Palliative Care and Pain Treatment in India
More than seven million people with life-limiting illnesses may need palliative care services in India each year.[23] For many, physical pain is the symptom of their most immediate concern: Experts estimate that roughly 1 million cancer patients[24] and hundreds of thousands of people living with HIV and AIDS face moderate to severe pain each year.[25] Other common symptoms of these incurable diseases include nausea, breathlessness, anxiety, and depression.
The vast majority of India’s population, however, does not have access to palliative care services: such services exist in only 14 of India’s 35 states and territories, according to Pallium India, one of India’s leading palliative care organizations.[26] Even in many regions where palliative care services do exist they are thinly spread, limited to a small number of medical institutions, and unavailable in communities. To date, Kerala is the only Indian state where palliative care services are available in every district.[27]
India’s low consumption[28] of morphine is indicative of the poor availability of palliative care. In 2008 India used an amount of morphine that was sufficient to adequately treat during that year only about 40,000 out of the estimated 1 million patients suffering from moderate to severe pain due to advanced cancer, about 4 percent of those requiring it.[29] If one takes into consideration other patients who suffer from such pain, like people with cancer that is not advanced, HIV and AIDS, and various other conditions, the actual coverage of pain treatment with morphine is considerably lower.
Even though the majority of cancer and HIV patients in India require palliative care services, most cancer hospitals and HIV clinics have no palliative care departments, do not offer any palliative care services, and do not even stock morphine. Eighteen of India’s twenty-nine regional cancer centers—cancer centers that are supposed to offer comprehensive cancer care—have no palliative care. None of the country’s growing network of ART centers and community care centers specifically provides palliative care (although some of the counseling services that are offered could qualify as palliative services). None have morphine or other medications to treat moderate to severe pain.[30] One study that looked at prevalence of pain and other symptoms among people living with HIV found that only about a quarter of HIV patients reporting pain had received any kind of pain treatment.[31]
Palliative care in the community
While Kerala has a sprawling network of community-based palliative care groups that penetrate deep into many of the state’s communities, and care for thousands of patients at their homes at any given time, in the rest of the country community-based palliative care is available only in isolated pockets, leaving the vast majority of patients without realistic access to such care (Kerala’s overall population is about 3 percent of the national total). According to Dr. Suresh Kumar of the Institute of Palliative Medicine in Kerala, there are a total of 238 palliative care units in Kerala which he estimates reach about 40 percent of Kerala’s population. In the rest of India, there are only about 70 palliative care units, which, he estimates, reach less than one percent of needy patients.[32] (The elements of Kerala’s different approach are discussed in chapter IV).
[23] WHO estimates that on average about 60 percent of people who die would benefit from palliative care before death. See Stjernsward and Clark, “Palliative Medicine: A Global Perspective” in Doyle et al, eds., Oxford Textbook of Palliative Medicine, 3rd edition. In India, with a population of 1.17 billion and a death rate of 6.4 per 1,000 (US Central Intelligence Agency, The World Fact Book, 2009, https://www.cia.gov/library/publications/the-world-factbook/geos/in.html (accessed September 1, 2009)) this translates to an estimated 7.5 million individuals each year who could benefit from palliative care. Data collected by the Neighborhood Network in Palliative Care in Kerala over the course of recent years from 60 villages with community-based palliative care programs consistently shows that about 70 people for every 10,000 population require palliative care. Human Rights Watch email correspondence with Dr. