Leprosy, a much feared and stigmatized scourge in history, affects a tiny number of Americans, but Congress’s decision to make a modest cut to its annual budget for care and research will have an outsize negative impact, leaders in the field warn.
About 3300 people in the United States need care for leprosy, also known as Hansen disease, which can damage nerves and the eyes, discolor skin, and cause disfigurement if untreated. Although antibiotics can clear the infection with Mycobacterium leprae, the causative bacterium, U.S. clinicians often have difficulty diagnosing this rare and confusing disease. As a result, patients sometimes do not receive proper diagnosis and care until they suffer from paralysis, blindness, clawed hands, and a collapsed nose.
The World Health Organization estimates that about 200,000 people globally still suffer from the disease, with the majority of new cases in Brazil and India. The United States has fewer than 200 newly diagnosed cases a year. Some cases are thought to occur because of transmission from armadillos, which live in southern states and are naturally infected with M. leprae. The exact route of transmission from armadillos to humans is not well understood, but it may have to do with coming in contact with the animals or with soil that’s contaminated with their feces or urine.
The United States has long had the National Hansen’s Disease Program, which is based in Baton Rouge and has a network of 16 clinics across the continental United States and Puerto Rico that treat the disease. (A clinic in Hawaii is its own program and is funded separately.) The clinics regularly send patient samples to the national program, which has a prominent research wing. Administered by the Health Resources and Services Administration (HRSA) in Rockville, Maryland, the national program has, for several years, had a budget of $15.2 million. The new congressional budget reduces it to $13.7 million, a cut of about 10%.
The program was spared a bigger, 23% cut prescribed in President Donald Trump’s proposed budget, which would have reduced HRSA funding to $11.7 million. In anticipation of the deeper cut, HRSA on 1 January closed clinics in six states. In the continental United States, the only remaining Hansen disease clinics are in California, New York, Texas, and Florida. “There are large areas of the country where there’s no expertise,” says David Scollard, a pathologist who ran the national program until 2016. “The research done in this country also is heavily associated with the clinical situation. When you shrink that, you shrink the kind of studies done around this.”
Although a 10% cut may seem minor, Richard Truman, a microbiologist who headed the research branch of the national program until retiring last year, says it will likely impact research—given that patient care has long been the main focus of the program. Truman says the cut “comes completely out of the blue,” and warns that the priority shifts driven by it may threaten funding to the only laboratory colony in the world of armadillos infected with M. leprae. “Understanding the links people have to armadillos and how this bug is transmitted between animals and human beings is an important question,” Truman says. The animal model also has been used to test vaccines, drugs, and pathogenesis of the disease.
HRSA denied a request from Science to interview the current head of the national program, but issued a statement in response to questions about the impact budget cuts might have on research. “The National Hansen’s Disease Programs is currently assessing all services it provides to align resources with the appropriate levels of care and research.”
Truman says the cuts already have shrunk the small community of skilled clinicians who care for patients with Hansen disease, who ultimately will find it more difficult to find quality care. “It can be expensive to treat patients who are not well managed and it can be very harmful to them,” he says. “You have to have some sort of brain trust or cohort of individuals who can translate new technology into the field or you’re going to go back to 1980s.”
*Correction, 2 April, 2:45 p.m.: An earlier version of this article misspelled Richard Truman’s name.
*Correction, 4 April, 12:15 p.m.: This story has been revised to clarify the origin of new cases diagnosed each year in the United States.