopolies. Instead of shielding essential knowledge, companies could work together, share research results and new insights.

Moving away from a deficient system

The pharmaceutical industry is driven by profit and guided by shareholders. The research and innovation that is needed to come up with cures and treatments is monopolised. A system of patents and licenses is fine-tuned to produce the maximum wealth for a few multi-billion euro corporations. This is how we have organised the world of medicines today. Our system is not driven by public health needs but by profit and the only logic that counts is that of capitalism.

Our system is not driven by public health needs but by profit and the only logic that counts is that of capitalism

This model is based on the belief that the flow of biomedical knowledge should be privatized and protected through intellectual property rights in order to stimulate innovation. This monopoly model gives pharmaceutical companies the freedom to charge as much as they can get away with. It also stifles innovation where we most need it, like in the area of infectious diseases, because there is no money to be made. And finally, this system makes us, the people, pay three times: once to fund the universities and research facilities that create a lot of the knowledge needed for pharmaceutical innovation, once to pay these companies to produce and distribute, and once to our governments to fund our health care system.

It’s hard to estimate how many medicines are not invented, how much talent is wasted and how many people have to suffer because of what not is being researched and developed. This sytem limits the ability to collaborate, share knowledge and build on each other’s work. The public good of scientific medical knowledge and health related technologies has been transformed into a highly protected, privatized commodity.

The COVID-19 crisis marks a critical moment for generating the change we need. But how do we go from this neoliberal capitalist logic to something else, towards a system that is driven by the needs of the public and the health of the people?

Knowledge commons

The proposal to build  a global knowledge pool for rights on data, knowledge and technologies that was presented by Costa Rica is a great example of a step in the right direction, towards transformational change. On March 23^rd, the government of Costa Rica sent a letter to the World Health Organization, calling for a Global Covid-19 Knowledge Pool¹. In his letter to the WHO, the president of Costa Rica demands a global program to “pool rights to technologies that are useful for the detection, prevention, control and treatment of the COVID-19 pandemic.” It now also enjoys the support of the WHO as well as from the UK parliament and the Dutch government and civil society, which has announced their support the idea of a COVID-19 pool as well.

Why do we need a knowledge pool and why is it transformational?

As mentioned above, under our current system the privatization of knowledge limits the ability to collaborate, share knowledge and build on each other’s work. This really is artificial because knowledge is by nature abundant and shareable. Hence the current handling of medical technologies not only limits access to the ensuing treatments, it also limits innovation.

The Covid-19 Poll would pool relevant knowledge & data to combat Covid-19, creating a global knowledge commons². It is a proposal to create a pool of rights to tests, medicines and vaccines with free access or licensing on reasonable and affordable terms for all countries. This would allow for a collaborative endeavor, and could accelerate innovation. It would be global, open and offer non discriminatory licenses to all relevant technologies and rights. As such the pool would offer both innovation and access.

Inputs could come from governments, as well as from universities, private companies and charities. This could be done on a voluntary basis but not only. Public institutions around the world are investing massively in Covid-19 technologies and all results could be automatically shared with this pool, meaning this could be a condition attached to public financing.

So, placing knowledge in a commons does not just mean sharing data and knowledge without regard for their social use, access and preservation. It means introducing a set of democratic rules and limits to assure equitable and sustainable sharing for health-related resources. As such it allows for equitable access, collaborative innovation and democratic governance of knowledge. At the same time knowledge commons could facilitate open global research and local production adapted to local context.

Placing knowledge in a commons does not just mean sharing data and knowledge without regard for their social use, access and preservation. It means introducing a set of democratic rules and limits to assure equitable and sustainable sharing

If we consider the COVID-19 pool holistic initiative that treats the knowledge as a commons, not only to accelerate innovation but also recognizing this knowledge as a public good for humanity which should be managed in a way to ensure affordable access for all, it could be transformational. In contrast to the existing Medicines Patent Pool this pool would be global and not primarily focus on providing access to exitisting technologies, but more also on innovation: developing diagnostics, medicines and vaccines.

Transformational change

Instead of proposing tweaks it is now time to challenge the idea of handling medicines principally as a commodity or product, and to propose structural changes in order to approach health as a common good.  This means referring to our collective responsibility for – and the governance of health when reframing biomedical knowledge production. Instead of leaving it entirely to markets and monopoly based business models.

For this we should move to an approach based on knowledge sharing, cooperation, stewardship, participation and social equity – in practice, this means shifting to a public interest biomedical system based on knowledge commons and open source research, open access, alternative incentives and a greater role for the public sector. Knowledge pools are a crucial piece of the puzzle.

The current COVID-19 pandemic demonstrates how it is possible to make transformational changes overnight when acting in times of an emergency. Let us use this crisis to acknowledge the failures of today’s biomedical research model and usher in the systemic change needed. The world after Corona will require the consideration of alternative paradigms –  it is indeed, as Costa Rica, Tedros and now the Netherlands as well rightfully confirmed – time for the knowledge commons to flourish now.

For some more background about commons thinking in the field of biomedical R&D and possible alternatives to ensure access to medicines for all, read our our policy paper ‘From Lab to Commons’. See also last year’s work on ‘The People’s Prescription’ by our allies in the UK, in cooperation with professor of Economics Mariana Mazzucato.

1. The idea of a knowledge pool is to organise the governance of knowledge by pooling intellectual property, data and other knowledge. This can accelerate the development of health technologies and thus stimulate affordable access to the public. In 2010 the Medicines Patent Pool was set up as a response to the unequal access to HIV/AIDS treatments in developing countries. It has proven to be a great success and now functions as a United Nations-backed public health organisation working to increase access to medicines for HIV, Hepatis c and Tuberculosis.
2. Knowledge commons refer to the institutionalized community governance of the sharing and, in some cases, creation, of information, science, knowledge, data, and other types of intellectual and cultural resources.

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The work of artist and activist, Cassie Thornton is included in the upcoming Playbour– Work, Pleasure, Survival exhibition at Furtherfield, curated by Dani Admiss. In this interview I wanted to explore the following questions as revealed in her current Hologram project:

• What do current conditions say about trust and care, and can we trust the current, governing systems to have our best interests at heart?
• How do we produce non-hierarchical trust and care that thrives outside of the doctor/patient relationship, which is especially important in the U.S., where it is a profit making industry?
• How do we reverse engineer all this tragedy, and put power back where it needs to be?
• How do we begin to build solidarity?

Cassie Thornton is an artist and activist from the U.S., currently living in Canada. Thornton is currently the co-director of the Reimagining Value Action Lab in Thunder Bay, an art and social center at Lakehead University in Ontario, Canada.

Thornton describes herself as feminist economist. Drawing on social science research methods develops alternative social technologies and infrastructures that might produce health and life in a future society without reproducing oppression — like those of our current money, police, or prison systems.

Interview

Marc Garrett: Since before the 2008 financial collapse, you have focused on researching and revealing the complex nature of debt through socially engaged art. Your recent work examines health in the age of financialization and works to reveal the connection between the body and capitalism. It turns towards institutions once again to ask how they produce or take away from the health of the artists and workers they “support”. This important turn towards health in your work has birthed a series of experiments that actively counter the effects of indebtedness through somatic work, including the Hologram project.

The social consequences of indebtedness, include the formatting of one’s relationship to society as a series of strategies to (competitively) survive economically, alone, to pay the obligations that you has been forced into. It takes so much work to survive and pay that we don’t have time to see that no one is thriving. Those whom most feel the harsh realities of the continual onslaught of extreme capitalism, tend to feel guilty, and/or like a failure. One of your current art ventures  is the Hologram, a feminist social health-care project, in which you ask individuals to join and provide accountability, attention, and solidarity as a source of long term care.

Could you elaborate on the context of the project is, as well as the practices, and techniques, you’ve developed?

CT: Many studies show that the experience of debt contributes to higher levels of anxiety, depression, and suicide. Debt disables us from getting the care we need and leads us away from recognizing ourselves as part of a cooperative species: it is clear that debt makes us sick. In my work for the past decade, I have been developing practices that attempt to collectively discover what debt is and how it affects the imagination of all of us: the wealthy, the poor, the indebted, financial workers, babies, and anyone in-between. Under the banner of “art” I have developed rogue anthropological techniques like debt visualization or auxiliary credit reportingto see how others ‘see’ debt as an object or a space, and how they have been forced to feel like failures in an economy that makes it hard for anyone (especially racialized, indigenous, disabled, gender non-binary, or ‘immigrant’) to secure the basic needs (housing, healthcare, food and education) they need to survive, because it is made to enrich the already wealthy and privileged.

