Neglected diseases or neglected people?

During Saturday’s UAEM workshop on neglected diseases, one speaker brought up the point that perhaps we should not be talking about neglected diseases, but rather diseases that affect neglected people. HIV was neglected when it was thought to affect only gay men in San Francisco and it was neglected again when Africans were dying in troves even as HAART was dramatically extending lives in developed countries. Today, it remains neglected among such populations as African-Americans in Washington DC, who account for ~80% of HIV/AIDS cases in the city. And so not only do dengue, leprosy, Buruli and all the terrible “iases” remain neglected because they affect the types of people whom our society seems not to value, so do ailments that we would not intuitively place within the “neglected” category: heart disease, cancer, diabetes, which are increasing at alarming rates in the developing world. Sure, at least there is a prospect of advances in biomedical science against the diseases that affect people in developed countries, but this also means that we are restricting our efforts to interventions that are designed for the developed world and may be inappropriate/unaffordable, in other settings. There is little to no market incentive to develop interventions that specifically target the needs and constraints of poor/powerless people.

I think that the terminology of “neglected people” rather than “neglected diseases” forces us to face the underlying reason why we invest in certain diseases over others–not because they are less common or less amenable to intervention, but simply because the people who suffer from them do not have the requisite economic or political power to motivate a response. It also forces us to recognize the full scope of the neglect: it is not just disease, but also nutrition, access to education, simple interventions like ORT, civil protections… When we neglect entire classes of people, we neglect their every need, their every right, their every aspiration to “a life worth living”.

Turning the spotlight on neglected diseases

Peter Hotez of the George Washington Universityand staunch advocate for increased research on  neglected tropical diseases has been making some noise lately… In a May 2010 Op/Ed in the New York Times, he called on the Obama administration to take on neglected diseases as part of its Global Health Initiative. Interestingly, much of his argument rested on the threat that these diseases pose in the Western hemisphere, including our very own Charm City, where there have been cases of leptospirosis due to exposure to infected rats and dogs.

In a joint article in PLoS Medicine, Hotez argues in favor of a drug-based approach to eradicating neglected diseases, citing the success and cost-effectiveness of mass drug administration against schistosomiasis and onchocerciasis (with Merck’s ivermectin donation program). Co-authors Jerry Spiegel and Burton Siegel counter that too much attention (and funds) have been spent researching basic biomedical mechanisms and drugs for NTDs when a more effective approach would be to focus on non-medical determinants of health and comprehensive primary interventions like sanitation. They argue that mass drug administration leads to neglect of long-term prevention needs and dependence on drugs, with an inevitable resurgence of disease once donor funds dry out and programs end.

Spiegel suggests that a portion of all NTD research funds should be diverted towards addressing social determinants of these diseases. But isn’t the reason why these diseases are termed “neglected” that there aren’t enough funds in the first place? (As a sidenote, Hotez has argued in the past that NTD research funds could be increased by asking universities to devote as much money to NTD research as they pay in salary to the coach of their football team.) Social and primary care approaches are definitely necessary in order to maintain success over the long term, but they require prolonged efforts and funding before any measurable effect can be observed. It’s  difficult to pick just one approach over the other: should we eradicate poverty and rebuild health infrastructure first or throw everything we’ve got at these diseases ASAP? Ultimately, the authors all seem to agree that eventually a comprehensive approach will be needed, but disagree on the ideal repartition of our current funding and efforts.