Two years ago a hospital administrator confirmed that my brother Gary had tuberculosis. Then she told us the bad news.
“It’s worse than we thought,” she said. “There might not even be any medication to help him.”
I didn’t understand. It’s the 21st century, not the 1800s or even early 1900s. We have sophisticated machines and advanced robotics; surely we know how to cure TB? But the doctors at the Southern California hospital where Gary was being treated kept trying new antibiotics — and nothing was working.
Gary’s symptoms had started a few weeks before, with a 103-degree fever. We took him to the emergency department, where he was admitted to the hospital and diagnosed with pneumonia. In the hospital, he continued to lose weight, and his fever would not go down. He looked so frail; I worried he would break if I touched him. It was hard to watch the big brother who had always protected me, who was then only in his mid-30s, waste away in front of me.
Gary was tested for TB, but the results were confusing. First, we were told Gary had TB, then that he didn’t have it, then again that he did. But pneumonia and TB are treatable, so why wasn’t my brother getting better? I demanded to speak with his nurses, his doctors and the county health department.
That is when the hospital health administrator told me there was no hope.
The hospital had isolated Gary in a tiny room with a bed and a bathroom. I had to wear a cloth mask when I visited, and his doctors wore full hazmat-like suits.
“I don’t know how to help you,” one doctor told us. Another apologized. “I’ve just never seen a case like yours,” he said.
Finally, the hospital staff told me that Gary didn’t have just multi-drug-resistant TB: He had “extensively drug-resistant” TB. Later I would learn he had one of the most drug-resistant forms of TB ever diagnosed or treated in the United States, among the most drug-resistant in the world.
Tuberculosis has haunted humans for thousands of years. In the late 1880s, when the bug that causes TB — Mycobacterium tuberculosis — was first identified, the airborne disease was responsible for killing 1 of every 7 people in the United States. The bacteria can attack any part of the body but usually attacks the lungs. It wasn’t until antibiotic treatment was developed in the mid-1900s that the disease was brought under control.
Between 1953 and 1985 the number of new TB cases in the United States dropped by 74 percent. People began to believe that it had been eradicated, and resources were diverted from TB surveillance, treatment and prevention to other areas of health care.
When the HIV/AIDS epidemic hit in the 1980s, TB rates began to increase once again in the United States. TB is the most common opportunistic infection affecting HIV-positive people. Increased federal resources and programs were devoted to those with HIV/AIDS, and by the mid-1990s rates of TB were decreasing again.
In 2014 there were 9,412 reported new cases of TB in the United States — or three new cases per 100,000 people. While this is a 2.2 percent decrease from 2013, it represents the smallest decrease in the rate of the disease in more than a decade. This alone is not cause for alarm, but there are worrying trends — health systems’ limited experience with and institutional knowledge about the disease, the lack of new TB medications, the toxicity of drugs used to treat drug-resistant TB, and the lengthy and disruptive treatments that drug-resistant TB requires. While the overall TB incidence in the United States is declining, the incidence of multi-drug-resistant TB is not.
Worldwide, TB is the No. 1 killer of people with HIV. One-third of the world’s population has latent TB, meaning that they have TB in its dormant state but that the disease has the ability to reactivate.
Individuals with TB have the potential to infect up to 10 to 15 people each over the course of a year. According to the World Health Organization, only 1 in 4 of the estimated 480,000 people who developed multi-drug-resistant TB globally in 2014 were diagnosed and notified. India, China and Russia accounted for more than half of those 480,000 patients.
I grew up in Hollywood, but Gary and my two older sisters grew up in Russia and Armenia. Our family is Armenian and moved to the United States while I was still young. Gary later returned to the former Soviet Union and was living in Russia with his own nuclear family in 2009 when he developed a cough. Doctors there diagnosed pneumonia.
It wasn’t the first time that Gary had been sick. In his 20s he had been diagnosed with ankylosing spondylitis, an inflammatory disease that can result in the spinal vertebrae fusing together, causing a hunched-forward posture. He was given immune-suppression medication, something I now believe may have made him more vulnerable to developing TB.
Gary continued to suffer bouts of pneumonia on and off for the next several years. At the hospitals in the United States, doctors occasionally mentioned “seeing something on his lungs” when they X-rayed them. In the end, they always concluded it was scar tissue from his past bouts of pneumonia and sent him home with more antibiotics.
In December 2013 Gary developed the fever that would not break. But this time, the doctors also tested him for TB. It was the third time he had been to the emergency department for a cough that fall. And the first time he was tested for TB.
Gary, a musician, was divorced by this time, and his son and daughter were living in Russia. It fell largely on me and my sisters to care for him. After much lobbying on my part, Gary was transferred to Olive View–UCLA Medical Center in Los Angeles. Caitlin Reed is the medical director of the inpatient TB unit there, and I truly believe that if it wasn’t for Reed, Gary would be dead right now.
