"We put her on four of the standard drugs for treating active disease - isoniazid, rifampin, pyrazinamide and ethambutol - right away," says Lillian Pirog, RN, clinical nurse specialist for UMDNJ-New Jersey Medical School's National Tuberculosis Center in Newark. "She was great - never missed a day of her medicines." Exactly six months later, the medications were stopped and the teenager was pronounced cured.
Maria is certainly not the only child in the state to be treated for active TB. Pirog recalls two recent cases where teenage boys denied their symptoms for months. Both lost a significant amount of weight. One was short of breath when he went up steps. Both boys responded by pushing themselves to do regular, strenuous workouts because they thought they were out of shape. Both hid the symptoms from their families.
"One of them was a serious student - never missed school,"
says Pirog. "Only when he was at the point where he could no longer
pull himself out of bed one morning, to go to school, did he tell his mother
what was going on. She realized how serious it was and took him right to
the doctor.
"There are so many body and hormonal changes going on during adolescence that kids are confused about what's normal and what's not," observes Pirog, the mother of two teenagers. "This is also a period when kids spend a lot of time with their friends, doing activities out of the house. Parents don't see their kids all that much."
Tuberculosis is still the world's number one infectious killer - but most of us think: "Not in our town, not in our time, not in our children's schools." Parents who would never miss the signs of strep throat, bronchitis or an ear infection, know little or nothing about TB. Many physicians also misdiagnose it.
Why? Simply because TB seemed to disappear after the 1950s, when drugs to treat the disease became available and sanitation, nutrition, and housing and working conditions dramatically improved. But then it seemed to mysteriously reappear several years ago, and few people are really sure what it looks like. Experts - like Lee Reichman, MD, director of the TB Center - say that it may have gone underground, but it never really went away.
That's why most of us are so shocked when it crops up almost next door. Clifton, Hackensack, North Bergen and Jersey City high schools and Bloomfield College - all in New Jersey - have had active cases in the last few months. And there have been many other TB cases in young people. But because there is still a stigma attached to this disease, confidentiality is a high priority among the patients and the doctors who treat them.
No one wants their child to be a pariah. On the other hand, no one wants their child exposed to a pulmonary infection that - if left untreated - can kill.
According to the state's Department of Health, there are 12 to 14 cases
of active TB each year among school-age children in New Jersey, and the
numbers seem to be holding steady. The nine cases that hit the news in January
and February are most likely just a blip in the curve, not indicative of
an overall increase in cases, says Ken Shilkret, tuberculosis program manager
for the department.
In fact, 46 children tested positive in Clifton High, but no additional cases of active disease were identified in this group. Several students at the school were quoted in the Star Ledger as saying the school should be closed immediately and not reopened until the risk of spread had passed. Reichman says the teens panicked unnecessarily.
But they're not alone. There seems to be an enormous amount of confusion about what constitutes TB infection and what is active disease.
What does "testing positive" mean and how is that different from active disease? Who needs to be treated with drugs? How contagious is tuberculosis and who is at risk of catching it? Why are people still dying from an infection that is curable with medication? Isn't there a vaccine against TB and don't all kids get it before entering kindergarten? These are just some of the questions that panic-stricken parents have called in to the TB Center's hotline (1-800-4TB-DOCS).
"While many children and teens test positive," says Pirog, "that doesn't mean they have active disease." The TB Center is following 170 children in Hudson county and 125 in Essex county who take preventive therapy. Pirog also educates school nurses, administrators and teachers about the disease.
According to Reichman, there are 15 million Americans with a positive TB skin test. This indicates that the individual is harboring the bug - Mycobacterium tuberculosis - in his body from a current or prior exposure, but in most cases the immune system keeps it in check.
Generally, the body's defense system will contain the infection. Among healthy individuals who have a positive skin test and get no preventive treatment, about 10 percent will develop active disease sometime during their lives. Of course, that means that more than 90 percent of them will never go on to develop tuberculosis.
One of the major problems, says Reichman, is that many physicians - locally and nationally - are seriously misinformed about TB. They advise those who test positive, but have a negative chest x-ray, not to take preventive drug therapy.
"There are docs saying, 'You're a white, middle class kid. You just have a positive skin test, but you'll never get TB. Don't take the drugs,'" he says. "Doctors have a mind set that all those with active TB are poor, but I have patients who are doctors, lawyers, business chiefs.
"If everyone testing positive appropriately took preventive therapy there would be no active tuberculosis," he states.
The specialist says there are also some physicians who are afraid to give the drugs because they fear toxicity. "But toxicity is rarely, if ever, an issue with kids," Reichman explains. The prescribed course of preventive treatment is six months of isoniazid for adults or six to nine months for children under 16 -one pill a day.
"If you complete the treatment, it's almost as good as never getting infected," he continues. However, anyone who has ever tested positive for TB will always have a positive skin test - whether he has completed treatment or not.
So why are we seeing what looks like more cases of active tuberculosis? According to George McSherry, MD, co-director of pediatrics at the National Tuberculosis Center, an increase in immigration from countries with a high prevalence of TB is having an impact, as well as co-infection with HIV among young adults.
