Help HIV-positive children in pain, urges HRW

A new report by Human Rights Watch (HRW) says the Kenyan government needs to do more to provide palliative care for children with chronic illnesses, including cancer and HIV/AIDS.

"Many children in Kenya, including those who are suffering from cancer and HIV/AIDS, are undergoing excruciating pain because they have no access to palliative care," Julianne Kippenberg, HRW's senior researcher on children's rights, said at a press conference in the capital, Nairobi. "These children are living and dying in agony."

The report, Needless Pain: Government Failure to Provide Palliative Care for Children in Kenya, notes that while the government has made tremendous progress in rolling out services such as antiretroviral therapy (ART), much more had to be done to alleviate pain.

"For children living with HIV, health workers and the government have the misconception that providing antiretroviral drugs alone is enough, but they must start providing pain-relieving drugs for the pain associated with HIV," Kippenberg said.

The report cites the lack of a national policy on palliative care, a shortage of palliative care services geared towards children, poor availability of treatment for severe chronic pain and a lack of guidance for health workers on the use of opioids as some of the major hurdles to children's access to proper pain management.

Celestine Juma's four-year-old daughter has been living with HIV since she was born. Juma's daughter receives paediatric ART from Nairobi's Kenyatta National Hospital, but she says it is tough to watch her suffer when she has opportunistic infections.

"It is difficult when she has sores in her mouth and even between the fingers - they appear and she cries. I can't give her food with a spoon because it hurts," she said. "When I go to the hospital, they just tell me to buy Panadol [Paracetamol]."

Unable to eat much due to her mouth sores, Juma's daughter is dangerously emaciated and looks much younger than her four years.

Overburdened staff

Zipporah Ali from the Kenya Hospices and Palliative Care Association (KEHPCA) says lack of training and poor attitudes of healthcare professionals are partly to blame.

"Many health professionals in government hospitals are overburdened and tend to concentrate on medical procedures at the expense of palliative care - many more do not assess pain in patients with terminal illnesses," she said. "They lack the skills to prescribe opioid-based drugs, even when available."

The KEHPCA is working with the government to provide palliative care for patients with HIV and cancer in 10 government hospitals across the country.

A doctor at Kenyatta National Hospital told IRIN/PlusNews on condition of anonymity that the prescription of most strong pain medication - when it was available - was restricted.

It is difficult when she has sores in her mouth and even between her fingers - they appear and she cries... When I go to the hospital, they just tell me to buy Panadol [Paracetamol]

"As we speak, there is little morphine here at Kenyatta - what we have, some of it has expired," he said. "Only a medical doctor can do that [prescribe strong painkillers] and not all patients who come are seen by doctors.

"Opioid-based drugs can also be used as narcotics - that is another fear health providers have," he added.

While the UN World Health Organization recommends the provision of morphine and other opioid-based drugs and the Kenyan government lists them as essential medicine, they are not widely available in government health facilities.

Integrated approach

Today's report urges the government to "not just improve pain treatment for children, but better integrate the full range of paediatric palliative care services into its health system".

In 2008, HRW organization criticized the government for failing to pay adequate attention to paediatric ART – at present, just 24 percent of children who need ART have access to it.

Efforts to reach Kenyan government officials for reaction to the HRW report were unsuccessful. However, according to the latest UN General Assembly Special Session on HIV/AIDS country progress report on Kenya, many NGOs, civil society and government officials felt most people in need did not have access to palliative care and treatment of common HIV-related infections.

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