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Kharkiv Human Rights Group Social Networking



XIV. The observance of the right to health of vulnurabre group repsesantatives

[1]

1. Violation of the rights of people, who participate in the substitution
maintenance therapy program

From March 2014 the supply of medicines for substitution maintenance therapy (hereinafter — “SMT”) to AR of Crimea has been interrupted due to the annexation of the peninsula and blocking of roads to it. As known, SMT and medicines used in it are forbidden in the Russian Federation, so they can be delivered just from the mainland Ukraine. Every batch of drugs, which SMT medicines relate to, should be accompanied by the Ukrainian armed militia officer and this became impossible in a current situation.

The process of adopting SMT in Crimea had lasted 9 years; about 800 drug user patients everyday received appropriate treatment in the local health facilities in Simferopol, Sevastopol, Yalta, Yevpatoria, Feodosia, Kerch and other towns. By the time the supply ban started, there was left only a few days reserve of medicines used in SMT, namely methadone and buprenorphine. The situation in the City of Sevastopol was the most difficult; the dosage of medicines for patients has been forcedly titrated down.

The refusal in STM as the result of closing the program is regarded by the UN Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment Juan E. Mndez as inhumane treatment and, possibly, drug users torturing (A/HRC/10/44, Corr. 1 para. 57). The World Health Organization considers the interruption of SMT as the one of the forms of inhumane treatment too. The closing of SMT program contravenes the Article 2 Part 2 of the International Covenant on Economic, Social and Cultural Rights that emphasizes the duty of the State to prevent any discrimination (in this case it refers to the discrimination on the basis of chronic opioid addiction).

Despite the appeal of the representatives of non-governmental organizations and 229 patients to the government bodies of Ukraine, AR of Crimea, the Russian Federation, in May 20, 2014 SMT program was completely shut down in the Crimea by the authorities of the Russian Federation.

SMT patient Oksana (35 years old) had to leave her home in Simferopol the next day after forced closing of substitution therapy by Russian authorities in May. Today she is receiving the treatment in one of the Kyiv’s hospitals and doesn’t hold her emotions: “If I had stayed in the Crimea without medicines, I would probably have died already. I’m a disabled person, I have already had a stroke earlier and I do know what it means to be left without therapy and care even for a few days. Today in the Crimea the former patients, who were unable to left, are in a terrible state, some are no longer in this world and the other decided to commit a suicide.”[2]

There was only one opportunity to continue providing medical treatment to the clients of SMT program: in May 2014 the International HIV/AIDS Alliance in Ukraine with the financial support of the International Renaissance Foundation proposed the help to those SMT patients, who were ready to move out from the peninsula to the mainland Ukraine to extend treatment if patients were planning to come for the permanent residence or undergo a full course of detoxification and adapt to further life without medicines. Throughout the existence of the project (till the end of August 2014) every patient, who have asked for help, have been provided with money for relocation, temporary accommodation and food for the period of the therapy. This initiative also included the provision of integrated services. In such a way if it is necessary the patients had the opportunity to receive both medical services (SMT, etc.), legal and other help such as assistance in reinstatement, registration, employment, etc. at the expense of existing social services for displaced persons from the Crimea supported by the state.

In June 2014 thanks to the humanitarian project that the International HIV/AIDS Alliance in Ukraine served, the specialized health facilities in Kyiv, Dnipropetrovsk, Sumy and Kirovohrad the course of SMT treatment for 80 patients was provided: 57 patients from the Crimea and 23 from the Region of Donetsk.

In May of 2014 the State Service of Ukraine on Drugs Control appealed to the Council of Europe to help overcoming the shortage of medicines that arose as a result of the annexation of the Crimea and armed conflict in the east of the country.

In response to this appeal the expert team from the Pompidou Group, a multidisciplinary structure of the Council of Europe in the development of the policy in the field of fighting against drug addiction in member states of CE, visited Dnipropetrovsk on 15–22 of May.

