Health
Stephanie, 29, doesn’t know what to say when her brother, who has what his doctor says is the most drug-resistant tuberculosis ever diagnosed in the U.S., asks her what kind of life he is going to have if he can’t walk, use his hands or hear.
“I just say, ‘But you’re alive,’” she says.
Her brother, Gary, is 37 and has extensively drug-resistant tuberculosis (XDR TB), a rare type of multidrug-resistant (MDR) tuberculosis that does not respond to almost any of the drugs used to treat TB. A year ago his family thought he would die. He still could. In November he was admitted to the hospital for a cold, a simple sickness that for Gary could prove deadly. He has only one lung, extreme hearing loss and disabling nerve damage to his hands and feet that makes it painful to walk. He suffers from paranoia and memory loss, and his skin is covered in pimples.
The disease has damaged his lungs; the treatment is destroying his body and mind. Gary and Stephanie requested that their last names not be used because of the stigma associated with the disease.
Once the leading cause of death in the United States, tuberculosis rates in the U.S. have been in decline for decades. Effective drug treatments in the 1940s all but erased tuberculosis from modern U.S. memory, until the mid-1990s, when a resurgence was blamed on AIDS, growing drug resistance and decreased funding. Renewed investment in TB prevention helped reverse the trend, and numbers once again went down, with fewer than 10,000 new cases reported in 2013. Half the cases occur in four states: Texas, New York, Florida and California. Over the last decade the rates of MDR TB have remained relatively constant, at about 1 percent of cases, or 86 in 2012, said Dr. Sundari Mase of the division for tuberculosis elimination at the U.S. Centers for Disease Control and Prevention (CDC).
But that number is only new cases. Because of the long length of treatment, there are twice as many at any given time if you include patients still in treatment, said Dr. Jennifer Flood, president of the National Tuberculosis Controllers Association and chief of the TB control branch at the California Department of Public Health. Even doubled, the number is small, but the threat and effort to make sure it doesn’t spread have more to do with the consequences than the quantity. And with MDR TB, the repercussions are both human and economic. Treatment for MDR TB takes years, not months. It is incredibly costly: about $260,000 (in 2010 dollars) in direct costs plus lost productivity for an average MDR TB patient and $554,000 for an XDR TB patient, according to a 2014 CDC study that looked at cases from 2005 to 2007. Even with treatment, 9 percent of those surveyed in the study died.
Although there is not enough information to make an official comparison, “anecdotally many experts in the field feel that we are seeing greater complexity and greater drug resistance,” said Mase. Dr. Caitlin Reed, medical director of the inpatient TB unit at UCLA’s Olive View Medical Center, where Gary was eventually treated, said his case is the “most drug resistant that’s ever been diagnosed or treated in the United States.”
Gary’s form of XDR TB was almost untreatable. Her colleagues suggested hospice. Instead she put him on as many as 10 to 12 often fairly toxic antibiotics at a time. She sent him to a specialist in Colorado to have a badly damaged lung removed. She urged the Japanese-based Otsuka Pharmaceutical Co. to allow him to take a new drug the company has registered in Europe and Japan but not yet in the United States. It denied her request. Gary is no longer contagious, but his health remains precarious. He could still die of XDR TB.
Reed said a fellow doctor and friend once described TB as “Ebola with wings, because you have a disease that is extremely difficult or potentially untreatable but you can spread it through the air.”
In California, with MDR TB rates hovering at 1 to 2 percent of cases annually and 27 new cases in 2013, doctors are particularly concerned. Santa Barbara County Health Officer Dr. Charity Thoman considers being prepared for drug-resistant TB cases her No. 1 priority, saying it’s “more important than planning for Ebola or anything else I do.”
But doctors as well versed in TB as Thoman, Reed and Flood are not the norm. As TB rates in the U.S. continue to decline, fewer doctors are familiar with the disease. As a result, patients are often initially misdiagnosed, said Reed, placing both the patient and the people with whom the patient interacts at risk.
Before being treated by Reed, Gary received a number of confusing diagnoses. It was not until December 2013, after years of suffering recurrent pneumonia, that he was tested for tuberculosis, said Stephanie. He had it. Then he didn’t have it. Then he had a drug-resistant strain. Then he had a strain so drug-resistant, they couldn’t treat it.
“We’re in the 21st century. It’s not like it’s 18-something or even the 1920s,” she said. “We’ve got machines for freaking machines. They have robots filling orders at Amazon. They can’t figure out a way to find out what type of TB you have quicker?”
Often, they can’t. Not only is diagnosis difficult because of less medical familiarity with the disease, but also treatment and diagnostic technology has been limited by a decline in funding and research. A National TB Controllers Association study revealed that 60 percent of public health TB programs in the U.S. have eliminated staff and 25 percent have restricted crucial activities, including those involved with TB outbreak response. Since 2012, three major drug companies have stopped TB research, leaving only three companies with active TB research programs.
“Research into developing new treatments is sort of woefully inadequate,” said Mike Frick, TB/HIV project officer with Treatment Action Group, an AIDS research group based in New York. “And the evidence of that is in the past 40 years, we’ve only developed two new drugs to treat drug-resistant tuberculosis.”
The limited number of drugs is particularly worrying because as more of these drugs are used around the world, more resistance to them develops, said Flood. The concern is that new drugs will not be developed in time to replace those for which patients develop resistance. The lack of companies focused on developing new drugs and producing current drugs means that normal delays and recalls can lead to shortages, which can in turn lead to drug resistance.
