Sen. Booker Reintroduces A Bill To Help Eliminate Such Diseases

Last week, Senator Cory Booker (D-NJ) reintroduced legislation aimed at helping to eliminate what he calls “neglected diseases of poverty.” If passed and enacted, The STOP (Study, Treat, Observe, and Prevent) Neglected Diseases of Poverty Act would facilitate research into diagnostics and treatments, and focus on improving disease surveillance systems and educational programs, as well as prevention, diagnosis, and treatment efforts targeting neglected diseases of poverty.

Neglected diseases of poverty are a group of chronic and disabling illnesses, such as Chagas disease, hookworm, and Dengue fever, that primarily impact extremely impoverished people. The diseases are caused by parasites, bacteria, viruses, protozoa, and other pathogens, and disproportionally impact the most vulnerable, which contributes to and exacerbates existing social and health disparities. An estimated 12 million Americans are affected by these debilitating diseases.

Many of these diseases are what scientists and policymakers have been calling neglected tropical diseases (NTDs) since Peter Hotez and colleagues coined the term 20 years ago. NTDs are a heterogeneous group of infections which are highly prevalent in developing regions of Africa, Asia, and the Americas. They include, among others, onchocerciasis (river blindness), African trypanosomiasis, leishmaniasis, cholera, Chagas disease, and Dengue fever.

Diseases are said to be neglected if they are (often) overlooked and therefore underfunded by drug developers, owing to a lack of commercial prospects. Historically, the pharmaceutical industry has allocated less than 0.5 percent of global drug investment to NTDs. Despite attempts in recent years to incentivize R&D for drugs targeting NTDs, new approvals continue to be a trickle compared to what is happening elsewhere in drug development.

NTDs impact more than one in six people worldwide, often the poorest, causing significant mortality and morbidity, including an estimated 35,000 deaths per day worldwide.

Although still far more common in low- and middle-income countries, NTDs are now also frequently detected among underserved populations living in high-income countries such as the U.S., especially, but not exclusively, in Southern states and regions, such as Texas and the Gulf Coast. Here, NTD incidence is rising as a result of pockets of extreme poverty, climate change, urbanization, and human migration.

Peter Hotez, Professor and Dean of the National School of Tropical Medicine at Baylor College of Medicine, is one of the world’s preeminent authorities on the topic of NTDs. He’s researched and written extensively on numerous NTDs. He’s called NTDs “the most important diseases you’ve never heard of.”

No longer rare in the U.S., these diseases are in fact “common, but seldom diagnosed, treated or prevented because they occur almost exclusively in Americans living in extreme poverty,” according to Hotez.

The types of infections often seen in Texas and Gulf Coast areas include extrapulmonary and latent tuberculosis, strongyloidiasis, Chagas disease, and schistosomiasis. They often go underrecognized and therefore underdiagnosed. For example, strongyloides stercoralis is endemic in many parts of the U.S., including the Gulf Coast and Appalachia. However, in spite of the likely large burden of such an endemic disease, no comprehensive national or even large regional seroprevalence studies or screening guidelines exist.

Lack of adequate national disease surveillance is one of the issues Senator Booker’s proposed bill would address. Ideally, Booker’s legislation would provide the necessary tools to address, and ultimately eliminate, a disease like strongyloides stercoralis.

In announcing the bill, Booker said: “People who live in extreme poverty are suffering from diseases that many thought had been eradicated because their communities lack the proper resources. We need to address this challenge by raising awareness and boosting investment in research and monitoring.”

The STOP (Study, Treat, Observe, and Prevent) Neglected Diseases of Poverty Act would:

• Create an Interagency Task Force that provides recommendations to the Secretary of Health and Human Services (HHS) and to Congress to prevent, diagnose, and treat neglected diseases of poverty. When developing recommendations, the task force must consult with states, local communities, scientists, health professionals, and other entities with expertise regarding neglected diseases of poverty.
• Provide resources to states to implement a public health surveillance system to help determine the prevalence and distribution of these illnesses, and to federally qualified health centers to help prevent, diagnose, and treat those who are suffering from or at risk of developing a neglected disease of poverty.
• Require the HHS Secretary to develop and implement educational programs to raise awareness of neglected diseases of poverty, including risk factors and symptoms, among healthcare providers and the public.
• Facilitate research that can help lead to the development of new and affordable diagnostic tools and treatments for neglected diseases of poverty. This would include support for one or more centers of excellence for neglected diseases of poverty.

The bill is endorsed by The National School of Tropical Medicine at Baylor College of Medicine and the Drugs for Neglected Diseases initiative (DNDi).

Affecting a sub-population that is already experiencing health and economic disparities, neglected diseases of poverty perpetuate a vicious cycle for those living in extreme poverty. Booker’s proposed Act constitutes a call to action to tackle this long-standing problem.