Last week RESULTS UK and TB Alert, both members of the TB Europe Coalition, travelled to Romania to help facilitate an advocacy training and planning session for the Stop TB Romania Partnership. As part of the visit, Jess Kuehne, our European Health Advocacy Officer, visited a hospital that treats patients with drug-resistant TB. Jess tells her first-hand account of the visit:
What’s it like to look a 20-year-old girl in the face and know that there is a good chance she will not overcome the extremely drug-resistant bacteria that have taken over her lungs? I was able to find out last week when I travelled to Bucharest as part of the TB Europe Coalition to help the Stop TB Romania Partnership develop an advocacy strategy.
RESULTS’ collaboration with NGOs in Romania began last year when we searched for patient stories for our report ‘Tuberculosis: Voices in the fight against the European epidemic’. During that time I was put in touch with Jonathan Stillo, a medical anthropologist who has been researching TB in Romania since 2006 and provided us with Iulian’s powerful story.
During my time in Bucharest, I, along with Jon, Paul Sommerfeld from TB Alert and Misu Stefan from Romanian Angel Appeal, visited a hospital that treats patients with drug-resistant TB. Jon has documented the significant challenges Romania faces in dealing with drug-resistant TB, and my visit to the hospital further demonstrated the plight that TB patients face.
At the hospital, we were given face masks before entering the hospital’s drug-resistant TB ward. The face masks were uncomfortable and made it awkward to speak to patients, not just because they made us look like a little like Bane from Batman, but because the masks also made it impossible to give a friendly smile. Yet our discomfort paled in comparison to the experiences of the patients we were about to meet.
We had the opportunity to speak with two young girls, Katalina and Alexandra*, both in their early 20s, both appearing otherwise healthy, but both battling strains of drug-resistant TB.
Katalina is 21 years old and was recently diagnosed with multidrug-resistant TB (MDR-TB), a form of TB that is resistant to the two most powerful anti-TB drugs. It is very difficult and about 100 times more costly to treat, and treatment can take up to two years. Katalina caught it from her father who recently died from it, and her brother also has MDR-TB. She is currently waiting for test results that will tell her if she has extensively drug-resistant TB (XDR-TB), a form of TB that develops on top of MDR-TB and is resistant to second-line drugs.
Katalina is lucky in that she was diagnosed early, although her prognosis is still unknown. Before being diagnosed she was training to become a hairdresser, but she has had to put her life on hold while she awaits her test results and receives treatment.
Katalina shares a hospital room with 20-year-old Alexandra, who was diagnosed with XDR-TB two years ago. Alexandra was a new case of XDR-TB, meaning that her drug resistance did not develop over time, but rather that her strain was already extensively drug resistant when she was infected. She does not know where she caught it.
Alexandra has been battling XDR-TB for two years now. One of the key drugs she needs for her treatment regimen, linezolid, is not available under Romania’s National TB Programme. Alexandra was told by Romanian doctors that she should order the medication from the internet. She now orders the drug online from India for $100 a month. There is a certain kind of absurdity in someone living in an EU country having to order their medication online from India because Romania does not include it on its national drug registry.
We asked Alexandra if she is hopeful she will be cured. She nodded and smiled weakly.
“She has to be,” the doctor said. “Otherwise…” she trailed off.
The elephant in the room was that Alexandra may very well not beat this disease. It is one thing to read about the difficulties that TB patients face; it was quite another to look a young TB patient in the eye and know there is a very real chance that this girl will soon be dead.
“She should be out with her friends,” Misu said to me after the visit. “If I think back to what I was doing at her age…”
But Alexandra cannot be out with her friends. Instead, her time is consumed with fighting for her life. You wouldn’t know it if you just met her on the street. You wouldn’t know that one of her lungs had to be surgically removed or that extremely resistant bacteria are slowly ravaging her health. You wouldn’t know that 20 years of life might be all Alexandra will ever get to experience.
It was a striking experience – one that reminded me why the work we do is so important.
Worldwide, the treatment success rate for MDR-TB patients is about 60 percent. The treatment success rate for MDR-TB patients in Romania is around 20 percent, meaning eight out of ten MDR-TB patients die. The success rate for XDR-TB is even lower. These rates are appallingly low, especially for a country within the European Union.
Why does Romania only have a 20 percent treatment success rate? The answer lies in politics. It is politics that is keeping an otherwise curable disease a national public health threat. The political situation is a complex one, but essentially there is only one drug company in Romania that produces some TB drugs and, due to political reasons, Romania does not import the rest. This means that many drugs needed to treat MDR and XDR-TB are simply not available in Romania.
On top of necessary drugs not being available, drug stock-outs are common. Even though Romanian legislation states that distributors must be paid within 120 days, it can take up to 200 or 300 days for the drug company to receive payment from the Government, which reduces the drug company’s incentive to provide a consistent drug supply. This means that even for the drugs Romania does produce, doctors cannot always prescribe the necessary regimen because one or more drugs may be missing. This increases the likelihood that patients will develop resistance due to uneven treatment.
Politics and a lack of political will have long kept TB a global killer. This is especially obvious in Romania, where resources to address the problem have long been inadequate. It is time for Romania, along with all EU member states, to take drug-resistant TB seriously and to stop letting it run rampant.