“The rise of mental health problems such as depression cannot be understood in narrowly medical terms, but needs to be understood in its political economic context. An economy driven by debt (and prone to problem debt at the level of households) will have a predisposition towards rising rates of depression.”⁴

After years of watching the pain and denial around debt grow for individuals and entire societies, I was so excited to fall into a ‘social practice project’ that has the capacity to discuss and heal some of this capital-induced sickness through mending broken trust and finding lost solidarity. This project is called the hologram.

MG: What kind of people were involved?

CT: The entire time I lived in the Bay Area I was precarious and indebted. I only survived, and thrived, because of the networks of solidarity and mutual aid I participated in. As the city gentrified beyond the imagination, I was forced to leave. I didn’t want to let those networks die. So, at first, the people who were involved were like me– people really trying to have a stake in a place that didn’t know how to value people over real estate and capital

The hologram project developed when, as I was leaving the city, I had invited a group of precariously employed, transient activists and artists to get together in the Bay Area for a week of working together. We aimed to figure out ways to share responsibility for our mutual economic and social needs. This project was called the “Intentional Community in Exile (ICE)” [the ICE pun was always there, now an ever more intense reference in the public eye] and it grew out of an opportunity offered by Heavy Breathing to choreograph an event at The Berkeley Art Museum. They allowed me to go above and beyond my budget to invite a group of 8 women together from across the US to choreograph methods of mutual aid: sharing resources, discussing common problems and developing methods for cooperating to co-develop an economic and social infrastructure that would allow us to thrive together, interdependently. What would it mean for our work as activists and artists to feel that we had roots within an intentional community, even if we didn’t have the experience of property that makes most people feel at home?

Facebook event: “In departing from the idea of a long term home, family, property, or ownership, ICE models a mutual aid society to sustain creative and political practices within a hostile economic system. This project is about finding ways to exit economic precarity by building human relationships instead of accumulating capital– or to make exile warm. After a one week convergence of a small group of collaborators, ICE presents a discussion and performance of life practices as well as frameworks for material and immaterial mutual support.”

The Hologram was one of many ideas that developed as part of this project. One of the group members, Tara Spalty, founder of Slowpoke Acupuncture, (and one of the two acupuncturists you will see at SF protests or homeless encampments) and I fell into this idea when combining our knowledge about the solidarity clinics in Greece, our growing indebtedness and lack of medical records, and the community acupuncture movement. Then the group brainstormed about what the process would be like to produce a viral network of peer support.

MG: What inspired you to do this project? (particularly interested in the Greek influences here and what this means to you)

CT: My practice of looking at debt became boring to me by 2015 as it became more and more clear that individual financial debt was a signal of a larger problem that was not being addressed. The hyper individualism produced by indebtedness allows us to look away from a much bigger deeper story of our collective debts, financial and otherwise. We don’t know what to do with these much bigger debts, which include sovereign debts, municipal debts, debts to our ancestors and grandchildren, debts to the planet, debts to those wronged by colonialism and racism and more. We find it so much easier to ignore them.

When visiting austerity-wracked Greece after living in Oakland, I noticed that Oakland appeared to have far more homeless people on the street. It made me realize that, while we label some places “in crisis,” the same crisis exists elsewhere, ultimately created and manipulated by the same financial oligarchs. The hedge funds that profit off of the bankruptcy in Puerto Rico are flipping houses in Oakland and profiting off of the debt of Greece. We’re all a part of the same global economic systems. The “crisis” in Greece is also the crisis Oakland and the crisis in London. For this reason, I have been interested in what we can all learn from activists, organizers and others in crisis zones, who see the conditions without illusions.

This led me to an interest in the the Greek Solidarity Clinic movement, which since “the crisis” there has mobilized nurses, doctors, dentists, other health professionals and the public at large to offer autonomous access to basic health care. I went to go visit some of these clinics with Tori Abernathy, radical health researcher. Another project using this social technology is called the Accountability Model, by the anonymous collective Power Makes Us Sick. These solidarity clinics are run by participant assembly and are very much tied in to radical struggles against austerity. But they have also been a platform for rethinking what health and care might mean, and how they fit together. The most inspiring example for me was in at a solidarity clinic in Thessaloniki, the second largest city in Greece. The “Group for a Different Medicine” emerged with the idea that they didn’t want to just give away free medicine, but to rethink the way that medicine happens beyond conventional models, including specifically things like gender dynamics, unfair treatment based on race and nationality and patient-doctor hierarchies. This group opened a workers’ clinic inside of an occupied factory called vio.me as place offer an experimental “healed” version of free medicine.

When new patients came to the clinic for their initial visit they would meet for 90 minutes with a team: a medical doctor, a psychotherapist and a social worker. They’d ask questions like: Who is your mother? What do you eat? Where do you work? Can you afford your rent? Where are the financial hardships in your family?

The team would get a very broad and complex picture of this person, and building on the initial interview they’d work with that person to make a one-year plan for how they could be supported to access and take care of the things they need to be healthy. I imagine a conversation: “Your job is making you really anxious. What can we do to help you with that? You need surgery. We’ll sneak you in. You are lonely. Would you like to be in a social movement?” It was about making a plan that was truly holistic and based around the relationship between health, community and struggles to transform society and the economy from the bottom-up . And when I heard about it, I was like: obviously!

So the Hologram project is an attempt by me and my collaborators in the US and abroad to take inspiration from this model and create a kind of viral network of non-experts who organize into these trio/triage teams to help care for one another in a complex way. The name comes from a conversation I had with Frosso, one of the members of the Group for a Different Medicine, who explained that they wanted to move away from seeing a person as just a “patient”, a body or a number and instead see them as a complex, three dimensional social being, to create a kind of hologram of them.

MG: Could you explain how the viral holographic care system works?

CT: Based on the shape above, we can see that we have three people attending to one person, and each person represents a different quality of concern. In this new model, these three people are not experts or authorities, but people willing to lend attention and to do co-research, to be a scribe, or a living record for the person in the center, the Hologram. We call these three attendees ‘patience’. Our aim is to translate the Workers’ Clinic project to a peer to peer project where the Hologram receives attention, curiosity and long term commitment from the patience looking after her, who are not professionals. Another project using this social technology is called the Accountability Model, by the anonymous collective Power Makes Us Sick.

So the beginning of the process, like that of the Workers’ Clinic, is to perform an initial intake where the three patience ask the Hologram questions which are provided in an online form, about the basic things that help or hurt her social, physical and emotional/mental health. When this (rather extended) process is complete, the Hologram will meet as a group every season to do a general check in. The goal of this process is to build a social and a physical holistic health record, as well as to continue to grow the patience understanding of the Hologram’s integrated patterns.

Ultimately, over time we hope to build trust and a sense of interdependence, so that if the Hologram meets a situation where she has to make a big health decision (health always in an expansive sense) about a medical procedure, a job, a move, she will have three people who can support her to see her lived patterns, to help her ask the right questions, and to support peer research so that the Hologram is not making big decisions unsupported.

But, in order for the Hologram to receive this care without charge and guilt free, she needs to know that her patience are taken care of as she is. I think this is one part of the project that acknowledges and makes a practice built from the work of feminists and social reproductive theorists – you can’t build something new using the labor of people without acknowledging the work of keeping those people alive; reproducing the energy and care we need to overturn capitalism needs a lot of support. Getting support from someone feels so different if you know they are being, well taken care of. This is also how we begin to unbuild the hierarchical and authoritarian structures we have become accustomed to – with empty hands and empty pockets.

And then, the last important structural aspect of the Hologram project is the real kicker, and touches on the mystery of what it means to be human outside of Clientelist Capitalism – that the real ‘healing’ (if we even want to say it!) comes when the person who is at the center of care, turns outward to care for someone else. This, the secret sauce, the goal and the desired byproduct of every holographic meeting– to allow people to feel that they are not broken, and that their healing is bound up in the health and liberation of others.

The viral structure, is built into this system and there is a reversal of the standard way of seeing the doctor and patient relationship. In this structure it is essential that we see the work of the Hologram as the work of a teacher or explicator, delivering a case that will ultimately allow the patience to learn things they didn’t previously know. This is the most important, (though totally devalued by money) potent and immediately applicable, form of learning we can do, and it is what the medical system has made into a commodity, at the same time as it is seen as ‘women’s work’ or completely useless.

MG: Could you take us through the processes of engagement. For instance, you say a group of four people meet and select one person who will become a Hologram, and that this means they and their health will become ‘dimensional’ to the group. Could you elaborate how this happens and why it’s important for those involved?

CT: We are about to experiment, this fall, with what it means for these groups to form in different ways. We will start with four test cases, where an invited, self-selected person will become a Hologram. She will be supported to select three Patience in a way that suits her, based on an interview and survey. The selection of Patience is a part of the process that we have not had a chance to refine. It is not simple for any individual to understand what support looks like for them, or who they want support from, if they’ve never really had it.

