Opinion | Lessons From the Tuberculosis Woman on the Run

Over the last few months, a woman from Tacoma, Washington has been widely featured in local and national media, including the New York Times, for refusing to take medication for active tuberculosis (TB).

In February 2023, a judge issued a civil warrant for her arrest. In early March, after the woman failed to attend yet another hearing, a new warrant was issued to involuntarily detain her for testing and treatment in jail. Surveillance then revealed the fugitive boarding a public bus and entering a local casino. She remained at large until recently, but the saga finally ended late last week when she was arrested and sent to jail where she will receive treatment.

In medicine, we’re all sensitive to confidentiality. Nonetheless, I can’t help wishing that someone had dug a little deeper while covering this story to help us understand her condition and why she was refusing treatment. There are a few obvious questions: Had the patient already infected others? Did she have drug-resistant TB? Had she previously suffered medication side effects? Last, but not least — given TB’s age-old stigma — did she even understand or believe her diagnosis?

The truth is, in 21st century America where this once-widespread plague is now often “out of sight, out of mind,” many doctors lack TB knowledge. On top of this, unique skills are sometimes needed to overcome the obstacles hindering prompt, effective treatment of the world’s leading infectious killer.

A Brief Historical Overview

Although evidence of its ancient origins can be found in Neolithic and pre-Columbian remains, TB truly exploded when urban crowding fueled its respiratory spread. In 19th century Europe, for example, TB killed one in four adults. Sanatoria, fresh air, and weird, brutish surgeries eventually helped somewhat, but it was not until the mid-20th century when newly-discovered drugs truly turned the tide for TB-infected people hanging on by a thread, their lives threatened by fevers, wasting, dramatic hemoptysis, and the disease’s sometimes-lethal spread well beyond the lungs.

Where do things stand today? Despite new challenges posed by HIV co-infection, homelessness, and drug resistance, TB treatment is still a miraculous gift to much of mankind, including right here at home where the rate of active cases has now fallen roughly 20-fold since the 1950s.

At the same time, TB’s incidence varies widely from state to state, which not only affects local funding but also swift, savvy care.

Another notable update? Because reactivated infections are common, the U.S. Preventive Services Task Force recently published an “evidence report” meant to encourage better screening and treatment of our country’s estimated 13 million people with latent TB infection (LTBI) — a condition that can only be discovered by a tuberculin skin test or blood-based assay. Although data suggest only 1 in 10 individuals with LTBI will progress to active disease over their lifetime, the risk is actually much higher in people with special vulnerabilities (diabetes, for example, or the use of potent immunomodulators for rheumatoid arthritis).

Standing back, the global picture is starkly different. WHO estimates that in 2021 there were 10.6 million new TB infections globally, compared to a mere 8,300 newly-diagnosed cases of active disease in the U.S.

Addressing Fears and Facilitating Care

Let’s return to the lady from Tacoma, a place where TB cases are not particularly common. What modern practices might have persuaded her to willingly accept treatment and also protect others?

Directly-observed therapy delivered by skilled personnel — sometimes accompanied by “enablers” and “incentives” (think food and housing vouchers, for example, or even gift cards) — is one key strategy that helps many patients complete protracted courses of TB treatment.

Other sufferers are deathly afraid of quarantine, which is necessary to prevent disease spread. But once a patient is on effective drugs and no longer infectious, isolation is rarely, if ever, prescribed. That said, each state has its own policies and procedures guiding legal orders to detain patients and protect public health.

Most of the time, TB patients are just as concerned as health officials about infecting others. Consider a woman who was briefly my patient in the mid-1980s: With her cavitated lungs and blood-flecked sputum laden with acid-fast bacilli, not only was she highly contagious but her prior care in Asia had been so mismanaged by the sporadic use of single drugs (for effective treatment of active TB, multi-drug combinations are essential) that her M. tuberculosis isolates were completely resistant. We had no more options for cure. As a result, along with her (non-infected) mother, the patient had resigned herself to spending the rest of her life in self-imposed isolation in a small house where she mainly read books and played the piano.

Unsung Heroes

Despite declining cases in the U.S. and the availability of drugs like bedaquiline (Sirturo), delamanid (Deltyba), and pretomanid (Dovprela) for drug-resistant infections, treating TB is no mean feat. Managing complex regimens and monitoring side effects requires diligence and skill — patients can be desperately sick due to HIV and other co-existing illness — and experience is essential.

Thankfully, the work has drawn in truly dedicated experts. This brings me to two specialists at the Lemuel Shattuck Hospital in Boston who have managed many of the toughest cases in Massachusetts for over 30 years.

“How do you gain patients’ trust?” I recently asked pulmonologist Marie Turner, MD.

“Oh, the usual things,” she replied. “Lots of social services. For the homeless, housing and three squares [three square meals]. We make sure patients get their teeth fixed. Substance abuse counselors. And, of course, a very robust HIV program.”

Over the years, Turner’s colleague — infectious diseases specialist Kay McGowan, MD — has also invested untold hours not just juggling drugs and coping with crises but cultivating relationships with her patients, some of whom stayed for months on a dedicated TB ward. What stays with her are the personal rewards. “We’ve met some of the most interesting, lovely people ever from all over the world,” McGowan recently told me. “And we stay in touch with them. I mean, I have patients call me when they have babies.”

Finally, though its treatment can be arduous, there aren’t that many illnesses, the two agree, where patients almost always get better. “They’re grateful,” Turner said. “Yeah. They’re grateful.”

My two cents? When TB patients find smart, sympathetic doctors and other professionals who truly care, it makes all the difference.

I can only hope the woman from Tacoma finds compassionate care in jail.

Claire Panosian Dunavan, MD, is a professor of medicine and infectious diseases at the David Geffen School of Medicine at UCLA and a past-president of the American Society of Tropical Medicine and Hygiene. You can read more of her writing in the “Of Parasites and Plagues” column.