Many people living with HIV/Aids suffer pain needlessly
But a central issue has been absent from the debate. The optimistic figures gloss over the enormous pain suffered by millions of HIV patients - needless suffering that can be prevented. "Gerard," who died at the age of five in a Kenyan slum, was one of them. His mother described him as a lively and active boy who loved school, taekwondo and movies. Gerard suffered HIV-related complications, including persistent, severe abdominal pains. Sitting on her bed in her squalid home in Kibera, Gerard's mother quietly told us how she had tried unsuccessfully to treat him with ibuprofen, and how he died in great pain. HIV patients can suffer from various types of chronic pain - for example stomach pain, chest pain, nerve pain, and pain from HIV-related cancers. Pain is common not only among people suffering the last stages of Aids, but also in those who are taking antiretrovirals and living healthy, active lives.
But in Kenya, as in many other countries, HIV care often neglects assessing and treating pain. Gerard was getting antiretroviral drugs, but no proper pain treatment. Unfortunately, many health care workers - and patients - consider pain unavoidable. Yet, improving a patient's quality of life by treating pain and other symptoms - called palliative care - is an essential element of comprehensive HIV care. It can also help patients to keep taking their antiretroviral drugs. Curative and palliative treatment should work side by side for any patient with a life-threatening disease.
Essential pain drugs are often unavailable in Kenya's health facilities. Oral morphine, the mainstay medication for moderate-to-severe chronic pain, is available in just seven of Kenya's 250 public hospitals, and even these facilities sometimes run out. Cost is not the main obstacle; oral morphine is inexpensive. But as an opiate, morphine is seen by many as dangerous.
Because of a lack of training, healthcare workers often fear giving an overdose or causing addiction, which can be avoided with proper medical practice.
Even when morphine is available, doctors are often reluctant to prescribe it for children, mistakenly believing that means "giving up" on the child. Many health workers do not know that morphine can also be used to relieve chronic pain in children who are receiving successful treatment. One doctor with expertise in treating pain told us in despair: "When it comes to children, there is always some reservation. Putting a child on morphine is always a big issue ... Morphine is underutilised."
People living with HIV often experience nerve pain. "Susanne," who runs a small orphanage in Nairobi, told us that several children in her care suffered from a tingling pain in their hands and feet. Susanne complained that she could not buy gabapentine, a drug used to treat nerve pain, because it was expensive. Some alternative drugs to treat nerve pain, like amitriptyline, cost less, butare also often unavailable, and many doctors are unaware that they can be used to treat nerve pain.
The Kenyan government and donors have done a lot to fight HIV/Aids. The US alone supported Kenya's fight against HIV with more than $500 million last year. But the Kenyan government and donors have neglected to make pain treatment and palliative care an integral component of HIV care. They should urgently improve the availability of and access to morphine and seek to scale up the availability of child-appropriate drugs for nerve pain.
The government should also include pain treatment and palliative care in their HIV policies, and general health policy, and ensure that health care workers are sufficiently trained in pain treatment and palliative care, especially for children. If the government and donors act now, tens of thousands of Kenyans can live with HIV without suffering avoidable pain.
Juliane Kippenberg and Laura Thomas
Human Rights Watch...
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