Two Women, One Drug: A Failure Of Compassion In The Global Response To Drug-Resistant Tuberculosis
Fatima and Asa, two women in their early thirties, might never have met if life had been more kind to them both. Asa was finishing nursing school while living a middle-class life with her husband and three young children in a two-story home in the capital city. Fatima was a mother of five who grew up in deep poverty and was still struggling for survival in a one-room shack on the outskirts of town.
But on the drug-resistant tuberculosis (TB) ward of the city chest hospital, they found themselves sharing a room, a disease, and a blossoming friendship. Both had just been diagnosed with extensively drug-resistant TB (XDR-TB), a form of TB that has a five year-survival rate of only 20%. And both of them were utterly terrified.
Today the World Health Organization released a report showing that the epidemic of drug resistant tuberculosis (TB) is even larger than we thought. But, rather than recite statistics, let me tell you the story of these two women I met while working as a TB physician in a “high-burden” country. (For reasons of confidentiality I will leave out their last names and where they live.)
“It is only when our actions brave and bold that we will ever stand a chance to rid the world of TB.”
After just a week on the ward, one thing became painfully clear to Fatima and Asa: when it came to allies in the long and painful journey that comes with XDR-TB, they could only count on one another. Their families had abandoned them. The nurses refused to enter their room, and instead left their medicines and food outside the door. The doctors scolded them for complaining about the side effects associated with the 21 tablets and daily injection they each had to take, including severe nausea and vomiting that left both women doubled over and retching multiple times a day.
Once, after a night of coughing blood, Asa could barely move from her bed. But, as she told me, “I felt someone washing my face with a cool cloth. And when I opened my eyes, I saw it was Fatima. She soothed me with a song I had not heard since I was a little girl.” From that moment on, Fatima and Asa became the closest of friends.
Fatima and Asa are the human beings behind the devastating TB statistics. And from today’s WHO Global TB Report we know there are too many others with similar tales of despair.
The challenge of antibiotic-resistant TB has prompted public health actors—including the United Nations—to issue stern warnings, declaring antimicrobial resistance—especially that found in the airborne bacteria that causes TB—to be a global emergency.
On the pandemic’s front lines, however, there is little evidence of exigency. Nowhere is this more apparent than in failed uptake of the new drugs—bedaquiline and delamanid—for the treatment of the types of TB that are ravaging Asa and Fatima. Without access to these medications, patients with XDR-TB (and the more common multi-drug resistant TB or MDR-TB) have less than a 50% chance of being cured—worse than the odds of winning a coin flip. But years after these treatments have been recommended by the WHO, more than 5 out of 6 people who need these drugs still do not receive them.
Delays at every level, a lack of urgency, and a dearth of funding has meant a needless death sentence for tens of thousands of people every year, in countries where patients and their families often have little voice. And both public health and medical professionals remain, bafflingly, hesitant about the use of these new therapeutic tools, worrying more about potential side effects and the possible development of resistance, even as people sick with XDR-TB look mortality right in the face.
“We desperately need global leaders, including the next US President, to speed up action and confront the DR-TB crisis head on.”
Asa and Fatima know this limited access story first-hand. Because she lived in a certain district in the city, Asa was offered treatment with the new drug bedaquiline through a “pilot project” started in her country more than three years after bedquiline was recommended by the WHO for the treatment of MDR-TB. “They said because I lived in this certain area, I could have access to this treatment, that it would double my chance of being cured, that without it I would likely die. And they said all of this in front of Fatima, who they offered nothing.” That night is was Asa’s turn to do the comforting.
In the twilight hours, the hospital halls are empty and one can easily disappear into the dusk. It is at this time that Asa whispers her secret. It falls quickly from her mouth and cannot be contained by the protective mask she wears: her trembling hands punctuate its importance. “I could not bear to look Fatima in the eye after I started the new medication. She never said anything about it, never asked me about it, but both of us could not believe the situation we were in.” Then Asa hatched a plan. “We shared everything, Fatima and I. And I got two tablets of the new medicine every time they gave it to me. And since there were two of us…well it just broke my heart to think of doing anything otherwise.” This was a desperate but bold act rooted in compassion from a woman who put her own life at risk to help save her friend.
In reflecting on how to make significant changes in the global response to TB—one which the recent WHO Global TB Report shows is clearly failing despite the best efforts of dedicated and talented professionals—there have been multiple “calls to action” focused on what is needed to halt TB’s deadly march: better tools, stronger collaboration, increased funding. We enthusiastically insist on these exact same things year after year, but little changes in the lives of people like Asa and Fatima, and the new WHO report shows the problem is even bigger than we knew.
We desperately need global leaders, including the next US President, to speed up action and confront the DR-TB crisis head on. No more can unfunded “action plans” or “roadmaps” be the primary weapons in our war against this growing plague.
Perhaps the suffering of Asa and Fatima—and their collective response to it—can teach us a valuable lesson about what is missing from our fevered but flagging TB efforts: a sense of deep solidarity with those whose lives have been decimated by this disease. It is only when our minds are set on equality, our hearts full of compassion, and our actions brave and bold that we will ever stand a chance to rid the world of TB.
This post is part of the ‘Fighting Tuberculosis’ series produced by The Huffington Post highlighting the challenges of combatting tuberculosis today. TB is now back in the top ten causes of death globally, and is the world’s leading infectious disease killer.