Natasha takes a whole handful of pills every day — about 25 in total — as part of her treatment course at a tuberculosis clinic in St. Petersburg.
Her battle with the disease has been an uphill struggle, partly because the costly anti-TB medicines she needs have always been hard to come by. This is despite the fact that Russian law requires all patients to have access to high-quality, uninterrupted TB treatment for free.
"Shortages have been a common event in the 1 1/2 years since I was diagnosed," said Natasha, who asked that only her first name be printed because of the sensitivity of the issue. "They are always lacking some sort of medicine. My treatment schedule has been interrupted."
Medicine shortages have become particularly acute recently, with national media reports drawing attention to low stocks in St. Petersburg after activists chained themselves to the railings outside a local health ministry building to protest the scarcity of anti-TB drugs.
The protests were justified, 33-year-old Natasha said, as "in the last few months there have been practically no medicines at all."
When state stocks run dry, Natasha is forced to rely on friends and charities to scrape by, as her illness prevents her from working and her meager state pension only covers eight days' worth of the drug cocktail she takes — isoniazid, ofloxacin, cycloserine and protionamide.
Apart from the financial difficulties caused by the regular shortages, the emotional drag is equally wearing.
"You feel morally uncomfortable. The doctors keep telling me that the medicines will arrive tomorrow. You feel like they're lying to you," she said in a telephone interview.
Although TB patients are repeatedly palmed off with promises that the much-needed medicine will arrive, they are scared to write formal complaints, "because the doctors will hound you," Natasha said.
"They can't admit that there aren't sufficient stocks in their clinics," she added. "Doctors are forced to tick boxes and say everything is in order."
This troubling tale stands in stark contrast to the rosy picture painted by Russian health authorities, who point to declining infection and mortality rates as a sign that the spread of TB has been effectively brought under control.
According to data provided by the Health Ministry, TB cases declined by about 14 percent from 2008 to 2011 — down to 73 new cases per 100,000 people each year. TB mortality rates have also decreased 22 percent over the same period to a rate of 14 deaths per 100,000 people last year.
Falling numbers of new cases and deaths, however, appear to mask the true extent of the country's current disease burden.
Despite an 11 percent drop since 2008, Russia's TB prevalence remains uncharacteristically high for a developed country, with as many as 240,000 people suffering from the airborne infection last year. It remains among the top 22 countries in the world by TB infection.
In addition, cases of multidrug-resistant TB and combined cases of HIV/AIDS and TB are on the rise. Last year, these indicators jumped 7.6 percent and 1.9 percent, respectively.
Russia currently ranks third by the number of multidrug-resistant TB cases worldwide after China and India, countries with vastly larger populations.
These worrying statistics come amid increased federal outlays that have added bite to the national push to eradicate the disease in the country.
State spending on TB has risen dramatically in recent years and is expected to top 2.8 billion rubles ($100 million) in 2012. That includes 2.2 billion rubles for purchasing medicines as part of the priority national health project unveiled by President Vladimir Putin in 2005.
The government has also opened a number of new health centers, made efforts to bring diagnostic equipment up to date and reformed research institutes specializing in TB.
However despite the modernization effort, health experts and local nongovernmental organizations say the authorities have been unresponsive to the difficulties faced by TB sufferers, failing to end recurring medicine shortages and clinging to outdated treatment methods.
State treatment facilities also appear reluctant to disclose information. A request from The Moscow Times to visit a local TB hospital was turned down by the institution's staff, who claimed ministry rules bar such a visit.
Shortages of essential drugs have long been a problem plaguing Russia's TB response and have not been met with an effective, coordinated response from the Health Ministry, NGOs argue.
The website Pereboi.ru, which allows TB and HIV/AIDS patients to anonymously report drug shortages, shows that frequent shortages occur countrywide.
The situation recently sparked a protest in St. Petersburg, where seven TB activists from a group called Patient Control took to the streets on Feb. 28 to speak out against what they saw as the ministry's irresponsible attitude to local patients' health and well-being.
"The lack of TB medicines continues, and local health authorities haven't responded to our written statements," said Alexandra Volgina, a member of Patient Control and manager of St. Petersburg nongovernmental advocacy group EVA.
"So we took part in a demonstration outside the local health ministry building," she said. "They promised us that the medicines would arrive, it would all pass and everything would be OK. But later we saw that this was not true."
"We are now looking at drug tenders for violations," she continued.
When it became clear that the ministry was denying the problem, EVA turned to a major pharmaceutical company for help, asking them to donate a free stock of anti-TB drugs to patients that had been left high and dry.
