Tuberculosis is the most neglected disease: Global funding and attention for TB, HIV, malaria, Ebola.

Tuberculosis Is the Most Neglected Disease

Tuberculosis Is the Most Neglected Disease

Health and medicine explained.
March 24 2015 11:33 AM

The Most Neglected Disease

Tuberculosis isn’t history, and it’s much more dangerous than malaria or Ebola.

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Nurses at the Phom Ngac Thach hospital in Ho Chi Minh City, Vietnam, dispense medicine and check on patients. This hospital is the main TB hospital in all of southern Vietnam.

Photo by David Rochkind/Pulitzer Center

Two years ago a colleague and I were awarded a grant for a reporting project on the subject of HIV prevention. We chose our location and pitched the story, and soon two major media outlets were on board to publish our work. One year later we were awarded a subsequent grant to conduct a reporting project on tuberculosis. We pitched the same outlets as before, and waited. Then we pitched more, and waited. And waited. It took several months of emails to editors—many unanswered and some turning into endless threads—to finally place the story.

There could have been many reasons for this. Freelance budgets had dwindled at some publications, and at others, editors familiar with our work had left their posts. But there’s one potential factor that’s hard to ignore: Tuberculosis doesn’t seem to be a topic that many news consumers, or publishers, are overly interested in exploring. Really, do a search on the New York Times’ website and you’ll turn up 10 articles with the word tuberculosis in the headline published over the past 12 months. Then search HIV and AIDS under the same criteria and you’ll get 91 articles.

This is plenty ironic given the story we were actually proposing to do. We set out to explore why TB diagnosis and treatment are critically underfunded relative to the risks the disease actually poses. The World Health Organization says there’s a shortfall of $1.6 billion per year needed to fully treat all patients worldwide. TB remains the world’s second-deadliest disease, after HIV/AIDS, killing 1.5 million people in 2013. Some 3 million cases—one-third of the global total—go undiagnosed. A drug-resistant form of the disease, known as MDR-TB, is spreading, adding to the urgent need to improve diagnosis and treatment efforts.

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The lack of resources is apparent across the board. Take the Global Fund, which receives and distributes donor monies from private foundations and developed nations. It is the world’s largest source of TB financing, and yet the organization has dedicated only 15 percent of its grant money to the disease, compared with 52 percent for HIV and 28 percent for malaria. The numbers aren’t proportional to the threat: TB kills more people than malaria and almost as many as HIV. (Many victims have both HIV and TB).

Then there’s the U.S. government, a major contributor to global efforts to reduce the incidence of infectious disease. In 2013 it spent more than eight times as much on HIV/AIDS programs as it did on TB . The Obama administration is proposing a 19 percent cut to TB funding for fiscal year 2016.

Why is this so? First, consider that TB largely affects the developing world. Many Americans tend to think of it as a disease of the past, because in the United States, it largely is. There were only three cases per 100,000 people in the U.S. in 2013, according to the Centers for Disease Control and Prevention. That’s a far cry from a mortality rate of 194 per 100,000 people in the year 1900, when the disease was known as consumption. As a result, there’s a lack of political will among wealthier donor countries because they don’t experience the disease as a major threat at home. HIV, on the other hand, is more common in developed countries and is perceived as a more urgent danger.

Next, consider the social and economic class of most people with TB. To put it bluntly, they’re usually poor, even by developing-world standards. By contrast, well-known figures in developed countries have been infected with HIV or malaria; George Clooney contracted malaria in 2011. This has encouraged celebrities and activists to help lobby for funding and has attracted support from private donors and lawmakers. Bono, Elton John, and Lady Gaga, for example, have all campaigned against HIV, while Conan O’Brien, David Arquette, and Forest Whitaker have advocated for increased efforts against malaria. There are few comparable voices for tuberculosis.

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Cornelia Hennig, the WHO’s medical officer in Vietnam, sums it up by saying, “TB doesn’t seem to be as attractive or sexy as HIV or malaria.”

Tuberculosis also makes for a more boring news story than a virus such as, say, Ebola. Transmitted by airborne bacteria, TB causes symptoms including chest pain, weight loss, and a heavy cough. Those afflicted with TB usually undergo a slow, painful deterioration that’s unlike the fast and dramatic impact of Ebola. The WHO reported in October that 70 percent of people infected with Ebola in West Africa had died. Even though that figure was later downgraded, such statistics makes for a much more alarming—and, sadly, attention-grabbing—headline than TB, which can be cured if caught in time.

