An interview with Evghenii Golosceapov, Director of Advocacy at Positive Initiative, a Moldovan NGO and partner of the Make Medicines Affordable campaign.
Golosceapov talks about his own experience of COVID-19, the patent-related challenges facing Moldova as well as strategies for tackling them, and how the technology developed by his organization helped him access up-to-date information about PPE and medicine stocks while he was in hospital.
Around a year ago, in May 2020, Evghenii Golosceapov, spent 16 days in a hospital in Chișinău, Moldova. The ward he was on, like so many around the world in 2020, had been hurriedly converted from its previous use, in order to treat people affected by COVID-19.
“I was transported there by what I described at the time as ‘martians’”, says Golosceapov. “I meant no disrespect to the fantastic emergency medics. Now we’re so used to seeing those sorts of images, but this was earlier on in the pandemic. To call an ambulance and be taken from your apartment by people in biohazard suits and masks – it was a strange experience.”
His symptoms started the previous day, on a Friday evening, Golosceapov developed a cough and a temperature and lost his sense of taste and smell – “the classic symptoms,” he recalls. “By Saturday morning I had a higher temperature, more frequent coughing, and aches and pains. I realised it might be serious. Medical centres were closed so I phoned for an ambulance.”
Golosceapov was first taken to a makeshift COVID-19 centre to be assessed, where a decision would be made, based on severity, who would be treated at hospital and who would self-treat at home.
“The COVID-19 centre was a converted expo centre in a less populated area of the city. They had portioned off the individual areas usually used for exhibitions, and these were kept clean and disinfected.”
“The staff did a greta job. However, the place was designed for short-term visitors, not for people to be there around the clock, so there weren’t enough toilet facilities. Diarrhoea seemed to be a common symptom, with many people not making it to the limited toilets in time. Add to that there were no shower facilities, and some people trying to smoke in the bathroom, I soon realised that losing your sense of smell actually made your life that bit easier!”
It took around 10 hours for Golosceapov’s test results and health checks to be completes. “I was diagnosed with a mid-level respiratory condition, and the ‘martians’ took me to hospital around midnight. I think it was the right decision for me. A few days later, my lungs became more affected and so it was reassuring to be closely monitored, and to have regular contact with the doctors. The doctors were super-professionals. Of course there was no such thing as a COVID-19 ward previously, I was in what was the gastroenterology department and the doctors working with us were specialists in that field, not infectious disease specialists, but they adapted, and could answer all questions about the care being provided.”
“I know people who recovered at home and they felt more vulnerable not having access to that level of care. My lung condition, for example, was easier to examine and diagnose due to a CT scan. There needs to be more of these machines but they are expensive.”
“The virus gave me a low appetite, and I was sweating a lot. It was an effort just to think or speak. It was much easier just to sleep, which did for about 12 to 15 hours a day – I definitely don’t do that usually!”
He received a cocktail of antibiotics, antivirals, anticoagulants and vitamins. “At the time they were trying many different meds.” He was on a course of lopinavir/ritonavir, later found to be ineffective; but also a steroid, dexamethasone, has continued to be prescribed.
It’s put to Golosceapov that it must have worrying, that 16 days is a long time to spend in hospital: “Not really,” he says. He explains the average stay for most people was longer, around a month. He’s thankful that his condition wasn’t worse – his condition never reached ‘severe’ and so his approach to dealing with the situation was to take the treatment on offer, and try to stay calm throughout.
Admittedly, he acknowledges that being a well-known activist in Belarus has given him a high threshold when it comes to stressful situations – from narrowly escaping arrest during the 2009 election protests, to being followed, or having premises raided by security forces while working as country director for Amnesty International.
Another thing that helped Golosceapov during his hospital stay was also his ability to look up how well stocked the hospital he was in.
Medical stocks – in real time
“I was pleased to find that the hospital I was in had a good level of personal protective equipment (PPE), masks etc, which were lacking in some other hospitals. “I was check able to check for myself by looking on www.tender.health.”
As a Make Medicines Affordable campaign partner, at the time of the pandemic Positive Initiative was already actively challenging in intellectual property (IP) barriers that prevent access to essential treatment.
“We had set out to design a way for patients to have access to information about any essential medicines in real time – so that you can click on the hospital you are in and see if the medicines you need are in stock, or if you need to buy them yourself.”
“We worked with health-related national institutions and developed the technology to show government investments, procurements and distribution of essential medicines. This was the initial idea.”
