5 ways to bring about a TB resistance 'paradigm shift'

Multidrug-resistant tuberculosis is a crisis. The World Health Organization reports that by best estimates, 480,000 people contracted multidrug-resistant TB in 2014. Without treatment, MDR-TB is a debilitating, lethal disease. It spreads through the air, meaning that a single instance of MDR-TB can put many people at risk of infection. And yet three-quarters of people with MDR-TB never even receive a diagnosis. Of the few people with MDR-TB who begin treatment, only half are treated successfully.

MDR-TB exists in virtually all countries. What’s more, since it was first described in the medical literature just a decade ago, at least 100 countries have reported cases of extensively drug-resistant TB — an advanced form resistant to medicines reserved solely for treating drug-resistant strains. In the past few years, countries have begun reporting cases of people sick with TB that is resistant to all available medicines.

MDR-TB is one of the most complex illnesses to treat, and one of the most difficult treatments to endure.

While we’re currently testing shorter, simpler treatment options, MDR-TB patients today undergo two years of treatment. Side effects of treatment include liver and nerve damage, psychosis and depression, and permanent hearing loss. Suicides among MDR-TB patients are startlingly common. Hospitalization is long. In the United States, for example, a new study has shown that MDR-TB patients spend an average of 94 days in the hospital, making it one of the most expensive diseases to treat.

As a TB community, we’re waking up to the fact that our response must dramatically change. TB programs must do a much better job treating MDR-TB and providing the quality care that prevents TB from becoming drug-resistant in the first place. The Global Plan to End TB, 2016-2020, calls for a “paradigm shift,” grounded in human rights and gender equity, with strong political support at the highest levels, and with a focus on patients and communities impacted by the disease.

There are things that we can begin doing better now, with the current tools at our disposal, to confront TB resistance. Here are five ways in which we can help bring about this paradigm shift:

1. Implement a comprehensive patient-centered approach to MDR-TB treatment as the standard of care.

A recent study published in PLoS ONE showed that in Gujarat, India, the health system loses contact with one out of every five MDR-TB patients before they complete treatment. In some places, patients are confined to facilities that resemble prisons more than they do hospitals. Media accounts document patient suicides, driven by despair and depression. Providing social, emotional, psychological and nutritional support, throughout the entirety of treatment, is just as important as administering pills and injections. Promising new models for providing comprehensive patient-centered MDR-TB care are being proposed and deserve attention.

2. Cultivate the next generation of clinicians and researchers.

We have a systemic challenge in the TB field. Many TB specialists are nearing retirement, and as a field we lack a succession plan. How do we solve a crisis in the face of a human-resources shortage? MDR-TB is an urgent, complex and global challenge — just the sort of challenge that could appeal to bright young clinicians, allied health professionals and researchers. We need to bring them into the fold.

3. Enroll new political leaders.

We need to enroll more political leaders who are committed to solving the MDR-TB crisis. We must be bold in our advocacy, demanding the necessary resources, policies and political actions. Enrollment goes beyond making demands, however. We must also show heads of state and members of parliaments that they have a stake in this fight, and that ending TB serves their own interests as leaders.

4. Improve outreach to faith leaders and communities of faith.

Communities of faith represent a vastly under-utilized partner in the fight against TB. Faith leaders are in positions of influence and can help to dispel the terrible stigma associated with the disease. Churches, synagogues and mosques can offer networks of volunteers to help provide MDR-TB patients with the social support I described above. There are many lessons to be learned from the collaboration between HIV and AIDS programs, advocates, and the faith community that we can apply to the fight against TB.

5. Educate and mobilize the public.

To diagnose and treat MDR-TB, and to prevent new cases from emerging, we need a massive influx of new resources. We can no longer settle for scarcity. Consider any major disease — smallpox, polio, malaria, HIV and AIDS — none has seen major progress without the broad support of the public.

There’s widespread recognition within the TB community that we need to grow and be less insular. A century ago, the “tuberculosis movement” was a powerful social force that involved large and diverse segments of the public, led by people and communities affected by TB. It’s time we work together to grow our numbers and become a powerful movement again.

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