Palliative Care and Access to Pain Medications in Kenya
Pain is an individual and isolating, interior and unsharable experience.
Elaine Scarry has written that “pain decontextualizes, it breaks the sufferer away from all other dimensions of this world.” Throughout time, many have written of the lack of a vocabulary to describe pain. Virginia Woolf noted that if there were a language for pain, it would have to be obscene. Doctors often treat the disease or wound, losing sight of the person suffering from the disease or wound – a template of pain rather than a person in pain.
It is estimated that more than six billion people worldwide lack access to adequate pain relief. Opioid analgesics, including morphine, are considered essential medicines by the World Health Organization, yet 85 percent of the world’s population consumes just seven percent of the global annual use of pain medications. It is estimated that these low- and middle- income countries account for 70 percent of cancer deaths and 99 percent of HIV/AIDS deaths, two of the most common illnesses that result in intense, end-of-life pain.
In Kenya, it is estimated that deaths from cancer and or HIV/AIDS results in about 85,000 deaths annually, with an estimated 51,000 of those spending their last months in moderate to severe pain. Based on the amount of pain medications that the Kenya Medical Supplies Agency ordered through the International Narcotics Control Board in 2012, and assuming an average dosage of x of morphine for the last three months of a person’s life, only two percent of the 51,000 deaths are treated with adequate pain medication, leaving more than 49,000 to spend their last months in unnecessary suffering.
Because developing countries like Kenya lack much of the necessary health infrastructure for early diagnosis, diseases such as cancer are only diagnosed in their advanced stages (about 80 percent of cancers in Kenya), often beyond treatment.
In its 2010 report, Needless Pain, Human Rights Watch estimated that hundreds of thousands of children in Kenya suffer from illnesses that leave them in extremity. Even the youngest experience tremendous suffering, as a July 2014 British Journal of Medicine article stated that most of the procedures performed in the neonatal wards of Kenyan hospitals were performed without analgesics.
Treatment for pain, access to opioid analgesics such as morphine, is in itself accessible and inexpensive. Morphine is considered the most effective treatment for severe pain – it is safe, effective, plentiful, inexpensive, and easy to use. It can also do the most to relieve suffering and may also extend survival. The World Health Organization classifies oral morphine as an essential medicine, as does Kenya’s own drug policy. Yet the Kenyan Government does not purchase nearly the amount it needs annually. It is estimated that less than ten percent of Kenya’s 250 hospitals have regular access to morphine.
According to the American Cancer Society's Treat the Pain initiative, a web of barriers force millions to live and die with treatable pain. These barriers include legal and regulatory restrictions, cultural misperceptions about pain, stigmas and taboos attached to death, inadequate training of health care providers, poorly functioning pharmaceutical markets, generally weak health systems, strict drug trafficking laws, and concerns about diversion, addiction and abuse.
Key to addressing this is reform in world drug policies through the International Narcotics Control Board. Many countries, recognizing the INCB’s emphasis on criminalization and punishment rather than creative, alternative approaches to national and global drug issues, are looking to the United Nations General Assembly on the World Drug Problem (UNGASS) in April 2016 to make inroads into these policies. The importance of changing these restrictive measures for pain alleviation is to assist countries in distinguishing between policies that focus on drug trafficking and the necessary policies on narcotics that can bring relief to their citizens – wholesale bans and restrictions err on the side of criminalization. Important to build into this is education at the local, national and global levels about the impact of the current preventive policies on individual lives and deaths.
But treating the pain itself is often not enough. Palliative care – preventing suffering and improving the quality of life – needs to become a necessary component of the health system, especially for children. Palliative care, common in countries like the U.S., is just developing in many low- to middle-income countries and is often focused on adults.
In Kenya, palliative care is focused on active pain management and psychological stress management. The World Health Organization has defined palliative care as an approach that improves the quality of life of patients and of their families facing problems associated with life-threatening illnesses, through the prevention and relief of pain and suffering by also addressing physical, psychological and spiritual issues.
On the 13th of November 1964, Kenya became the fortieth country to accede to the Single Convention on Narcotic Drugs, 1961 which obliged countries to work towards universal access to narcotic drugs necessary to alleviate pain and suffering. Despite this, many patients continue to suffer pain without treatment. Article 28 of the Bill of Rights of the Kenyan Constitution states that every person has inherent dignity and the right to have that dignity respected and protected. Palliative care seeks to give back this dignity to patients who have lost it through their experience with chronic disease and pain. However most patients do not get this dignity and care.
The Kenya Hospices and palliative care association, is a national association representing hospices and palliative care in Kenya. It has been the leading cancer advocacy platform in Kenya that has been able to establish 65 hospices and palliative care centers in the country. So why are people still having difficulty accessing palliative care and pain medication?