This group consisted of four doctors from Norway, Switzerland, Poland and Slovenia. “During the mission we consulted patients from Crimea and eastern Ukraine, who were transferred to other regions, and who were deprived of the opportunity to receive necessary course of treatment at their place of residence. The rights of these patients were violated. We visited Dnipropetrovsk — the city located near problem regions. We saw there about 20 former drug user patients, who faced with other violations besides the refusal in substitution maintenance therapy. In disregard for the medical confidentiality their employers were informed about the situation this people were in. “Clearly that this patients lost their work, — said Robert Teltzrow, the member of Pompidou Group. — They didn’t feel well because the treatment had to be interrupted as these medicines (methadone and buprenorphine) are forbidden in the Russian Federation by law. For this reason some patients were arrested on charges of using forbidden substances. The patients became criminals in a night!”[3]

According to the reports of the Pompidou Group more than 775 Crimeans received the methadone therapy. But, considering that they had to interrupt the course of treatment, many of them got hooked on heroin again: “Immediately after the illegal annexation of the Crimea the Russian legislation became in effective there. This means that patients cannot continue with this treatment course there and have to move to places, where they can continue the started therapy.”[4]

“About 30 patients have already died in Crimea; only in Simferopol we have lost 5–6 my fellows in misfortune!” — reported the SMT patient from the Crimea during the International Drug Policy Conference on September 12, 2014[5].

It is absolutely clear that the problem of supply of medicines used in SMT covers the ATO zone in the Regions of Donetsk and Luhansk. But the supply of medicines in this case cannot be imposed on volunteers because the circulation of these medicines is limited and they cannot be bought in a pharmacy and brought to patients.

On December 17, 2014 295 SMT program patients addressed the President of Ukraine with a request to help in providing the supply of medicines used in SMT to the ATO zone. In particular, the request stated: they will run out of Ednok medicine on December 15, 2014, Methadone — on March, 2015.

The request included the following lines: “If you deprive us the medicines now… we all automatically will be in the position of a ‘suicider’, who has nothing to lose. And when choosing between slow and painful death (only few of us can go through withdrawals and recurrence of all concomitant diseases) and returning to criminal environment, to the street, and as a result to prison, the majority of us will prefer to commit a suicide, which patients now often mention in their talks.”

The problem of providing a drug medicines supply to the ATO zone has been discussed during the meeting of the National Council on tuberculosis and HIV/AIDS chaired by Vice Prime Minister of Ukraine on October 28, 2014. Further certain working meetings and consultations were held under the aegis of the State Service of Ukraine on Social Diseases, also involving international humanitarian organizations. However all efforts to solve the problem didn’t led to the positive result. Quite the opposite, the situation became even more serious at the end of 2014 and the responsible governmental authorities still haven’t decided on their position referring to so-called ambiguity of legislation and different obstacles resulting from current law.[6]

1.1. Recommendations for the Government of Ukraine

1. To issue relevant instructions to the Ministry of Health of Ukraine, Security Service of Ukraine, Ministry of Internal Affairs of Ukraine, the State Emergency Service of Ukraine, the State Service of Ukraine for Drugs Control, the Ministry of Defence of Ukraine and other responsible governmental authorities to efficiently work through, together with the International Committee of the Red Cross, of the accepted mechanism and practical solution to the problem of unimpeded supply of humanitarian medicines, including drug ones, which are used in SMT programs, to the health facilities on the territories beyond the control of Ukrainian authorities.

2. To impose on the Ministry of Health of Ukraine a duty to ensure provision of all necessary medicines (via repartition of medicines between the regions) to all SMT patients, who can move to the territory under control of Ukrainian authorities.[7]

2. The Rights of the People Belonging to LGBT-Community in the Field of Health

The UN Human Rights Committee considered the 7th periodic report, presented by Ukraine (CCPR/C/UKR/7), on its 3002nd meeting (CCPR/C/ SR.3002) on July 23, 2013 and made the following observations:

The Committee is concerned about reports about discrimination, hate rhetoric and acts of violence against lesbian, gay, bisexual and transgender (LGBT), and acts of violation of their rights to freedom of expression and freedom of assembly. It is also concerned about reports that according to Order of the Ministry of Health of Ukraine as of February 3, 2011 No. 60 “On Improvement of Medical Assistance to Persons Needing Change (Correction) of Sex”, the transsexuals must undergo obligatory hospitalization to psychiatric institution for up to 45 days and obligatory corrective surgical intervention in the manner prescribed by the responsible Commission as one of the preconditions of legal recognition of their sex.

