Norah Nanziri's days have fallen short of pain. As she lies on a crowded mattress at her home in Makindye, she is at ease telling the story of her life from illness to recovery. The 40-year-old is currently undergoing palliative care for advanced rectal cancer.
"Before I started receiving this kind of treatment, I had a lot of pain passing out waste and sometimes, I passed out only blood and pus," Nanziri narrates, "In fact, I used to hold onto walls for hours when I was easing myself."
After rounds to Nsambya and Mulago hospitals yielded no relief, Nanziri finally settled for Hospice Clinic in Makindye where she was given free chemotherapy and Morphine, a drug for controlling severe pain. She even underwent spiritual and psychological rejuvenation through prayers and counselling.
Today, Nanziri can sit upright and easily excretes notwithstanding the pain she lived with for a year. The World Health Organization defines palliative care as an approach that improves the quality of a patient's life facing problems associated with life-threatening illnesses through early identification and treatment of physical, psychosocial and spiritual pain.
It's usually availed to cancer and HIV/Aids patients. Such treatment, while not curative, prolongs life for a considerable period of time and restores the quality of life.
However, access to life-saving medicines like Morphine for palliative care patients like Nanziri, is now threatened by anti-counterfeiting laws. This was revealed last week during the launch of 'The Development of Palliative Care in Uganda' report in Kampala.
"This is increasingly happening through the enactment of legislation in East Africa ostensibly to fight counterfeits but is in actual sense tightening enforcement of intellectual property rights as a step towards banning generic drugs," Binaifer Nowrojee, the director of the Open Society Initiative for Eastern Africa (OSIEA) said.
Kenya enacted such a law in 2008 and the East African community is considering a regional law that will supersede national laws on anti -counterfeiting. Nowrojee added that the problem of poor-quality medicines will not be contained by enlarging the application of intellectual property rights in order to ban generic medicines. Rather, regulatory services need to be strengthened to oversee the quality, safety and efficacy of medicines on the market.
Palliative care in Uganda
With an increase in of HIV (130,000 new infections annually) and cancer in Uganda, the need for palliative care is on the rise.
"No human right affects us as much as health and caring for people with lifelong illnesses is a universal challenge. We all need comfort, dignity and freedom from debilitating physical pain and this is what palliative care ensures," Nowrojee says.
The need for palliative care is intensified by the fact that the health care system is underfunded with government expenditure providing $1.67 (about Shs 5,000) per person annually and yet the ministry needs at least $4 (about Shs 10, 000)
According to Rose Kiwanuka, the country director for the Palliative Care Association of Uganda (PCAU), there is a wide gap between health care services in rural and urban areas and hence the need to extend coverage for palliative care.
Among the factors slowing down palliative care service provision in Uganda are: inadequate trained health professionals, lack of clear understanding and targets for palliative care, inadequate awareness, support and training institutions.
"Palliative care development requires policies covering the training of health workers, ensuring that they are legally allowed to prescribe opioids including morphine and integration of the care into the country's mainstream clinical services," Dr Jacinto Amandua, the commissioner of clinical services in the ministry of Health says.
Management of severe pain and symptoms among cancer and HIV/Aids patients started in 1993 when Dr Anne Merriman, on a feasibility study for a model hospice, introduced palliative care services.
In the same year, government imported oral Morphine and services were first delivered at Nsambya hospital. Expansion of these services beyond Kampala started in 1998 with the establishment of Mobile Hospice Mbarara (MHM) and Little Hospice Hoima (LHH).
Today, palliative care is spread in over 61 districts and at least one health facility in each region provides the service. Despite the absence of a stand-alone palliative care policy, palliative care is recognized as an essential clinical service with strategies for expansion in the 2010 Health Sector Strategic Investment Plan (HSSIP).