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View All. Please login first to save in your collection. Add Visit My Library. While most cancer patients in cities have access to some medications, the treatment they receive is inadequate and provides only limited relief.
Standard pain treatments in Ukraine have been found to deivate fundamentally from World Health Organization guidelines, with all five core principles widely ignored. Many countries do not recognize palliative care and pain treatment as priorities in health care, have no relevant policies, have never assessed the need for pain treatment or examined whether that need is met, and have not examined the obstacles to such treatment. International human rights law requires that governments must provide essential medicines—which include, among others, opioid analgesics—as part of their minimum core obliga- tions under the right to health.
Given that palliative care is an essential part of health care, the right to health requires that countries use the maximum available resources to ensure that it is available.
A few lucky patients receive such support from NGOs that offer home-based palliative care services. Find articles by Katherine Pettus. The chief doctor in district 3 acknowledged the importance of providing pain medications when the patients need it most. The differences were reconciled by e-mail discussions until there was consensus on the statements and wording. Personnel with access to controlled medications must have relevant professional training.
While the positive obligation is subject to progressive realization, countries must comply with core obligations, including the provision of essential medicines as determined by WHO, irrespective of financial constraints. In many countries, however, access to palliative care and to opioid analgesics for pain is very limited. In many countries, the lack of access to pallitive care stands in stark contrast to the investment by health systems in more expensive curative care for the minority of individuals who can access it.
Although governments must address the health needs of entire populations, their health policies, strategies, and indicators often revolve entirely around curative therapies. Similarly, curricula and other training programs for medical students and physicians routinely do not teach even basic knowledge of palliative care. This paper examines the impact of these efforts in India, Kenya, and Ukraine.
The paper also presents the global advocacy efforts undertaken in parallel, which sought to strengthen recognition of the right of access to palliative care, increase support for palliative care through global health authorities, and remove barriers created by drug control efforts. A rights-based advocacy approach to improving access to pain medicine and palliative care.
With a few exceptions—notably the work of the Pain and Policy Studies Group at the University of Wisconsin—little attention has been paid to public advocacy. Even when public advocacy is part of the work, its focus is generally technical in nature.
By contrast, a human rights-based advocacy approach to palliative care and access to pain medicines can be understood to emphasize four key strategies:. The four elements of our strategy humanized the issue of palliative care, identified key barriers, clarified government obligations, and prioritized advocacy as a means to hold governments accountable.
I felt as if someone was pricking me with needles. I just kept crying [throughout the night]. With that pain, you think death is the only solution. Over the course of five weeks in the field, we conducted interviews with a variety of stakeholders, including patients, health care workers, and drug control and health officials. Interviews were semi-structured and covered a range of topics related to palliative care and pain treatment.
Many hospitals simply sent patients at the end of life home to die without any professional support. The report identified a number of barriers to the development of palliative care. These barriers had created a vicious circle. Since the government did not prioritize palliative care and pain treatment, health care workers did not receive adequate training on how to provide these services.
Lack of training and complex regulatory barriers led to the widespread undertreatment of pain and, predictably, low morphine demand. This, in turn, reinforced the low priority given to pain management and palliative care. We also mobilized international scrutiny on the issue of access to palliative care in India. Simultaneously, we worked with local and international partners, such as the Indian Association of Palliative Care, Pallium India, and the US-based Pain and Policy Studies Group, to offer technical support on training curricula, policy development, and regulatory reform.
We also sought to facilitate opportunities for the government to report on progress, including at the UN Commission on Narcotic Drugs and the World Health Assembly. For example, in , the Medical Council of India recognized palliative care as a specialization of medicine, and the Tata Memorial Hospital in Mumbai established a palliative care specialization program. The change to the drug law and the adoption of the National Program in Palliative Care are critical positive steps. However, a number of limitations remain. Funds to support the implementation of the National Program in Palliative Care have been limited, and instructions for states on the implementation of the changes to the drug act have yet to be issued.
Moreover, progress in training health care workers in palliative care has been slow. To date, palliative care is not a standard topic in curricula for medical and nursing students or part of exams for medical and nursing licenses. The body and his wounds were very painful, and eating was very difficult. He would refuse food and cry. He would cry because of wounds and peeling off of skin. As a part of this research, we interviewed the parents or guardians of 30 children 17 girls and 13 boys.
Eleven of the children had a confirmed diagnosis of cancer, and ten were reported to be HIV positive. Other children had burns, TB, malaria, and sickle-cell anemia.
We also conducted 50 interviews with health care workers, including 15 doctors, 18 nurses, 14 community health workers, a clinical officer, a nutritionist, and a hospice administrator. Furthermore, health care workers were not adequately trained in palliative care, and they rarely assessed—let alone treated—patients for pain. The report found that although Kenya recognized oral morphine as an essential medicine, the Kenya Medical Supplies Agency, which procures essential medicines for public hospitals, did not purchase or stock oral morphine—meaning that hospitals had to negotiate individually with pharmaceutical companies to obtain the medication.
Following the release of our report, we and our partners again engaged in a diverse set of advocacy efforts, publicizing the findings and holding a series of meetings with government officials to present the findings and recommendations. Jointly with the Kenyan government and the Kenya Hospices and Palliative Care Association, we organized the first-ever side event on palliative care at the World Health Assembly, where Kenyan officials presented progress on national palliative care policies and practices.