The experiments we will work through this fall will attempt to understand what changes in the experience of the whole Hologram when the Hologram is supported by Patience who are trusted friends and family, acquaintances or highly recommended strangers. An ‘objective’ perspective from an outside participant also adds a layer of formality to the project, because, instead of a casual gathering of friends, an unfamiliar person signals to the other members of the hologram to be on time, and make the meetings more structured than a regular friend to friend chat.

The onboarding process for the Hologram and the Patience includes a set of conversations and a training ritual, which are still quite bumpy. The two roles every participant is involved in, requires a different set of skills, and so they both involve a special kind of “training” that one can do in a group or independently. This “training” is a structured personal ritual that allows participants to witness and adapt their own communication habits so that they feel prepared to participate and set up trust, curiosity and solidarity for the group in the opening intake conversations.

At the completion of the intake process, the Hologram (1) transitions to become a Patience. At this time, the Hologram (1) begins a short training to transition to the other role, and she is supported by her Patience to do this work. At the conclusion of the Hologram’s (1) transition to Patience, and the completion of the new Hologram’s (2) intake process, the original Hologram’s (1) Patience become Holograms (3,4,5).

MG: The Hologram project was first trialed as part of an exhibition called Sick Time, Sleepy Time, Crip Time at the Elizabeth Foundation Project Space in New York City, March 31-May 13, 2017. What have you learnt in more recent undertakings of The Hologram project?

CT: Since the original trial one year ago, which lasted for 3 months, the research has shifted to looking at building skills and answering acute questions that will accumulate to support and build the larger project. Starting in the Spring of 2017, I began to offer the Hologram project as a workshop, where participants could test the communication model that is implicit in the Hologram format. The method for offering it is, as a performance artist and rogue architect, creating a situation in a space where people go through a difficult psycho social physical experience together. In the reflective conversations that follow, I ask the groups to use the personal pronoun ‘we’ for the entire duration of the conversation. The idea is that one person’s experience can be shared by the group, and even as temporary Patience we can take a leap and share their experience with them for a duration of time, allowing a Hologram to feel as if their experience is “our” experience. And this feeling that one is not alone in an experience, if carried into other parts of life, has the potential to break a lot of the assumptions and habits that we have inherited from living and adapting to a debt driven hellscape.

1. Graeber, David. The Newstatesman. We’re racing towards another private debt crisis –so why did no one see it coming? 18 August 2017. bit.ly/2we2Bv5
2. Kimberly, Amadeo. Austerity Measures, Do They Work, with Examples. The Balance. 2018. thebalance.com/austerity-measures-definition-examples-do-they-work-3306285
3. Amadeo, Kimberly. Medical Bankruptcy and the Economy: Do Medical Bills Really Devastate America’s Families? The Balance. Updated May 16, 2018. thebalance.com/medical-bankruptcy-statistics-4154729
4. Davies, Will. Wallin, Sara. Montgomerie, Johnna. Financial Melancholia –Mental Health and Indebtedness. PDF Edition. 2015. perc.org.uk/project_posts/financial-melancholia-mental-health-and-indebtedness/

Reposted from Furtherfield.

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The School for Civic Action in collaboration with Commons Rising are inviting commons initiatives and commoners to come together to initiate a UK wide Commons Assembly. This is an open platform to meet others, exchange knowledge and to see if there is an appetite for an ongoing UK Commons Assembly.

The Commons discourse is informed by an idea, which has been around for hundreds of years. In a contemporary context of much inequality, the Commons discourse introduces models of sharing. The Commons are about the assets that belong to everyone, forming resources that should benefit all, rather than being enclosed to just a few.

The aim of the day is to put on an exhibition showing the wealth of Commons projects happening in the UK. There will be discussions as well as workshops to inform the public about the commons. It is also an opportunity to vision how the commons might work beyond the individual projects and to set up practical outcomes going forwards.

You will see commons initiatives from each of the following areas Health, Food production, Food distribution, Housing, Economy/Money, Energy, Culture, Waste, Commons Law and Charters, Digital Commons, Governance of the Commons, Land use/ownership, Transport and Technology.

The ambition of this event is to continue beyond this event in formats decided by the participants and contributors on the day.

Register through Eventbrite

@publicworksuk Facebook

Programme PDF:

Uk Commons Assembly_tate Exchange Programme by P2P Foundation on Scribd

The post UK Commons Assembly, School for Civic Action, 20th July 2018 appeared first on P2P Foundation.

Towards an Agreement on Biomedical Research and Development for the Public Benefit:
Academia’s Urgent Call to Action

As members of the international academic and scientific community, we call upon the member states of the World Health Organisation (WHO) to negotiate a much overdue global research and development (R&D) agreement to ensure innovation and access to affordable vaccines, medicines and life-saving technologies for all.

In an open letter in 2008, leading academics, researchers and scientists, including many of us, urged universities and research institutes to set policies for research and technology transfer that serve the public good, while calling on the WHO’s Intergovernmental Working Group on Public Health, Innovation, and Intellectual Property to find new mechanisms to address a failing system of R&D on medicine and health technologies.

In 2012, the WHO’s Consultative Expert Working Group on Research and Development: Financing and Coordination (CEWG) stated that the way to truly address the systemic issues causing the crisis in global health today would be to work towards a legally binding global biomedical R&D agreement. This recommendation was supported by many member states. However, opposition by a few led to the subsequent World Health Assemblies postponing the discussions of an agreement until an unspecified date.

After over 10 years of debate at WHO, a number of initiatives have been developed and put into practice proving that a different way of implementing biomedical R&D is possible. Projects like the the Drugs for Neglected Diseases Initiative have shown that patient-driven innovation is possible at affordable cost and show that claims that it takes $2.56 billion to produce a drug are a myth. The Medicines Patent Pool has shown that a collaborative approach to intellectual property can speed up the availability of affordable HIV medicines in resource poor settings.

Yet the current system continues to fail people. New Hepatitis C cures are marketed at an exorbitant $1,000 per pill. A generic drug treating toxoplasmosis saw a price increase of 5,000% overnight. Breast cancer patients in the UK are unable to access treatment and we are proving unable to stimulate real innovation to combat antimicrobial resistance. The current biomedical R&D system is no longer just failing the poor, it is failing us all.

There is a lack of sufficient research funding for neglected tropical diseases (such as sleeping sickness, and Chagas’ disease), chronic diseases, and diseases for which return on investment cannot be guaranteed (such as multi-drug resistant tuberculosis). The international system is going in the wrong direction by strengthening intellectual property rights – with the Trans Pacific Partnership Agreement as a lead example – that further advance corporate control over biomedical R&D. Preserving patent monopolies as the primary incentive for medical R&D results in exorbitant prices for medicines and medical technologies which endanger public health budgets and impoverish families.

Innovation has slowed as the overproduction of “me too” drugs has been incentivised, and legal restrictions have proliferated impeding the free flow of information for scientific progress. Patent monopolies increasingly enable rising drug prices, without any corresponding increase in innovation. We have witnessed stagnation in the face of public health emergencies. In the case of the tragic Ebola epidemic, governments and private companies allowed potential vaccines and treatments to remain in preclinical development for over a decade prior to the outbreak because there was no market incentive to invest in treatments for diseases limited to poor countries. As noted by the WHO-commissioned Report of the Ebola Interim Assessment Panel in July 2015, it was “a defining moment for the governance of the entire global health system.”

A different system, based on principles of open access, open knowledge, open sharing and fair price, as well as incentives and mechanisms to encourage research and development of essential medicines according to needs of people worldwide, is possible. There are mechanisms being used that show great potential including prize funds, patent pools, and open collaborative approaches. However, the initiatives are fragmented and lack coherence. A global agreement for an equitable biomedical R&D system can provide a much needed structure. It can provide guiding principles which can move us to a system that incentivizes research and technology transfer based on global health needs and recognizes the human right to health.

Now, more than ever, we must act. As academics, researchers and scientists it is our responsibility to generate and transmit knowledge. We have a unique role to promote innovation in many fields and to ensure that our innovations are used to benefit the public. In no field are the moral imperatives to do so as clear as they are in medicine. At a time of huge progress in scientific research we are deeply concerned about the ability of the existing system to translate investment into better global health.

We are therefore calling on WHO Member States to seriously address this urgent situation. Future meetings should advance and inform discussions on an agreement that will support a coherent, sustainable and needs-driven approach to biomedical research and development for all.

Please note, this text was first published in November 2015 and was slightly updated in November 2016 to ensure ongoing use.

Signatories

Joseph E. Stiglitz, Nobel Laureate, Member of the National Academy of Science, Corresponding Fellow, Royal Society.

