International human rights treaties, as well as domestic constitutions in many countries, recognize a universal right to the highest attainable standard of health, which includes a claim to effective and equitable access to health care. Realization of this right guarantee, however, has been complicated by the high costs of health care, in the context of limited available resources. These questions of access, affordability, and quality in health care are in turn intricately tied to issues of efficiency and equity in health care innovation, among other factors.
Recent expansions of patent coverage have dramatically raised the cost of medicines in many parts of the world, and also introduced new questions of upstream innovation controls through gene patents. Technological innovations in eHealth hold great promise for improving access to healthcare and health information for the poor and underprivileged. Unfortunately, obstacles to effective eHealth include lack of open and interoperable standards, closed digital repositories and inaccessible scholarship, and technical infrastructure barriers. How will these developments impact access to health care in the years to come?
Christopher Mason, Weill Cornell Medical College of Cornell University
Thana Cristina de Campos, Fundação Getúlio Vargas Law School - Sao Paulo
Amy Kapczynski, UC Berkeley School of Law
Talha Syed, UC Berkeley School of Law
Moderator: Lisa Larrimore Ouellette, Yale Information Society Project
Some of the questions to be pursued by this panel include:
In light of the increasing trend toward personalized medicine, what are the implications of genetic patenting for the right to health care?
How has TRIPS implementation impacted access to medicines in developing countries? What implications does this have for constitutional treatment of the right to health in those countries affected?
What solutions are promising for easing the tradeoffs currently experienced between innovation systems and access to health care? How can the tensions be resolved between conceptions of health and knowledge as public goods, and efforts to create markets for the supply of health innovations?
What other ingredients of access to effective and equitable health care should an A2K framework be concerned with; for example, eHealth innovation, access to health information, technical infrastructures, training of personnel, etc.?
Thana Cristina de Campos begins by discussing the way in which transnational corporations must collaborate with states to further human rights. Her goal here is to raise public awareness on a shared global responsibility for access to medicines. Pharmaceutical companies are at the center of this issue.
-What is Access to Medicines? Human right to health under Art. 25, of Universal Declaration of Human Rights (UDHR)
-What is Access to Knowledge? also a human right, right to enjoy the benefits of scientific progress and its applications: Art. 27, UDHR
These two are intrinsically linked. She argues that a rights approach is important in addressing health policy.
Drugs are goods embedded with information and knowledge. The most suitable policies for addressing neglected diseases is a public/private partnership. This partnership should ensure meaningful participation, empowerment, etc.; it's not just about the drugs themselves. How should we define responsibilities of parties?
She argues corporate responsibility must extend beyond merely respecting human rights but should also protect and fulfill rights to access to medicines. Access to medicines should be clearly stated as a priority in corporate policies. This leaves me with some questions. Should this be a state regulatory issue, or is it just a normative argument aimed at corporations?
Amy Kapczynski is up next. She asks what do we mean by human rights in this context? It might be an analytic structure, a philosophical conception. Alternatively, she says, rights might be a political claim to justice. Third, it could be a set of legal priorities. What is the difference among these, and how are they related? She asserts that the legalistic lens is all we should use.
Where do we need more conceptual work? We need to get more rigorous about our arguments about what countries need to do to pursue the right to health. The recent Grover report gets very concrete about the proper policy measures. She argues that the Grover list is good, but we might want to extend it--e.g., limiting remedies in patent suits.
But, on the other hand, she says there are conceptual issues. How can right to health require one patent framework? There are other ways to pursue right to health outside of patent policy. Why is it that developing countries need these patent policies rather than price controls, insurance reforms, etc? Even though these things are important, she argues that the effectiveness of these alternative reforms often depends to some degree on patent policy as well.
Are flexibilities with TRIPS enough? She thinks that forcing countries to go through TRIPS flexibilities might already be a violation of the right to health. She thinks that sometimes it narrows our arguments too much to work only through this constrained legal framework. She thinks it's hard to talk about obligations of one state to the people of another, and it's hard to talk about corporate obligations to the global population. Question: Does she mean it's difficult to make these arguments philosophically or pragmatically?
