Nora Rodriguez has been fighting multidrug-resistant tuberculosis since 2013.
Nora Rodriguez
politics | lauren weber
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"There's no question in my mind that I'd rather be treated for hepatitis C … or HIV" than contract MDR-TB today, said Dr. Randall Reves. "We're stuck where HIV was in 1994."
This Disease Could Kill 75 Million People By 2050
The White House has a plan to combat multidrug-resistant tuberculosis, but it may never get funded.
Nora Rodriguez could not shake her cough.
The 51-year-old Denver teacher had noticed herself slowing down, unable to chase after her grandkids. Climbing stairs became hard. She couldn't catch her breath.
In the late summer of 2013, she went to the local clinic. They checked her out. They told her to take some cough medicine.
She started using the elevator at work. A few months later, during a grocery store run with her granddaughter, she began coughing uncontrollably. She felt like she was suffocating. She went back to the clinic.
They checked her out. They examined her lungs. They gave her pneumonia medicine. She pointed out that she'd had the cough for about a year, but they insisted it was pneumonia.
A few days later, Rodriguez went back to the clinic again, insisting something didn't feel right. She detailed her weight loss, her constant cough, her endless fatigue. They decided to run a few extra tests.
Two days later, on Aug. 18, 2014, the clinic asked Rodriguez to return. The nurse greeted her wearing a face mask.
The nurse said Rodriguez had tuberculosis. Denver Health was expecting her. She was swept off to the hospital, where she underwent extensive tests.
Rodriguez spent the next three months in isolation. She began a daily course of injections and pills that, 14 months later, has yet to end.
"Tuberculosis is the disease we thought HIV would be in the '80s. A disease you could get and die from that was aerosolized and spread through the air," Eric Goosby, the U.N. special envoy on tuberculosis, said at a United Nations Foundation briefing in July. "With TB, you can get it standing in a line when you go to the grocery store or standing in line for the movies."
The highly infectious bacteria that cause TB spread in tiny droplets of saliva and mucous that are expelled when an infected person coughs. They can float in the air for hours.
About one-third of the world's population is infected with tuberculosis. The lucky ones have strong enough immune systems to wall off the TB bacteria, forcing it to lie dormant. The unlucky ones -- about 10 percent of those infected -- come down with a wracking cough, overwhelming weakness, weight loss and persistent fatigue.
If left untreated, two-thirds of people with active TB die. It is the No. 2 single-agent infectious killer in the world (behind HIV/AIDS), according to the World Health Organization, and the No. 1 killer of those infected with HIV/AIDS.
More than 11,000 people died in the most recent Ebola outbreak in less than two years. Some 4,100 people worldwide die of tuberculosis each day. That's about 1.5 million people each year, although many medical professionals think those estimates are too low due to mass underreporting.
The standard TB treatment regimen runs six to nine months and cures 90 percent of patients, including the vast majority of the 10,000 people who contract the disease in the U.S. each year.
But many TB patients outside the Western world aren't treated properly. And TB is constantly evolving.
Rodriguez has a newer, more dangerous form of the disease: multidrug-resistant TB, or MDR-TB, which experts have dubbed "airborne cancer." Standard tuberculosis drugs don't work on MDR-TB, and only about 10 percent of people with MDR-TB worldwide are treated effectively. The other 90 percent spend what remains of their lives spreading the deadly bacteria to people around them.
There were about 480,000 cases of MDR-TB globally in 2013, including about 100 in the United States. Without action, the rates of MDR-TB infection could double in the next fifteen to twenty years, according to a model developed by Dr. David Dowdy, an epidemiologist at Johns Hopkins University.
Seventy-five million additional people will lose their lives over the next 35 years as a result of MDR-TB, a United Kingdom government report predicted. The disease will cost $16.7 trillion over that time frame and reduce global gross domestic product by 0.63 percent by 2050, the report estimated.
That can be prevented: If all the currently diagnosed cases of MDR-TB were treated, Dowdy said, the predicted rise in MDR-TB infections and deaths could be cut by close to 50 percent by 2025.
Unfortunately, "people don't feel that they have the resources they need to fix that problem," said Dowdy. "That's a political problem; that's not a problem of true lack of resources."
In its last three budget proposals, the Obama administration had suggested cutting the U.S. Agency for International Development's TB funding by nearly 20 percent. (Each time, Congress approved budgets that nixed those cuts.) President Barack Obama shifted course in March and called for drastic action to combat antibiotic-resistant diseases, including MDR-TB. Soon the administration is set to unveil a national action plan focused on MDR-TB.
Early drafts of Obama's plan laid out a bold goal of getting "360,000 multidrug-resistant tuberculosis patients globally on treatment over the next five years," according to the Center for Global Health Policy. The center reported that the plan "aims to promote universal MDR-TB treatment, accelerate basic TB research, and strengthen domestic capacity to combat MDR-TB, according to Administration officials who discussed the action plan with stakeholders in July."
Current levels of MDR-TB funding would need to be increased by $112 million next year alone for the U.S. to have a chance of meeting Obama's goals, according to David Bryden, a tuberculosis advocacy officer for Results, a nonprofit advocacy group.
But two similar action plans on MDR-TB, released by the U.S. Centers for Disease Control and Prevention in 1992 and 2009, never received the money they needed, and there's little indication this measure will, either.