Speaking to different stakeholders within the palliative care industry, there are a couple of reasons why this is the case in Kenya. Dr Zipporah Ali, the Managing Director of KEHPCA mentioned that their were policies, guidelines and curriculums in place around palliative care to meet the growing demand of palliative care. The WHO has identified 85000 new cases of cancer a year in Kenya. This numbers however are much higher than the 30000 new cancer cases and 28000 deaths recorded by the Kenyan government each year. The problem of palliative care and access to pain medication is holistic and multifaceted in nature. Based on the conversations we had with the different stakeholders working within this issue, a number of factors are still contributing to only 10% of the cases are accessing palliative care and pain medication.
Awareness within the Kenyan community on screening and diagnostic has been one of the key obstacles. Dr Joseph Kibachio, notes that though screening centers and awareness information is available, the Kenyan community is still oblivious about cancer detection. He insists that early detection of cancers through awareness, screening and diagnostics will help reduces the number of lives lost to the disease. Moreover, people at all levels of care don't know what palliative care is even though all chronic diseases are in need of palliative care and access to pain medication. Pain management and palliative care is still not integrated in the Kenyan medical schools, only very little is taught about management of chronic pain. Medical and Nursing school curricula do not include instruction on palliative care and pain treatment, meaning that many healthcare workers have inaccurate views of morphine and lack the knowledge and skills to treat pain adequately.The KEHPCA are implementing the principles of palliative care into the nursing council, doctors and pharmacy curriculum. This will help integrate the much needed component of awareness in the medical field.
Dr Faith Mwangi-Powell and Dr Ali, spoke of the lack of resources around the issue. The bulk of the financial investment for palliative care comes from international NGOs and foreign development agencies and donors. According to the Clinton Health Access Initiative, there is no clear incentive structure make a case for pain medication for palliative care. This means that the essential medication used to treat malaria and HIV can be clearly quantified with regards to numbers benefiting on the ground. In the case of pain medication, the situation seems to be siloed into investment and quantifiable benefits. There isn't sufficient quantifiable economic benefits to lobby for more investment. The declining Kenyan shilling against the dollar rate is one of the factors limiting suppliers in Kenya. Though there are plans of starting manufacturing of morphine within Kenya.
The issue about morphine is all encompassing. The amount imported into Kenya is 47kilos , though this doesn't in any way meet the demanded need of 400kilos, some of it is left to expire in storage. Why is this so? Well, Dr Zipporah Ali, iterated that there are still some misconceptions around the prescription of morphine. Older doctors, still believe that morphine like any other morphine can lead to addiction. This prevents many of them from writing prescriptions though the patient is in pain. Also, under Kenyan law nurses are not able to deliver true palliative care since they cannot prescribe the appropriate analgesics. However, Dr Ali through the KEHPCA are advocating for use of pain medication for palliative care and other chronic diseases. This has been seen to work within the Kenyatta National Hospitals in the burn unit ward, where oral and injected morphine helps alleviate the suffering of the patients. This has been done with the help of Dr Esther Munyoro who is in the frontline of advocacy ofKenyatta National Hospital and other level 5 hospitals to become 'pain free' hospitals. This means educating the nurses and doctors in identifying pain in a patient and the pharmacist in making adult and pediatric doses of morphine. Moreover, since the ministry of health and narcotics drug control regulationshas classified morphine under the Dangerous Drugs Act, there are regulations in place that ensure there is no misuse or exploitation of morphine. The enforcement practices impose unnecessary restrictions that limit access to morphine and other opioid pain relievers. They create excessively burdensome procedures for procurement, safekeeping and prescription of these medications and sometimes discourage health care workers from prescribing narcotic drugs for fear of law enforcement scrutiny.
The Ministry of Health Kenya is fighting an uphill task with the current policies and legislative framework. During their recent launch of the Non-Communicable Diseases strategy, cancer has been listed as the key focus area with regards to creating an enabling framework for prevention and control. The rising cases of cancer to think of preventive ways of reducing the number of new cases. Evidence shows that upto40% of global cancers are preventable through interventions such as tobacco control, reduction of alcohol consumption, protection against exposure to environmental and occupational carcinogens, promotion of healthy diets and physical activity. The Ministry of Health Kenya, key interventions to be prioritized include primary prevention, early detection, effective diagnosis and treatment, pain relief and palliative care, cancer research and surveillance, monitoring and evaluation and proper coordination of cancer control and prevention activities. While early detection ensures favorable outcome and prognosis of most cancers, about 80% of reported cases are detected at an advanced stage when very little can be achieved in terms of treatment. Some of the challenges the healthcare infrastructure in Kenya is facing include inadequate early detection services, weak referral systems, poor treatment and palliative services. Achieving universal coverage for the key cancer control interventions will therefore be vital in halting and reducing the rising burden of cancer in Kenya.
Changing the Paradigm
With the different approach to patients and disease, Dr Faith Mwangi-Powell insists on changing the disease-based mindset to a patient-based mindset. The patient should be placed in the middle of all policies and frameworks in order to fully understand how to create supporting frameworks to manage their diseases.