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“I do not even know when I got sick,” said Nino Gigauri, a young mother from Tbilisi who worked in the city’s metro system and lived with her 13-year-old son until two years ago, when illness tore her life apart.
“That was when I started having a fever, coughing and general weakness,” Gigauri recalled. “I saw a doctor, who diagnosed me with tuberculosis.”
The story of Nino’s illness and her search for proper care is just one of hundreds of such cases in Georgia, one of the former Soviet countries where tuberculosis is most rife, and where inadequate treatment and the poor availability of drugs force many to seek help abroad – if they can afford to make the expensive journey to France that will save their lives.
Nino’s problems intensified when she was misdiagnosed by local doctors.
“For some reason, they failed to identify the exact type of tuberculosis. I was subjected to the wrong treatment, which resulted in no improvement. Now I am a drug-resistant tuberculosis patient,” she explained.
Her colleagues’ lack of sympathy for her plight added yet more stress, even after she was declared non-contagious.
“I encountered serious problems with my co-workers,” she says. “One of them spat in my face and demanded to have me fired just because I was ill. Thank God, however, it is unlawful to fire people like me.”
The illness also took a toll on Nino’s family, to the point when she had to leave her home and her child for fear of inflecting him too.
“I am constantly depressed,” she says. “I cannot raise or see my child who lives with an elderly grandmother. Nobody wants to live with an aged grandma. Every child wants to be with a young mother. I am renting a basement. I’m continuing my outpatient therapy, enduring all this pain and going through hell, just like other patients.”
A curse from the past
In the developed world, tuberculosis was thought to have been defeated by modern medicine decades ago. But in the 1990s, after the Soviet Union collapsed, the healthcare systems in post-Communist countries like Georgia started to collapse too. Poverty escalated and tuberculosis resurfaced, sometimes becoming resistant to drug treatment.
Some 4,320 people became infected with tuberculosis in Georgia in 2013. Although the amount of people falling ill with the disease has been decreasing slightly over the past few years, the number of those suffering from drug-resistant tuberculosis has been rising. Georgia is now 27th in the list of countries worldwide with the most drug-resistant tuberculosis sufferers.
A total of 386 people became infected with drug-resistant tuberculosis in 2013 – 40 more than in the previous year. Regular tuberculosis can be treated with four potent pharmaceutical products, but drug-resistant and multiple drug-resistant strains of the disease are much harder to treat.
According to official data, only half of drug-resistant tuberculosis patients in Georgia survive.
Tuberculosis is infectious and can be passed on through airborne bacteria – via coughs and sneezes. At the National Tuberculosis Centre in Tbilisi, many patients said they did not know they became infected.
“One day I felt bad out of the blue. I went to the hospital. They took X-rays and diagnosed me with tuberculosis. I have no idea how I got it,” said one of them, a minibus driver who wanted to remain anonymous, wearing a mask to avoid infecting others. “I deal with people on a regular basis. One of the passengers must have been a patient, so he or she might have coughed or something.”
Another patient at the centre, Nino Khudadova, said she realised she was falling ill when she started coughing and feeling weak, and her temperature rose. She is now afraid what will happen next.
“Two people have died since I came here, a father and son. The son was like 25. He died at 4pm yesterday. Of course it scares the life out of me when someone with the same symptoms as you dies next door,” she said.
After undergoing treatment at the Tuberculosis Centre, Nino Gigauri’s doctors decided that she was no longer infectious, so she switched to outpatient treatment. But she suffered debilitating side-effects from the medication she had to take every day.
“No words can describe the horrible side-effects of this medication. It is hell on earth,” she says. “Every part of my body hurts. It lasts a few hours and then subsides. I live in hell day and night.”
Doctors however blame some of their patients, saying that they often terminate their treatment, resulting in the further spread of tuberculosis. Patients, however, argue that the medication is sometimes physically unbearable.
“I would take 18 pills at a time. I would vomit and then fall asleep for four hours. I could not turn over. I simply had no strength,” said Anzor Gurapashvili, another patient at the National Tuberculosis Centre. “I could not take it anymore. I did not want to commit suicide, so I decided to quit treatment. Then I got worse. Water accumulated in my left lung. They drained about a litre and a half, then I felt a bit better. I kept taking medication for six months, never missing a dose, yet I still tested positive.”
Twenty per cent of tuberculosis patients stopped having treatment in 2008, 27 per cent in 2010, and 34 per cent in 2011, say officials at the centre. Most of them are contagious, and each infects between ten and 15 people on average, experts believe.
Besides the centre in the capital Tbilisi, there are 64 units in eight regions across Georgia where tuberculosis patients receive medication. None of them has any support service – a social worker or a psychologist to assist patients and give them information so that they complete their treatment and no longer pose an infection threat.
As well as people who quit treatment themselves, sometimes the centre also discharges infectious patients, like Anzor Gurapashvili.
“They kicked me out eight times,” Gurapashvili said. “I held a protest rally one time. I held a banner that read ‘The healthcare system has crucified me’. They kicked me out for expressing myself.”
The deputy director of the centre, Nana Kiria, admitted that some patients had been discharged against their will, but insisted the punishment was justified.
“What would you do when patients disappear for three days?” she asked. “They are discharged for insubordination. On another occasion, patients physically assaulted personnel on duty. What were we supposed to do?”
For three hours each day, contagious patients are also free to leave the premises if they want.
“Between 4pm and 7pm, I can go for a walk and visit my neighbourhood, said Nina Khudadova. “Now I am a contagious patient, right? How many people can I infect by walking out of here?”
A place to die
The treatment of drug-resistant tuberculosis patients lasts between 24 and 32 weeks. Those who do not respond to medication after having completed the course are discharged. They have the option to transfer to a palliative care hospice in the Georgian spa town of Abastumani, but most of them opt to go home.
“We refer all of them to Abastumani, but they can refuse. They are not legally bound to go there and remain in isolation,” said Kiria, admitting that those who do go home pose a threat to the general public: “Of course they are contagious.”
Palliative care focuses on ensuring comfort for and relieving the suffering of patients with incurable diseases near the end of their lives and at death. Studio Monitor found four such hospices in Abastumani.
“I have been here two years now. Experts say that I have no results, no progress, so how can I be happy?” said a patient at one of the hospices. “In my opinion, these medications are ineffective, and they are impossible to handle, with vomiting, loss of appetite, and many other side effects.”
“Everyone in the hospice calls us dead men walking,” said another. “We may die at any moment.”
For years, tuberculosis patients have been demanding new medications which are used in Europe. Protest rallies are frequently held at the Tuberculosis Centre – at a recent one, sufferers held up a banner with the slogan: “We want to live.”
But the centre’s management has consistently rejected their demands, saying that the medications tested in France which the patients want are not yet properly licensed for use anywhere else.
“We are talking about experimental medications, delamanide and TMC 207. It has been suggested to introduce them in Georgia. We are being very cautious, however, waiting for the final registration of these drugs with relevant American and European agencies,” Deputy Healthcare Minister Mariam Jashi told Georgian media in 2013.
“We will not make the final decision until it is confirmed that taking these medications is safe for patients and their family members,” Jashi insisted.
But when she made this statement on February 3, 2013, the US Food and Drug Administration had already registered these medications a month earlier, according to the World Health Organisation (WHO) website.
The WHO also issued guidelines as early as 2008, saying that TMC 207, one of the drugs demanded by Georgian tuberculosis sufferers, is recommended to be used in the case of patients with no significant results after treatment and those suffering from drug-resistant strains of TB.
The reason why patients in Georgia aren’t allowed these drugs seems to be more connected with bureaucratic failings than their expense. Nana Kiria, the deputy director of the National Tuberculosis Centre, said that she and her director had written to the French authorities several times – “but we never received an answer”.
While the Georgian authorities remain cautious about importing new medications, over the past three years, some 86 patients completed treatment without any positive results, while 161 patients have died during treatment. The centre has no information about the number of patients who died after quitting the programme. Had the medications been imported, perhaps the health of at least some of the patients could have been improved – and some might not have died
Studio Monitor filmed Zura Muzashvili, one of the patients who spent months having treatment at the Tuberculosis Centre, but to no avail: soon afterwards, he died of the disease at the age of 24. A week later, his sister also fell victim to tuberculosis.
New medications will however be delivered to the Tuberculosis Centre in the autumn of 2014 after Medecins Sans Frontieres and the Global Fund to Fight AIDS, Tuberculosis and Malaria purchased them for Georgian patients.
“Individual assessments of drug-resistant tuberculosis patients and of those with no tangible results after treatment – as well as treatment with new medications – will be ensured before the end of this year,” Deputy Healthcare Minister Jashi promised.
But the new medications will not be available for every patient, only for drug-resistant tuberculosis patients who have no tangible results after treatment.
Hope lies far away
A piece of graffiti on wall of the Tuberculosis Centre reads: “We will defeat tuberculosis in France.” It’s a sign of how intensely some Georgian patients long for French medical treatment.
“I will always dream about it until they import French medication and the relevant treatment,” said one female patient who wanted to remain anonymous. “As you know, people in Georgia cannot afford treatment in France.”
Nino Gigauri echoed her words: “I have dreams about going to France for treatment.”
“I know a few people who would have been long dead if they stayed here,” added a third patient.
Studio Monitor visited a hospital in Paris where about 15 Georgian patients were having treatment. They agreed that the medical care they were getting in France was far superior to anything available in their home country.
“France granted me a new life,” said one of them, Guguli Abashidze. “I learned I was ill in 1996. I turned to doctors and started treatment. It proved successful at first, but later everything changed. I was a drug-resistant TB patient. Doctors said no medication worked on me anymore. Therefore, they terminated my treatment, saying that I had to wait for death in the palliative care unit. They could not help me.”
“I insisted and kept pestering the doctors, so it turned out that there was actually an alternative, in Europe,” she continued. “Some advised me against going there, saying that the treatment was the same in Georgia. Eight months after I came here, I was attending French classes, and this means it’s a success.”