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A man with tuberculosis is treated by doctors in the Intensive Care Unit at Phom Ngac Thach hospital.

Photo by David Rochkind/Pulitzer Center

Yet, for all the hype, the number of Ebola deaths last year in the most afflicted West African countries was about equal to the number of TB deaths in those countries in 2013: 7,900 TB deaths in Guinea, Liberia, and Sierra Leone, compared with 7,905 Ebola deaths by the end of 2014, according to the WHO. In the United States, there was one death from Ebola last year, compared with 536 TB deaths in 2011, the most recent year for which data is available. In any case, the drug-resistant strain MDR-TB also has the statistics to warrant startling headlines: It kills nearly 50 percent of patients, according to Madhukar Pai, director of the global health program at McGill University in Montreal.

If the competition for funding sounds like a global health beauty pageant, well, in a way it is. But please don’t misunderstand; this isn’t meant to slight funding for other diseases. It’s obviously a very good idea to finance efforts to stop the spread of HIV, malaria, and Ebola. Rather, I’m suggesting we examine the process we use to make decisions aimed at reducing disease. Should we be more data-driven in how we decide to allocate resources, focusing more on the total number of people at risk rather than their social, economic, or geographic status? We might create a healthier world if we did.

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This was apparent when photographer David Rochkind and I traveled to Vietnam on our grant to witness the impact that limited funding can have on a country with a high incidence of TB. We found a nation with a decent capacity to treat TB patients, but with a poor ability to prevent and diagnose the disease. In fact, nearly half of Vietnam’s TB cases go undetected, a main reason why the disease causes some 18,000 deaths a year—nearly twice as many as automobile accidents.

A main reason for this was insufficient budget. The Vietnamese government covered less than one-third of the cost of its TB treatment program in 2012, leaving the rest for foreign donors. Overall that year, the country had only 28 percent of the funding the WHO says it needs to adequately fight TB. And yet, the government approved a 30 percent funding cut for TB in the 2014 budget.

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Patients wait for a consultation at the Phom Ngac Thach hospital. This is the largest TB and lung disease hospital in all of southern Vietnam.

Photo by David Rochkind/Pulitzer Center

Budget shortfalls cause deficiencies on the ground—in Vietnam as well as in much of the developing world. For one, not enough is done to educate people about the disease. As a result, those who are infected end up waiting too long before seeking treatment, giving them time to pass the bacteria on to others. Some buy ineffective over-the-counter drugs at local pharmacies rather than proper TB medicine. In the absence of effective treatment, the disease often gets worse, and in some cases people take drugs that can make it harder to diagnose TB.

The lack of funding also means low pay for doctors and nurses, which doesn’t compensate them for the risks of working in highly contagious environments. As a result, hospitals can’t hire enough staff, and neighborhood clinics can’t attract enough community health workers to provide in-home care.

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Globally, the lack of funding affects the willingness of biotech and pharmaceutical companies to fund research aimed at improving diagnosis and treatment technology. Because TB care is largely regarded as unprofitable by the health care industry, research for new drugs is dormant compared with that for other diseases. A vaccine is still administered in many countries because it protects young children from severe forms of TB, but it was developed almost a century ago and is largely ineffective at protecting adults in developing countries. Until the WHO endorsed a new automated technology in 2010, most doctors were still using a basic TB diagnostic test known as smear microscopy, which was invented more than a century ago.

“The word on the street was that TB was a disease of the poor and there wasn’t enough money in it,” says Pai.

And this leads me back to the role played by the news media and its sparse coverage of TB. Sure, Tuesday you’ll see stories about the disease in honor of World TB Day. But according to a 2013 survey by the Kaiser Family Foundation, only 7 percent of Americans polled said they had seen “a lot” in the news about TB, compared with 25 percent for HIV/AIDS and 40 percent for hunger. And TB has certainly never had anywhere near the command of media coverage that Ebola had last year.

True, news is often market-driven. We report on celebrities because people want to follow their lives. But reporters and editors also set the agenda when they decide which stories to cover and publish. If they gave readers and viewers more opportunities to learn about important issues such as tuberculosis, the public might become accustomed to learning about them and, in the long term, actually seek out such news. That, in turn, could influence policymakers and donors to remember, when it comes time to write checks, those dying needlessly of TB.

This story was supported by a grant from the Pulitzer Center on Crisis Reporting.