Three weeks into the quarantine, Ukrainian medicine is aimed primarily at counteracting the coronavirus. However, millions of patients continue their personal struggles against oncology, HIV-AIDS, diabetes, tuberculosis, drug addiction, heart disease, various forms of allergies, multiple sclerosis, renal failure and other diseases. Their treatment is difficult and long-lasting, and most importantly, it cannot be interrupted even during a quarantine. Their life depends on it.
hromadske gathered the views of philanthropists, physicians and patients themselves about whether the state is doing enough to provide quality treatment, what problems they most often face during quarantine, what they fear and what they would like to change.
Cancer patients are one of the most vulnerable groups now. According to the Ministry of Health (MoH), annually about 140,000 Ukrainians find out that they have cancer for the first time. Currently, there are nearly 1,000,000 people with cancer who were successfully treated and are in remission.
Maryna Vatalynska-Kushnir, who lives in central Ukrainian Vinnytsia, has had breast cancer for over three years. For a year and a half, she has been fighting against relapse. She goes to a clinic in Kyiv for this. During quarantine, the biggest problem for her is getting to the hospital:
"The first week of quarantine, I thought everything would be fine. And then I started to panic, because I only have a handful of friends with cars. I wrote a post: who can help me get to Kyiv? As it turned out – only a few were keen. Fortunately, my friend helped out. My husband and I paid for gas [...] As we were returning, they started checking at checkpoints, not everyone was allowed in and out. That was already in Vinnytsia."
The doctor wrote a note to Maryna about when she should have her next chemotherapy session – so she could present it at a checkpoint.
"Because if I stop treatment now, everything that has been done before will be to no effect," says Maryna.
She says that she cannot seek help from local Vinnytsia hospitals now because they do not work with certain drugs. In addition, some of them are closed – a case of COVID-19 infection was recorded in a doctor of the Podilskyi Oncology Center.
There are also existing problems with the purchase of medicines for cancer patients, which are only getting worse now. Including, due to changes in MoH leadership and internal scandals.
Olena Zhuzha, Head of Analytical Support Sector of the State Enterprise Medical Purchasing of Ukraine, says that a lot depends on the peculiarities of the pandemic drug market:
"The spread of coronavirus in all countries has a great impact on prices, delivery times and availability of drugs on the market. And now it is very difficult for us to change that. We are waiting for some orders from the Ministry of Health to distribute drugs because it is only then that the tenders will be launched. Every day of delay is critical for subsequent purchases. It depends directly on the management of the MoH."
Zhuzha also explains that the longer the drug is made, the more difficult it is to deliver. Even when tenders are announced, it takes time to conclude contracts, only after that, the winner starts production, then the delivery procedure – all this is better planned earlier, before the end of the budget period.
Inna Ivanenko, chair of the "Patients of Ukraine" foundation, adds:
“The international organizations that will buy medicines this year have not yet been selected, and the necessary documents for the start of procurement have not been approved. At this rate, Ukrainians suffering from cancer, rare diseases, hepatitis, hemophilia and other serious illnesses are at risk of being left without medication in 2020. Therefore, the main challenge for the new minister is to start the drug procurement process quickly.”
Charity organizations and volunteers help cancer patients.
For example, Inessa Matyushenko, chair of the Cancel/R NGO, calls for donations that are increasingly in short supply at this time at the National Cancer Institute.
“Patients who are currently undergoing bone marrow autotransplantation with very low blood counts cannot find the right amount of donors, and the thromboconcentrate costs about UAH 7,000 ($255). I really want them to get it for free!” she writes.
Tabletochki charity tells the stories of young cancer patients on their social networks on a daily basis and calls for help.
The Lviv-based Wings of Hope charity fund working with children's cancer departments also continues to help in quarantine.
Nataliya Lipska, director of the fund, says: "We buy medicines, pay for examinations, buy supplies for the departments where children with cancer are treated and those who need organ transplants. The only thing we've eliminated is creative in-hospital lessons and clown visits to minimize the risk of infection of our wards. Also, with the onset of quarantine, we have helped fight the virus, strengthened children's hospitals, and are now working on providing hospitals with everything they need. First and foremost, it is personal protective equipment."
Lipska also says that Lviv hospitals continue to provide full support to cancer patients, but the offices are closed for visits, and any planned operations that could be postponed have been postponed. According to her, the procurement problem is permanent, but currently they are coping with everything.