Sir John Sulston, Nobel Laureate, Fellow of the Royal Society

Prof John S Yudkin MD FRCP, Emeritus Professor of Medicine, University College London

Warren Kaplan, PhD, JD, MPH: Center for Global Health & Development/Boston University School of Public Health

Prof Brook Baker, Professor of Law, Northeastern University School of Law

Amy Kapczynski, JD, MA, MPhil, AB: Professor of Law; Faculty Director Global Health Justice Partnership, Yale Law School

Benjamin Coriat, Professeur des Universités Faculté des Sciences Economiques. Université Paris 13. Sorbonne Paris Cité, France

Michael Hopkins, PhD, Senior Lecturer (SPRU – Science Policy Research Unit, Business and Management), Sussex University, UK

Dean Baker, Co-Director, Center for Economic and Policy Research

Ulf Landegren, Professor of Molecular Medicine, Uppsala University, Sweden

Philip Oxhorn, Professor of Political Science and Founding Director of Institute for Study of International Development, McGill

Dr. E. Richard Gold, Associate Dean (Graduate Studies), Vice-doyen aux études supérieures

Rachel Kiddell-Monroe, Professor of Practice, ISID, McGill University

Prof Madhukar Pai, MD, PhD, Professor of Epidemiology, McGill University

Dr. Aaron Kesselhiem, MD JD MPH Associate Professor of Medicine at Harvard Medical School; Faculty Member at Brigham and Women’s Hospital

View the current list of over 450 Academic Signatures of the letter

View all current Signatures of the letter

See original post and sign to call on the WHO to negotiate a global R&D agreement now!

Photo by National Institutes of Health (NIH)

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Fighting for Care Work Resource

1. What is the key idea of the Care Revolution?

Care Revolution wants to shape care and self-care according to needs with a fundamental change in societal direction

Care Revolution activists are working for a good life in which all people’s needs can be met in full without excluding anyone or exploiting others. Building on insights from feminist politics, Care Revolution puts the fundamental significance of care work at the core of its social critical analysis and political action. From birth, people are dependent on the care of others, without which they could not survive. Beyond childhood and youth, and times of sickness and frailty, people are also dependent on others in their everyday lives. The possibility of getting help and support in a difficult situation is an important criterion for a good life. This also applies to the possibility of being able to care for others without having to be disproportionately disadvantaged.

Care work is an activity that all people carry out. They care for themselves, for their health, for their education, they cook for themselves or for other people, bring up children, advise friends, and care for relatives who need support. Some care work is paid, for example that carried out by carers or nursery school teachers. Most of this work however is done within families by women and is unpaid; often it is not considered to be work at all.

“Day of invisible work” at the 1.May demonstrations in Freiburg in 2014.

Currently, more and more people face the increasingly difficult task of mastering the balancing act between employment and unpaid care work for themselves and others. They live with the constant threat of failing to meet demands. In their employment, they are confronted with increasing demands on flexibility from the company, continually rising performance pressure, as well as salaries, which are often too low compared to the cost of living. According to the neoliberal credo of individual responsibility, each individual is required to combine high professional requirements with increasing self-organisation tasks and the growing demands of familial care work.

This situation is aggravated by the fact that, in order to reduce costs, many state welfare services, for example in the health or education system, are being cut rather than expanded. It is primarily many women who suffer in this deficient state infrastructure as they carry out most of the socially necessary care work in the home alongside their paid employment. In high-earning families, part of this work is passed on to poorly paid migrant domestic workers who do not have social security. In this way, high earners solve their problems on the backs of those for whom even this precarious work means an improvement to their catastrophic position. State tolerance of these working conditions in private households, which fall below societal minimum standards, is aggravating a global division of labour that ignores the basic needs of care workers from countries in Eastern Europe and the global south.

Care Revolution as a political strategy

The obvious response that meets needs is to organise and carry out the work needed in families and institutions together and without discrimination. For those in the Care Revolution network, attending to people’s needs, space for empathy and solidarity, as well as genuine democracy in politics and the economy are essential. With the following steps, it is possible to come closer to the aim of good care and a good life:

• Sufficient income for all in order to secure a sustainable livelihood: This primarily means a substantial minimum wage without exceptions, an unconditional basic income and a significant improvement in pay for work in care careers.
• Sufficient time to be able to care for one’s close ones and oneself alongside paid employment, and maintain time for leisure. This primarily means a considerable reduction in working hours for full-time workers, special arrangements for people with a lot of care responsibilities, and a non-discriminatory division of care work between men and women.
• A social infrastructure that truly supports care and self-care: This primarily means an expanded and free education and health system, affordable accommodation, free local public transport and support for self-help networks and commons projects. This can be realised by redistributing societal wealth.
• Real involvement in societal decision-making: This means comprehensive self-governance, starting in the care sector. This can be effected via a council system that enables national coordination and democratic control. Many care projects, such as health centres, nurseries or educational establishments can also be organised decentrally with local self-governance in districts or neighbourhoods.
• Non-discriminatory society: This means that there is no exclusion, no discrimination and no privileges owing to one’s ethnic origin, nationality, gender, sexual orientation, physical ability or occupational skills.

Care Revolution’s aim is a society based on solidarity. Those in the Care Revolution network understand this to be a radically democratic society, oriented towards human needs and, in particular, towards caring for one another. In a society based on solidarity, the needs of all people in their diversity are met, without people from other global regions being discriminated against. Correspondingly, Care Revolution means that it is no longer profit maximisation but human needs that are the focus of social, and thus also economic action.

2. Who is part of the Care Revolution? What do they do?

Care Revolution network actors call for more time and resources for paid and unpaid care work.

In the Care Revolution network, there are initiatives from different areas of society and with different political priorities. These include organisations of caregiving relatives, disability groups, parent groups, migrant groups, ver.di and GEW trade union site groups in the field of care and childcare, social movement organisations, queer feminist groups and radical left-wing groups. In March 2014, sixty such initiatives came together in Berlin for the first time to prepare and hold a conference, which 500 people attended. Shortly after this, these and other initiatives founded the Care Revolution network. Currently, the network is limited to Germany, Switzerland and Austria.

Logo of the Care Revolution network.

Examples of groups represented in the network

A significant proportion of the initiatives represented by Care Revolution come from a feminist or queer feminist background. Some have fought since the 1970s, as part of the second wave of feminism, for a revaluation of unpaid reproductive work. Today, older and younger activists in the Care Revolution network again want to comprehend the feminist agenda as a more general form of social criticism, including through their struggles for improved care resources. Here, priorities are quite varied. Some highlight the gender gap in care work and demand recognition of this socially necessary work. Others are active in groups that combine anti-capitalist and feminist positions and discuss their own life circumstances in relation to structural crises. The latter involved Care Revolution in the Blockupy protests.

Women in Exile, which also participated in the first Care Revolution conference, calls for refugees to be housed in apartments rather than in camps where there is no privacy or protection against attacks. The initiative is demanding this for women and children as a matter of urgency but also calls for all camps to be dissolved. The initiative combines its public relations activities for this aim with informing refugees about their rights, and positions against racism and the migration regime.

In recent years, labour disputes regarding paid care work have made the headlines. These disputes have been innovative in various ways. For example, the ver.di site group and the staff council at Charité – Universitätsmedizin Berlin demanded a collective agreement regarding minimum employee coverage from the company that operates Berlin’s university hospitals. This labour dispute was supported by the association Berlinerinnen und Berliner für mehr Personal im Krankenhaus (‘Berlin residents for more hospital staff’) with actions to demonstrate solidarity; it did this explicitly in the interests of potential patients. On 1 May 2016, this collective agreement was achieved after over four years of disputes. A second example are the disputes in German municipal nurseries. In the 2015 strikes, there were calls for a societal revaluation of care work in nurseries and social services, as well as an increase in pay to reflect this. There were increased and partially successful efforts to gain parents as allies for this cause.

Care revolutionaries at the 1.May demonstration in Hamburg in 2015.

There are also labour-managed companies that support Care Revolution’s ideas. One example are the carers at Lossetal care centre, which is a working part of the Niederkaufungen commune. Other members of the commune, neighbours and relatives are involved as much as possible in the care facilities for care-dependent individuals and people with dementia in particular. This should improve quality of care. It is also an expression of the social objective that people in neighbourhoods should provide each other with mutual support. The care centre complements this with the required professional input.

