NAIROBI, KENYA – Jane Atieno lives in Kibera, Kenya’s largest slum. Hers is a sadly typical story of AIDS, pain and death.
Atieno says her husband got sick in December of 2005. She took him to the hospital and found that he was in the advanced stages of AIDS. She tested positive too. Their baby daughter, Amelo, was HIV positive when she was born in 2006. But it was not only the cycle of AIDS that Atieno says was so difficult. It was watching her daughter suffer many of the painful symptoms of her condition without any pain medication or palliative care, thanks to Kenya’s strict policy that only provides pain medication to terminally ill patients in limited situations. Here, the more than 150,000 children who are HIV positive rarely receive anything stronger than aspirin to damper their pain.
“My daughter suffered a lot. She was in constant pain,” Atieno says. “It was tough to watch her suffer that way.” Amelo, like many children with HIV, suffered from opportunistic infections and other painful reminders of the disease. While Amelo did receive free access to antiretroviral medication, ARVs, until she died in 2008, she never received any painkillers to ease the migraines, muscle cramps, mouth sores, joint pain, painful swallowing, peripheral neuropathy, chest pain, earaches or other agonizing symptoms of an HIV infection.
In September, Human Rights Watch released a 78-page report entitled, "Needless Pain: Government Failure to Provide Palliative Care for Children in Kenya," that revealed most children with diseases like cancer and HIV/AIDS do not receive palliative care or pain medication because national law categorizes pain killers solely as narcotics and offers them to patients only in rare circumstances, exacerbated by the country’s shortage of trained pharmacists. The Human Rights Watch report suggested that children here receive little to no pain management options or palliative care.
In the six weeks since the report was released, a growing resistance is emerging in local hospital wards and among healthcare workers here who say that are tired of watching children suffer from preventable pain.
More than 1.5 million Kenyans are living with HIV/AIDS, including 150,000 children. It is widely known that people with HIV often experience severe pain during the course of the disease, whether or not they receive antiretroviral drugs. But new research indicates that inexpensive pain medicines can improve adherence to HIV treatment and decrease patient suffering. Health care workers here say they seek to provide one drug in particular – oral morphine. But a shortage of trained pharmacists and locations that specialize in palliative care has left the inexpensive drug out of the majority of all health facilities in Kenya.
Categorized as a narcotic under the Narcotics and Psychotropic Substances Act of 1994, morphine is rarely dispensed by prescription and can only be administered by a trained doctor in less than three percent of all health care facilities in Kenya.
The World Health Organization considers oral morphine to be an essential medicine for treating chronic pain, as does Kenya's own drug policy – yet the drug is not listed on the “essential drug list” in any government hospital. A daily dose of the drug costs just a few cents, yet the Kenyan government does not purchase oral morphine for public health facilities. Morphine is available in just seven of the country's 250 public hospitals and clinics. Although 250,000 people in Kenya receive free access to antiretroviral treatments, all the morphine currently available in the country could treat the pain of only 1,500 terminally ill patients.
Cathy Otieno, a pharmacist working for Laborex Kenya Ltd., a local pharmaceutical company, says even the small amount of morphine the country has is not being utilized. "The usage is what is lacking,” she says. “Right now, it is only stored by a physician and only a pharmacist is allowed to dispense and prescribe it.” As Kenya continues to face a shortage of pharmacists and health care professionals trained in treating pain, patients and parents of patients say they wish palliative care and pain relief would become part of routine AIDS treatment.
The Kenya National Pharmaceutical Policy of 2008 acknowledges the nationwide shortage of pharmacists. “The numbers of pharmaceutical personnel has increased with time, but they are still insufficient relative to the population,” the policy report revealed. Today, there is just one pharmacist for every 10,300 hospitalized persons. What’s more, most pharmacists are concentrated in the private sector and in urban areas. “As a result, the quality of pharmaceutical services is compromised,” the report concluded.
Dr. Zipporah Ali, national coordinator of the Kenya Hospices and Palliative Care Association, KEHPCA, agrees that the lack of training for healthcare professionals is to blame for the lack of pain management here. "Many health professionals in government hospitals are overburdened and tend to concentrate on medical procedures at the expense of palliative care,” she says. “Many more do not assess pain in patients with terminal illnesses. They lack the skills to prescribe opioid-based drugs, even when available."
For Atieno, who watched her daughter suffer for two years without so much as aspirin prescribed in conjunction with her ARVs, she says it was clear to her that health care professionals in Kenya simply did not know how to assess or effectively treat pain in children.
One nurse working at the largest government hospital in Nairobi, who requested anonymity because of a policy that prevents staff from speaking to the press, says morphine is not considered an essential drug and is not on the Essential Drug List used by all hospitals in Kenya. What’s more, she says nurses are taught that opioids frequently lead to addiction and are avoided because of that generalization.
“Drugs are procured on a quarterly basis and as we speak, there is little morphine here at our hospital and some of it has expired,” she says. “Only a medical doctor can prescribe strong painkillers and not all patients who come are seen by doctors. It must also be dispensed by a pharmacist.”
The nurse says that morphine, an opioid, can also be used as a narcotic, which is why it is so regulated. But the fear of illegal use and addition is leaving thousands of chronically ill patients in pain. The most common drug prescribed to patients suffering from HIV/AIDS and even injury accidents is acetaminophen – a common over the counter pain reliever.
Ali of KEHPCA, the nation’s only palliative care organization, says while all HIV/AIDS patients experience pain, the majority have no access to pain killers in Kenya. Though she notes that the same is true in most African countries thanks to strict drug policies throughout the continent.
And drug policy in Kenya is strict, with hefty fines and jail time accompanying any drug related offense. The Anti Narcotics Unit enforces all drug related offenses. Penalties include 10 years in prison for the possession of cannabis and 20 years in prison, plus a fine of one million shillings, for the possession of a narcotic. The street version of morphine, heroin, is expensive and dangerous to procure, but some patients say they take the risk.
According to Otieno of Laborex, one dose of oral morphine costs less than $1 USD and is cheaper than some over the counter pain relievers.
While hundreds of thousands of chronically ill adults are also suffering from inadequate pain management, Julianne Kippenberg, senior researcher on children's rights with Human Rights Watch, says the situation is even worse for children in Kenya. "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," she says.
The new Human Rights Watch 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.
“Children with HIV/AIDS experience pain throughout the course of the disease. Initially, periodic pain associated with procedures may be tantamount, but as the disease progresses and children reach the end of life, pain and pain management become more complex,” says the government nurse who spoke on the condition of anonymity. She says there is an immediate need to develop an appropriate pain management strategy that includes pharmacologic and nonpharmacologic therapies tailored to a child's age, development, culture, type of pain and past experience.
Though hospice care has been available in Kenya since 1990, there are only 30 facilities in the country. None of which specialize in treating children.
Ali of KEHPCA says she is advocating for palliative care to be included in the new healthcare system as a basic human right. "Effective pain management is central to scaling-up palliative care in Kenya, resulting in improved quality of life for patients with severe pain," she says. "Recommended drugs for pain such as morphine and other opioids must be available and accessible to all patients enduring pain."
Kippenberg says Kenya did not receive negative marks across the board. She praised the government for establishing a handful of palliative care units in recent years, but stressed the need to focus on children’s care.
Human Rights Watch called on the Kenyan government to make oral morphine available in all public hospitals, to ensure that health care workers are trained in palliative care, and to integrate children's palliative care into its health services immediately.
"The Kenyan government, and donors, should be working to improve pain treatment for everyone," Kippenberg said. "And they should make sure that the youngest and most vulnerable sufferers, sick children, are not left out. They should not be suffering needlessly."
