How Much Would You Give to Save a Dying Bird?

The author illustrates the challenging relationship between patient advocacy and biomedical research, arguing that both are necessary in order to make progress on the treatment of disease.

Patient advocacy can benefit research, by clarifying outcomes that matter to patients, by recruiting patients to participate in trials, and by giving diseases public emotional salience. Patient advocacy can also offer false hope, by perpetuating the notion that spending more money on research will speed the discovery of cures. It has led to policy changes that were lifesaving in the cases of some diseases, such as AIDS, but caused more harm than good when it came to others, such as breast cancer.

The connection between patient advocacy and biomedical research becomes most challenging when the two endeavors merge: when the lending of emotional salience to health issues directs the generation and analysis of medical data or affects medical practice.

The author argues that the relationship between advocacy and research presents a paradox: a disease’s emotional impact makes people less receptive to data, but an emotional impact is required to research the disease in the first place.