In familial care work, the initiative Armut durch Pflege (‘Poverty through care’) can be mentioned. This initiative created the association Wir pflegen – Interessenvertretung begleitender Angehöriger und Freunde in Deutschland (‘we care – interest representation for accompanying relatives and friends in Germany’). The aim of the initiative is to give a voice to those affected by difficult situations and their demands, and to bring about material improvements for relatives who are carers, for example, through a substantial care allowance. As such, the association’s demands also relate to the human dignity of the people being cared for, which should not be dependent on their ability to pay. The organisation Nicos Farm pursues the same aims by different means: Children and young people who are dependent on lifelong care owing to a disability should also be able to have a dignified life if their parents themselves are in need of care or are deceased. The organisation aims to implement a project involving accommodation, employment opportunities and therapy at Lüneburger Heide in Germany.

Framework conditions for joint action

The Care Revolution conference in March 2014 was a moment where mutual interest, as well as the different needs and difficult situations were as evident as the desire for a joint explanation regarding the social suffering experienced. At the conference, the widespread weakness in the implementation of the individual initiatives became evident, as did the reasons for this: because no economic pressure can be established in that kind of care work, because the work is frequently carried out by isolated individuals, and because, in neoliberal discourse, completing care tasks is the responsibility of the individual. Above all, the conference underlined a desire to address these issues through joint action.

Moved care revolutionaries.

Cooperation between the different initiatives is not easy: There are real, varied struggles and alternative projects on care work. There is recognition of the similarities between them and the desire to support one another. However, individual, often existential battles are necessarily at the heart of the initiatives’ work. Activists’ lack of flexibility due to care responsibilities, precarious living conditions, and lack of time and money further impede joint action. Additionally, there is still a lack of experience of joint action actually resulting in more success. All of this is currently preventing Care Revolution from gaining more of a public presence.

Cooperation between the different initiatives is not easy: There are real, varied struggles and alternative projects on care work. There is recognition of the similarities between them and the desire to support one another. However, individual, often existential battles are necessarily at the heart of the initiatives’ work. Activists’ lack of flexibility due to care responsibilities, precarious living conditions, and lack of time and money further impede joint action. Additionally, there is still a lack of experience of joint action actually resulting in more success. All of this is currently preventing Care Revolution from gaining more of a public presence

3. How do you see the relationship between Care Revolution and degrowth?

Care Revolution and degrowth can fight for a society based on solidarity together

In terms of content, we see an important link between Care Revolution and degrowth in the fact that both concepts relate to prospects for a good life. This also applies, as far as we can judge, to the other movements that are represented by and brought together under the Degrowth in Movement(s) banner.

At first glance, there appears to be a fundamental contradiction in that degrowth places emphasis on ‘less’: It is about combining less use of resources with a good life for all where everyone’s needs are met. In this scenario, a necessary decrease in economic growth should not be a threat to standards of living but rather represent an opportunity. In contrast, Care Revolution is ultimately seeking more: More time, a more supportive social infrastructure and more material security are unavoidable prerequisites for an improvement in the position of care workers. For the health, care, education and childcare sectors, it is also about more employees and higher wages.

It gets politically interesting when these two aims are combined: less use of resources by society and more care resources. Then this is about reducing all areas that are destructive to humans and the ecological foundations of human life. Examples include armaments manufacturing, coal power stations or the current structure of individual transport. At the same time, it is about growing specific areas that are necessary for self-care and care for one another and creating the conditions for this. It is about developing concepts for how a reduction in soil sealing can be combined with an expansion of nurseries, how a reduction in the consumption of consumer goods can be combined with more material security and support for relatives who are carers, how more employees in healthcare and education can be combined with a societal reduction in working hours. In general, it means thinking about how a society can be structured to meet people’s care needs and preserve the ecological foundations for human life at the same time.

We believe that bringing together degrowth and Care Revolution is worthwhile because of the parallels between the two concepts. Both make one uncompromising demand of a desirable society: It must make a good life possible for all people globally and for subsequent generations. This premise brings with it the idea that a society that cannot guarantee this should be changed. Against this backdrop, degrowth and Care Revolution can meet precisely where they both place a pointed emphasis on anti-capitalism. For the degrowth approach, there is the central idea that an increase in the efficiency of energy and resource usage is not enough to sufficiently reduce consumption. Not only must production processes change but the production scope and the way one uses consumer goods must too. Mobility, access to washing machines, tools or libraries, as well as the use of gardens will have to be much more collectively managed in order to enable access for all. If successful, such a transformed economy would not mean a sacrifice, but would mean having other, richer social relations. This equally positive reference to the interdependence of human beings is very similar to Care Revolution’s thinking on care and care work. To be dependent on one another is a fundamental part of human life. As such, it is also immensely important to focus on human collaboration and solidarity in political actions and in the development of societal alternatives.

Poster for the action week Care Revolution in Erfurt in May 2016.

A joint effort with other movements is an especially attractive notion, as is fighting together. Both Care Revolution and degrowth can identify with the topic of ‘a society based on solidarity, a life based on solidarity’, which touches on the need for changes in societal institutions as well as changes in one’s own lifestyle. Both analyse the destruction of the human being as a social being and ecosystems in capitalism and contrast this with the principles of a society based on solidarity. As such, both are anti-capitalist projects at their core. If this is true, then both movements also pose questions about social transformation: How do individual struggles, experiments and political changes intensify to the point that an alternative to capitalism, based on solidarity, becomes reality? We consider the search for transformation strategies to be part of a joint project for needs-oriented social movements.

4. Which proposals do they have for each other?

Care Revolution’s strength is that very heterogeneous initiatives are calling for comprehensive social changes together.

One strength of the initiatives under the Care Revolution banner is their heterogeneity, as the topic of care speaks directly to people from different backgrounds with different political ideas, life concepts and desires. At the first conference in March 2014, it was impressive to see how this diversity was combined with mutual respect and curiosity.

We believe this relates to the fact that care has reference points in all social and political settings. Care addresses vital needs, which underlines the absurdity of wanting to treat, teach, advise or care for people according to the principle of maximum profit. People with different life experiences and different life situations are coming to the conclusion that society must be entirely redesigned, at least with regard to care. It is relatively easy to imagine alternatives in care as the necessary social infrastructure can largely be realised decentrally, in local districts or villages.

Nurseries, healthcare establishments and social centres can be organised with forms of direct democracy. All those directly affected by negotiations regarding care institutions can be involved. This is primarily possible because care workers of different kinds are meeting on a level playing field: both those for whom care is a career, and those who are involved in care within families or self-care. They can meet each other as experts who are pursuing the same aim of organising care well with different skills and interests. Experiences in the care sector and in struggles for better care conditions can also make comprehensive socialisation, which goes beyond the care sector, appear more realistic and more desirable. Freeing all areas of production and how we live together from the framework of valorisation and market competition is also a condition for protecting the ecological foundations of life.

Care Revolution action “DIE-IN” on the major shopping street “Zeil” in Frankfurt in 2013.

With regard to commons projects, we believe Care Revolution activists can learn a lot from movement approaches such as those who participate within the Degrowth in Movement(s) project. Unlike in the care sector where initial efforts are being made, there are already multiple projects there, where people are jointly developing and living out part of a more liveable future on a small scale. We are thinking here of community repairs, fab labs (public workshops equipped with 3D printers), communal gardens or the many projects in community-supported agriculture.

5. Outlook: Space for visions, suggestions or wishes

Needs-oriented movements can develop a liveable alternative to capitalism together where they combine their alternative projects and transformation strategies.

The different movements and practices under the Degrowth in Movement(s) banner have certain features in common: The centrality of human needs, attentiveness to life in general, the importance of real social relationships and fair social framework conditions make up a shared core, with quite different emphases. From this core, the consequences of capitalist development, which destroy the ecosystem as much as human beings as social creatures, may be criticised. Projects promoting a life based on solidarity can be brought together in discussion and in practice. Individual efforts can be linked and societal alternatives developed.

Strengthening these links to one another is perhaps what is most urgent. This involves the different movements developing a liveable alternative to capitalism through exchanging ideas. It is also about them finding a shared focus in their projects and in their solidarity-based lifestyle. If this is successful, the movements can achieve something together that each individual cannot.

Partial movements also have something to contribute. For example, if migrants are caring for people at home in miserable working conditions, this creates an opportunity for a needs-oriented movement based on solidarity with different reference points: the right of the person requiring care to be well cared for, the right of the relatives to not be solely responsible for care, the rights of the migrant carers to good working conditions and good pay, the rights of the migrants’ children or relatives and the people in their home countries who care for them. It is necessary to account for all these justified demands, which affect the care system here, as well as the unfair distribution of work globally. If movements focusing on migration, care or the global division of labour work closely together, they can support each other with a comprehensive overview of the situation.

