“Neglected Diseases”: the name says it all. If this label sticks forever, it means we’ve continued to fail millions of patients every year. But the term “NDs” (along with “NTDs”, T for Tropical) has gained currency, so we’ll save the wordsmithing for another time. For the uninitiated, NDs are those that affect primarily the poor; these diseases thrive at the margins of the world’s attention. Specific examples are catalogued by a variety of groups (WHO, TDR, GNNTD, G-FINDER, BVGH, PLoS, and many others) but one thing all NDs have in common is a meagre reserve of treatments, tests, and vaccines available to treat the billions of people currently struggling under their burden. Some kill outright. Others disable and disfigure, crippling individuals, their livelihoods, their families, and their communities.
These diseases are ancient enemies of humanity1. Tuberculosis, for example, once claimed countless lives all over the world, including prominent artists and political figures. Even today, nearly forgotten in wealthy countries, it still takes a heavy toll in the rest of the world: one of every three people on Earth is currently infected. The biomedical revolution, together with investments in public health and sanitation, have reduced the infectious disease burden to nearly an afterthought for most people in high-income countries: here one generally expects to be free of infectious disease.
This expectation is a good thing: it allows individuals and communities to make reasonable predictions about the future, and often thrive as a result. The bad thing — the shocking thing — is that dozens of diseases do still afflict hundreds of millions of people, everywhere, in an age where it is possible to develop excellent technology for treatment and prevention.
So why do we have plentiful treatments and cures (with few or manageable side effects) for diseases of the rich, and few to none (with atrocious side effects) for diseases of the poor? Why this neglect? The simple answer is that we rely to a large extent on financial incentives to private industry to pay for large clinical trials. The good news about this is, while we have far yet to go, there is an increasing willingness to finance health technology development for NDs.
More good news: we have a new type of organization, called a Product-Development Partnership (PDP), that works like a distributed, not-for-profit drug company. PDPs are devoted to channeling increased ND funding into focused research and development (R&D) efforts for specific technologies (e.g. a malaria vaccine, a better TB test, safer drugs for sleeping sickness).
But ND product development remains relatively small-time. This has to change. Even if the best science for the most neglected is being done, we still need a lot more of it: huge numbers of patients are sick, their communities mired in disease and poverty.
In short, we need an Apollo program2 for Neglected Research and Development (NeRD3). The world’s sick and poor are in urgent need. Meanwhile, major pharmaceutical firms, in part because of the spectacular expense of drug development, are threatened with sharp revenue losses as patents on their biggest moneymakers (e.g. Lipitor, Viagra) will be expiring soon. Remember the Apollo Program? We set foot on the moon (well, a few of us did) but making the effort granted society more tangible technological spinoffs, from advanced plastics and ceramics, to microwaves and integrated circuits.
Likewise, figuring out how to do drug development cheaply for people in poverty could benefit rich countries and drug companies directly4. A cheap bedside diagnostic device helps a patient living in a remote village outside of Mwanza, Tanzania relying on a volunteer community health worker, but it also helps a senior citizen living in Flint, Michigan relying on Medicare.
Our aim here at Mind the Health Gap is to help foster an R&D community effort for NDs as huge and effective as those driving advances in cardiovascular disease, diabetes, and cancer. And of course that’s a big task without a large profit incentive, but dozens of ideas have been articulated for creating this incentive. And let’s not forget that many brilliant people have motives beyond cashmaking. To have an impact on the world. To explore uncharted scientific territory. To win admiration and affection.
Health technology R&D presents an opportunity for humanity’s most brilliant scientific minds to be directly involved in solidarity work with the poor. New health technologies can’t address all of the problems of poverty and injustice, but they can certainly help: if you’re too sick to work or go to school, you’re probably not able to do much to help your community overcome its problems. Effective, usable health technologies are crucial for people mired in poverty.
Can it be done? Definitely: it’s been done before! Within 15 years of discovering HIV, highly-effective drug cocktails were made available. A decade on, treatment became accessible for millions of people living in absolute poverty. While there is still a gaping chasm in access to treatment for the majority of people living with HIV, the game has changed quickly and massively, for the better, for formerly hopeless patients.
But effective treatments for HIV/AIDS would not have been developed without massive public funding, the tireless focus of biomedical research scientists and clinicians, and the efforts of major pharmaceutical companies. Essential for bringing these groups together was a community of devoted, energized, and highly-educated HIV/AIDS activists of all stripes who were engaged in questions of funding, R&D priorities, and progress on the latest therapies.
Mind the Health Gap intends to likewise multiply the size of the ND research community and magnify its efforts. We are bringing the diverse parts of the community together: funders, scientists, doctors, government agencies, companies, PDPs. We are reaching out and engaging those scientists not currently in the game. We’re building resources for the community to act more effectively, more co-operatively, and make faster, broader progress, with greater impact.
1 And just whose side are you on?
2 Or the Sputnik/Vostok programs, if you prefer.
3 Appropriate acronyms will be the subject of future discussion at the Mind the Health Gap.
4 This is not our aim, but is desirable if it brings more wealthy countries, individuals and industries on board