But the St. Petersburg TB hospital rejected the company's offer. Volgina said that showed "it is more important for health authorities to uphold the official line — which claims that there are no shortages — than help people."
The reason for such shortages, health experts agree, lies not in insufficient funding, but rather in poor planning and logistical issues.
"Last year patients were battling for second-line anti-TB medication, which was severely lacking in the regions. Again, the problem now appears not to be a lack of funds, for the ministry genuinely does have enough," said Anya Sarang, president of the Andrei Rylkov Foundation for Health and Social Justice, a Moscow-based NGO.
"The problem is that health authorities seem incapable of organizing a modern mechanism of drug purchases and deliveries," she said.
Not only does drug scarcity affect patient's health — Natasha says her temperature soars and symptoms reoccur when she doesn't take her medicine — but it can also spur the spread of multidrug-resistant TB, which requires costly treatments with more damaging side effects.
"Stopping and starting treatment is a sure way of relapsing and perhaps developing drug resistance," Peter Davies, secretary of British charity TB Alert, said by e-mail.
Outdated and Inflexible Treatment
Officially, the Health Ministry embraces the World Health Organization's TB guidelines and has adopted internationally recommended strategies to improve the efficiency of treatment.
The quality of care in the country, however, lags behind Western standards and is at times outdated, health experts say.
"Programs providing medical help for TB patients in Russia simply aren't in keeping with today's world," Sarang said.
A major concern for local health-care professionals is authorities' preference for in-patient TB treatment — at times lasting several months. This practice has been long abandoned in Western medical circles, except for multidrug-resistant cases where it is recommended to isolate the patient to prevent further spread of infection.
"This disease is usually treated at home, under the supervision of medical and social workers, … [but] in our country, the whole system has been focused on in-patient care since Soviet times," she said.
Davies agreed that "in-patient care is very outdated."
"It destroys the economic viability of the patient and their relationships. It has to do with politics, often a doctor will be paid by the number of beds he looks after, rather than the number of patients he treats," he said.
Another shortcoming of national treatment strategies is that they are inflexible, NGOs say. Russian health authorities are accused of failing to take on innovative approaches or new treatment models.
In treating TB patients also suffering from drug addiction, for instance, doctors in health-care institutions apply the same standardized approach, even when a patient's treatment course is jeopardized by their habit, which makes long stays in hospital wards near impossible.
"The question of how to treat drug-addicted patients has not yet been solved — among such patients many are infected with tuberculosis, and often multidrug-resistant forms," said Sergei Dugin, a member of the Public Chamber and director of Humanitarian Action, a St. Petersburg NGO that specializes in medical and social programs for high-risk groups.
"The issue is that drug-addicted patients often continue to use drugs on the wards, and they are naturally discharged for breaking the rules," he said. "In many countries this problem is solved with the help of opioid replacement therapy — but in Russia it is banned."
"For such patients, we need a special, multidisciplinary approach, which at present is not applied on a systemic level in national health-care institutions."
A Future Crisis?
Multidrug-resistant TB is a threat on the horizon for many underdeveloped countries, but it's also likely to have an impact on the epidemiological situation in Russia as the number of cases continues to grow.
The Health Ministry puts the current multidrug-resistant TB rate at about 24 cases per 100,000 people, or 14 percent of total TB cases. Although the ministry would not give an estimate of the total number of cases, a simple calculation reveals that as many as 34,000 Russians could be affected.
Rising rates of multidrug-resistant and extensively drug-resistant TB, both of which require more extensive treatment with medication that can be 10 times as expensive "can be explained by inadequate and incomplete treatment — mainly in the 1990s, but also now — and by improved laboratory diagnosis, which allows for better detection of drug-resistant cases," the World Health Organization said in a statement.
"The WHO believes that the further strengthening of evidence-based TB control interventions and the efficient use of resources, in particular forecasting drug needs, are required to prevent and control [multidrug-resistant] and [extensively drug-resistant] TB," the organization wrote.
One particular flashpoint has been in state prisons, where — despite a 300 percent reduction in overall TB prevalence over the past 10 years — drug resistance has been hard to eradicate.
Twenty percent of TB sufferers in the Russian penitentiary system have the multidrug-resistant form and 3.4 percent the extensively drug-resistant form, says Sergei Baryshev, head of the Federal Prison Service's medical team. He estimated that in all, more than 8,000 inmates have one of the two forms.
For Anya Sarang, president of the Andrei Rylkov Foundation, this reservoir of drug-resistant cases could prove crucial in driving the future spread of infection.
"Government institutions, in particular state prisons, are the main sources of TB infection. The unjustified imprisonment of Russian people, especially drug users, leads to prison overcrowding. And it is this that is producing continued TB infection," she said.