An interview with Krystyna Rivera, communication officer at 100% LIFE, Ukraine.
Interview by Gemma Taylor.
As a travel journalist, Krystyna was used to taking two weeks out of her life at a time. However, when she was diagnosed with TB, she spent a “traumatic” fortnight in a military hospital. At one point she was told she would have to be hospitalised for 6 months, “but I had to work, pay my rent, look after my daughter, how could I?”. She reflects on how, compared to many others, she feels she was lucky, but even with all the support from family and friends, navigating Ukraine’s health system and recovering from TB was steeped with challenges.
“It was 2014. I developed pneumonia and went to see a doctor.
I’m from Kharkiv in the east of Ukraine. It’s not far from the Russian border, just 35 km or so. The war with Russia had started and I kept hearing from people who had come back from the border about how many Russian troops were around on the Ukraine side. It was extremely unsettling and stressful for everyone.
It was worrying me so much that I decide to relocate to Kyiv with my daughter. Then the MH17 plane was shot down in Donetsk, I think everyone was on edge. The stress of the war and the move all got too much and my immune system must have been run down.
I didn’t know anything about TB at this point. You’d hear that it affected prisoners, or the homeless, or people who use drugs, so there was a lot of stigma, but that was all I knew.
The doctor sent me for screening. After he looked at my scan he started to look at me funny, and then referred me to a TB specialist.
I thought this can’t be happening to me, it didn’t make sense. But, after several screenings and consultations, I was told I needed to go for TB treatment in hospital for two weeks.
My mum looked after my daughter, who was seven at the time. I was advised to go to ‘the best TB facility in Kyiv’, which happened to be in the military hospital. Soilders, from the war in the east were being treated here. There were hundreds of young guys, servicemen in wheelchairs, many with legs or hands blown off. It was so shocking and traumatising to be there at the same time.
Three-star bills
After two weeks of daily treatment I had to leave. As I wasn’t military personnel, I’d have start paying the bill, and the cost is comparable to staying in a three-star hotel per night.
I registered at the state hospital as an out-patient. You can imagine how I felt by this point. It was already quite bewildering. My appointment was upsetting, the doctor spoke to me so rudely.
He asked me if I stayed with addicts or was using myself, or if I’d been in prison. It was accusatory and with absolutely no respect for me or what I was going through. I was in tears, I couldn’t believe someone could talk to me like that.
I had to visit the hospital daily for six months to get my treatment dispensed. For the first two months it was 12 pills per day, after that it was 8.
As treatment continued I was feeling worse. I was having liver troubles, my joints were painful, I had insomnia or woke frequently with night sweats. I had no energy to even cook for my daughter. Still I followed the instructions.
After six months they did another scan. The medical staff told me, ‘you haven’t been taking your pills’. I couldn’t believe it. I expected to be cured, but it really was worse than when I started – and I was being told it was my fault.
I knew I had been taking the pills, and I was lucky that my friends had been keeping updated with what was going on. By coincidence one of my friends knew a doctor. He was working for the World Health Organization (WHO), in the TB department nonetheless!
He made a phone call to the TB specialist at the hospital and in turn the three different doctors I’d seen were all asked to re-look at my records. Now, when someone from WHO calls you about a patient you have to pay attention.
They looked at my records and invited me back in. At first it was recommended that I check into a hospital for people with multi drug-resistant TB (MDR-TB). For six months. At huge cost. I was deflated again. This was crazy, I really couldn’t go, I couldn’t afford to abandon my life. I had to work, pay my rent, look after my daughter.”
Day trips
Because I made a fuss, a Gene Expert test was offered. It turned out I didn’t need the expensive second-line treatment, or the costly six-month stay, it would have all been unnecessary. With some smaller tweaks to my prescription, I could go back to visiting the hospital daily for another six months – I was so relieved.
After further six months of treatment, I was cured. I still test for TB every six months, but I’ve stayed well.
There are 36,000 people affected by TB in Ukraine. This country is ranked fourth in the world for multi-drug resistant TB (MDR-TB). 10 people die a day of a disease that is both preventable and curable.
I can tell you exactly why people are dying.
Even though I was so motivated to look after myself, to get better for my daughter, it was tough. Those daily hospital visits can be really hard to keep up, people have to work or family commitments get in the way, or they have chaotic lives. And you feel terrible. Maybe not to start with, but as TB develops further. Plus the drugs can play havoc for some people, myself included, and often people don’t realise that it’s dangerous to stop taking them.
After I started working with 100% LIFE I went to Lviv to gain more understanding about our TB programme. I met a guy living with TB and HIV who got so sick in hospital that he couldn’t walk. He walked into the ward, but he couldn’t walk back out. He eventually recovered, but these scare stories get shared and it puts people off seeking help.
Optimal treatment with fewer side-effects could help improve treatment retention. The rude doctor at the state hospital asked me to swear to God that I’d be back for my treatment the next day. I think he cared more about his statistics than me, but the fact that he said it tells you that they expect people to disappear.
Sanatorium stay
After I was cured, I was offered a month’s stay in a sanatorium. It’s offered to ex-TB patients, and the nurses and doctors that treat them, to go and breathe and enjoy the fresh mountain air.
It’s a nice place, south of the Carpathian mountains. It’s simple and a bit run down, with some holes in the walls or ceiling, and there’s no hot water. It looks like the place has had no money invested for a long time, but it is surrounded by beautiful nature.
The sanatorium’s director chatted to me, and he gave me the best room when he realised I was a journalist. One day, I was waiting at a bus stop when he pulled up in a really old soviet car. Clearly he’s a simple, honest man and can’t afford anything more expensive. He was off to Kyiv, he tells me, a meeting with the Ministry of Health 600km away.
Back at the sanatorium I noticed two or three really expensive black jeeps parked round the back. When I asked around I found out they were the director’s and his wife’s. Wow, I thought, he gets out a shitty car especially to go and see the authorities in!
Journalist on the case
I soon found out that the way it works is a that sanatorium like his gets paid per bed not per patient. So if he has 100 beds, but only 30 people he’ll receive the same, maximum amount of money. If he was fully-booked he might need 5 doctors, plus a certain number of cleaners and chefs, etc, and a large food budget. When the place is quiet he can employ less staff and pocket the cash for the empty rooms and the extra salaries.
It applies to all sanatoriums and other institutions but the policies are now part way through being reformed. People, like the director, who have been benefiting, are going crazy about the new rules and fighting it so hard.
We are desperately waiting for health care reform of secondary and tertiary level care in Ukraine. When the bill passes through its secondary phase (which is expected during 2020), this could ensure people are offered appropriate testing and diagnostics sooner and that funds are distributed where they are more effective.
In the end it took me 12 months to recover. For people with MDR-TB it can be 20 months. It’s a journey I never want to take again. We need to make the route through testing, correct diagnosis and treatment as short and as comfortable for people as we can.”
Advocacy efforts by 100% LIFE and others has resulted in key TB drugs (such as bedaquiline and delamanid) being included in Ukraine’s treatment guidelines since the end of last year, and the prices have reduced.
Thanks to these efforts and donors’ support (USAID bedaquiline donations and Global Fund procurements) today Ukrainians with TB can be treated with new effective drugs. However, the costs are still too high and the state cannot afford to treat everyone if the donors’ support stopped. If this happens Ukraine will return to outdated, more toxic, medicines.