Human rights organizations totally agree with the recommendations of UN Committee about the necessity to give an update on the Order No. 60 of the Ministry of Health of Ukraine and other laws and regulations to ensure that:

1)  Obligatory hospitalization of persons who need change (correction) of sex to psychiatric institution for up to 45 days is replaced with a less invasive measure;

2)  All medical treatment is carried out in the best interests of an individual with his/her agreement, and is limited only by necessary medical procedures in accordance with his/her wish, actual medical needs and situation;

3)  Any abusive or disproportionate requirements for legal recognition of sex reassignment should be cancelled.

3. The Rights of the People who Need Palliative Care

According to the WHO’s definition the palliative medical care is an approach that helps to improve the quality of patients’ life (children and adults) as well as lives of their families that faced the problems associated with life-threatening illness, through prevention and relief of suffering by means of early identification, detailed assessment, treatment of pain and other physical problems, psychosocial and spiritual assistance [6]. The palliative care is based on the principle of respect to the patient’s decisions and is aimed at provision of practical support to the members of their families during the illness and in the case of patient’s death to overcome the grief because of losing a loved one.

The Committee on Economic, Social and Cultural Rights in General Observation No.14, noted that “... states are under the obligation to respect the right to health by refraining from taking measures to close or limit equal access … to preventive, curative and palliative health services.”

According to WHO’s estimates annually about 20 million of people around the world need palliative medical care at the end of life. The same numbers of people need palliative care in the last year of life. So, the total number of people who need palliative care is about 40 millions. It is estimated that of 20 million people, who need palliative medical care at the end of life, 80% live in countries with low and middle level of income; about 67 % are the aged people and about 6% — children.

Palliative care for children should be included in the process of uninterrupted provision of medical care for children with life-threatening illnesses as a part of the national health systems. There is a need for development of strategic connection between the provision of palliative care and the program of prevention, early diagnosis and treatment of such illnesses.

There are some difficulties in the process of palliative medical care provision: in Ukraine, as well as in many other countries, the health policy is developed without appropriate consideration of palliative care need; in most of the cases relevant scientific work or professional training are not conducted at all or conducted insufficiently; complicated access to narcotic analgesics. The recent study about the state of practice in provision of palliative medical care in 234 countries and regions shows that such type of care is properly integrated into the health care system only in 20 of them; in 42% of cases the services for palliative medical care are available, and in 32% of cases the access to such services is provided only for small part of the population. About 80% of the world population does not have appropriate access to the medicines used in provision of palliative care. Unfortunately the list of medicines used in provision of palliative care is not approved in Ukraine.[8]

The palliative care in Ukraine refers to the field of medical care and is regulated by the Order of the Ministry of Health of Ukraine “On Organization of the Palliative Care in Ukraine” No. 41 dated 21.01.2013 and Articles 35-4 of the Fundamental Principles of the Health Care Legislation of Ukraine effective as of 01.01.2015 according to the Law of Ukraine “On Amendments to the Basic Legislation of Ukraine on Healthcare Regarding the Improvement of Medical Care Provision”. The palliative care is a social service (in accordance to the collective Order of the Ministry of Social Policy and the Ministry of Health of Ukraine of Ukraine No. 317/353 dated 23.05.2014 “On Approval of the Cooperation between Subjects during the Provision of Palliative Care Social Service at Home for the Terminally Ill People”).

This division of competencies between two Ministries leads to difficulties in organization of a complete palliative care complex for patients.