Ivanenko makes a general assessment of hospital readiness to work during a coronavirus pandemic:
"What we are seeing is that our hospitals do not have personal protective equipment: protective clothing, masks/respirators, goggles and gloves, disinfectants. In the Vinnytsia region, a doctor from a maternity hospital and an oncology clinic got ill. Family doctors are starting to get sick. Or they take vacations at their own expense and refuse to work because they are endangering themselves as they have nothing to protect them from sick patients. That's why we launched the initiative to fight coronavirus."
Batch of medicines for the treatment of oncological diseases arrived at the warehouse of the state enterprise "Ukrmedpostach" in Kyiv, archive photo. Photo credit: Vyacheslav Ratynskyi / UNIAN
HIV and AIDS
In February 2020, 1,586 new cases of HIV were officially registered in Ukraine, 465 patients were diagnosed with AIDS and 192 died of AIDS.
Ihor Matkovskyi, Director of the Vinnytsia Regional Clinical Center for AIDS Prevention and Control, talks about the vulnerability of these patients to coronavirus:
"Those people with HIV who have an immunodeficiency are more prone to getting pneumonia. But for these patients, the means of preventing coronavirus are the same as for people without HIV. First of all – self-isolation. If we talk about stable patients with HIV infection, who do not differ from us in terms of health, they are not any different in terms of how they can get infected with coronavirus".
People living with HIV receive antiretroviral drugs for life and cannot interrupt their treatment.
The patient and director of the department for work with regions of the "All-Ukrainian Network of People Living with HIV/AIDS" Valeriya Rachynska speaks of her treatment in quarantine:
“The negative points: there is no transport connection, so you need to go to the hospital by taxi. Also today it became clear that practically all staff at my medical institution work remotely, so it is impossible to get a note required by another hospital – there is no one to write them. What’s good is that antiretroviral drugs are still readily available.”
Valeriya says that it is very difficult for her now psychologically – first of all, because she understands that the global system of purchases and deliveries is now malfunctioning and all drugs are imported.
"The news about quarantine in India has incurred a desire to get drunk, they are the biggest suppliers of generic drugs. Besides, one of the drugs in my regimen was considered promising for the treatment of COVID-19," says Valeriya.
Matkovskyi's hospital in Vinnytsia has introduced a practice: antiretroviral drugs are sent to patients by mail, consultations are given online, but patients with serious illnesses are not refused hospitalization. With regard to the procurement of antiretroviral drugs, he explains:
"This is actually a very big problem not only for the Vinnytsia region but for the whole of Ukraine. At present, we have approximately 3-4 weeks' supply of drugs. The clinic can't work like that: the stock should be 6-9 months. In the Vinnytsia region, more than 2,000 patients receive antiretroviral therapy for life. Drugs should be dispensed three months in advance, and because of the limited amount of medication, patients have to contact us more often, which affects the psychological state of our people."
Serhiy Dmytriev, Director of Policy and Advocacy at “100% Life", one of the largest patient organizations in the country, believes that the situation is no longer affected by quarantine but by the Ministry of Health:
"If we do not extend the agreements with international contractors that expire on March 31, 2020, 140,000 HIV patients in Ukraine will be left without medicines because they will simply not be allowed to pass to Ukraine at customs. In addition, there are problems with the delivery of medicines already cleared and in-stock in Ukraine. For example, due to the fact that the Ministry of Health took long to sign documents, Dolutegravir was not delivered on time. These drugs were just kept in stock, though they could have been shipped a week or two ago."
Doctor at the clinic of the Institute of Epidemiology and Infectious Diseases treating patients with HIV / AIDS and hepatitis, Kyiv, archive photo. Photo credit: Andriy Skakodub / UNIAN
Maksym's children were born during the war. They lived in frontline Zaitseve which was regularly shelled. During one of the shellings, his daughter Nastya got very scared. After that, the girl started having psychological problems: she closed up, got scared of the military and heavy equipment, and often acted up. After a while, she was put in intensive care, where doctors diagnosed her with diabetes. The only state benefits the family receives are a disability pension and free insulin. Maksym says that medicines are received without interruption under quarantine.
However, not everyone is as lucky. On the initiative of Lyudmyla Petrenko of the International Diabetes Association of Ukraine, patients and heads of 16 NGOs wrote a letter to the leadership of the state on the situation of treatment of diabetes during the quarantine. They write:
"Since March 2020, we have received numerous requests from patients as pharmacies refuse to provide them with vital medicines or give such small doses that are completely ineffective to compensate for diabetes.
The subsidy allocated to the Ministry of Health for reimbursement (drug availability and treatment system – ed.) covers just over 50% of the required amount, and the regional authorities constantly sabotage the co-financing of this program on their part. It’s us, the patients, who are the prisoners of this situation, who for years have not received the necessary treatment due to lack of funds in regional budgets. And now, in the wake of the coronavirus pandemic, the lives of thousands of Ukrainian diabetic patients are at risk."
