Washington, DC - Jake paused when he entered the room. He pulled out his phone to take a picture of the empty seats facing the empty table where he and his mom, Caryn, will soon sit.
The Irvine, California high school Freshman is dressed in a sharp suit and polka-dot bowtie. A young embodiment of California cool, Jake jokes with his mother as he decides what Instagram filter to apply before sharing the photo.
He is every bit the normal American kid, except for one unapparent difference. Jake has tuberculosis (TB).
He shows no evidence of active TB, the kind that can spread from person to person, but cannot know for sure if the preventative therapy worked. Jake is a perfectly healthy teen who lives with the possibility that he is still infected by TB.
Nearly 1 million children around the world developed TB in 2010, says a new study. The researchers also estimated, for the first time, that more than 30,000 children were infected by a multidrug-resistant form of TB.
Jake and Caryn are in Washington to put a face on the problem of TB and encourage lawmakers to provide support for the research and development of treatments, diagnostic tools and preventative steps against TB. They lobbied with the advocacy organization RESULTS and participated in a briefing at the Senate Visitors Center on Wednesday.
The World Health Organization and activists have warned of the global threat posed by TB, particularly the forms that do not respond to current frontline treatments. Yet TB rarely grabs headlines. (See Humanosphere’s Tom Paulson’s rant about the need to re-brand TB, so its name more accurately captures the threat posed by the infection.)
The ancient disease poses a problem not just in far away places like India and China, but right here in the US. Still, many Americans are not aware that they are at risk. Present estimates indicate that one out of every three people in the world has TB.
Caryn, a school teacher, learned that TB was not a problem elsewhere in the world when Jake’s teacher was discovered to have an active and contagious form of it, in 2009.
“I didn’t know much about TB,” she admits. “I thought it was a poor person’s disease.”
Jake, a 10 year old at the time, and his classmates were systematically tested for the infection. His teacher (unnamed out of respect for her privacy) unknowingly infected 31 students at Anneliese’s School, a private elementary school in Laguna Beach, California. Fortunately, all of the children had the latent form of TB, meaning that they had the infection but it was not making them sick.
Treatment was still needed immediately. Latent TB can activate at any time, but it is most likely to occur in the first two years. Jake sought treatment at Children’s Hospital of Orange County with Dr Felice Adler. Putting the infected children on treatment was the best way to reduce the risk of them developing active TB.
Taking medicine with his classmates was not a big deal. To some extent it felt normal to Jake at the time.
“I knew it was bad,” he said while adding that it did not cause him to worry.
The students who were put on TB drugs (some parents opted not to treat their kids) were initially treated for common TB. A second drug had to be introduced when it was determined that the teacher had multidrug resistant TB (MDR-TB). Due to the slow medical advances against TB and the challenges for patients to adhere to treatment, increasingly drug-resistant forms of TB have emerged.
“The pills were huge,” remembered Jake.
The more resistant the TB the more potent the drugs are needed to eliminate the infection. Side effects can include sickness and vomiting, as well as more rare problems that include hearing loss. Jake’s treatment had to be paused after three and a half months as the result of elevated liver tests. When things normalized, Jake was again given the drugs.
Shortly after resuming treatment, Jake complained to his mother that he was hearing voices. Unaware that auditory and visual hallucinations are a rare side effect from one of the drugs, Caryn was not initially concerned. When Jake started seeing things and ‘freaking out’ a few days later, he was hospitalized and taken off the treatment permanently.
“It was very scary,” added Jake to his mom’s recounting of the story.
No test exists to determine whether the treatment eliminates the infection. Jake’s treatment plan called for him to take the drugs for twelve months, but he did not make it through the first four. Not knowing whether the TB is gone is less a concern for Jake than Caryn. He shrugged and said that it was not something he thinks much about. Caryn admits to worrying about her son and that motivates her activism.
“There were no medicines available specifically for kids. There need to be drugs developed,” she said.
Proposed cuts to spending on TB in the White House fiscal year 2015 budget proposal are being seen as a step backwards. The US made the mistake of cutting TB funding in the 1980s only to see the infection re-surge in the early 1990s. Adler says that the decline in infections taking place right now should not lead to the same mistake occurring again.
“There is still a huge stigma associated with the disease. Maybe more so than AIDS,” she said.
New drugs are now coming out that can reduce the treatment time for people with TB, but more is needed to inform the American public.
“We need better awareness. People need to know that they are at greater risk, so that they can get checked,” said Adler adding that it should mean everyone needs to be screened for TB.
Jake’s story is one of 10,000. That is how many people in the US are found to have TB each year. It only scratches the surface of the problem. An estimated 10 million people in American are living with TB. Of that total, 2.4 million are believed to be living in California today.
Many unknowingly are living with latent TB due to a combination of a lack of public awareness and no present symptoms of the infection. Only 10% of cases will eventually activate, so most of those infected will never know nor be affected by TB. Concerns are for the infections that suddenly activate, making the person sick and contagious.
“If you breathe, you are capable of catching TB from someone else,” said Adler.
In the case of Jake and his elementary school classmates, that is exactly what happened. It is also happening elsewhere in the US. Students at a school in central Florida were exposed to TB through a classmate in November. Then there is the case of extensively drug resistant TB that was diagnosed in Los Angeles earlier this month.
“It can happen to anybody,” warns Caryn.