Special aspects of palliative care for children are not reflected in the regulatory documents at all in spite of the recurrent problems in this field:

1. Definitions, principles, fundamentals of palliative care for children in Ukraine are not defined at the level of legislation.

2. In this regard, in the modern health care system of Ukraine there is no place, where children, who can be called “palliative”, would be able to stay.

3. But they stay in an infant orphanage without palliative unit.

4. If there is a suspicion that their life is over, these children are transferred to hospitals with an intensive care unit.

5. In intensive care units terminally ill children can stay for weeks, perhaps months. Often relatives are not allowed to visit them.

6. At the last moments of life, all such children can see is a hospital. They are separated from their parents.

7. There are no palliative wards in oncology units, so children whose condition is getting worse, having threat to their life, stay with other patients. Or watch “the effect of window on the door, which is closed with a sheet” — small patients understand that their friend dies there.

8. On Ukrainian pharmaceutical market there are no registered children’s dosage forms of analgesics, including opioid analgesics.

4. Violation of the Rights of Palliative Care Patients

Despite of the significant changes in the legislation of Ukraine[9] concerning narcotic pain medications, in 2014 human rights activists documented serious violations of the rights of palliative care patients.

It should be noted that mental peculiarities of relatives of the seriously ill people and weaknesses of legal consciousness lead to deep latency of violation of the palliative care patients rights’.

Thus, during the whole 2014 only five relatives of palliative care patients appealed to the human rights activists with typical problems: all related to access to opioid narcotic analgesics.

The geography of appeals was as follows: two appeals from Kyiv, two appeals from Zakarpattya, Tyachiv and Mukachevo Districts, one appeal from the Region of Cherkasy, the Town of Vatutino. The treatment of patients in Tyachiv District (Region of Zakarpattya) and Holosiivskyi District (City of Kyiv), were the absolutely the same.

The plot of appeals was typical: a chronically ill person has expressive pain syndrome, patient received specific treatment and now is at home, alone with his pain and suffering. Outpatient department or pharmacy at place of patient’s residence refuses to put on (or grant) effective pain relief according to standards set by the Ministry of Health of Ukraine.

The reasons for refusal by the medical treatment facility are the following:

1. “We do not know if there is pain or not.”

2. “Patient will be a drug addict after appointment, so let him take nalbuphine, or in extreme cases we prescribe tramadol an hour before death.”

3. ”We cannot prescribe morphine. Is there morphine in tablets? But it is a very strong drug, tramadol is better.”

4. “How do you prescribe tramadol? — Oh, 1 pill three times a day. — And what is the dosage of tramadol in one pill? –- I do not know, 1 pill three times.”

5. “We prescribe 1 morphine pill for a night. — And why the instruction says every four hours? — We are the medical officers, we know better.”

6. “We do not have prescription form -3”

7. “There is no stock of morphine in tablets in pharmacy. Where will you get it?”

8. “At one prescription form -3 only 10 tablets of morphine can be prescribed.”

9. “I do not prescribe morphine, it is prescribed by commission on reasonableness of prescription,” — said a family doctor.

10. “Are you registered in the Cancer Registry? No? So we do not have the right to prescribe pain treatment.”

11. A family doctor said to the patient — the disabled person of the 1st group: “Come yourself to take prescription, yeah I do nothing but bring you prescriptions. — Can’t you come yourself? I cannot give it to your drug addict nurse.”

All the above mentioned refusals are contrary to current legislation and violate the right of a palliative care patent to dignity and protection from inhuman treatment.

There were two training centres for palliative care in Ukraine: in Ivano-Frankivsk and Kharkiv, also non-governmental organizations held travelling seminars for medical workers aimed at explaining new amendments to legislation of Ukraine and new procedure for narcotic analgesics’ prescription in the health care facilities. There is a feedback during the training meetings and it confirms the worthiest fears about abundance of the abovementioned treatments of doctors to the terminally ill patients. Therefore, the presumption of deep latency of violation of palliative care patients’ rights is absolutely reasonable.