As a result, as of late , palliative care was being offered by forty-three public hospitals, of which two had inaugurated specific programs for children. Further, by late , morphine consumption had jumped more than threefold. In , the government incorporated palliative care into its national cancer control plan and developed national palliative care guidelines, which address the needs of adults and children alike. Moreover, the Kenya Medical Practitioners and Dentists Board developed mandatory courses in palliative care for medical students; the Nursing Council of Kenya included 35 hours of palliative care instruction in the core nursing curriculum and 12 hours in the nursing diploma course; and the Pharmacy and Poison Board added instruction on pain management to the pharmacy curriculum.
In , the Kenya Medical Supplies Authority began to procure morphine centrally for public hospitals, and the government removed its tax on morphine powder. Our research found that access to opioid pain relievers was particularly problematic. This meant that patients who needed morphine required multiple visits by nurses each day. Since hospitals did not have the nursing staff to conduct more than one or two visits a day—or at all in most rural settings—a majority of patients were left without adequate pain medications for most or all of the day.
The report also found that most medical students received no instruction in palliative care and that most Ukrainian physicians did not know or apply basic principles of pain management or palliative care. Furthermore, Ukraine lacked a national palliative care policy. We shared advanced copies of the report and, together with the International Renaissance Foundation, held various briefings for the drug control agency and the health ministry. Since , Ukraine has made substantial progress in improving access to morphine. In , it registered oral morphine as an approved medicine, and two pharmaceutical companies began local production by late The government also introduced major changes to its drug regulations, making them the most progressive of all former Soviet states.
The new regulations also reduced the number of people required to sign off on a prescription for strong pain medicines from four to two: the treating physician and the hospital or clinic manager. Ukraine also integrated palliative care into its national HIV, TB, and cancer control programs and developed and disseminated a national pain treatment protocol.
These changes removed a number of major barriers to expanded access to palliative care. However, significant challenges remain, as greater investment is needed in developing a home-based palliative care system and in training future and current health care workers. In addition to our work to address palliative care in these three countries, we prioritized global advocacy.
This advocacy focused on three distinct areas where we and our partners felt there were strategic opportunities to advance palliative care: 1 strengthening recognition of access to palliative care and pain treatment as a human rights issue among human rights bodies; 2 ensuring greater focus on access to controlled medicines in global drug policy debates; and 3 advocating for attention to palliative care in global health policy debates.
Seeing such recognition as critical to our ability to advance global commitment to the issue, we prioritized working with the Special Rapporteurs on torture and health, treaty bodies, and the Human Rights Council to address this gap. As a part of this work, our coalition briefed the Special Rapporteurs and the UN Committee against Torture, in addition to organizing a side event at the Human Rights Council where we provided relevant information on research findings. Starting with the joint statement of the Special Rapporteurs on health and torture in , there has been an increasing body of statements supporting a right of access to palliative care see Table 1.
Special Rapporteurs on Torture and the Right to Health 42 Letter to Chairperson of the Commission on Narcotic Drugs Many countries do not recognize palliative care and pain treatment as priorities in health care, have no relevant policies, have never assessed the need for pain treatment or examined whether that need is met, and have not examined the obstacles to such treatment. International human rights law requires that governments must provide essential medicines—which include, among others, opioid analgesics—as part of their minimum core obligations under the right to health.
Yet access to opioid analgesics such as morphine was barely part of global drug policy discussions. The Ukrainian Ministry of Health had not implemented any programs concerning the development of palliative care. Moreover, when a Senior Researcher with Human Rights Watch HRW , asked one of the officials of the Ministry of Health about the limited use of morphine in ampules of 50 ml a day, the reply was that that no complaints on this issue had been received.
But in Ukraine there was pain. This pain had many names and faces, lives and families. There were people dying in agony, left to be cared for by their families without any opportunity to get adequate pain relief. Each year more than 80, people die from cancer in Ukraine. The main story of Vlad Zhukovsky, a young man from Cherkasy city in memory of whom the report was written, has become known around the world.
In February , tablet morphine of Ukrainian production was registered, and in March the first deliveries were made to all pharmacies in the country. In May, the Cabinet of Ministers of Ukraine approved the Resolution on drug trafficking in the medical sphere, which seriously altered the system of care provisions to patients at home by creating opportunities to store opioids for up to 15 days. It seems that a lot had been done, but the main issue remains the practical application of new rules and regulations.
One case serves as a vivid example of this: Bucha Case is one of a number of high-profile cases that was under investigation with the assistance of the Ombudsman. Shapoval shares a heart-felt story that told place is Bucha which is a small town on the outskirts of Kiev. Bucha was the home of a pensioner named Lyudmyla, who was ill with cancer and home-bound. Doctors prescribed her morphine because of severe pain in March, Until January 1, , Lyudmyla successfully received morphine ampules — 40 ml per night. Morphine was delivered by ambulance, but in January, ambulances were forbidden to carry controlled drugs to chronically ill patients.
According to the regulations at the time, the function of providing pain relief to these patients should be carried out by a local polyclinic. Lyudmyla died on March 21, with morphine never having reached her.