Talha Syed is up next. He will consider three approaches and their implications. We can do much more with economic analysis than is often done in this field, but he ultimately thinks economic analysis has positive and normative failings.
He thinks economic analysis supplemented by distributive justice is better than a human rights approach. He thinks the economic analysis of patent protection is often weak; pharma may be the exception, but only in a narrow case-by-case basis. It also has normative failings, however. Rights are often associated with absolutist claims of inviolability. They often don't tell us how to make trade-offs.
As a result, he finds distributive justice frameworks more helpful. Each person has a legitimate claim to have his or her life go as well as possible. He also holds that there is a priority principle: it's more important to raise the welfare of those who are worse off. He is open to hearing how rights could be helpful, but he wants to know how they can do any work beyond the justice framework?
He thinks the fundamental economic tradeoff is access for poorer people today and better off people tomorrow. Even if you think that access does harm innovation incentives, which he doesn't, under the priority principle we still should do it. What do rights add to this?
Christopher Mason is the final panelist. What are genomic rights? Many people think we have rights to our genetic code in the same way we have rights to bodily integrity. Within a year and a half to two years, it will be cheap and quick to trace or genomes to facilitate very personalized medicine. But it won't be economical to give complete pictures if companies own exclusive rights to many of the genes. In fact, more than 20% of the human genome is already patented.
Questions and Answers:
To Professor Syed, isn't his framing of the trade-off between helping someone worse off today and better off tomorrow too simplistic? People down the line who get access to drugs after patents expire might be better off because more drugs have been produced under the current regime. Amy Kapczynski wonders about whether the people who need drugs the most will ever get the drugs they need considering that incentives are skewed to produce drugs for diseases in wealthy countries but not so much in poorer countries.
Question 2: do you think there's a right to healthcare? if so, what does it entail? Talha Syed says that there isn't much of a difference between saying there's a right and saying societies should do certain things for people. He doesn't think rights add a lot. Amy Kapczynski says there are lots of ways to think about rights. There isn't a problem if you think about a right as a bundle of certain policy tools. Thana de Campos says it doesn't matter whether we call it a right but rather whether it furthers human dignity.
Question 3: In biotechnology and gene patents, do you think the market will roll back patents without requiring state intervention? Christopher Mason says you don't need patents with genes. You can do genetic work better without patents; you only need it for selling things.
Question 4: Does a rights framework help us to encourage sharing knowledge and technology transfer from private actors when states might lack other tools for achieving this? Amy Kapczynski says the language might be useful at the pragmatic level but not necessarily rights institutions.
Question 5: Other legal systems have different domestic normative tools for analyzing these problems; how do we navigate all these differences in the international sphere? They do have different tools, but often when these issues are actually treated the dispositive outcome factors end up being the same.
Question 6: In my view, rights actually do add something to this. If we start with a distributive justice framework, many people are going to think about distributive justice through a resourcist paradigm, about what people have. If you can move the discourse to focus on a broader paradigm of justice, such as the capabilities approach, you need to have an account of which capabilities are the relevant ones. It seems to me that the most effective way to frame this debate is through the language of rights. It is implausible to think of rights as absolute inviolabilities; instead we could think of them as "optimization requirements" (Robert Alexy) or "excluded reasons" (Richard Pildes, arguably Ronald Dworkin). This, I think, is a more effective way to frame these health issues than merely a distributive justice paradigm, because it allows us to establish more concrete constraints on both the substantive limitations to health and also on the process through which these limitations are formulated. Talha Syed says that rights can be useful in the abstract, but as they are employed often aren't.
For twitter commentary on this panel from the audience, check out http://twapperkeeper.com/a2k4/ entries for Friday, February 12 at 19:00h to 20:30h.
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