Jose caresses three scars at the base of his throat as he talks. He's telling me the story of how he got those scars, three years ago when he had just turned 77 years old. Jose is religious; all around his apartment are crosses and effigies, and there is a shrine to the Virgin Mary on a bookshelf above his bed. Next to that shrine is a set of three photos propped up against the shelf, black and white images of Kafka, Chekhov and the Brontë sisters—a tribute to famous authors who died of tuberculosis. "They've become my saints," Jose says with a smile.
Jose, who asked that his last name not be used, is an avid reader—and a tuberculosis survivor. Now 80 years old, he has the energy of a man two decades younger, with the same fiery eyes of the young ballet dancer he once was, moving from Mexico to Manhattan to be on stage. When he noticed a large vein and two raised nodes on his neck, right underneath the scars he now touches, he went to see his doctors at Kaiser, who were similarly confused. After a biopsy he received the verdict: Tuberculosis had invaded his lymph nodes. He was shocked; like many, he thought the infection only occurred in the lungs.
Soon after the diagnosis, he started the grueling treatment for active tuberculosis, a regimen of four to six pills daily for nine months. The debilitating side effects didn't make it easy to stay on the treatment. During those months Jose had frequent stomach pains, as well as a hospitalization for liver damage—a rare but serious side effect of the drugs. "It was really, really terrible," he says. And now, after surviving the ordeal with the marks on his neck a constant reminder, he is a vocal advocate for TB awareness in the Bay Area, where he now lives.
But sometimes it seems Jose is a lone voice shouting into the void. The apathy of the general public, including the US government, towards TB dismays him. Sure, a particularly nasty multi-drug resistant strain of the disease may garner news coverage for a day or so, but the ordinary voice of TB sufferers in America remains unheard.
There are millions of cases of latent TB in the US, which might bloom into an active infection when the host's immune system is compromised.
March 24th marks World TB Day, 135 years since the Mycobacterium tuberculosis bacteria was discovered, so now is a particularly good time to take stock of the progress—or lack thereof—that we've made in battle against this disease. And let's be clear: We're not winning. After two decades of decreasing numbers of cases, a new report from the CDC shows that the rate of active TB infections in the US has leveled off to about 2.9 cases per 100,000. Though 2016 recorded the lowest number of new TB cases in US history, at 9,287, the overall population rate has stayed virtually the same. Experts warn that unless the rate of decline picks back up, US TB elimination won't happen in this century.
There are also currently millions of cases of latent TB in the US—cases that aren't infectious and don't have any symptoms, but which might bloom into an active infection when the host's immune system is compromised, maybe as the result of another disease or just old age. The vast "reservoir" of these latent cases and the rise of multi-drug resistant and extremely-drug resistant TB overseas pose very real threats to Americans. The current upward trend frustrates American TB advocates, a small but passionate group that often feels painfully unheard. Our complacency, they warn, could lead to the next large tuberculosis outbreak. There's a saying this community has, when it comes to the state of TB in America: Tuberculosis, they say, is "forgotten, but not gone."
Nicknamed "consumption" and "the white plague," TB is estimated to be the deadliest microbial pathogen in human history. And at over 6,000 years old, it is also one of the oldest. It brutally ravaged much of the world in the mid-19th and early 20th centuries, which is when the airy and bucolic American countryside sanatoriums became popular.
Mycobacterium tuberculosis is a bacteria spread through microscopic droplets in the air. It often attacks the respiratory system, although it can localize and become active in any part of the body. Our immune system attempts to protect us by isolating the invading bacteria within nodules, small pockets of cells that look like round spots on an X-ray. If these are left untreated, they can rupture painfully, spilling the bacteria into the rest of the body. Though the bacteria is not as contagious as many viral infections like the flu, once contracted it can lie dormant in the body for years, even decades.