As the incidence of TB in the United States declines, fewer doctors are familiar with the disease and are often late to diagnose it, according to Reed. In 2000, a study from Johns Hopkins University’s Center for Tuberculosis Research Laboratory reported that TB had become rare enough in the United States, and its treatment complicated enough, that doctors in private practice often did not get the treatment right. The Hopkins authors suggested that these doctors were responsible for most of the country’s new drug-resistant cases. A patient faces better outcomes when treated by a public health physician such as Reed, who has seen more cases of the disease.
Reed started testing various antibiotics to see what would work. At one time, Gary was on about a dozen antibiotics at once. The drug that probably saved his life was a new one, bedaquiline, for which the Food and Drug Administration granted accelerated approval in late 2012. Gary began taking bedaquiline in March 2014 and a few months later was deemed “culture negative,” meaning he was no longer contagious.
But his battle was far from won. One of Gary’s lungs was so badly damaged by TB that Reed decided on a drastic measure. Her strategy was to remove the largest burden of the disease by surgically removing the damaged lung and then using drugs to kill the remaining disease in the other lung. A method used before antibiotic treatment was available, lung surgery for TB is not as common as it used to be. John Mitchell, a surgeon at National Jewish Health in Denver who has treated many TB patients, agreed to remove Gary’s lung.
After the surgery, he came back to California to recover, and we had to force him to walk. He felt as if he couldn’t breathe. He’d panic and refuse to move. Gary is out of the hospital now. He uses an oxygen tank constantly and must continue antibiotic treatment for two additional years.
The treatments themselves have taken their toll. One of the antibiotics damaged Gary’s hearing, and if I stand just a few feet away, he can’t hear me unless I yell. Other drugs have brought on a short temper, paranoia and nerve damage in his hands and feet. There is no guarantee that the burning pain he experiences in his limbs will ever lessen or go away. If he continues to take the drug that causes the nerve damage, there’s a chance he could no longer be able to walk. He takes more drugs to ease the nerve pain and slow the progression of the nerve damage. His memory is so bad we don’t trust him to take his medications without supervision. He’s on steroids that give him pimples all over his face and body and discolor his skin.
Yet it’s a “damned if you do, damned if you don’t” situation. If a TB patient doesn’t take his medicine, he dies.
Gary now lives with our father and one of my sisters. He has gone from the attractive teenager whom people approached about being a model to a man who avoids going out to avoid people’s stares.
Excursions are a hassle anyway: There is the loading of oxygen tanks, the packing of medication and the fact that he has to be home at 8 a.m. and 4 p.m. so the health department can watch him take his most important medications — drug resistance could result if he did not take them regularly or interrupted treatment. He wears a mask when he goes to the doctor’s office or hospital, to protect him from germs. He has had several colds, and each time he ends up back in the hospital. The next one could kill him.
There was another option — one we all fought for, including Reed. The drug is called delamanid and was approved by European and Japanese regulators in 2014. It is not yet approved in the United States but is available under the FDA’s expanded access, or “compassionate use,” program. The program requires buy-in from the patient’s physician, the FDA and the drug manufacturer. But when Reed appealed to the Japanese drug manufacturer, Otsuka, to allow her to use delamanid on Gary, it denied her request because the drug had never been tested for use in combination with bedaquiline. Reed had high hopes for using the drugs in combination. Delamanid would have replaced the drug that was causing Gary’s nerve damage. However, it is unknown whether the two drugs are safe to use together; we believe it’s a risk worth taking when the alternative is eventual paralysis.
In early 2015 the pain of Gary’s drug regimen became too much to endure, and he told his doctors he could not bear to take the drug that was causing his nerve damage any longer. They replaced it with another drug, which caused kidney damage. He is on a third drug now, one we hope will work out better, in combination with his other medications. The nerve damage and pain continue, and he still takes medication to combat it, along with very high doses of painkillers.
Gary is almost done with his drug treatment. Following additional testing, delamanid use with bedaquiline is now allowed under limited circumstances through the compassionate-use protocol.
The last effective diagnostic for latent tuberculosis was introduced in 1891; the last vaccine for TB was introduced in 1921; and before the approval of bedaquiline in 2012, a new first-line drug for TB had not been introduced in the United States since 1967.
In the United States the small number of TB cases means that there isn’t much monetary incentive for companies to stock TB drugs, which has resulted in widespread shortages of critical TB medicines and testing supplies. There is also an urgent need for new, more effective vaccines for use in preventing TB infection, disease manifestation and recurrence, internationally and even domestically.
TB has not yet been relegated to the history books. As my family’s story continues to unfold, the disease’s burden is very real, and the next chapters remain uncertain.
Aleksanyan is an actress and chief operating officer of Smart Actors, a company that offers online acting and mentoring sessions. She wrote this essay with Katya Cengel, a freelance writer. This article was excerpted from the Narrative Matters section of the journal Health Affairs and can be read in full at healthaffairs.org.