December 04, 2012

Changing our definition of neglected diseases: Is it time to think beyond traditional terms?

GHTC Director

This post originally appeared on the Center for Global Health R&D Policy Assessment blog.

Depending on who you ask, you’ll come up with a number of different definitions for what exactly characterizes a neglected disease, as there’s no generally accepted definition. I personally like the one offered by the NIH: “Global health organizations define neglected diseases as those that are prevalent among impoverished and marginalized populations in the developing world. Tropical environments, poor living conditions, and limited access to health care contribute to the risk and spread of these diseases.”

But even this definition leaves something lacking. There are a number of conditions that cause severe morbidity or mortality in low and middle-income countries and still go unrecognized when we talk about neglected diseases. For instance, we at the Global Health Technologies Coalition (GHTC) tend to think of “neglected” in terms of the urgent need for tools to prevent, diagnose, treat, and generally improve the health of people in low- and middle-income countries around the world. If increased investments from governments and other stakeholders in research and development (R&D) are needed to create new and improved products for a certain disease or health need in the developing world, then we would define that health issue as neglected.

As an example, reproductive health issues and sexually transmitted infections can have devastating health effects for women on par with infectious diseases like tuberculosis, malaria, and neglected tropical diseases. Although pregnancy is not often thought of as a neglected condition, it could be, as there is an incredible demand for contraceptive options that don’t yet exist. Additionally, issues like non-communicable diseases are not traditionally neglected when considering the amount of funding and other investments pharmaceutical companies devote to developing products for conditions like diabetes. However, the distinct technological and infrastructure needs of health systems in the developing world, as well as the alarming climb in the prevalence of non-communicable diseases in these settings, have made them a much more urgent concern.

But why should a definition matter anyway? For those of us thinking about global health policy, terms and nomenclature are important. Consider, for instance, one of the many programs implemented by the US government to improve public health around the world. The US Food and Drug Administration’s (FDA) priority review voucher program lists specific diseases that are eligible for the agency’s incentive program. This list leaves out a whole host of neglected diseases. Among them is Chagas disease, which Congress has been attempting to include via new legislation for the past two years. This disease remains ineligible for the incentive according to the legislation and guidelines governing the program.

So we need to adapt the way we think about neglected health needs worldwide to reflect conditions—like pregnancy and reproductive health needs—that impact people worldwide, in addition to infectious diseases. Perhaps instead of framing our thinking around neglected diseases, we should instead consider a different term: neglected conditions.

By changing our thinking on neglected conditions, we open the door to increased attention, support, and programming to address all of these pressing health needs as a package—from infectious disease to childhood health needs like nutrition, reproductive health issues, and pregnancy-related complications. For instance, new and improved contraceptive and microbicide products, including multipurpose prevention technologies under development, could be an easy, cost-effective way to help women plan their pregnancies, address reproductive health needs, and prevent HIV and other STIs.

We also may be able to leverage funding and government policies to give greater attention to the important conditions and other contributing factors to illness that don’t fit precisely into current definitions of neglected disease. Programs like PEPFAR have evolved from a narrow focus on urgent needs related to HIV/AIDS to one that considers the impact of other diseases and conditions, like malaria, TB, nutrition, family planning, and others. This evolution has created important successes for the program, and has pushed programs and policymakers to think outside typical disease boundaries.

The US government is the largest supporter of research and other programs for neglected conditions worldwide and, as demonstrated by the FDA’s priority review program above, implements a number of programs that can have important impact on the development of critically-needed new tools. Given that the US government has long been a leader in supporting R&D for a range of global health diseases and conditions, leadership cannot abandon this legacy now. There are significant gaps in the development of new tools to address neglected conditions, and there is a critical unmet need for tools that address reproductive health, non-communicable disease in low-resource settings, and other health issues. By changing our definition of neglected diseases to include neglected conditions, the US government and other governments, donors, and advocates can make an even greater impact on health worldwide.

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