You sure don’t want to get tuberculosis. You’ll cough a lot, maybe cough up blood, have fever, chills and chest pain. But most cases of the bacterial disease are curable after taking the two first-line drugs for four to six months.
You really don’t want to get multiple-drug resistant TB. That’s a strain of the bacteria that resists the front-line drugs. So nastier drugs and a longer treatment span are required. There are roughly 480,000 cases of MDR-TB, as it’s called, each year; nearly half of the people with MDR-TB die from the disease.
Worst of all is XDR-TB, or extensively drug-resistant tuberculosis. It’s estimated that 9 percent of people with multiple-drug resistant TB are in the XDR category. The treatment is hellish: Two daily infusions of IV drugs through a port implanted in the chest, each session lasting about an hour. This goes on for a year. The drugs have horrible side effects, including nausea, permanent dizziness and permanent hearing loss. People are often depressed at the seeming endlessness of it all.
Because the treatment is so harsh, some countries write XDR-TB patients off, don’t offer them treatment and just leave them to die. That approach heightens the risk that XDR-TB will be passed on to others. (Like regular TB, XDR-TB is spread when a patient coughs, sneezes or spits, sending bacteria into the air.)
Partners In Health, the global health nonprofit, wants to show that XDR-TB is not a death sentence. So the agency is currently treating 55 XDR-TB patients in Lima, Peru. We spoke with Jason Beaubien, NPR’s global health correspondent, who is in Peru reporting on tuberculosis.
How bad are the side effects from treatment?
It knocks some people on their butt. They are exhausted for a year
It must be hard to convince people to take debilitating drugs for so long a period.
Oscar Ramirez, the PIH coordinator here, said to me, “It’s not just about the drugs.” It’s about nurses coming to visit, talking with them. It’s about setting up support groups so these people don’t get so depressed. Some patients just drop out.
And if they drop out?
The TB would come back.
How do people earn a living during treatment?
In a lot of places where you’ve got XDR-TB, there’s not a social safety net. Partners In Health has this microfinance loan program to help patients. One woman is now knitting things and selling them. One woman with multiple drug resistant TB got a loan and opened a corner store.
How could she run a store if she’s contagious?
Soon after you start treatment, you actually aren’t contagious anymore.
I was astounded. I put on a mask when I went to the first XDR-TB patient house, and the nurse was kissing him on the cheek. She said, “Don’t worry. The levels of bacteria once he’s been in treatment are so low that he’s not contagious.”
Can you tell me about some of the people you met?
One woman lives so far out of the capital — six-and-a-half hours away by bus — that PIH is renting a small apartment for her in Lima.
She’s Jenny Tenorio Gallegos. She’s 35 and her kids are 3 ½ and 13. She was really heartbreaking. I asked her, “What’s the worst part of the treatment?” She said, “I miss my children.” She saw them in December and will see them again next month, during holy week.
Were there other patients in a better frame of mind?
I met a guy, Luis, who’s 19. His TB was so bad they had to take out an entire lung. He was just two weeks away from finishing one year of the IV treatment. He’s just about through the worst. Then there’s another year, on pills. He was very upbeat. He had been driving a mototaxi — a three-wheeled jitney cab. He’s hoping next year he’ll be able to go to school and study to be a professional.
What kind of professional?
I asked him. He said, “Anything other than driving taxis!”