“When COVID-19 hit we expanded this out to include other health-related procurements, to see for example if there are enough doctors, enough PPE for medical workers, as well as the treatment that has been purchased. It shows what has been procured, by who, in what quantity, and at what price.”
“It can play an important role in establishing public trust with regards to how the government is managing the pandemic – if of course the government is doing what it should.”
“It has been used by opposition politicians to appraise what the government is doing, sometimes critically, but still the Ministry of Health has received the tool well.”
Trace the virus, not the patient
As well as the pandemic, what’s described as an ‘infodemic’ has been widely reported around the world – an over-abundance of information, particularly inaccurate information.
The main aim of Positive Initiative’s tender.health is to help patients assess what care and protection they can expect and act as an advocacy tool, but it also helps to counter false information by providing an accurate up-to-date picture of the action that government has taken, and the treatment and vaccines available.
“Misinformation fuels stigma and discrimination. Unfortunately during the pandemic we are seeing examples of this daily, especially in smaller towns. Almost a quarter of Moldova’s working age population work abroad permanently. Early on in the pandemic, people were returning from countries – Russia, Italy, France, Germany, etc – Italy especially being one of the countries most affected at that time. Airplanes full of people who had lost their jobs were arriving in Moldova.”
“People in the places they were returning to saw them as a danger, that they were bringing this ‘freaky and unknown disease’ to these towns and villages. Claims started spreading that people returning were ‘to blame’ for COVID-19. Graffiti was sprayed on people’s walls saying things like ‘the virus lives here’ and telling people to leave, the worst cases were threats to burn people’s houses down if they didn’t leave.”
“We believed that people were directing fear at other people instead of paying more attention to hygiene and social distancing. We launched a national campaign called ‘trace the virus not the patient’.”
“The emphasis of our campaign was on taking precautions, such as wearing masks, washing hands and keeping a safe distance, but also making clear that blaming other people will not save you from COVID-19, it will just damage personal relationships – you will never fight a virus with hate and discrimination.”
The side-effect of patenting
Golosceapov and colleagues initially welcomed seeing commitments to equitable, affordable access via mechanisms such as COVAX, although the vaccine rollout has proven to be grossly inequitable.
“We should not rely oaths or promises of governments and companies only. Patient communities should continue their work. At Positive Initiative, together with colleagues from ITPC and 100% LIFE, we are continuing work in two main directions.”
“Firstly, we are identifying the patent status of essential medicines, looking at pricing and analysing the patent. Where a patent is unmerited we prepare to file an opposition.”
“Our other main area of work is more systemic, which is to look at intellectual property legislation. Working on patents is necessary and very targeted, but we will never achieve high access to treatment through this work alone. We want to change the situation systematically and sustainably. There is a need to introduce to all the flexibilities we have in the TRIPS Agreement into law.”
“The mindset of the old Soviet Union was that patents were positive, and we’ve observed that this remains the default position among public institutions. Of course, Soviet patents also all belonged to the Union, there was a pride in making Soviet versions, e.g. in relation to construction, or engineering. It is hard to change mindsets, but it is a surprise to many people that medicines are patentable, i.e. that it’s not just industrial innovations, so we are slowly bringing into balance the view on protecting inventions and the right to health.”
The organization clearly campaigns tirelessly. Their public awareness campaign ‘patents and their side-effects’ calls for change to legislation. So far, a revised law has been drafted, inspired and bolstered by the successful new patent law in Ukraine. “Our government is influenced by examples from Europe and also from other post-Soviet countries and it helps that Ukraine is a direct neighbour.”
Long road to recovery
“I recall talking with friends and colleagues back in May 2020, just before I was diagnosed, and being surprised how many people were being diagnosed – now I realise it was just the start.” “COVID-19 has slowed down our work on the patent law, but ironically the pandemic means we need this law even more. However, we believe we are in a good position for change. We’re building pubic and professional support by showing that patents are not always constructive for patients.”
Golosceapov is helping to build a movement while also building back his own strength. Since having COVID-19 he’s also had bronchitis, although he doesn’t believe they are related, “possibly, because my immune system was affected, but that would purely be speculating.”
He talks about it taking time to build his strength and energy back up, and also a more “unexpected” side-effect. “It affected my memory, my ability to think clearly, formulate clear ideas, and to recall terms I usually know”.
He’ll be scooting to meetings when it is safe to do so. “It was my dream to buy an electric scooter last year. Now it seemed the perfect time, I can contribute to saving the environment while avoiding public transport!”
“I believe that we are all responsible, the government must act, yes, so must everyone. Individual responsibility is important too.”