Redesigning towns and villages based on solidarity also requires joint action. Organising a collective social infrastructure in districts entails removing the care sector from valorisation. Communal gardens require free access to land. Experiments in co-living, shared repair workshops, community kitchens or policlinics should not be restricted or impeded by the fact that their rental payments have to generate sufficient returns. Reducing private car use requires a correspondingly developed local transport network and thoughts on how urban sprawl and the spatial separation of life and work can be addressed. By bringing together the many individual projects, a new, more strongly contoured image of liveable towns could emerge; discussing necessary conditions should enable us to determine more clearly how a societal alternative could function. By the very different activists from different individual movements meeting and becoming politically active together, they can support each other in thinking of and practising alternatives without old and new exclusions.

Links

Interview with Gabriele Winker on the book ‘Care Revolution. Schritte in eine solidarische Gesellschaft’ (in German)
Care Revolution homepage
Care Revolution’s partners (including all groups and initiatives mentioned in the text)
Care Revolution regional groups
‘Her mit dem guten Leben für alle weltweit! Für eine Care Revolution’ (information on the Care Revolution conference in Berlin in 2014, in German)
Video documentation of Care Revolution actionconference in Berlin in 2014

Applied as well as further literature

Biesecker, Adelheid; Wichterich, Christa; Winterfeld, Uta v. 2012. Feministische Perspektiven zum Themenbereich Wachstum, Wohlstand, Lebensqualität. Berlin: Rosa-Luxemburg-Stiftung. <http://www.rosalux.de/fileadmin/rls_uploads/pdfs/sonst_publikationen/Biesecker_Wichterich_Winterfeld_2012_FeministischePerspe.pdf>

Fried, Barbara; Schurian, Hannah (ed.) 2015. Um-Care. Gesundheit und Pflege neu organisieren. Berlin: Rosa-Luxemburg-Stiftung.
<http://www.rosalux.de/fileadmin/rls_uploads/pdfs/Materialien/Materialien13_UmCare_web.pdf>

Praetorius, Ina 2015. Wirtschaft ist Care. Oder: Die Wiederentdeckung des Selbstverständlichen. Berlin: Heinrich-Böll-Stiftung (Schriften zu Wirtschaft und Soziales 6). <https://www.boell.de/sites/default/files/2015-02-wirtschaft-ist-care.pdf>

Winker, Gabriele 2013. Zur Krise sozialer Reproduktion. In: Care statt Crash. Sorgeökonomie und die Überwindung des Kapitalismus. Baumann, Hans and others (ed.). Zürich: Edition 8. 119-133. <http://www.tuhh.de/t3resources/agentec/sites/winker/pdf/Krise_sozialer_Reproduktion.pdf>

Winker, Gabriele 2015. Care Revolution. Schritte in eine solidarische Gesellschaft. Bielefeld: Transcript.

Degrowth is not only a label for an ongoing discussion on alternatives, and not just an academic debate, but also an emerging social movement. Regardless of many similarities, there is quite some lack of knowledge as well as scepticism, prejudice and misunderstanding about the different perspectives, assumptions, traditions, strategies and protagonists both within degrowth circles as well as within other social movements. Here, space for learning emerges – also to avoid the danger of repeating mistakes and pitfalls of other social movements.

At the same time, degrowth is a perspective or a proposal which is or can become an integral part of other perspectives and social movements. The integration of alternatives, which are discussed under the discursive roof of degrowth, into other perspectives often fails because of the above mentioned skepticisms, prejudices and misunderstandings.

The multi-media project “Degrowth in movement(s)” shows which initiatives and movements develop and practice social, ecological and democratic alternatives. Representatives from 32 different fields describe their work and history, their similarities & differences to others and possible alliances. From the Solidarity Economy to the Refugee-Movement, from Unconditional Basic Income to the Anti-Coal-Movement, from Care Revolution to the Trade Unions – they discuss their relationship to degrowth in texts, videos, photos and podcasts.

The project was run by the “Konzeptwerk Neue Ökonomie” (Laboratory for New Economic Ideas) in Germany, so most of the authors are from there. However, there are a couple of clearly international perspectives and most of the movements work far beyond the national level.

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We recently had the chance to speak with Ernst Hafen and Ulrich Genick of MiData (pronounced my-data), a Swiss cooperative that aims to restore users’ data privacy through an innovative market solution.

Presently, the use of user data is mostly unregulated in the EU, with varying rights and privacy protections across EU member states which mostly stop at the requirement for consent and, thanks to “right to be forgotten” legislation, the deletion of collected personal data. In the United States, a patchwork of federal and state regulations safeguard various categories of data, e.g. financial data and video rentals, with a distinct lack of protections for personal data at large. As a result, personal data is collected by innumerable parties and ultimately used without the knowledge or (active) consent of exploited ‘data subjects.’ From the tracking cookies which document our movements across the Web to the flows of information generated by FitBits and other devices associated with the “quantified self” movement, personal data about our on- and offline activities is collected, bundled, and sold for massive profits. The emerging ‘asset class’ of personal data is estimated to reach $1.4 trillion by 2020 for European citizens alone.

With MiData, set to launch in Q3 2017, the citizens of the world may have a chance to take back this value which they generate through cooperative action and improve their own healthcare in the process.

MiData has termed itself a “health data cooperative,” offering a platform on which user-members can upload copies of their medical data, as well as alternative streams of information such as diet, exercise, and sleep metrics which have become more easily accessible through the rise of mobile devices (so-called “mHealth” data). Hafen and Genick were also very interested in genome data, insofar as it represents a category of information that currently does not exist in aggregate. The collection of these diverse streams of information into a single source, they said, could very well bring about a new age of “precision medicine” whereby treatments become highly targeted to individuals and their habits and all the more effective because of it.

MiData’s cooperative structure allows users to engage with the platform without becoming cooperative members and offers membership for a small fee. Members will govern the cooperative through a general assembly based on the principle of one-member-one-vote, including electing a governing board of directors and choosing where the cooperative will invest its profits. Though MiData will be a cooperative specifically for Swiss citizens, the software it has produced is open-source and will be freely licensed to any other data cooperative that meets their guidelines. Talks are underway to begin a German health data cooperative. MiData’s next challenge in its pursuit of a global federation of data cooperatives is developing software which will facilitate the secure sharing of data between these national instances.

By becoming a dominant health data repository, MiData hopes to become something of a gatekeeper for this data, attracting non- and for-profit researchers while allowing users a high degree of control over who can access their personal data. For example, one’s physician might be given access to all personal data through the platform, while a non-profit cancer research institute could be given access to only medical and dietary information; users could deny access to an exploitative for-profit drug company, or even for-profit researchers in general.

Those companies who do seek out the information held by MiData cooperative will serve as the cooperative’s source of funding, paying a fee to use the data in their research. Revenues collected will be used to pay for administrative overhead, and any leftover profits will be invested under the guiding hand of the cooperative’s general assembly made up of its user-members. Interesting to note is that, in the cooperative’s bylaws, these profits cannot be paid back to user-members as dividends but must rather be invested in projects and research of some benefit to the public. Hafen compared this strategy to that of blood donations which find more success when they do not offer a financial incentive to donate.

Alongside this use of data for research, MiData will also support a native app economy not unlike that of Apple and Google’s mobile-app marketplaces. With these apps, carefully vetted by a Data Ethics Committee, users will be able to make use of their own data; a marathon training app, for example, might combine a user’s sleep habits, BMI, and diet to generate a fine-tuned exercise regimen to shave a few minutes off of their mile time. Hafen and Genick were particularly excited about the possibilities of this app economy, going so far as to suggest that by its free-market forces the world might even see a standardization of health data markup which is now irregular not only between countries but even hospital to hospital. Were users to require their data in some particular format to make use of a popular app, they might very well incentivize their local healthcare provider to provide them this data in such an emerging standard.

Though MiData has not yet launched, they have already found major success. The cooperative has funded much of its own development via paid research trials which provide not only users for the platform — for example, one study asked post-bariatric surgery patients to use the app to monitor their recovery — but also proofs of concept that have attracted the attentions of additional researchers. The platform has also engaged in “citizen science” projects, led by Genick, which seek to demonstrate its capabilities by providing a fun space for user engagement. In one such trial, users were sent samples of compounds which they ingested. They were then asked to note whether or not their urine smelled of asparagus, the result of which was compared to their genome data in order to locate the gene which causes this effect. Genick noted that the cost of such trials are usually in the millions, while MiData was able to successfully run them for tens-of-thousands.

While much of our conversation centered around health data, it was clear that the ideological ambitions of Hafen and Genick are grand: they hope that MiData might set a model by which all personal data can be defended from lawless exploitation, with its value returned to the publics who create it. MiData’s immediate goal, however, must remain the protection and cooperative monetization of personal health data. This is because, at its core, the MiData platform relies on users voluntarily uploading their data, and thus these users require access to the data which they are to upload. Presently, personal health data is one of the few kinds of data to which citizens of the world have the “right of access,” a right to a copy of the data collected about them. While enhanced EU data protections legislation will come into effect in 2018, requiring that all data collected about EU citizens by companies across the world to be accessible to the data subjects who generate it, for now the scope of the MiData cooperative will be pragmatically limited.

