June 2, 2011

Summary

Every year, tens of millions of people around the world with life-threatening illnesses suffer unnecessarily from severe pain and other debilitating symptoms because they lack access to palliative care, an inexpensive health service that aims to improve the quality of life of people with serious health conditions. As Human Rights Watch has documented, their suffering is often so intense they would rather die than live with their pain.

Although the World Health Organization (WHO) considers palliative care an integral component of cancer care and has urged countries to improve its availability, too often palliative care continues to be the neglected child of the health care family, receiving low priority from health policy makers and health care professionals and almost no funding. This is despite the fact that experts estimate that 60 percent of those who die each year in the developing world—a staggering 33 million people—need palliative care.[1] In part, this is because most cancer patients in developing countries are diagnosed when they have advanced disease and cannot be cured, so the only treatment option is palliative care.

Fifty years ago this year, the world community adopted the 1961 Single Convention on Narcotic Drugs, which stated that narcotic drugs are “indispensible for the relief of pain and suffering,” a core function of palliative care. It also instructed states to make adequate provision to ensure their availability. Yet, today these essential pain relieving drugs continue to be so poorly available in most of the world that WHO estimates that each year tens of millions of people suffer untreated moderate to severe pain, including 5.5 million terminal cancer patients and 1 million patients in the last phases of HIV/AIDS.[2]

In 2009 and 2010 Human Rights Watch surveyed palliative care experts in 40 countries to map the barriers that impede the availability of palliative care and pain treatment worldwide. We asked them about the situation in their country in three areas that WHO has said are critical to the development of palliative care: health policy, education of healthcare workers, and drug availability. We also analyzed publicly available data from all countries on consumption of opioid medications that can be used to treat chronic pain and compared them to cancer and AIDS mortality data to assess how well the need for pain treatment is met.

We found enormous unmet need for pain treatment. Fourteen countries reported no consumption of opioid pain medicines between 2006 and 2008, meaning that there are no medicines to treat moderate to severe pain available through legitimate medical channels in those countries. In a further eight countries that do not report their consumption of opioids, the situation is likely similar, as governments participating in the international drug control regime will not export opioids to those that do not. Thirteen other countries do not consume enough opioids to treat even one percent of their terminal cancer and HIV/AIDS patients. These countries are concentrated in Sub-Saharan Africa, but are also found in Asia, the Middle East and North Africa, and Central America.

Some of the world’s most populous countries have very poor availability of opioids for pain relief. Consequently, in each of China, India, Indonesia, Nigeria, Russia, and South Africa, at least 100,000 people die from cancer or HIV/AIDS each year without access to adequate pain treatment. The combined suffering due to lack of opioid pain medicines worldwide is staggering. Our calculations confirm that more than 3.5 million terminal cancer and HIV/AIDS patients die each year without access to adequate pain treatment, a very conservative estimate that assumes that all opioids are used to treat this patient group. It should be considered merely an indicator of the enormous unmet need for pain treatment. In reality, the limited opioids that are available are used to treat patients suffering pain from other causes too. So the real number of terminal cancer and HIV/AIDS patients with untreated pain must be higher, and many other patients with non-terminal cancer, HIV/AIDS, and with other diseases are also suffering untreated pain.

In many of the 40 countries surveyed we found multiple barriers to palliative care in each of the three areas. Only 11 of the countries surveyed have a national palliative care policy, despite WHO’s recommendation that countries put in place such policies. Most of the countries surveyed have inadequate opportunities for medical education in pain management or palliative care and in four of the countries surveyed–Cameroon, Ethiopia, Jordan, and Tanzania–no such education is available at all.

Thirty-three of the forty countries surveyed impose some kind of restrictive regulation on morphine prescribing that is not required by the international drug conventions. Thirty-one of the countries require that a special prescription form be used to prescribe morphine, and fourteen require doctors to have a special license to prescribe morphine. Although WHO has recommended that countries consider allowing nurses to prescribe morphine in order to improve accessibility to this essential medicine, only three countries (the United States and Uganda) do so.[3]

Our survey also identified some bright spots. Countries like Colombia, Jordan, Romania, Uganda, and Vietnam have undertaken comprehensive reform programs to improve access to palliative care. In these countries, leaders from the medical community have worked with domestic and international NGOs and their own governments to assess what barriers are preventing patients from accessing pain treatment and to address these barriers through policy development, law reform, and improving medical education and drug supply.

Governments have an obligation to address the widespread and unnecessary suffering caused by the poor availability of palliative care worldwide. Under international human rights law, governments must ensure equal access to the right to health and take reasonable steps to protect all against inhuman and degrading treatment. This should mean that health policies address the needs of people who require palliative care services; that healthcare workers have at least basic palliative care knowledge and skills; that medications like morphine are available throughout the country; and that drug regulations do not impede the ability of patients facing severe pain to get appropriate treatment. Failure to take such steps will likely result in a violation of the right to health. In some cases, failure to ensure patients have access to treatment for severe pain will also result in violation of the prohibition of cruel, inhuman, and degrading treatment.

The international community should address the poor availability of palliative care with urgency. Although WHO has urged countries to ensure the availability of palliative care, its governing body, the World Health Assembly, has largely been silent on the issue, despite the large numbers of people who require palliative care and the great suffering lack of palliative care causes. It needs to urgently show leadership and instruct its members to take effective steps to improve palliative care.

In recent years, the UN drug policy bodies, the Commission on Narcotic Drugs (CND), the UN Office on Drugs and Crime (UNODC), and the International Narcotics Control Board (INCB), have significantly increased the amount of attention that they pay to the availability of strong pain medications. In 2010 CND adopted a resolution on the issue, and UNODC discussed it prominently in the World Drug Report, its flagship publication. In 2011 the INCB published a special supplement to its Annual Report devoted to this issue. Improving access to essential medicines should be one aspect of a greater emphasis on promoting human rights within the UN drug policy bodies’ work. To mark the 50th anniversary of the 1961 Single Convention on Narcotic Drugs, these UN bodies should build on this momentum and develop concrete plans to implement the CND resolution and the INCB’s recommendation.

[1]J. Stjernsward & D. Clark, Palliative Medicine: A Global Perspective, in Derek Doyle et al., eds., Oxford Textbook of Palliative Medicine (Oxford: Oxford University Press, 3rd ed., 2003) pp. 1199-1222.

[2] “Briefing Note: Access to Controlled Medicines Program,” World Health Organisation Briefing Note, February 2009, http://www.who.int/medicines/areas/quality_safety/ACMP_BrNoteGenrl_EN_Feb09.pdf (accessed August 6, 2010).

[3]In the United States, most, but not all states, allow nurses to prescribe morphine. In Cameroon nurses with training in palliative care prescribe morphine, but it is not clear whether the law authorizes this.