This is why outbreaks are difficult to recognize with TB, says Lee Riley, a tuberculosis expert and head of the infectious disease department at the UC Berkeley School of Public Health: If two people contracted TB at the same time, they might develop the disease years or even decades apart. TB is playing the long game, happy to lie in wait in the background of our lives as other diseases, like Ebola, flare up and then burn themselves out. This devious approach is how it has infected one third of people currently on earth. "It's been the most successful bacteria" in the world, Riley says.
The number of TB infections decreased substantially in the mid-20th century with the creation of new antibiotics and rigorous public health infection control systems. These days, it's easy to forget that such measures are still necessary, but when we become complacent, we also become vulnerable. Take, for example, New York City in the mid-1970s, when the city experienced a fiscal crisis and gutted the public health department in an effort to massively save costs. TB was generally under control then, much like it is now, so the risk seemed minimal. But within three years, the number of TB cases soared, and didn't stop rising for the 15 years that followed. It's a distinctive cycle we've been trapped in for decades, where a lull in TB cases is followed by a sharp increase. Until we eliminate the disease completely, it is a pattern we are bound to repeat.
One night, Stapf sat up in bed and began to cough as liquid pooled in her lungs and rose into her mouth. She flicked on a flashlight: her clothes, her bed and her mosquito netting were covered with blood.
It's hard, though, to care about something if you don't know it's a problem. Unfortunately, TB advocacy in the United States is nearly invisible. Before she went on a trip to Zimbabwe, Liz Stapf, an American student from Oregon who traveled to volunteer at an orphanage in 2008, didn't know that she was at risk for TB. She had the common misconception that you could only get TB if you were HIV positive; so when she lived with a young boy infected with active TB for several months, she felt perfectly safe.
But one winter night early in 2011, after she had left Zimbabwe and was working at a girls' school in Kenya, she sat up in bed and began to cough as liquid pooled in her lungs and rose into her mouth. She spat it out and flicked on a flashlight only to be met with a grisly scene: Her clothes, her bed and her mosquito netting were covered with blood.
While continuing her treatment at home in Portland, Stapf was embarrassed that she hadn't known it was a threat to her in Africa, and that she didn't take any measures to prevent herself, and others, from being exposed. In the US she felt even more lost and alone than she had in Kenya, where at least the disease was commonly acknowledged.
Unlike other major diseases, there is no big advocacy campaign for TB. There is no race for a cure, no ice bucket challenge, no rubber bracelet or famous celebrity spokesperson. Lack of advocacy leads to a lack of awareness and a lack of funding, two things that the TB community sorely need. When Stapf was first diagnosed, there weren't even any Facebook groups for TB patients—which was one of the reasons that she created her own, a group called "TB Support Group—Advice, Sharing and Info about Tuberculosis" that now connects more than 300 TB survivors across the world.
Stapf also participates in a project called TB Photovoice, a website run by health educator and Seattle area resident Teresa Rugg that features stories, pictures and videos from TB survivors. Rugg, whose close friend died of tuberculosis meningitis (when the TB bacteria invades the tissues around the brain and spinal cord), is all too familiar with the lack of interest and resources in the TB community. "We don't have that movement of people," she says, that can create a big campaign. Her office, where she updates and maintains the website, is a corner of her living room. "This is it," she says about her tiny setup, "this is TB advocacy in the United States."
Some people in the TB community are glad that they remain generally out of the spotlight. In America, TB disproportionately affects immigrants and low-income communities, populations that are already stigmatized. Some people are quick to latch on to this statistic, using it to prove that immigrants are currently bringing diseases into our country. But scientists and doctors are quick to point out that tuberculosis can be contracted by anyone. Sure, it affected Jose, who likely contracted the disease as a child in Mexico, but lived in America symptom-free for over half a century before the disease activated. But it also affects hundreds of well-off American-born citizens who happen to have weakened immune systems.
Obama asked Congress for $1.9 billion to combat Zika, a disease that has been linked to two deaths in the continental United States. Funding for tuberculosis, which caused 493 deaths in 2015, dropped to $6.2 million, the lowest in the past seven years.
Advocates like Stapf and Rugg wish there were more public awareness about TB, not only so more people would get tested, but because funding is crucial, too. In February 2016, President Barack Obama asked Congress for $1.9 billion to combat Zika, a disease that has been linked to two deaths in the continental United States. Meanwhile, funding for tuberculosis, which caused 493 US deaths in 2015, has continued to decrease. In 2015, funding dropped to $6.2 million, the lowest in the past seven years. Yet economically it makes sense to fund TB: Researchers have shown that if TB funding and elimination goals had been met in 2014, the United States would have saved $420 million dollars for that year alone—not to mention hundreds of human lives.
Despite the fact that TB has overtaken HIV as the world's deadliest infection, it receives only a fraction of the money. Ed Zuroweste, TB expert, founder of Migrant Clinicians Network and board member of the World Health Organization's Stop TB USA, fumes as he discusses the lack of funding for TB R&D. Zuroweste firmly believes that it would be possible to end TB in the near future—if there were a new vaccine. The only vaccine for tuberculosis was developed in the early 1920s and has barely changed since then. In fact, it's so ineffective that it's not even given in the United States.
In addition to the stall in vaccine development, a lack of funding means there have only been two new medications created to treat TB in the past 30 years, a pace of development that is glacial compared to the normally rapid multi-billion dollar world of drug development. TB patients take between four to six pills a day for six months or more, coupled with daily injections if they are diagnosed with a drug-resistant strain. The newest of the four mainstay pills is from the 1980s. Not all patients have side effects, but those who do feel about the way you'd expect if you were taking a drug old enough to have lived through the Summer of Love. Both Stapf and Jose had severe gastrointestinal problems, and both said that they felt so sick they contemplated stopping treatment. Stapf says she felt so unwell during the first two weeks of treatment, "I thought that I could die."
Better medications might also be one piece of the puzzle to stopping drug-resistant TB. If there were a shorter regimen of medications that had fewer side effects, patients might be more likely to complete the full treatment. Some bacterial infections, like the common streptococcus, can be cured in a 10-day round of relatively painless antibiotics. What if TB could be treated the same way?
In California alone, over two million people have the latent infection. About 10 percent will get the active disease.
Most doctors and scientists aren't concerned about the current rate of TB in America, but they are growing increasingly worried about the future. Despite the disease causing several hundred deaths a year, most Americans are unlikely come in contact with TB in their daily lives—and if they do, we have an arduous, but effective, treatment.
"I think the general public shouldn't be too worried about TB," says John Balmes, a doctor at UCSF who specializes in lung research. But, he adds, "I think the general public should be worried about the reservoir of TB that is in major cities." In California alone, it is estimated that there are over two million people with the latent infection (that's what Balmes means by "the reservoir"). Many of these people will never feel symptoms and can't pass it along while it stays latent, but about 10 percent will get the active disease. Since TB is a disease that capitalizes on a weak immune system, doctors worry about cases of chronic immune-compromising diseases like diabetes rising among the American public, subsequently making more people vulnerable to TB. They also fear a major resurgence of tuberculosis could occur should another epidemic like HIV or the H1N1 flu come around.
The second source of concern is the slow but steady rise of multi-drug resistant TB (MDR TB) and extremely-drug resistant TB (XDR TB). XDR TB is resistant to the two most potent TB drugs, isoniazid and rifampin, and only about 30 to 50 percent of cases of XDR TB are cured.
Unlike Balmes, Zuroweste believes that tuberculosis is a disease that all Americans should be concerned about. "MDR/XDR could cause mass casualties in the United States," he says. Since we live in a world where crossing borders is almost effortless, we will continue to get cases of TB here in America unless it is fully eradicated worldwide. This is possible, says Zuroweste, but it will be difficult. "It could be stopped," he says. "All it takes is political will, and financial resources."