We are absolutely taken by MiData’s early successes, and wish them well with their upcoming launch. We all ought to be reminded by their innovative model that platform cooperativism is not only about a one-to-one replacement of sharing economy apps with cooperatively owned solutions. The cooperative seizure of yet-exploited markets represents a meaningful avenue of struggle.

Photo by giladlotan

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Camille Kerr, ICA Group — Platform cooperativism has the potential to completely transform the caregiving industry – including childcare and homecare – into dignified jobs where people make a livable wage and have control over their work lives. Because of this potential, the ICA Group has been partnering with multiple divisions of the Service Employees International Union to research, build models, and launch unionized platform coops. For example, The ICA Group has been working with SEIU Public Services Division to develop a childcare platform solution that enables family childcare providers to benefit from shared services, centralized administration, as well as joint marketing services. The coop-network, likely to launch this coming spring, will further act as a bridge between industry, unions and policy-makers who share the goal of improving childcare jobs and quality.

(7 mins) Platform Co-op Showcase 6 – ICA Group:

Photo by afagen

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“The origins of modern intellectual property law can be traced back to the occasional awards of exclusive rights to artists in ancient Persia and Greece.

“Letters patent,” meaning open letters, were issued in 14th-century England to induce foreign craftsmen to relocate there. Attempts to coordinate global intellectual property rules led to the 1883 Paris Convention and the 1886 Berne Convention, and eventually to the creation of the United Nations’s World Intellectual Property Organization in 1967. But nations who signed on to those agreements retained the ability to determine the length of patents and what products would be covered. For many nations, that flexibility meant excluding medicines from patent protection. For example, Germany’s patent law of 1877 labeled medicines as “essential goods,” along with food and chemicals, and prohibited any attempts to patent them.

In the middle of the 20th century, several postcolonial nations adopted similar laws. India’s patent law extended only to the processes for creating medicines, not the drugs themselves. The law opened the door for Indian pharmaceutical manufacturers to reverse-engineer patented drugs and then devise different, cheaper production methods. India soon became known as “the pharmacy of the developing world.” Brazil, Mexico, and other Central and South American countries also adopted limits on the patentability of medicines.

European countries like Italy and Sweden didn’t grant pharmaceutical patents until the 1970s, and Spain refused to do so until 1992. Even when medicine patents were given, many nations granted liberal access to compulsory licenses for patented drugs, meaning that generic manufacturers were free to make the drugs and pay a royalty to the patent holders. During the period between 1962 and 1992, Canada granted 613 licenses to import or manufacture pharmaceutical products.

As commerce became increasingly global, this state of affairs deeply concerned pharmaceutical companies. Over time, an industry that once competed on the basis of manufacturing innovation and price had come to rely on the profits of patent monopolies. At one time in the mid-20th century, for example, Pfizer drew a full 33 percent of its global sales from just two patented drugs. So—as extensively chronicled in Peter Drahos and John Braithwaite’s 2002 book, Information Feudalism: Who Owns the Knowledge Economy? —Pfizer took the lead in an ambitious campaign to create a global system of intellectual-property protection: an enclosure of essential medicines.

The first step in that effort was countering the dominant international view that medicine compounds were not private property that could or should be owned by companies and individuals. Economists call this process the transformation of a public good into a “club good,” like taking a public park and turning it into a gated dues-required golf course. A July 1982 op-ed in The New York Times by the chair of Pfizer International, entitled “Stealing from the Mind,” started the process of creating that club good. The column charged that US inventions were being “stolen” by governments that didn’t protect patent rights. When governments outside the US refused to block generic manufacturing, the pharmaceutical industry argued, they were indulging acts of piracy.

But there was little in the way of binding international law to back up that position. So the industry pushed directly for the US government to make intellectual-property protection a priority in all trade negotiations. Of course, inserting monopoly patent rights into trade agreements runs counter to those agreements’s stated purpose of dismantling barriers to global competition. Yet the pharmaceutical industry, reliably at the top of the list in both lobbying expenditures and political campaign contributions in the United States, quickly found willing partners on Capitol Hill and in the White House. The United States soon adopted intellectual property protection as a litmus test for its trade partners.

The approach was to offer carrots to patent-resistant countries—enhanced access to US markets and some reductions in the subsidies of US agricultural exports—while simultaneously brandishing some imposing sticks. In 1984, aggressive pharmaceutical sector lobbying helped amend the US Trade Act to give the president the authority to impose duties on or withdraw trade benefits from any nation that did not provide “adequate and effective” protection for US intellectual property.

A few years later, the law was amended again, this time to give the US trade representative the power to put offending countries on what became known as a Special 301 watch list, a designation dreaded by countries whose economies relied on trade with the United States. The two countries that resisted pharmaceutical patents most vigorously, India and Brazil, were placed in the more serious “priority” watch list.

Against this ominous backdrop, the World Trade Organization in 1986 convened talks to create a global intellectual-property agreement. At the time the talks began, more than 40 of the 90 counties involved refused to grant patents for pharmaceutical products, and others that did grant them adopted strict limits. But over the course of years of negotiations, US trade pressure wore down the resistance. By April of 1994, the Agreement on Trade-Related Aspects of Intellectual Property Rights, a.k.a. TRIPS, was signed by 123 government ministers. The deal was one of the foundational documents of the World Trade Organization, and immediately became the most significant intellectual property agreement of modern times.

TRIPS transformed an uneven worldwide patchwork of intellectual property law into a blanket of standards mandating protection for holders of patents, copyrights, and trademarks. For patent holders, that protection features at least 20 years of government-granted monopolies on their products, including medicines. TRIPS also requires each nation to award intellectual-property rights regardless of national origin, a boon for multinational pharmaceutical corporations, and a death blow to their local manufacturing rivals.

The enclosure of essential medicines was complete.” (http://www.thenation.com/article/corporations-killed-medicine-heres-how-to-take-it-back/)

The Fallacy of the Patent Incentive, by Fran Quigley:

“When it comes to inducing innovation for essential medicines, it turns out that the evil of monopoly patents isn’t at all necessary.

The history of pharmaceutical innovations, especially vaccine developments and life-saving treatments for infectious and chronic diseases, shows that the critical research behind these developments was created outside the patent system. Even in the current post-TRIPS era, patent-seeking private industry still looks to governments to provide funding for pharmaceutical research, especially for essential medicines. The US National Institutes of Health alone provides $30 billion annually for medical research; governments provide tax credits to support corporate research; and government health programs are bulk purchasers of patented medicines priced far above the costs of production.

When it comes to medicines, the taxpayers of the United States and other research-supporting countries are the very opposite of free riders: They pay to build the bus, fill it with fuel, and hire the driver. But they’re still asked to pay a steep fare if they wish to take a seat.

In fact, a decade ago, US economist Dean Baker crunched the numbers and estimated that the US could save over $140 billion a year if its health systems could provide medicines without the artificial mark-up imposed by monopoly patents. That money could fund the replacement of all private industry research and development several times over, while still leaving billions of dollars in remaining public benefit. A significant source of those savings derives from eliminating the for-profit pharmaceutical companies’s expenses on marketing, a cost that exceeds their investment in research and development. As it happens, there are more efficient uses of resources than funding television ads for erectile dysfunction drugs.

The enclosed medicine system inflicts additional damage beyond the artificially inflated cost of patented medicines. The resources of for-profit corporations are inevitably concentrated on the development and promotion of medicines that can be sold at a high mark-up to wealthy consumers. “Lifestyle” drugs that address male pattern baldness or sexual performance are exhaustively researched and marketed, yet the past half-century has seen just one drug developed to treat tuberculosis, which kills more than a million people each year. A landmark study published by the British medical journal The Lancet showed that of the 1,556 new chemical entities marketed between 1975 and 2004, only twenty-one were for tropical diseases.

When corporations do develop a new drug, it more than likely doesn’t provide much value to society. Remarkably, a full 70 percent of the medicine brought to market by the industry in the past 20 years provided no therapeutic benefit over the products already available. Instead, these “me too” drugs were put forward in order to grab a share of an existing lucrative market.

The inefficiency of the enclosed medicine is paired with the creation of real barriers to medicine innovation across the board. By definition, a reward system based on artificial exclusivity will wall off knowledge from being shared. For-profit pharmaceutical corporations are known for discouraging innovations by creating voluminous “packet thickets” and seeking extended protection for their monopolies in a process known as “evergreening” their patents.

