Leprosy: The Orphan Disease

“Do we still have leprosy?”

A businessman in Bombay asked me this when I told him about my research. I had a hard time stifling laughter (totally inappropriate, but I was pretty tired), because for the last six weeks, six days out of the week, all I had seen were cases of leprosy: in government hospitals, skin clinics, VD (venereal disease) clinics, NGOs, and even swanky private establishments.

WHO blister packs of multidrug therapy (MDT) for leprosy - Rifampicin, Clofazimine, Dapsone

Leprosy is almost everywhere and simultaneously nowhere in India. The country carries 1/3 of the global burden of disease. In December 2005, India achieved the WHO’s standard of leprosy elimination (less than 1.0 cases per 10,000), with the goal of eradication in 20-25 years. As of 2009, however, the WHO reports India to have a 1-2.0/10,000 prevalence rate of leprosy. And prevalence is often higher in some areas. So, while the countrywide picture is quite good, urban and rural pockets still carry a large burden of disease.

Bombay supposedly has a low prevalence (0.53/10,000), but as R. Ganapati, former head of the Bombay Leprosy Project, states, in areas of poverty — especially the city’s sprawling slums — the prevalence can be much higher (3-4/10,000).  I did some of my research at the BLP, which is close to Bombay’s large Sion government hospital, in the Sion-Chunabhatti district of the city. The expansive Dharavi slum (made famous and notorious in the movie ‘Slumdog Millionaire’) feeds into this area, and many leprosy patients come fom here to BLP and other NGOs for care.

Water, Water Everywhere, Except Where There’s Disease

I spent the summer in India during the peak of monsoon, the rainy season. Everywhere I went were signs like, “know your Lepto,” or “how to identify dengue before it identifies you.” I jest, but seriously. The rains, anxiously awaited by millions across the subcontinent, represent growth, fertility, the harvest, and, unfortunately, disease.  In an economy that is as much agrarian as IT, and as dependent on weather as independent of time zone, monsoons are a blessing and a public health curse. Malaria incidence, too, was unprecedented this year, with public hospitals erecting overflow tents just to accommodate the hordes of patients flooding their grounds.

The flood has left 20 million homeless, and more than half a million suffering from waterborne and other diseases.

And this was just in areas of “normal,” seasonal rain. Imagine the situation in Pakistan. The floods have been catastrophic, not only for the devastation they have wrought, but also for the illness they bring. Diarrheal diseases have already claimed thousands of lives, and skin and respiratory illnesses follow closely. Waterborne diseases such as typhoid, jaundice, and diarrhea are particularly virulent, but higher incidence of H1N1 and other respiratory viruses also seems to be associated with the moist, cool climate.

As the situation in Pakistan evolves, it is increasingly clear that the flood’s chronic pathology will include large-scale infectious and health concerns, which must be addressed as urgently as any epidemic.

Bureaucracy

A while ago, I was sitting in the office of a major clinician and researcher at one of the largest and most well-regarded hospitals in Mumbai, India. The room was expansive, cool, comfortable. Just outside the door, however, patients sprawled on benches and the floor, sweltering in the heavy heat of the monsoon season.

It wasn’t this radical contrast, however, that troubled me most. I had come to the meeting filled with enthusiasm and ideas. My study, already approved through several institutional IRBs and deemed non-human subjects research, attempted to observe physician practices and standard-of-care in the treatment of previously rare, but increasingly common, leprosy/HIV coinfections. But none of this mattered. I was foreign (I’m Indian-American, but nevertheless…), a woman, and (gasp) attempting to talk about medicine with a male professor. This, apparently, rounded out the trifecta. He barely made eye contact, almost refused to shake my hand, and sneered at the idea that I could do research.

And then came the red tape. He cited organizations I had never heard of — an alphabet soup of acronyms: approval boards, governmental regulatory groups, watchdog associations. He suggested I send applications to three different agencies. When asked how long approval would take, he merely shrugged. I told him that I had never heard of these agencies, nor had other scientists mentioned them. Again, a shrug. In a final effort, I asked if he wanted to look over my study protocol (since it would then become apparent that it required no further approval). This time, a point-blank “No.” I left, frustrated.

This anecdote does not do justice to the many wonderful scientists I’ve met and worked with in India — it merely highlights an issue that might be as troubling as corruption in the developing world, the point Alex raised a while ago. The useless bureaucracy and entangled red tape that go hand in hand with said corruption are just as problematic and obstructive.

All that glitters is…Golden rice?

I don’t want to brand myself the Vitamin A girl, but this stuff is pretty cool. Merci beaucoup to a Mr. Brian Goldner for bringing this up at the Global Blindness Symposium, and many thanks to Ramy El-Diwany for sending me the link.

Vitamin A Deficiency is one of the top 5 causes of blindness globally. It disproportionately affects children aged 1-4 years, and causes a host of symptoms, including night blindness, conjunctival and corneal degeneration, and, ultimately, total blindness. Not to mention a variety of systemic diseases such as infections, diarrhea, measles, and on and on.

Golden rice, fortified with beta carotene (Vitamin A source) and iron

Thanks to the work of our very own Dr. Alfred Sommer, oral Vitamin A supplementation (which costs just 2 cents a capsule) has become an accepted, cost-effective, and life-saving intervention across the world. Unfortunately, some countries still can’t afford large-scale fortification and supplementation programs.

What if there’s a better way? Obviously, an ideal solution to Vitamin A deficiency would also address malnutrition and other micronutrient deficiencies as well.

That’s where the Golden Rice Project comes in. The group’s headline is “Biofortified rice as a contribution to the alleviation of life-threatening micronutrient deficiencies in developing countries.” Through genetic engineering, the rice biosynthesizes beta carotene. First created in 2000 (and disclosed in Science), a new version (Golden Rice 2.0) appeared in 2005, and synthesizes up to 23 times more beta-carotene than the original.

The soft power of global health diplomacy

We think a lot about global health diplomacy from the U.S. or western European perspective — foreign aid, development, and so on. Much of the international health movement has been structured along these lines: top-down interventions created in Geneva, formalized as WHO (and other) guidelines, and implemented by clusters of dedicated professionals. On the other hand, grassroots organizations work with community leaders and health workers in developing countries to build upward. And then there are those renegade MSF people, who get in there and provide the sheer grit, skill, and manpower to save lives, day to day, through wars and natural disasters. All of this has led to some amazing outcomes.

Why, then, this lingering sense that global health efforts represent a black hole of time and money? Foreign aid is never quite enough, workforce restructuring never fully realized (“brain drain”, I would argue, often takes an unfair share of the blame for this; yes, it’s a problem, but aren’t there others?), and a significant portion of the world’s population remains without access to basic nutritional and medical care.