Tuberculosis is forgotten in the U.S., doctors say
December 09, 2007
She says it’s hard to forget a disease that took a year of her life: a nurse watching her swallow 14 pills a day, needles drawing fluid from her right lung, losing nearly 20 pounds, fatigue.
But it’s better than lymphoma, her first diagnosis in May 2002 – after five weeks that was changed to TB, and it left no time for a life adjustment.
“They called and said, you have TB,” said Mrs. Sawyer, whose only symptom was difficulty breathing. “And I said, well OK, guess I’ll come see you next week. They said, no Mrs. Sawyer, you’re not going anywhere; don’t leave the house and don’t let anyone in.”
At 68, Mrs. Sawyer was an unlikely candidate: a longtime Sunday school teacher in rural East Texas who had spent little time overseas.
But East Texas was just the place for it to happen, she says – she and her husband, Jim, visited the University of Texas Health Science Center at Tyler regularly, where some of the most seasoned TB doctors practice.
Two weeks after her diagnosis, doctors determined Mrs. Sawyer wasn’t contagious. Close friends continued to have her over, “that was brave of them,” she said – but she felt very timid.
“I was embarrassed,” she said. “You think about TB being dirty, you just think there’s a stigma to it, that it’s dirty.”
A friend of a friend visited her one day to share a secret.
“When she was 20 (she’s 65 now), she had TB,” Mrs. Sawyer said. “She told me, ‘I had a 2-year-old then, and then I had to leave. I had to go to the sanatorium.'”
Mrs. Sawyer’s treatment lasted longer than most because of an allergy to some of the antibiotics. She had fluid removed from her lungs four times. But she was determined to get well, she said.
“I had asked the doctors, ‘how many people have y’all lost?'” she said. “They said, seven – it wasn’t foolproof. There’s a chance I might not get over it, but hey, I had it, and I had to take that chance.”
Sawyer said that year she learned more about the disease and more about its prevalence.
“It’s here in East Texas more than you realize,” she said.
On Saturday, Mrs. Sawyer smiled and laughed with ease – she’s back to finishing all 18 holes of her golf game, cooking and singing high notes at church.
Like Mrs. Sawyer, some 14,000 other U.S. residents suffered from TB this year. Experts say though incidence is low, the disease’s potential to become a crisis in the U.S. isn’t leaving anytime soon.
Keeping TB Alive
Texas has the second highest incident rate of tuberculosis in the U.S. and the second highest rate of incident in one city (Houston, with 377 cases in 2006).
But Dr. David Griffith, assistant medical director of HeartLand National TB Center and a UTHCT professor, said it’s not these numbers that are concerning.
It’s the potentially hundreds of cases in Texas no one knows about.
“Along the border, we don’t really know how many cases there are,” he said. “We don’t know how many of those are drug-resistant or multi-drug resistance.”
Griffith and CDC Senior Epidemiologist Dr. Patrick Moonan said that while tuberculosis is mild in the U.S., that’s not the case overseas.
“We are on a little island where TB incidence is declining,” Griffith said. “TB is just raging all around us.”
Mexico is one of those countries, they said. As more foreigners enter our country and seek health care, TB stays relevant to our doctors, our communities.
In the U.S., there were 646 TB deaths in 2005 compared to 19,707 in 1953, according to the CDC.
In contrast, one-third of the world’s population is infected with TB. Its prevalence is highest in Africa, Southern Asia and Eastern Europe, and is often coupled with HIV.
“Half of the cases in the U.S. are in foreign-born individuals,” Griffith said. “As the rest of the world is coming to us with tuberculosis, we’re going to have trouble with it; it’s going to be difficult for us to discover and to manage it.”
But at the Heartland TB Conference held at UTHCT last week, experts shared good news about extensive TB reporting and screening that’s become recently available.
Griffith said the U.S. is working with Mexican health departments in a bi-national TB awareness program.
Also, health departments here must be reminded to open their eyes to TB, Moonan said.
“We don’t want people to forget that we do have homegrown TB that’s been in our country for a long, long time,” Moonan said.
One such strain tends to run through black communities, he said, which make up 45 percent of all U.S.-born cases.
It’s crucial that TB isn’t forgotten, he said.
“In the late ’80s and early ’90s we did forget about TB, and it resurged,” he said, “in such a way that it was harmful.
“More people became susceptible, HIV came along, people mismanaged their diagnosis, giving them partial treatments, and multiple-drug resistant TB emerged.”
Moonan said the nursing shortage is another concern, as they are intrinsic to TB management.
“There’s a certain segment of the nursing population that’s eroding,” he said. “Physicians diagnose and start treatment, but the real care happens with nurses: if you don’t have someone trained to watch a patient take medication for nine months, or trained to interview them about who they’re exposing, that’s where we lose out.”
Technology also needs a boost, but it’s difficult to argue for TB advances when so many other diseases and ailments are taking precedence, he said.
“The majority of the diagnostic tools we use are over 100 years old,” Moonan said.
Some 40 clinicians attended HeartLand’s conference at UTHCT last week, one opportunity for the medical community to stay aware of this quiet, but serious disease, Griffith said.