Everything Is Tuberculosis: The History and Persistence of Our Deadliest Infection

Despite the cure for TB, infection rates in formerly colonized countries, including Sierra Leone, remained high. Facing long-term economic challenges that stemmed from colonization, many countries were forced to take loans from the newly formed World Bank, which limited their spending power and hindered the development of their respective healthcare systems.

In the 1970s, Czech Dutch doctor Karel Styblo developed a TB treatment strategy in Tanzania to address the economic challenges of the country’s healthcare system. Directly observed therapy (short-course), better known as DOTS, diagnosed patients using the smear microscopy method. Patients who had M. tuberculosis received a standardized treatment in line with the RIPE regimen for up to 12 months. During this time, the patients were “directly observed” by healthcare professionals, requiring the patients to report to a clinic for treatment. The healthcare workers would then consolidate reports to provide data on treatment, cures, and drug supply. DOTS became a cost-effective method for treating TB: It would standardize the cost of treatment, ensure treatment completion through direct observation, and prevent patients from developing drug resistance.

The overwhelming challenge to DOTS is patient noncompliance, which is not restricted to TB treatment. Green relates his own experience of struggling to complete his medication for OCD and depression. Various factors influence a patient’s decision to withdraw from treatment, including difficulty accessing the clinic to the unforeseen interruption of medication supply. In one case, Green spoke to a man who found it difficult to complete DOTS because the stigmatization caused him to experience depression. The man was not encouraged to complete treatment because he continued to feel stigmatized even after his condition improved. Green shared his personal experience of noncompliance to encourage the man to think beyond his fear of stigma.

In another case in Haiti, a man named Robert experienced the challenge of inconsistent medication stocks, which caused him to develop drug resistance by the time he entered an in-patient facility. Even though Robert ostensibly fulfilled every step of DOTS, he died of TB years after his first symptoms manifested. Green suggests that every instance of DOTS’s failure is not an indictment of the individual patient’s compliance with the treatment but an indictment of the system’s limitations. Once again, DOTS administers treatment by control, not by care.

Green acknowledges that DOTS has helped many people at low cost, especially since it was the first treatment strategy of its kind designed to address TB healthcare in low-income countries. Nevertheless, issues like drug resistance and noncompliance expose the flaws of DOTS. It implies a lack of trust in the patient and exacerbates their stigmatization by limiting the means of treatment, forcing people in different situations to adhere to those means. Green reminds the reader of Henry, whose noncompliance was not his choice but his father’s. Through the lens of DOTS, Henry is seen not as a vulnerable teenager navigating a complex situation but simply as a noncompliant patient—reducing his identity to a metric of success or failure rather than acknowledging his humanity.

One of the pervading fears that came with the invention of the RIPE protocol was that the bacteria would evolve to become totally resistant to all existing forms of medication. As of the book’s writing, this is not yet the case, especially considering that M. tuberculosis takes time to replicate. Nevertheless, the fear persists since scientists have been slow in developing new drugs and treatments for TB since the institution of the RIPE protocol.

This is less a matter of research difficulty than it is a matter of economic incentive. Healthcare research industries have found little profit motive to pursue further research in TB treatment. Priority is given to more novel solutions, such as blood pressure control, which will require the bulk of their financial resources to develop. Green suggests that this is an area where philanthropists can help, investing in solutions that remove the inequity of TB treatment in poor countries. Instead, TB treatment remains a solution that only rich countries can afford.

An alternative to pill medication is injectable drugs. At one point, Henry was receiving an injectable treatment of kanamycin, a toxic drug with possible side effects of permanent loss of hearing, kidney failure, and liver damage. A safer medication would have been bedaquiline, though this drug was not accessible to Henry because its price was controlled by drug manufacturer Johnson & Johnson. The injectables were far cheaper, making them the only accessible treatment for Henry. As feared, he developed hearing loss in one ear.

Johnson & Johnson pushed back on the claim that it was gouging the price of bedaquiline. Green discusses the case that an Indian activist with TB, Shreya Tripathi, experienced when she learned about bedaquiline and sued the Indian government for restricting her access to the drug. The government claimed that the drug was too expensive to justify its purchase and that the continued use of bedaquiline would cause TB to form a resistance to it, restricting the drug’s deployment in the future. Shreya argued that the government’s claims were categorically flawed and won the case to make bedaquiline available through the national healthcare system. By the time she won the case, however, Shreya’s lungs had suffered irreparable damage, making it impossible for her to recover even if she received bedaquiline.