"Where's the money?" asked Bryden. "If the president proposes that ambitious plan, it has to be funded. ... The president's name is on the line."
Doctors and nurses in Oakland, California, test respiratory hoods used when they suspect a patient has tuberculosis or the swine flu.
Justin Sullivan/ Getty Images
Stopping the spread of MDR-TB will be next to impossible without more funding for research. The only available treatment for this form of tuberculosis is expensive, takes patients to the brink and doesn't always work.
MDR-TB is resistant to isoniazid and rifampicin, two first-line drugs used to knock out a standard TB infection. So treatment relies instead on a regimen of older drugs, the side effects of which can be horrific -- from depression to permanent hearing damage to drug-induced psychosis. The combination of such side effects with the extended isolation typical of treatment drives some patients to suicide.
The length and cost of effective MDR-TB treatment in the U.S. -- two years and upwards of $100,000 -- makes it exceedingly difficult for patients to complete the regimen. Treatment for those with XDR-TB, extensively drug-resistant tuberculosis, last even longer and is even more costly.
Just one case of MDR-TB can exhaust a local health department's entire budget, said Dr. Philip LoBue, who runs the CDC's Division of Tuberculosis Elimination. That's without considering the price volatility of MDR-TB drugs, which is caused by shortages and manufacturer manipulation.
Even when proper treatment is begun, the chance that an MDR-TB patient walks away cured is less than 50 percent.
"If you'd asked me in 1992, would I rather have AIDS, chronic active hepatitis C or MDR-TB, I'd say give me MDR-TB because that I could be cured from," said Dr. Randall Reves, a professor of medicine and public health at the University of Colorado, Denver, who has treated Rodriguez. "But now, there's no question in my mind that I'd rather be treated for hepatitis C … or HIV with one pill that you take once a day the rest of your life and basically you never have AIDS." With MDR-TB, he said, "we're stuck where HIV was in 1994."
There's little economic incentive to develop treatments for MDR-TB. The vast majority of patients are in low- to middle-income countries where drug companies can't charge as much for drugs. So most of the research relies on U.S. funding, which runs through the CDC and USAID. But there's little political capital to be gained by funding TB science in the U.S.
"The people who develop TB in general, and MDR specifically, are poor. They are immigrants. They are not politically active," Dowdy said. "It's unclear at this time how much political will there is or will be to tackle MDR-TB."
One study suggests that a new MDR-TB treatment called the Bangladesh regimen could cut treatment times from two years to nine months, said Cheri Vincent, chief of the infectious disease division at USAID. But the Bangladesh regimen still uses some older drugs with troubling side effects. To really fix the problem, doctors need an entirely new regimen with drugs developed to fight this form of tuberculosis, Reves said.
"It's really unconscionable that we ask people to go through this," Reves said. "The only thing you can actually promise the person ... is that we're going to make you sick. You're going to feel worse on treatment than you've ever felt with this disease, but we're going to ask you to put up with it because you have to."
The older drugs that are saving Rodriguez have decimated her quality of life.
She can no longer hear her grandchildren running around the house, she has to be administered meds daily by a nurse and she barely overcame a bout with debilitating depression.
"I want my life back," she said. "I want to go back to work and do the things I was able to do before."
Some 100 U.S. cases of MDR-TB might sound like small potatoes. But because tuberculosis is airborne, tuberculosis anywhere is tuberculosis everywhere. About 80 percent of MDR-TB patients in the U.S. were born elsewhere and likely contracted the disease elsewhere. As 10 senators laid out in a recent letter to the president, the threat is "never more than a plane ride away."
"Ultimately we have to recognize that TB is a global problem," said Dowdy, the Johns Hopkins epidemiologist. "Unless we make strides in addressing MDR-TB worldwide, we're not going to be able to completely control MDR-TB in the U.S."
Travelers from Ebola-stricken regions can be screened for fevers, but TB is not so rapidly detected. It can take hours to get back the results from a TB test. Although all foreigners who enter the U.S. on work or immigration visas are supposed to be screened for TB, those on tourist or student visas are not tested. Screening and holding all international travelers would present a massive logistical challenge.
In 2007, an Atlanta lawyer recently diagnosed with MDR-TB defied a CDC warning and flew to Europe to get married. Andrew Speaker then flew to Canada and drove back into the U.S. before turning himself in for forcible isolation.
In June of this year, an Indian woman with XDR-TB managed to fly into the U.S. and travel to three separate states before seeking treatment from an American doctor. She came into contact with hundreds of people along the way. The Indian woman's name has not been released.
"I can imagine that [the most recent case from India] didn't have to read very far on the Internet to figure out she was going to die of TB if she didn't get treatment," Reves said. "And if she's got the money to travel, what do you expect her to do? That's what I would do. I would get on a plane and go someplace I could get treated before infecting my family and having them go through the same thing. And this is the only [case] we've heard about."
CORRECTION: This article previously indicated that the cost of MDR-TB treatment is the same in the U.S. as it is in other countries, which is not the case.
Putting the human face on drug-resistant TB is crucial. "We can go through all these numbers and statistics," the CDC's LoBue said. "But you need to hear from a patient."
As for Rodriguez, she's no longer contagious, so she can leave her house without a mask. But she faces another six months of treatment before she'll be strong enough to return to the profession she loves. She hopes to be back in the classroom in the fall of 2016.
"One more year … I can make it," Rodriguez said through tears. "One more year."