OK: Why this region specifically?

MF: A number of factors play a role in this. First of all, infections are most commonly spread within families. In these countries, several generations traditionally share a home, spending a great deal of time together, breathing the same air. Rooms in these houses are usually poorly ventilated. Since tuberculosis is transmitted primarily via airborne droplet nuclei, people living in such close proximity become infected very easily. If an individual’s immune system has been compromised — for example, as the result of malnourishment — they are at a great risk of developing active tuberculosis. After I left the Caucasus, I worked in Uzbekistan. Sometimes it gets so hot there that people put three layers of curtains over their windows and hang carpets on every wall just to keep it slightly cooler inside. People don’t generally open their windows for ventilation. Under these conditions, if one family member gets TB, they end up infecting everyone else. I saw many such tragic cases. For example, a father had gotten ill and infected his daughters. They had died and he was still alive.

OK: What part of Uzbekistan did you work in?

MF: I worked in Nukus, the capital of Karakalpakstan. It is the poorest part of Uzbekistan. The climate is awful. It’s -40C in the winter, and +40C in the summer. There used to be some industry there, but after the Aral Sea  shoaled, people lost their jobs. The MSF TB program was launched there 1997.

OK: Were you also working as a project coordinator in Uzbekistan?

MF: No, I went to Uzbekistan as a photographer. I spent two weeks there, photographing full-time.

OK: What were you focusing on?

MF: It is impossible to present a complete portrait of TB, which has such broad consequences. Instead, when tackling the subject, I try to contemplate one aspect at a time. In Uzbekistan, I focused on the effects of the disease’s stigmatization. It carries a much bigger stigma there than in Russia. People are more ashamed of tuberculosis than of, say, HIV. TB is perceived as a horrible disgrace. There was one case, for example, when I made a home visit to a boy alongside MSF psychologists.  He had just been discharged from the hospital. He asked us not to come in our car because it had an MSF sticker on it and he was afraid that his neighbors would see. We ended up taking a taxi. This is the kind of stigmatization and subsequent alienation from society that I tried to capture in my photographs. I’m not just showing people getting X-rays and swallowing pills; I try to reveal the emotional side.

"The real TB numbers are practically a state secret"

OK: After Uzbekistan, you went to Ukraine and Russia. What differences did you observe between these countries?

MF: The biggest difference is that in Russia and Ukraine, TB is most often related to HIV. This is a huge problem. HIV weakens the immune system and causes patients to be more susceptible to TB, which often ends up fatal. In hospitals, it is common for staff to report the cause of death as HIV when in reality it's tuberculosis.

 

© Misha Friedman

 

OK: Why do they do that?

MF: To lower the tuberculosis statistics.

OK: What are they trying to accomplish?

MF: The real TB numbers are practically a state secret. Both in Ukraine and in Russia. This is because the governments are attempting to conceal the fact it’s basically an epidemic.

OK: What are there real numbers?

MF: We have the WHO data. For example, last year in Russia, there were 190,000 new cases of tuberculosis and 26,000 fatalities from the disease. The number of new HIV cases was about 50,000, and over 76,000 people died from the disease. We must keep in mind that these are just the reported cases. As any epidemiologist will tell you, the real numbers, at least for HIV, are probably 3-4 times higher than that.

OK: Why are the numbers so high?

MF: As far as I understand, the biggest problem today is drug-resistant tuberculosis (DRT), when patients develop resistances to the drugs used to treat them. About 15-20% of all new cases of tuberculosis are DRT. According to a number of specialists within the CIS, doctors have started treating DRT over the past several years, but they do it so poorly, they end up harming their patients. Especially in prisons and outside of the major cities.

OK: What are these doctors doing wrong?

MF: The laboratory plays an important role in DRT treatment. It’s the lab tests that reveal the specific resistance that a patient has. In Russia, there are hardly any high-quality certified laboratories. In addition to this, treatment is effective only if all necessary drugs are available at the hospital. This is rarely the case. A patient might need four different drugs, but only three of them will be in the pharmacy. The doctor should not start the treatment until all of them are available. But they do it anyway. As a result, not only are these three drugs not working, but the patient develops additional resistances. Recently, I talked to a doctor in Togliatti. She confirmed that this was a common practice, but one she engaged in when she knew that she would never get the missing drug.

OK: What should a doctor do when this happens? Not treat the TB at all?

MF: I’m not here to argue with the doctors, but this approach is alarming. There is a high risk that the patient will not only not get better, but also develop additional resistances and, as a result, die.

OK: And what is the solution, then?

MF: This problem requires a holistic approach. Tuberculosis treatment is the most underpaid area of medicine. When doctors specialize in oncology or emergency surgery, they get patients from a range of economic backgrounds. In Russia, oncologists or surgeons can survive off of their wealthy patients. Tuberculosis on the other hand is a disease of the impoverished, and thus, the doctors are underpaid. Even HIV departments are better off due to the active support of the gay community. Tuberculosis, on the other hand, mainly afflicts the poor, and thus, the doctors are underpaid.

OK: Aren’t there organizations that support them?

MF: There are, but only a small handful. And none of them specialize in tuberculosis. Tuberculosis can’t be eradicated with activism alone.

"They treat them like living corpses"

OK: Which hospital or clinic made the worst impression on you?