Green learned that before Shreya died, she was an avid reader of his fiction work, particularly his 2012 novel The Fault in Our Stars. Green reflects on the loneliness that accompanied him as he wrote that novel, which he compares to the swimming game “Marco Polo.” Hearing that Shreya was one of his readers signaled a response to his work, which validated his effort despite the loneliness he experienced. Green realized that Shreya was also trying to call out to him by speaking truth to power with her experience of TB. Green’s attempt to write that experience in his book is his way of answering her.

Dr. Girum Tefera is introduced as a new physician at Lakka, arriving not long after Green’s first meeting with Henry. Dr. Girum, who was raised in Ethiopia, became interested in TB when he realized the disease’s global impact. He applied to work at Lakka because he felt like he could make a difference in West Africa, where the TB epidemic was especially severe.

One of Dr. Girum’s biggest frustrations was the lack of an effective early diagnosis system in Sierra Leone. To conduct an effective search for active cases, the best diagnosis tool would be a mobile X-ray machine, which has been available in the United States since the 1950s. This would lead to preventative therapy, which successfully reduced transmission rates in Bethel, Alaska, in just one year. Sierra Leone lacks the resources to afford mobile X-ray machines, forcing them to rely on smear microscopy, an ineffective diagnosis method. Patients often return to Lakka when they are too sick to treat.

Another frustration is the low supply of treatment tools. Despite his education in the procedures necessary for treating TB and its symptoms, Dr. Girum was sometimes unable to administer that treatment simply because the tools, instruments, and drugs were not available at Lakka.

Both of these frustrations marked Henry’s case at Lakka. Despite the administration of injectable drugs, Henry’s illness had failed to respond to treatment. Green stresses that things could have been different if Henry had access to better diagnosis tools, like GeneXpert, a rapid molecular test that identifies antibiotic resistance.

Once again, cost inhibited Henry from availing of this test, especially since the company behind GeneXpert, Cepheid, uses a business model similar to razors and razor blades. The cost of one test far exceeds the Sierra Leonean healthcare system’s budget. By contrast, the United States has avoided this problem because mobile X-ray machines were made widely available across the country, allowing the healthcare system to administer effective preventative treatment. Green cites this contrast as an example of the failure to think of healthcare in terms of cost-effectiveness since it prioritizes cost over care.

Green looks at different papers that suggest that investing in TB research actually yields high returns in the long term by increasing the productivity that gets lost to illness and treatment. He stresses, however, that people are more than just their economic value. In spite of the benefits of healthcare investment, Green stresses that Henry is the reason why he cares about TB.

Henry’s symptoms worsened, confirming Dr. Girum’s fears that the injectables were failing. The doctor sought another treatment by consulting colleagues across the globe. Henry’s comorbidities made it necessary to turn to experimental drugs. Isatu remained at Henry’s side throughout every step of the process, bringing him food and talking to family members to raise money for his treatments.

Henry developed a close friendship with an adult patient named Thompson. Thompson encouraged him throughout the emotional devastation of his isolation and the failure of his injectables treatment. In 2020, Thompson died, causing Henry to believe that he would soon die. Henry lost his appetite, lost the spirit that characterized his presence at Lakka, and cried often while thinking about his parents’ lives after his death. The staff at Lakka tried to reassure Henry, but none of them could promise him a cure.

As Dr. Girum continued to work toward finding a novel solution to meet Henry’s needs, Henry’s father lost his patience with the hospital system. One day, Henry’s father demanded that Dr. Girum release Henry and let him live his life. He threatened to remove Henry from the hospital the next day and added that he would beat Dr. Girum if he tried to stop him.

Henry wasn’t sure whether he should trust his father or Dr. Girum, especially as he wondered what opportunities and experiences he was missing out on. Dr. Girum sat awake that night, trying to come up with a plan that would quell the anger of Henry’s father.

The next day, when Henry’s father arrived to take Henry away, Dr. Girum appealed to him to give him more time to prove that their work at Lakka was meaningful. He promised Henry’s father that if the treatment failed, then he could beat Dr. Girum. Henry, now 18, decided that he would remain at Lakka, prompting Henry’s father to leave. Isatu apologized on behalf of her husband, explaining that he had already resigned himself to Henry’s death. She placed her trust in Dr. Girum, who devoted himself to finding a solution, believing that Henry could be “the first of many” (151).