Z., who is suffering from difficult oncology disease and is a palliative patient by the state of his health, has taken two courses of chemotherapy in Lisod Clinic, the City of Kyiv. In December 2014 he was discharged to continue treatment at the place of his residence to the next prescribed course of the chemotherapy.

In the last discharge he was recommended to extend, among other things, the course of palliative care that was implemented in Lisod Clinic with the use of injectable morphine.

Arriving to the Town of Vatutine, the patient and his father visited a district doctor of polyclinic department of the 2nd City Hospital of the Town of Vatutine. Taking into account the condition of the patient (expressive pain syndrome), recommendations from Lisod Clinic (to continue the course of pain treatment using morphine), a district doctor prescribed palliative care on an outpatient basis using morphine tablets: 1 tablet 10 mg — 4–5 times a day, about what made an entry in out-patient card and wrote out a prescription for the appropriate form -3 with the note “For cancer patients”. The prescription was meant for 10 days and 40 pills 10 mg of morphine (1 pill 4 times a day) were to be given.

Father of patient Z. came to the only pharmacy in the town which releases drugs; it is licensed to turnover of drugs. But the manager of pharmacy refused to give 10 daily doses of morphine according to the prescription (40 pill, as was stipulated in the prescription), referring to some sort of instructions that it is prohibited to release more than 10 pills of morphine to patients despite of the diagnosis and doctor’s prescriptions.

Z’s father received 10 pills of morphine that was enough for his son to control the pain for 2 days, including the day of receiving the prescription. He had bought these medications at his own expense. Under this scheme, the father must attend the clinic every other day, must lose time for the prescription and way to the pharmacy. This time is essential to provide care to the seriously ill son.

The intervention of the representatives of the Office of the Ombudsman of Ukraine helped palliative patient Z. to reinstate his right to receive essential medicines.

5. Recommendations[10]

As a result of the analysis of the literature, regulations and documents, electronic resources studied, that contain information on palliative care for children, we consider the prospects of palliative care development are as follows:

1. The development and implementation at the national level of the measures aimed at inclusion of palliative medical care in a continuous process of provision of medical services to patients with life-threatening illness at all levels of the health system by establishing a national concept, with special emphasis on services of primary health care and on assistance in the organization of palliative care at the local level.

2. The creation of a content of palliative care for children and its inclusion in the curriculum of secondary and higher medical education for training of personnel and improvement of their skills.

3. The creation of a contemporary legal and regulatory framework for the implementation of palliative care for children in terms of reforming the healthcare industry.

4. The creation of interagency group to develop research activity in the field of palliative care for children, including the development of standards, legal documents and models for this type of services.

5. The development of communication standards and ethical aspects of provision of palliative care for children. The involvement of local communities in the development and implementation of policies and programs.

6. Ensuring appropriate access of children who need palliative care to medicines recommended by WHO.

7. Ensuring provision of all components of palliative care (medical, psychological, spiritual and social) for children and their families by trained specialists.

8. Information and awareness-raising work on the question of provision of palliative medical care, achievement of comprehensive coverage of children, who need palliative care, taking steps to improve the quality and safety of palliative care with the support of local communities.

[1] The part was prepared by A. Rokhanskyi, NGO “Institute of Legal Research and Strategies”.

[2] The International HIV/AIDS Alliance.

[3] http://www.europalibera.org/content/article/25401302.html

[4] http://www.europalibera.org/content/article/25401302.html

[5] Watch the film “The First Crimean Victims” https://www.youtube.com/watch?v=G9zhiLK5AGY

[6] The Appeal of International HIV/AIDS Alliance to the Prime Minister of Ukraine dated 19.12.2014.

[7] Recommendations are presented by the International HIV/AIDS Alliance.

[8] http://healthrights.org.ua/fileadmin/user_upload/pdf/paliatuvka.pdf

[9] “Human Rights in the Field of Health Care — 2013”.

[10] Recommendations about the development of palliative care for children were prepared by A. Pen’kov, R. Marabyan, O. Riha.