When Juan Paucar Yareta was diagnosed with tuberculosis, he was living with his son, daughter-in-law, and granddaughter on the fringes of Lima, Peru. The 57-year-old electrician started taking the standard treatment for this airborne infectious disease in 2003, but the disease kept its grip on him and he continued to lose weight. His doctors switched him to different medications. And then switched again. At some point, his tuberculosis had grown resistant to the so-called first-line tuberculosis drugs.
As Juan continued to waste away, he lost his job but continued with the best known cures, swallowing thousands of pills and enduring hundreds of injections. His kidneys failed. The TB did not relent. When a surgeon cut out one third of his right lung, Juan figured that was the end of the punishing treatment.
It wasn’t. His drug-resistant TB came back.
In 2015, the clinic where Juan was receiving care happened to become one of a rare few in the world with access to a new drug, bedaquiline, and to clinicians who knew how to prescribe it. Juan soon began taking the drug. The risk that he’d infect others disappeared immediately. He gained weight. And this year, much to the delight of Juan and his family and physicians, he officially beat TB.
We need more stories like Juan’s — minus the dozen years of fruitless suffering, of course. Unfortunately, tuberculosis remains the most deadly infectious disease in the world, responsible for more deaths than HIV, and even more deaths than automobile accidents. While health officials managed to quash it in cities like New York in the 1950s, tuberculosis kills 1.7 million people each year in India, Nigeria, Peru, and elsewhere.
At the same time, multidrug-resistant tuberculosis like Juan’s is spreading. Why? Underinvestment in new drugs and their deployment, a general lack of ambition, and likely a strong bias to ignore the needs of the rural and urban poor, ethnic minorities, refugees, prisoners, and those who are otherwise marginalized.
History has shown just how indifferent the world can be to diseases that affect primarily low- and middle-income countries. It’s also shown what a difference we can make when indifference is replaced by concern. The cause of AIDS was fairly rapidly discovered and fiercely fought. Polio approached the end-game of eradication. Yet rich nations have largely ignored the poor, often black or brown victims of TB.
Current global investment in the health of people with tuberculosis is $7 billion, roughly half the cost of a single new aircraft carrier. And thanks in part to treatments that cost in the thousands of dollars, new medications for drug-resistant tuberculosis are reaching only a small fraction of the people who need them. The number of new TB cases inches down by less than 2 percent each year.
The tide could turn. The United Nations General Assembly might be best known for causing several days of traffic jams in midtown New York City. But this year, for the first time ever, one of the days will be devoted to tuberculosis. On Wednesday, heads of state and other leaders (Bill Gates is filling the U.S. speaker slot) will make comments, unveil a grand plan to fight TB, and share the funding commitments and other concrete steps that each country will take to fulfill an already-made pledge to beat back TB.
The drugs to fight the disease are also improving. Bedaquiline and another new medicine, delamanid, are the first new TB drugs in over 40 years — yes, 40 years. Thanks largely to government incentives, they were developed, approved for use, and made widely available in 2015. As Juan’s story shows, they can be revolutionary.
To speed the progress to end tuberculosis as soon as possible, we all must play a part. Drug companies must lower prices from thousands of dollars per course of treatment to hundreds or less. That can be done and still allow for a fair profit. Inventing new drugs is not enough. Industry, academic institutions, international funders, and nonprofit organizations must all step up their game and fund the clinical trials that will produce the best use of new tools and products to prevent and treat TB. Governments must follow through on public proclamations. Nonprofits and development agencies must help countries reach their goals. And people like Juan must continue sharing their stories until such stories no longer exist.
We will not stop this global epidemic without an immediate and urgent change in strategy. On Wednesday, let’s listen to Juan and others with multidrug-resistant tuberculosis as they speak at the General Assembly, and then commit to bringing better and safer treatments to the millions of people with TB.
The disease is relentless and cruel, and lately it has been winning. But it doesn’t stand a chance if the world comes together to fight back.
Paul Farmer, M.D., is a cofounder and chief strategist of Partners in Health, a global health organization, professor of global health and social medicine at Harvard Medical School, and chief of the Division of Global Health Equity at Brigham and Women’s Hospital in Boston. Lelio Marmora is executive director of Unitaid, a global health initiative that drives innovation to end pandemics and promote access to the best health solutions.