“Everyone who transferred from the palliative care unit [in Georgia] to Europe has survived. I can say that with absolute certainty,” said another Georgian patient in Paris, Shota Liparteliani.
Liparteliani had been having treatment in Georgia for 18 months when his doctors said there was nothing more they could do for him.
“I said I would go abroad. The doctor replied that they do not work miracles abroad either. The next day, I traveled to Abastumani. I knew they were about to open the palliative care unit there. I did not want to infect my family, so I decided to wait for death there,” he recalled.
“I spent 10 years in the hospital and 18 people, all of them young, died in my room in the meantime. In February 2012, I got a hold of some money with the help of my relatives and friends, and came here via Poland,” he continued. “After I started taking medication here, I already felt better. I felt stronger, and I started to walk more actively. After I had surgery, I felt much, much better.”
Another patient, Giorgi Guraspashvili, sold his apartment in Georgia in order to travel to Paris for treatment. “I have nowhere to live when I go back to Georgia, yet I do not regret it,” he said. “Most importantly, I survived. I was reborn.”
Mukhran Chigladze went to France after spending two years in palliative care in Abastumani. “I was told I was hopeless, about to die,” he said. “There were 16 of us at the palliative care unit. Two of us made it here, and we have survived, while everyone else died.”
Georgian patients in France believe that the introduction of new medications alone will not solve the problem. Lab tests, diagnostics, the management of side effects, surgery, support services and social assistance are also essential parts of what makes the French treatment superior.
The combination of medications prescribed to patients in France is also much smaller, and the side effects are much easier to handle.
“Actually, I take only three medications and I already have a great result, while in Georgia, I had to take a handful of pills,” said Guraspashvili. “It was simply impossible to handle so many drugs, so once you take them, you run to the bathroom and throw up. It did not make any sense. You take them only to throw up a moment later.”
“Side-effects are managed here quite effectively, so that people can take medication and complete the treatment,” said Abashidze.
The patients in France also emphasised that surgery can be crucial, whereas in Georgia, surgeons would not risk operating on them.
“They would not operate on me because they feared I would die on them. Yet here they had no problems with surgical intervention,” said Abashidze.
The wrong diagnosis
Some of the Georgian patients in France insisted that even lab tests in their home country can sometimes be wrong.
“I was told in Georgia that I was resistant to every drug, so they terminated my treatment,” recalled Abashidze. “Once in France, however, I proved responsive to two group-one medications, ethambutol and pyrazinamide, as well as a couple of other drugs.”
Georgian medics diagnosed Lika Changelia’s two underage children with lymph node tuberculosis.
“At the end of each month, when it was time for a test, I asked the doctors to cancel one of the medications, hoping that something could have changed in their condition. ‘No. It is impossible at this point,’ was the answer. ‘There is no improvement to allow us to cancel medications,’” she said.
“There was one drug, cycloserine, which affected the children badly, especially the younger one. The child started hallucinating, became nearly unable to walk and isolated from the world, becoming depressed and detached.”
But after she and her family travelled to France, doctors found no evidence of the disease.
At the National Tuberculosis Centre, Kiria denied that some Georgian doctors might be less competent than others.
“No. It is unimaginable. Why? We have guidelines, both for responsive and resistant tuberculosis patients. Nobody is allowed to stray from these guidelines. Each type of treatment is carried out according to a protocol and strictly observed,” she said.
Georgian patients believe otherwise however, and prefer to seek help abroad, to the point where there have been complaints in France that Georgians have become a burden on the country’s healthcare system.
Georgia’s Labour, Health and Social Affairs Minister, Davit Sergeyenko, said that after the problem was highlighted in the French media, the authorities in the two countries began to share information.
“We provided our French colleagues with the schemes of treatment; that is, the guidelines we use today,” Sergeyenko said. “We maintain telephone and mail correspondence. Based on this information, we hold assessment meetings in the field. We hope to make significant changes in this regard.”
But for Nino Gigauri, any improvements seemed to have come too late. The treatment she was told she needed had failed.
“My treatment has proved futile. I lost my job. I have no social security, so I decided to undergo treatment in France. I do not want to die,” she said.
In the end, Gigauri was one of the lucky ones; she was granted a Schengen visa and took off for France the next day. But what she found out when she got there yet again illustrated the inadequacies of the healthcare she had received in her home country.
“I went to the hospital right after I landed,” she told Studio Monitor by phone from Paris. “Of course, I was admitted at once, and testing followed.”
The results of the tests came as a shock.
“It turned out that had no tuberculosis, neither responsive nor multidrug-resistant, so I was discharged right away. A French doctor walked into my room all agitated. It was obvious that the doctor was very angry. I did not understand. Then the translator told me that I had no tuberculosis and had never had it, so they assumed I was a con artist.”
Gigauri was confused at first, then ecstatic – but also furious. “I feel cheated and abused,” she said. “I am angry. Why did I have to go through so much suffering and pain in my homeland? Why did I have to suffer for so long?”
The long and expensive journey from Tbilisi to France had at least reassured her of one thing however: “I survived.”
Unlike so many others.