Pharmaceuticals and the Right to Health: Reclaiming Patients and the Evidence Base of New Drugs

There has been considerable growth in clinical trials being offshored and conducted worldwide. Research on new drugs and drug development spending has skyrocketed over the past three decades, but the public benefits stemming from this boom remain limited. Because clinical trials are expensive, they often undermine the affordability and accessibility of new medicines. Once trial data has been sent off to headquarters, new problems emerge locally such as maintaining continuity of treatment for patients and ongoing attempts by trial sponsors to control patient data. This essay explores how coalitions of physicians and health policy makers in Brazil are scrutinizing the value of new drugs while securing patients' rights to high-cost medicines—and the complex political and market factors that impede such efforts. The "trial" is not only a hypothesis-testing instrument, it reinvents the doctor-patient relationship and opens new institutional and socio-medical possibilities. This analysis also serves as an ethnographic resource for physicians and patients in other low-income countries, where rights to health are constitutionally mandated but where needed medicines and their sustainable provisioning are constantly under threat.