Seen through the lens of a pharmaceutical corporation, all of these approaches are fully rational: The industry is one of the most profitable in recent history. The rest of us are not faring as well. Law professor Michael Heller has labeled the costs associated with over-enclosure and lack of knowledge sharing as the “tragedy of the anti-commons.”

It is an economic theory, of course. But, for the millions of people who die each year from diseases neglected by the current medicine system, the tragedy is not the least bit theoretical.”

Photo by Clearly Ambiguous

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“Between the 15th and 19th centuries, the rich and the powerful fenced off commonly held land and transformed it into private property. Land switched from a source of subsistence to a source of profit, and small farmers were relegated to wage laborers. In Das Kapital, Marx described the process by coining the term land-grabbing. To British historian E.P. Thompson, it was “a plain enough case of class robbery.”

More recently, a similar enclosure movement has taken place. This time, the fenced-off commodity is life-saving medicine. Playing the role of modern-day lords of the manor are pharmaceutical corporations, which have taken a good that was once considered off-limits for private profiteering and turned it into an expensive commodity. Instead of displacing small landholders, this enclosure movement causes suffering and death: Billions of people across the globe go without essential medicines, and 10 million die each year as a result.

Many people curse the for-profit medicine industry. But few know that the enclosure erected around affordable medicines is both relatively new and artificially imposed. For nearly all of human history, attempting to corner the markets on affordable medicines has been considered both immoral and illegal.

It’s time now to reclaim this commons, and reestablish medicines as a public good.

Most of us define public goods broadly. We use the term to refer to benefits like law enforcement, street lights, and mass transit, which are collectively provided and deliver shared value to all. Economists narrow down that definition somewhat, saying that public goods are non-rivalrous and non-excludable in their consumption.

Non-rivalrous means that any one person can benefit from a good without reducing others’ opportunity to benefit as well. My eating an apple prevents you from consuming it, so that’s a rivalrous good. But I can watch the same TV show as you without lessening your opportunity to enjoy it as well—that’s non-rivalrous.

Non-excludable means what it sounds like: A person cannot be prevented from consuming the good in question. Clean air is a good that can be enjoyed by all without the possibility of denying access to those who don’t register or pay a fee. But access to a private swimming pool is an excludable good. The classic example of a non-rivalrous, non-excludable public good is a lighthouse: One ship benefitting from its warning doesn’t subtract from any other ships’ chances of enjoying a similar benefit, and there’s no practical way of limiting the lighthouse’s warnings to a select few.

As the English enclosure movement proved, exclusivity can be artificially created by literally or figuratively walling off common access. Exclusivity can be undone as well: The modern open-source software movement takes a good that some have tried to make exclusive—software code—and freely shares it, leading to a plethora of creative developments.

In terms of medicines, an individual pill is rivalrous, but the details of the formula for creating that pill are not. Knowledge is a classic public good, in that it can be shared widely without penalty to the original owner. As Thomas Jefferson said, “He who receives an idea from me, receives instruction himself without lessening me; as he who lights his taper at mine, receives light without darkening me.”

The public-health implications of access to medicines generate another core quality of public goods: positive externalities.

One person’s consumption of an essential medicine provides clear benefits beyond the direct consumer. Vaccines, for example, prevent the recipient both from getting ill and from spreading the disease to others. If a society vaccinates widely enough, the chain of disease transmission is broken, leading to the quintessential public good of mass immunity. Global distribution of the smallpox vaccine, for example, has led to the eradication of a disease that once infected 50 million people a year.

Even less obviously social medicines allow their recipients to better contribute to the social fabric and economic productivity of their communities. These medicines save costs for the broader society, too. When a diabetic takes insulin or a person with a risk for heart disease takes cholesterol-reducing medicine, they not only function better: They also lower their prospects of needing more expensive medical treatment, which is a cost often shared across societies.

Conversely, a lack of access to medicine causes enormous social problems in terms of contagion and economy-depressing illnesses.

So it’s little wonder that, for nearly all of human history, societies have treated medicine as a commonly held benefit. Until well past the middle of the 20th century, few countries allowed individuals or companies to hold exclusive rights to produce medicines. And governments have long been involved early and often in the pharmaceutical industry, creating the very opposite of a laissez-faire market. Most industrialized governments tightly regulate the production and distribution of medicine, while actively promoting vaccinations and encouraging safe use of other medicines. Governments are both leading funders of medicine research and top purchasers of the end products of that research.

When governments don’t take a sufficiently activist role in the field of medicines, public opinion pushes them further. In the 1990s and 2000s, advocates gave voice to passionate outrage over the devastating human cost of patent-priced HIV/AIDS medicines, which limited access to sufferers who could afford expensive treatments. US activists threw the ashes of AIDS victims on the lawn of the White House, while African activists called treatment-resistant government ministers murderers. The protests led to the dismantling of patent price barriers—and then to massive public programs to distribute the medicine at low or no cost.

Among governments and the public alike, medicines continue to be treated as a good quite distinct from consumer items like cell phones or flat-screen TVs. A human right to access essential medicines has found its way into international treaties and national constitutions. A moral claim for universal access to essential medicines has been put forth not only by faith-based organizations and civil society actors, but also by many drug developers themselves. Jonas Salk, for example, declined to pursue a patent for the polio vaccine, saying the patent belonged to the people. The creator of the first synthetic malaria vaccine donated the patent to the World Health Organization.

As Salk said in 1952: “Would you patent the sun?”

Photo by Victoria Reay

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This trend raises some fascinating questions about state/corporate bureaucracies vs. social commons:  Which offers the better value?  Which is more reliable and satisfying?  Could social commons help bring down the cost of conventional insurance while introducing a more human, caring dimension to healthcare?

Reporter Abby Goodnough tells the story of a family that was priced out of the insurance market, and so decided to cover their potential medical bills through a “sharing ministry.”  Instead of paying $600 per month for insurance with a $10,000 family deductible, the Doyle family in San Antonio, Texas, now pays $405 per month.  They also pay the first $300 for any medical bill they receive, and there is a spending cap of $250,000 for any illness or injury.

The family confessed to its misgivings about entering into such a plan:  “What if people don’t pay their share and what if the money doesn’t come in?  But that’s where the faith-based part comes in – I’m really going to rely on God.”

Religious faith is a big part of these expense-sharing plans.  Many members join because it helps them fulfill a biblical command that people share one another’s burdens, and because the mutual commitment among participants is a reassuring form of human solidarity. The plans themselves often reflect religious moral judgments:  no medical payments for injuries caused by driving drunk, for example, or for sexually transmitted diseases contracted via an extramarital affair.

Such conditions make these expense-sharing plans unacceptable to most secular consumers.  That said, the “sharing ministries” constitute attractive commons for meeting basic medical needs that the ridiculously expensive and ruthless American marketplace does not.

This is often the case when commons surge in popularity.  They fill needs that markets find too expensive or cumbersome to meet.  That’s because many markets tend to have massive overhead costs, legal complexities and limited competition and choice; their business models just don’t accommodate lower thresholds of service.  Self-organized financial commons based on social and religious affinity, by contrast, are quite lightweight and less expensive, but still quite reliable. The social solidarity makes them well-equipped to provide better value more efficiently and in more humane, flexible ways.

Ah, but are these faith-based sharing schemes too risky and unpredictable?  A good question. It all comes down to a matter of trust. Do you trust legally sanctioned markets and their bureaucracies (which can be capricious, unresponsive and only nominally accountable)?  Or are you better off relying on social communities of goodwill of which you are an active member?  Such community act with a certain sense of conviction and reliable reciprocity (even if they have limited resources).

It’s true that expense-sharing ministries may not cover expensive treatments for a serious illness.  Or they might run out of money.  In a 2001 case, the Ohio attorney general sued a plan whose leaders had sent $15 million on homes, vehicles and excessive salaries.  Is the auditing and state oversight of plans adequate?

Still, such abuses seem rare.  For their members, the plans provide a way to escape the soaring expenses and faceless complexity of market/bureaucratic systems.  What’s not to like about that?

Members of these groups often receive handwritten notes of concern from other members along with their insurance benefit check.  If someone has a medical problem that isn’t eligible for coverage, they often ask the community for financial help – and get donations.  People learn about the groups through their friends; there is no advertising.  It all feels more accessible and responsible than mega-corporations that are structurally beholden to big institutional investors and hedge funds, and overseen by inept federal regulators and legislators bought off by industry lobbyists.

Self-organized insurance pools as an antidote to predatory corporate health insurance?  There are risks and limitations, to be sure, but also many attractive aspects.  I wonder if there are some worthwhile innovations to explore here.

Photo by GotCredit

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