McSherry points out that with a rise in adult cases comes an increase in children who are infected with the bacillus, as well as those who have active disease. "The risk for developing severe TB is much higher for children younger than age four," he states.
In children, 25 percent of active TB is extrapulmonary - outside of the lungs - compared with 15 percent in adults, explains the pediatric specialist. Serious complications of extrapulmonary disease in children include meningitis and miliary TB - in which the tubercle bacilli invade the bloodstream, lodging in organs throughout the body, often causing high fever, lethargy, enlarged lymph nodes and spleen, weight loss and weakness.
A child age 4 or younger who was exposed to an adult with active disease
is automatically placed on preventive therapy, even if the skin test is
negative, because he is at risk of developing the disease quickly, McSherry
says. The child would be checked again at three and six months to see if
he had converted.
The flip side of this is that young children rarely pass the disease on, says the TB specialist. The concentration of bacteria in their lungs is very low and the force of their coughs is too weak to expel many bacteria into the air. But adolescents - many of whom are adult-sized - are far more likely to infect others.
Reichman comments that an adult's chance of being infected is based directly on the amount of air he shares with a person who has active TB. "If you share roughly 10,000 to 15,000 cubic feet of air with this person, you have a 50 percent chance of infection," he says.
Basically, what this means is that you have to spend a lot of time with someone - probably months - in a closed-off area to be at risk. Sharing living space, working in an office, or being in a homeroom or classroom with someone who has active disease that is not being treated may provide the conditions in which spread could occur. On the other hand, taking a subway, bus or plane ride, or sitting in Starbuck's with a coughing, very ill person with active TB puts you at little risk.
Reichman says it's more likely the subway or plane will crash - although there are exceptions even to this rule.
"Let's take the worst case scenario," he continues. "Tommy has active TB. No one recognized it, so he kept on going to school for weeks. Now, his buddy John comes up positive. We take a chest x-ray to see if he has active TB. He does. Will John lose six months of school, end up in the hospital, have a hacking cough for a year, drop 50 pounds?
"No. We start treating him with the medications. He stays home for two weeks. Then he goes back to school and does everything he did before. And he's not infectious. After six months of taking the pills, he's cured."
The specialist recalls a case of TB in a dealer at a casino in Atlantic City about a year ago. He says the State Department of Health representative went down there and "did all the right things" - informing family, friends and co-workers, educating them about the disease, testing close contacts.
"But then the hotline kept ringing with questions from people who were panicked," he says. "'I have reservations for next weekend. Should I cancel my trip to Atlantic City?' 'I'm immunosuppressed. Should I stay away from the casino?' 'I spent several hours there three weeks ago. Should I be tested?'"
"The answer to all three is no," he says. "TB is out there - it's everywhere in the world," Reichman continues. "We see far less of it in the US because we have such effective prevention and treatment programs."
An important mission of these programs is tracing the close contacts of the infected person. "When a child is infected, we look for the adult source - usually in the household," says Pirog. "It could be a parent, a grandparent, a live-in child care provider, a visitor from a foreign country staying with the family. Once we identify the source, we jump right in."
This involves "drawing contact circles" around the person with active disease, from the closest circle - the immediate family or anyone in the household - to the next - friends and those who share a homeroom, classrooms, or work space - to others who may have less frequent contact. Everyone is given the skin test, and those who "convert" move on to the chest x-ray.
One problem facing physicians is that many foreign-born individuals have had a BCG vaccine before coming to this country. Developed in the 1920s, it was thought to confer immunity to tuberculosis, but, according to Reichman, "It's not used here because it doesn't work." However, the vaccine causes two major problems in the US: Anyone who has had the vaccine may have a positive skin test; and both immigrants and many physicians wrongly believe the vaccination confers immunity to this disease.
"Some docs faced with a positive skin test from a child born in another country say, 'You don't need isoniazid because you've had BCG,' or 'Your skin test turned positive because of BCG - you don't need further testing.' Neither one is true," says the TB specialist.
McSherry points out that even though the vaccine provides no protection against pulmonary tuberculosis, it reduces the incidence of the most serious form of tuberculosis in infants with active TB. "Infants do get TB," he says. "Some are born with it - although that's rare. Newborns can contract it from an infected mother in their first months of life."
What can we learn from the recent outbreaks in several of New Jersey's schools?
The first thing is vigilance. With one third of the world's population infected with the bacillus, and travel and immigration at an all-time high, no one can be too surprised when a case crops up close to home. Know the symptoms of active disease.
If you or your child has been exposed, don't panic. TB is preventable. Take preventive therapy when a skin test is positive. If a chest x-ray shows active pulmonary TB, take your medicines for the full six-month-period - even though symptoms will usually disappear after two to four weeks. Stopping medications part way through can produce drug-resistant strains of the disease.
Understand that your old notions about TB - that it resides primarily in developing nations and has no foothold in this country - are wrong. New Jersey, particularly, has a large immigrant population, as well as many international students and visitors. And New Jerseyans are frequent travelers to other countries - sometimes staying abroad for months.
McSherry recalls a trip he made to Ireland a couple of years ago: "There's still a lot of tuberculosis there," he says. "Many people would not expect that."
With eight million people worldwide contracting active TB each year,
it seems there's no place it's not.