Inequitable funding

Overall, the data indicate that public research money is not distributed proportionally based on disease prevalence and burden. “The allocation of research funding is highly inequitable”, commented Lawrence Gostin, Professor of Global Health Law at Georgetown University in Washington, DC, USA. In particular, breast cancer and leukemia receive a higher amount of research money relative to disease burden. “These diseases have highly passionate and vociferous advocates”, Gostin explained. “Leukemia is fueled by the face of children, highly compelling symbols that are sympathetic to audiences and the political community. Breast cancer has perhaps the most powerful and sympathetic advocates, often young mothers. It is also associated with women’s rights, so there is synergy between the rights and needs of women and breast cancer”. The pink ribbon, for instance, the symbol of breast cancer activism, was promoted by Self magazine and Estee Lauder cosmetics in 1992, one year after the Visual AIDS Artists’ Caucus created the red ribbon symbol for AIDS. “Breast cancer took a leaf out of the AIDS movement, with pink rather than red ribbons”, Gostin said. “In the US, even hulking NFL players wear pink”.

There are similar social reasons why COPD, lung cancer, and pancreatic cancer do not receive the same level of funding relative to mortality and burden. “The reason is there are no social movements around these diseases. As there are no identifiable and passionate advocates for these specific diseases, they are underfunded”, Gostin commented. Indeed, patient advocacy does have an impact on allocating research funding. “Patient activism and engagement is part of the policy making process”, said Jeremy Sugarman, Professor of Bioethics and Medicine, and Professor of Health Policy and Management at Johns Hopkins University in Baltimore, MD, USA. This is not necessarily an issue of overfunding or underfunding, Sugarman explained, but the fact that lobbying helps to attract funding for certain diseases and conditions. “If you hear stories that are well told, they attract funding”, he said. “As a society, we tend to pay attention to situations of urgency made clear through compelling narratives”.

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