By Bryn Gay, HCV Project Director, TAG
Access to medicines (A2M) activists have become better coordinated, articulate, and adept in responding to pharmaceutical industry shenanigans that threaten access to affordable medicines since the establishment of harmonized global intellectual property (IP) legislation under the initial 1995 Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS), TRIPS-plus free trade agreements, and related national policies. Big Pharma’s bullying strategies include lobbying and influencing policy- makers to adopt stricter IP provisions, threatening countries with lawsuits and trade sanctions for attempting to invoke IP flexibilities, and spouting unfounded propaganda to justify monopolies on medicines. Built on the relentless energy, extensive global networks, and urgent demands of HIV/AIDS activists, the A2M movement has developed and implemented a number of successful strategies to overcome treatment barriers that hold patients hostage to high prices.
A2M activists, framing grassroots campaigns through a human rights lens, have organized as—and with—people living with and affected by infectious diseases. Employing a community education and empowerment strategy, A2M activists have strengthened the technical and political knowledge of people at the center of these epidemics on issues such as:
- The technical aspects of filing patent oppositions before or after patents are granted;
- Guidance on what community advisory boards or governments should consider when negotiating medication prices;
- Advocating in favor of compulsory licenses or other mechanisms that promote the generic production of medicines;
- Monitoring the registration and national approvals of medicines under Pharma’s voluntary licensing deals; and
- Bringing community perspectives into high-level scientific committees or policy advisory groups.
Translating this knowledge into action involves the building of allies and partner networks at the national, regional, and international levels. Those efforts gained momentum at two gatherings this year: the Global Summit on Intellectual Property and Access to Medicines1 in Marrakech, Morocco, and the Community Activist Summit at AIDS 2018 in Amsterdam, Netherlands. Participants shared successes of the A2M movement, notably regarding hepatitis C virus (HCV) treatment. Some of the lessons were:
- Establishing strong, persistent relationships with health and trade officials, and providing them with data and evidence-based policies, contributed to decisions to use IP flexibilities. For example, Malaysian activists conducted a multiyear campaign to urge the Ministry of Health to invoke a compulsory license on sofosbuvir, opening up generic access to the HCV cure.
- Engagement of overlooked stakeholders can open up new treatment access strategies. For instance, activists were involved in sensitizing patent reviewers to public health concerns in patent filings; one Egyptian patent reviewer was responsible for rejecting the patent on sofosbuvir, which resulted in over 1.6 million people in Egypt receiving treatment since 2014.2
- Campaign planning and policy-making can and must include marginalized voices, including women, LGBTQ+ folks, patients, youths, migrants, people of color, and people who use drugs. Fostering the leadership of members of these groups also is crucial. Both summits centered marginalized voices and were structured to foster new leadership.
Participants reflected on potential pathways to overturning Pharma’s cartelization and price-gouging of medicines, such as:
- A People’s Pharmacy, a community-driven overhaul of how we currently prioritize, finance, develop, price, distribute, and monitor uptake of life-saving medicines. By de-commoditizing medicines, the People’s Pharmacy would reclaim them as common goods so that everyone who needs treatment can share and benefit from them.
- NASA for drug development is a model in which a government-led and -funded research and development agenda, responsive to public health needs, reclaims patent ownership and subcontracts aspects of the drug pipeline to private firms, universities, or research collectives.
- International human rights courts could hold Pharma accountable, hearing legal cases of human rights violations when patients are unable to access drugs due to IP barriers.
- Long-term patent reforms could include strengthening the patentability criteria and review process to avoid abuse of the patent system and granting of unmerited patents on “me too” drugs; allowing the public to attend patent granting decisions and expanding the community’s role in challenging patents; and shortening the length of patent life.3
The next phase of treatment activism will require sustainable financing for a community-led donor agenda, training and mentoring among a new generation of activists, technical capacity building and political education among advocates across disease areas (including in fields of noncommunicable diseases), and regular opportunities to exchange lessons and experiences within and between the global South and North.