Human Rights, Intellectual Property and Access to Medicines, notes from Yale workshop

On April 26, 2013 I attended a half day meeting on “A Human Rights Approach to Intellectual Property and Access to Medicines” organized by the Yale Law School and the Yale School of Public Health. These are notes from my interventions on behalf of KEI.

1. KEI does a lot of work on intellectual property rights that has impact on human rights. We do not always give prominence to human rights law or the language of human rights, although at times and in the right context, it can be important to do so.

2. In general, as regards access to medicine, we see the human rights dialogue and remedies playing out differently for different issues, taking as examples the status of campaigns to deal with affordability and access to AIDS and cancer drugs, or the problems of under funding of R&D for neglected diseases. There is much less attention to the right to obtain affordable drugs to treat cancer, than for AIDS.

3. Access to medicine is not the only issue for human rights. The affordability of medicines or the reasonableness of prices is also important. No one should be required to sell off all of their assets to pay for a cancer treatment, and price gouging in general can reduce one’s quality of life in many other areas. If a government pays too much for one drug, it will have less money to pay for other drugs, other treatments, or other services and benefits. Innovation is also important, particularly for persons who have few or no effective treatment options.

4. For any effort to address the pricing and affordability of drugs, the first, second and third line of attack on access is always that high prices are necessary incentives to stimulate R&D. KEI does not see any long term sustainable solution to affordability that does not address the R&D funding issue. KEI does not think it is possible to achieve universal access unless people embrace delinkage of R&D costs from product prices.

5. As regards de-linkage, as well as other human rights, including the broader “right to development,” it is helpful to create more pressure on states to search for mechanisms that reconcile competing policy objectives in ways that protect human rights.

6. Human rights advocates may not feel they can endorse specific solutions to medical R&D funding, but they should be able to say that when a particular solution to funding R&D is inconsistent with universal access (both empirically and theoretically), governments have a duty to evaluate different approaches, to see if there are less harmful and acceptable alternatives, including proposals like R&D treaties and innovation prize funds, which are designed to raise R&D levels and innovation without high drug prices.

7. The human rights framework is widely perceived as a weak soft instrument. And lack of effective enforcement of human rights sends a signal that human rights have a lower status and require less attention.

8. Human rights advocates should look at the variety of mechanisms that have been used to enhance the enforcement of intellectual property rights. These include everything from binding agreements on the specific details of the implementation of intellectual property rights to global observatories, technical assistance programs, dispute resolution and a variety of trade sanctions. Which of these instruments could be a model for greater enforcement of human rights?

9. While many human rights resolutions and treaties rightly focus on the role of states in protecting human rights, there are also norms that apply to individuals and non-state organizations. In Article 2.2 of the 1986 UN Declaration on the Right to Development, “All human beings have a responsibility for development, individually and collectively . . . as well as their duties to the community,” and “should therefore promote and protect an appropriate political, social and economic order for development.” It is important to focus more attention to the role of individuals, including individuals who work for governments or large corporations.

Article 2
2. All human beings have a responsibility for development, individually and collectively, taking into account the need for full respect for their human rights and fundamental freedoms as well as their duties to the community, which alone can ensure the free and complete fulfilment of the human being, and they should therefore promote and protect an appropriate political, social and economic order for development.

10. In our experience, criticism of a large institution, like the United States government, or even a big company, like Pfizer or Novartis, has an effect. But in some cases, there is a greater effect by paying more attention to the role of the individuals who make and carry out the government or corporate policies. For example, when US government negotiators like USPTO’s Justin Hughes (WIPO treaty for blind negotiation) or DHHS’s Nils Daulaire (WHO R&D Treaty negotiations) bully developing country negotiators in ways that are harmful to the human rights of vulnerable populations, it is important to focus on their role too. The same is true for private sector executives such as Disney’s Bob Igor, MPAA CEO Chris Dodd, or Novartis CEO Joseph Jimenez, who are leading attacks on the human rights of vulnerable populations. Michael Froman will be the new head of USTR, and will be advised by people like Stan McCoy and George York. USTR is not just an agency, but is an agency that is run by people, and those people should be evaluated by the human rights community according to some standards.

11. The Gates Foundation presents unique challenges for the human rights community. On the one hand, Bill and Melinda Gates are extraordinarily generous, and have focused much of their philanthropy on the global poor, and have done much to improve global health. On the other hand, the Gates Foundation has played an extremely negative role in efforts to develop replacements for strong patent rights and high drug prices. The Gates Foundation is now more powerful than any government, and this too has consequences, as it operates without transparency or accountability, which itself undermines human rights.

12. Some of these points were addressed in a June 18, 2009 paper prepared for the UN Human Rights Council, Working Group on the Right to Development, High Level Task Force on the implementation of the right to development. The Global Fund to Fight AIDS, Tuberculosis and Malaria, the Special Programme for Research and Training in Tropical Diseases and the right to development. A/HRC/12/WG.2/TF/CRP.4/Rev.1.

Some points that were raised only indirectly

When one observes persistent abuses of human rights, such as national and global norms for intellectual property rights that create vast disparate in access to medicine, or the recent problems in negotiating a treaty on copyright exceptions for persons who are blind or have other disabilities, there is often corruption involved, and in particular, corruption associated with large corporations that perceive it to be in their own self interest to protect or advance policies that harm the pubic in general and poor people in particular. This is in fact a fundamental problem as regards human rights, and should receive more attention from human rights scholars.