To Save Her Husband's Life, A Woman Fights For Access To TB Drugs

Mar 19, 2014
Originally published on March 19, 2014 7:13 pm

One year ago Pavel Rucsineanu was running out of options.

Drug-resistant tuberculosis was ravaging his lungs. And the disease had evolved into an incurable form, doctors said.

It's like an "infectious cancer," Dr. Tetru Alexandriuc said at the time. "We have no other medicines" to treat Pavel, the doctor added. Although he wouldn't say it, the doctor expected TB would kill Pavel.

But Pavel's wife, Oxana, had other ideas.

Oxana once had drug-resistant TB, too. She and Pavel fell in love back in 2008 when they were both patients at a TB hospital in Balti, Moldova. The couple had their first child a few years ago.

Oxana had managed to get herself cured of TB. Then she set out to help her husband. Her strategy: Get Pavel some of the new medicines that she'd heard could attack even the most deadly strains of the bacterium.

In 2012, the U.S. Food and Drug Administration approved the first new TB medicine in 40 years. The drug, called bedaquiline, was developed specifically for treating drug-resistant tuberculosis. But Oxana couldn't get the drug imported to Moldova.

"We wrote a lot of letters to the government," she says. "And the official answer was that there is no legal framework to bring a medical product that is not yet authorized in our country."

So Oxana went after another drug: an antibiotic, called linezolid, which the European Medicines Agency had recently approved for use against TB.

Getting this drug also proved to be a huge challenge. Moldova hadn't yet approved linezolid for use. And the medication was prohibitively expensive.

Pfizer has linezolid patented under the brand name Zyvox. And a one-month supply costs more than $4,000 here in the U.S.

But Oxana was still not deterred. She contacted the nonprofit Treatment Action Group in New York and managed to get a six-month supply of linezolid for Pavel.

"From the time you saw him [a year ago], he's gained 8 kilos [17.6 pounds]," Oxana says. "He's feeling much better. ... He's saying he's cured already. But we know that we have some time in front of us with this TB. We have to follow the treatment to the end. But his results [so far] give us big power to move on."

The treatment with linezolid, however, is no walk in the park. Oxana hasn't yet managed to secure enough of the drug for a full course of treatment, which takes 18 months. And the drug comes with serious side effects. The most common is peripheral neuropathy, a form of nerve damage.

"It is difficult, but not more difficult than other drug-resistant [TB] therapy," Oxana says. "All the drug-resistant therapies are difficult. It took about a month and a half for him to get used to the [side] effects."

Linezolid also has to be taken with a battery of other medicines under the direction of Pavel's doctors. "It's more than 20 pills per day," Oxana says. "Yeah, more than 20 pills per day."

But finally, after years of treatment for tuberculosis, Pavel's health is improving. He's no longer infectious, no longer coughing the potentially lethal bacteria into the air.

And the young father is finally able to move out of the TB hospital and into a small apartment with Oxana and their son.

"Thank God, and thank a lot of people who did a lot for Pavel and my family," Oxana says. "He's right good now. And we are very happy about it."

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ROBERT SIEGEL, HOST:

Tuberculosis is one of the most widespread infections in the developing world. It's also one of the hardest to treat. Millions of people get TB each year and hundreds of thousands of them develop drug resistant strains of the illness. They can take 18 to 24 months to cure, if they're treatable at all.

NPR's Jason Beaubien told us last year about a patient in Moldova. Tuberculosis was ravishing his lungs and he had run out of treatment options. Today, Jason brings us an update.

JASON BEAUBIEN, BYLINE: It was just over a year ago that I met Pavel Rucsineanu in the Moldovan city of Balti. He was living in a crowded TB ward at a local hospital. He'd been on treatment for drug-resistant tuberculosis for years. Pavel's doctors told me that his TB wasn't getting any better. And although they didn't say it directly, they expected TB would kill him.

His wife, Oxana, however, had other ideas.

OXANA RUCSINEANU: Thank God and thank a lot of people who did a lot for Pavel and my family. He's right good now and we are very happy about it.

BEAUBIEN: Oxana had had drug-resistant TB, too. She and Pavel had met as patients in a TB hospital. She'd managed to get completely cured herself and she set out to try to get Pavel access to some of the new medicines that supposedly could attack even the drug resistant strains of the bacteria.

In 2012 the FDA signed off on a new drug called bedaquiline for use against tuberculosis. It was the first new TB medicine to be approved in 40 years. But Oxana couldn't get bedaquiline for Pavel.

RUCSINEANU: Yes, we wrote a lot of letters to the government. And the official answer was that there is no legal framework to bring a medical product which is not yet authorized in our country.

BEAUBIEN: No legal framework to import a drug that might save her husband's life. So instead of bedaquiline, Oxana tried to get Pavel on Linezolid, an antibiotic that had just been approved by the European Medicines Agency for use with TB. This also proved to be a huge challenge. First, Linezolid hadn't been yet approved by Moldovan health authorities. Second, it was prohibitively expensive. A one month supply of Linezolid, 28 pills, retails for more than $4,000 here in the United States.

Working with the Treatment Action Group in New York, Oxana managed to get six months worth of the precious drug donated to Pavel.

RUCSINEANU: From the time you saw him, he gained around eight kilos. He's feeling much better. When I'm asking him he's saying that he's cured already.

(LAUGHTER)

BEAUBIEN: She laughs in part because she knows Pavel is still a long way from being cured. The treatment with Linezolid takes 18 months. The drug has serious side-effects. The most common is nerve damage. And Linezolid has to be taken with a battery of other medicines under the direction of his doctors.

RUCSINEANU: We have now about 10 drugs he takes a day. It's more than 20 pills. Yeah, it's more than 20 pills a day.

BEAUBIEN: But finally, after years of treatment for tuberculosis, Pavel's health is improving. He's no longer infectious, no longer coughing the potentially lethal bacteria into the air. Last month, Pavel finally moved out of the TB hospital and back in with Oxana, to their small Soviet-era apartment in Balti.

Erica Lassem, with the Treatment Action Group in New York, which helped get Pavel onto Linezolid, says Pavel and Oxana's struggle against TB unfortunately is far too common.

ERICA LASSEM: Pavel and Oxana have been really amazing in fighting for themselves. And they've also been relatively well-positioned. Even just the fact that Oxana speaks English, I think, has been a huge help in their case. And that's really not the stories from most patients with TB around the world.

BEAUBIEN: Even though new treatments exist, the barriers to those treatments for people in low and middle-income countries are often insurmountable. She says most TB patients are sick and barely able to fight for their lives, never mind getting involved in battles over international patents or drug importation policies.

LASSEM: To think about getting involved in these really overwhelming, big bureaucratic structures is really difficult to ask of anybody, but particularly someone who's not in good health.

BEAUBIEN: Even for Pavel the battle isn't over. Oxana has managed to get him another two month's worth of Linezolid through the Moldovan Ministry of Health. But if he's to follow the proper treatment protocol, she'll need to find another 10-month supply of the drug from somewhere.

Jason Beaubien, NPR News, Washington. Transcript provided by NPR, Copyright NPR.