Dmytro Polishchuk from Kyiv has been suffering from mild sclerosis since 2017. He can only be kept in remission if he takes expensive medicine (monoclonal antibodies).
He shares his experience of the quarantine:
"I do not know if I will be able to see a quarantine doctor, as the fourth hospital is now being redeveloped for patients with COVID-19. There is a Center for Multiple Sclerosis, and it turns out that most patients are left at home with their problems, and I won’t even mention the regions: there is almost nothing available for patients with multiple sclerosis even without the quarantine. I buy medicine at my own expense, because what the state offers is not very helpful, and not sufficient for all."
Dmytro's treatment cannot be put on hold, and the drug he takes suppresses the immune system – so he is also worried about being at risk of coronavirus.
Kateryna Misyura, chair of UCMS, the Ukrainian Community of People with Multiple Sclerosis, says that a coronavirus hospital has been set up at the hospital where the Kyiv Center for Multiple Sclerosis is located. Therefore, the Center itself is now quarantined. At the same time, according to her, it was always crowded.
“Even the meager state provision of the cheapest treatment has closed, patients just don't know where they can take even the state-guaranteed medicine. The situation is critical, because the treatment of multiple sclerosis requires stability and continuity, otherwise the symptoms worsen and the disease progresses. People are wasting precious time because assistance is not being fully provided. There is no way to diagnose, treat, and follow up multiple sclerosis in a timely manner,” says Misyura.
According to the Public Health Center, about 17,000 tuberculosis patients are receiving treatment as of the end of March 2020.
Of these, a large number of patients went to hospitals daily to receive medication. Currently, tuberculosis hospitals are open, but entry is limited to minimize contact.
Outpatients receive treatment for a certain period of time. But if treatment is interrupted, mycobacterium resistance to drugs may be formed, which will reduce the chance of recovery.
According to the recommendations of the Public Health Center, which are in line with the World Health Organization, treatment should be monitored by video. Online patient counseling and psychosocial support are also recommended.
Olha Klymenko, chair of the board of the charity TBpeopleUkraine, says that there has never been stability with the procurement of tuberculosis medicines:
"I appreciate the circumstances, but no one has canceled the tuberculosis epidemic. Overall, the priority of coronavirus measures has adversely affected access to health services for vulnerable population groups. People are devoid of social and psychological support. Patients who have just undergone outpatient treatment are left without any assistance."
DOT-room (directly observed treatment room) in the building of the territorial medical association "Phthisiatry" in the Kyiv City Tuberculosis Hospital, archive photo. Photo: Borys Korpusenko / UNIAN
People with life-threatening illnesses are also at risk.
Margaryta Tulup, founder of the LaVita charitable foundation, says:
"I have certain data that at least in Kyiv, they try to get those patients who can be discharged home. Often the patient can be discharged just like that, with no palliative care team. So it’s not very clear who will continue to care for a person if his condition worsens. The key issue here is that each region has to decide how they will accompany patients who are in the most vulnerable category and which infection may be most affected. Unfortunately, practice has shown that family medicine doctors will not have enough time to accompany palliative patients, given their current workload."
Tulup also says that some patients are afraid of being infected with a coronavirus, so they ask to be taken home.
Zoya Maksymova, a palliative care response team specialist in Kyiv, comes to patients in individual care and provides home care. She says, if necessary, doctors can prescribe treatment regimens online. For those patients who cannot take care of themselves, the social service comes to you – it helps you buy groceries and everything you need.
“Some drugs are gone and cannot be bought. For example, antipyretics, which are sometimes used as painkillers. Of course, this is due to the coronavirus epidemic. But it can be blocked by other drugs. Oxygen concentrators are also needed not only by patients with coronavirus infection, but also in patients with lung cancer or with lymphomas, that is, those who are suffocating. They can turn to the “Open Palm” and “Svoyi” funds – who can help them buy it. All the shortcomings are covered by volunteers and philanthropists. It is the same scenario as on the Maidan,” says Maksymova.
MoH order number 698 is currently in effect which explains which hospitals should operate and how. However, according to the chairperson of the foundation “Patients of Ukraine”, Ivanenko, this is not enough, because the wording of the order is rather vague and can be interpreted by doctors in any form. She also stresses that the MoH does not carry out any additional communication with specialist institutions and doctors.
hromadske sent inquiries to the Ministry of Health regarding the conditions of treatment of patients with cancer, HIV-AIDS, tuberculosis and other diseases, and also asked about the status of procurement of drugs – we are waiting for a response, which will be published later.
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