In the last two years the Centers for Disease Control has issued seven alerts regarding shortages of TB treatment drugs and agents used in diagnostic testing, said Mase. According to a TB Controllers Association survey, 21 of 26 health departments treating MDR TB from 2005 to 2010 (representing about 75 percent of the U.S. TB burden) had trouble procuring drugs for MDR TB. The majority, 90 percent, reported resulting treatment delays and lapses, which can lead to patients’ becoming infectious again. In 2013 there was a shortage of a key drug used to treat TB, said Mase, causing programs to switch regimens and start and stop treatments, all of which can lead to the development of MDR TB.
“That is one of the major worries with first- and second-line drug shortages — further acquired drug resistance,” said Mase.
Dr. Caitlin Reed
medical director, UCLA TB unit
For those drugs that are available, more research is needed. In 2009, Dr. Felice Adler treated several elementary school students in Laguna Beach, California, for latent, or nonactive, MDR TB after their teacher developed active MDR TB. With latent TB, a person is infected but is not ill or contagious. About one-third of the world’s people have latent TB; 10 percent will go on to develop the disease. Long and toxic drug courses similar to those used to treat active MDR TB are used to prevent latent MDR TB from becoming active. There are no separate drugs for children, and of the 26 children in Laguna Beach who underwent treatment, only 15 were able to complete it. Some of those who stopped did so because of severe side effects, including hallucinations and stress to the liver.
“We need to have more studies looking at outcomes of treating people with these long courses of antibiotics, specifically kids, because we just don’t have a lot of data,” said Adler, who is director of outpatient services for infectious diseases at Children’s Hospital of Orange County in California. Hearing loss and nerve damage caused by the drugs can be irreversible.
An added concern regarding the length and toxicity of MDR TB treatment is the risk a patient poses to others. Being isolated for months at a time and suffering daily toxic medications for up to two years — often after the symptoms of the disease have dissipated — is a lot to ask of a patient. Sometimes it is too much. In August 2014 a patient with MDR TB in Santa Barbara stopped taking his medications and disappeared. Thoman was concerned enough to release the patient’s name to law enforcement and the media. The drastic measure was necessary, she said, because she considers him “such an enormous public health threat because he had contagious MDR TB.” The patient had already infected multiple people, including children, and had a rare form of MDR TB that was highly infectious. Authorities weren’t able to locate the patient. Normally there is one case of MDR TB in the county every other year, said Thoman. In 2014 it had three.
“MDR TB is a really, really high priority for us,” she said. “I would say it is probably the most high priority communicable disease that we address in our county — that we’ve ever had in our county. And I think that’s true for any county.”
The 100 or so new MDR TB cases cost the country $14 million annually, said David Bryden, a TB advocacy officer with the anti-poverty activist organization Results. On the basis of information from a National Tuberculosis Controllers Association survey and Denver TB expert Dr. Randall Reves’ assessment, Bryden said that states and localities at times struggle with tuberculosis cases and that a large school or hospital outbreak of MDR or XDR TB would overwhelm the system.
“I thought TB was something that happened before, like you read in history books. It annihilated a whole bunch of people, then there was a cure,” said Stephanie. “Apparently it’s very much around, and you don’t know until it hits home.”
For Stephanie, that happened last year when Gary, the big brother who had always looked after her, the one who wouldn’t let her leave the house in Britney Spears–inspired crop tops as a teen, spent months in a hospital. In the beginning, doctors entered his room in space suits, she said. He wasn’t allowed to leave his hospital room, and none of the drugs they were giving him were bringing down his fever. He kept losing weight.
“Everyone had given up on my brother, everyone,” she said.
If he hadn’t been transferred to Reed, she believes, he would have died. Gary is thought to have contracted XDR TB while living in Russia. His two young children still live in Russia, as does his girlfriend. Although Stephanie was raised in Hollywood, her older siblings spent much of their youth in Russia and Armenia, and Gary returned to live there for about five years as an adult. It used to be people thought TB was something that happened “over there” said Adler, and “over here” we were safe.
“But there are so many people that are foreign born in the United States now, so there’s not really like an over there and an over here that we can clearly differentiate anymore,” she said.
TB rates in the U.S. disproportionately affect certain communities, another reason declining numbers do not tell the whole story. Foreign-born people develop TB at a rate 13 times greater than among the U.S. born.
Chia was born in the U.S. He had never traveled outside of the country when he was diagnosed with MDR TB in 2013 while living in a small town in Northern California. Chia is Asian, the ethnic group suffering the highest TB rates in the U.S.
After a month in the hospital Chia, then 20, spent almost five months in home isolation. He had to take a leave of absence from college and his job as a drugstore clerk. No one was allowed to visit his house, and when he left his room, he had to wear a mask. He passed the time playing computer games, watching movies and Skyping with his girlfriend, who stayed faithful to him although they were unable to see each other. It was “really lonely, super boring,” he said.
He said that when he finally got out, people still kept their distance. The health department nurse who oversees his treatment said that is common in their community. Chia asked to use only his first name to protect his identity because of the stigma he faces.
“I had one family that I know — the community stopped calling them to participate in religious ceremonies,” Chia's nurse, May Thao, said. “They felt like they were shunned by the community they had been a part of.”
Chia is now back at school and work but complains of tiredness, daily nausea and numbness in his hands and feet. Health officials administer his drugs daily and will do so until he completes 18 months of treatment in September 2015. They watch for long-term effects. One of the drugs he is taking can cause nerve damage.
“The procedures and the way they treat you and stuff like that is a pain in the butt,” said Chia. “It’s really harsh.”
When he first learned he had TB, he asked, “What’s that?” He had heard of TB but didn’t know what the big deal was. After health officials explained the situation and told him that he had drug-resistant TB, he understood better.
“I was like, ‘Oh, man, that’s pretty bad.’”
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