MF: The Botkin Hospital for Infectious Diseases in St. Petersburg. It was even worse than the tuberculosis clinic in Togliatti. In St. Petersburg, I was given access to the HIV-TB ward. This is where they treat patients that will not be admitted to the tuberculosis unit. All of them are connected with HIV and TB. Many are former drug addicts. They are difficult patients who constantly disrupt their own treatment. Nobody wants to deal with them.

 

© Misha Friedman

 

At Botkin Hospital, there were 53 patients in the unit, although the official maximum capacity is 40. What really set them them apart from TB patients in the Caucasus, Ukraine, Uzbekistan and even Togliatti was their age. They were all between 25 and 30. It was frightening. There is a stereotype in Russia that a TB patient is an elderly ex-convict, but I saw firsthand that this isn’t true. Moreover, almost one-third of all TB patients are women.

OK: Did you talk to them?

MF: Yes.

GO: What do they say? What do they think about their lives?

MF: They were very aware of what was happening to them: they were dying. They understood that the hospital was their last hope. Once they got into this unit, it was likely to be the end for them. Very few of them had visitors. The general attitude of the medical staff was not encouraging. Across the board, the lack of psychosocial support for TB patients is a common problem in the CIS countries.

GO: What kind of psychological support would the patients benefit from?

MF: It is extremely hard to take medicine every day, especially toxic medicine. If, for example, a person is released from prison, he or she is most likely to have tuberculosis, along with many other diseases, and is simply unable to comply with treatment. Therefore, it is crucial that these patients have a professional they can talk to, and receive the psychological support that they need. Tuberculosis is curable, it can be dealt with, but many TB patients die from it simply because they give up. They end up in hospitals that have not been renovated for decades where they are treated like living corpses because no one cares about them. Many of them also need help restoring the documents necessary for applying for  additional benefits or certain kinds of medications. It is essential to establish a relationship between the penal and medical systems so that sick people released from prison are directed toward the proper medical care. Today, this doesn’t happen because there are no established networks facilitating communication between institutions. Social workers are the missing link. When treating TB, the psychologist is just as important as the doctor, nurse, and lab technician. No such positions are provided for by the Russian Ministry of Health, despite the fact according to experience across the international community,  TB treatment is not effective without psychosocial support.

OK: Why do you think the Russian Ministry of Health ignores these international practices?

MF: It is their position; no matter what is going on in the world, they want to do it their own way — they think they're special. Even in Ukraine, the government has a more progressive approach in terms of their legislation, including their drug policy. They listen to the recommendations of the WHO and the UN. In Russia, the government sees these recommendations as the machinations of the enemy.

"Everything depends on political will"

OK: What needs to change in order to improve the tuberculosis situation?

MF: Everything depends on the political will of the country. Russia needs to start listening closely to what the international community says, because at this point, they are trying to reinvent the wheel. All that I see in Russia today are political games with the drug policy and substitution therapy. In hospitals, the sicker a patient is, the worse the conditions of his ward and the quality of his treatment, and the more he is ignored. This is especially true in tuberculosis units, which have a set budget. In theory, the opposite should be the case.

 

© Misha Friedman

 

The government must establish a systematic approach to treating tuberculosis. And it’s not just about drugs: there has to be infection control, and properly administrated laboratory and psychosocial services. Personnel is another serious issue. Today it is impossible to motivate young doctors and nurses to work at tuberculosis clinics, where they will find low wages, receive no benefits, and be obligated to work with very difficult patients. Where’s the incentive to do that? There is none.

The average age of a TB clinic employee is about 50. It’s nearly impossible to interest somebody approaching retirement age in new developments in treatment. The government needs to motivate medical students to pursue specialization in this field by offering higher salaries. It is a common practice in the rest of the world.

OK: Last year the Global Fund for AIDS, Tuberculosis and Malaria withdrew from Russia. In your opinion, why did this happen at a time when the TB situation in the country has clearly deteriorated?

MF: As far as I understand, it was politically motivated. The Fund officials said that since Russia is a G-20 member, which means that it is not a poor country, it should be able to tackle the problems of TB and HIV on its own. The Russian government then made a large contribution to the Fund, and according to Fund regulations, a donor country can’t also receive financial support. The Fund accepted this money and shut down the grant program for Russia. As a result, hundreds of small NGOs lost their source of financing. Of course, some of these programs will receive money from the Russian government, but they will all be the ‘safe’ ones that do not provoke public debate and are generally in line with the Ministry of Health’s political agenda. For example, organizations advocating for anonymous HIV testing in hospitals. This is something the Ministry is capable of supporting, whereas they would never help fund social work. And if there is no dialogue, if there is no intermediary between TB patients and hospitals, treatment simply won’t happen.

OK: It looks like the Global Fund is not returning to Russia any time soon. Are there other ways to support these programs and to keep psychological care alive?

MF: I believe that NGOs should have an easier time soliciting charitable donations from the Russian business community. Or, for example, that other international organizations should be allowed to run projects similar to what the Global Fund financed. Finally, international and Russian charities should start working directly with local NGOs, which was the case before 2004 when the Global Fund took over.

OK: Do you think that your work as a photographer could make a difference?

MF: A picture does not change anything. It needs to have an agenda. In fact, it’s easier to take pictures with an agenda. Tuberculosis is a very important problem. I would want the people who influence public policy to see my work. That is the driving force behind this project.