Seven-year-old Rehema Nakawuka probably has weeks to live. She was diagnosed with Rhabdomyosarcoma, otherwise known as cancer of the muscles. A tumour developed inside her right ear. The cancer is in advanced stages, and the swelling in the ear is as big as the size of an avocado fruit. You would expect Rehema to be crying in pain. However, she smiles at everyone she meets.
Rehema’s secret? Morphine.
This controlled medicine is changing the lives of many patients with life-threatening conditions in Uganda, including the terminally ill, even if it is just for a while.
“Morphine is a good pain killer which provides pain relief. And that is what palliative care is about,” says Resty Nakanwagi, a clinician at Hospice Africa Uganda.
The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients (adults and children) and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and thorough assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
Providing palliative care is in line with the social development goal number 3.8 which seeks to ensure healthy lives and promote well-being for all at all ages.
In Uganda, the provision of palliative care services started in 1993 with the establishment of Hospice Africa Uganda (HAU). In 1999, the Palliative Care Association of Uganda (PCAU) was established to provide leadership and coordination of civil society efforts towards the integration of palliative care in the country’s health care system working collaboratively with the Ministry of Health. The country has since realised several milestones and registered globally recognised best practices.
Palliative care is integrated in 2015-2020 Uganda’s Health Sector Strategic/Development. Palliative care is also included in the mission statement of the national health policy as well as within the minimum health care package for the country.
In 2004, Uganda was the first country in the world to allow specially trained palliative care nurses to prescribe morphine for pain control, a responsibility still left to qualified medical personnel in many of the African countries and a major barrier to access of controlled medicines in rural settings.
The World Health Organization and World Hospice and Palliative Care Association (2014) mapping of the levels of global palliative care development highlights Uganda as the only country in Africa which had achieved advanced integration of palliative care into mainstream service provision. In October 2015, the Quality of Death Index published by the Economist Intelligence Unit, ranked Uganda as the second in Africa after South Africa and 35th globally out of the 80 countries studied. Parameters of measurement included: palliative and healthcare environment; human resources; affordability of care; quality of care and community engagement. The 2017 African Palliative Care Association Atlas of Palliative Care in Africa also shows Uganda is one of the countries with the highest number of palliative care service centers in Africa.
The Palliative Care Association of Uganda (PCAU) in partnership with the Ministry of Health and other partners have seen the spread of palliative care services to about 94 districts of Uganda. Almost all Referral Hospitals have established palliative care units, and 13 stand-alone hospice organisations offer palliative care across the country.
In addition, for those who are discharged from hospitals like Rehema, there is a home care model used by Hospice Africa Uganda, to reach them for continued care.
“Hospice has a good working relationship with Uganda Cancer Institute. They allow us to talk to people about morphine, and then follow them up at home. That is how we met Rehema. We are able to follow her home, help her with cleaning of the wound, and she can be given morphine prescription back home,” says Nakanwagi.
“The Cancer Institute doctors also refer Palliative Care patients to Hospice,” she explains further.
Why oral morphine and not any other narcotic medicine?
Dr. Ludoviko Zirimenya, The Clinical Director at Hospice Africa Uganda says that they follow the ‘three-step analgesic ladder which was designed by the WHO to manage pain among patients.
“On that ladder, that is where oral morphine is. Because it is cheap and accessible. And easy to use,” he explains.
“You don’t need to come to hospice to access it. We have trained health workers and volunteers to help with prescribing and administering,” he says.
Manufacture and distribution of morphine in Uganda
Hospice Africa Uganda is licensed by the National Drug Authority to import the morphine powder or opium powder and then reconstitute it into liquid form. Since 1993, when Oral Liquid Morphine was introduced in Uganda, the production is done at Hospice’s Morphine Production Unit based at the organization’s head offices in Makindye, a Kampala suburb.
The unit is manned with about seven members of staff who use basic equipment to put together the ingredients – including opium powder, preservatives, colour and liquid.
“It is a simple process. In a day, we could produce one batch. It contains 900 bottles of 500 mls,” explains Monica Nannono, a quality chemist at Hospice Africa Uganda.
Once the bottles are packed, the batch is well sealed, and expiry dates indicated, the batches are sent to the National Medical Stores, which in turn sends them to health facilities. The batches that go to the private facilities are sent through the Joint Medical Stores.
The milestones so far?
Nearly all Referral Hospitals have established palliative care units. There are 13 standalone hospice organisations that offer palliative care across the country.
Nannono also says NMS gives orders about three times a week. Therefore, that means the demand is great. Morphine is available,’ says Nannono.
Ziremeye also says: “Morphine can be accessed at the majority of health facilities offering palliative care in Uganda. Our health care tends to focus on curative measures. Morphine offers comfort for those who are going to die.”
Fatia Kiyange, the Programmes Director at the African Palliative Care Association also concurs and says people no longer have to die in pain.
“Besides patients get it free of charge. We thank the government of Uganda for supporting us,” says Kiyange.
She adds that Uganda has become a model for other countries.
“We have become a learning center. Some countries are not where we are today. They come here to learn from us and see how we integrate palliative care in our health systems,” says Kiyange.
Despite the above achievements and milestones, Uganda still has a significant unmet need for palliative care and pain relief services. Currently only 11% of those who need of pain control within the wider context of palliative care access it.
The Health Sector Development Plan also shows that hospice and palliative care services are being offered in only 4.8% of the hospitals in the country. This plan lists palliative care services as one of the development priorities towards achieving Uganda’s health sector objectives. Furthermore, the 2017 APCA African Atlas of Palliative Care shows gaps in policy, education, service delivery, access to medicines and data collection challenges.
In Uganda, the Narcotic Drugs and Psychotropic Substances (Control) Act (herein after ‘the NDPS Act) seeks to control illicit use and diversion of narcotic drugs and psychotropic substances that have to be controlled. It also seeks to address the large question on narcotics abuse and therefore introduces a more rigorous criminal law against drug abuse.
However, the Act is silent on the 2004 Statutory Instrument on the prescription and supply of certain narcotic analgesic drugs. It is feared that this might reverse the palliative care gains, including best practices in the country that had been registered as a result of the instrument if not addressed. The Act also entirely omits the mention of palliative care in its language and scope of operation, yet this is important as issues of control of narcotic drugs directly affect access to palliative care services.
Dr. Jacinto Amandua, a palliative care consultant, explained that the new law only allows medical practitioners to prescribe narcotic medicines. In this case, medical practitioners means only a person registered under Medical and Dental Practitioners Act, all of whom who are doctors and not nurses.
At the same time, Section 4 of the Act says that except for the medical practitioner, any other person found to be holding the drug will be liable to a fine or imprisonment of not less than one year.
“The law has closed doors. If the nurse is taking the medicine to a patient who is receiving palliative care from home, the law will catch them. It is criminal. Yet we have few doctors in our health care system,” says Amandua.
Currently, PCAU is holding frantic engagements with the government to ensure that the new legislation does not affect palliative care. Dr Amandua recommends that the Ministry of Internal Affairs and the Ministry of Health develop regulations to ensure the availability and accessibility of controlled medicines at all costs.
On accessibility, Kiyange says there is need to train pharmacists countrywide to ensure that they know the benefits of morphine.
“Sometimes you hear of stories that it morphine is not available at the health facilities. Maybe it is because it has not been ordered,” she says.
She also calls for mechanisms to make health facilities accountable. “Sometimes, the health care workers to provide it are not there,” says Kiyange.
She further calls for a mechanism that elaborates what families need to do with unused morphine when patients die.
The State Minister of Health in Charge of General Duties, Sarah Opendi says the government committed to cooperating with PCAU and Hospice Uganda to make a difference in the lives of many patients living with life-limiting conditions, including the terminally ill.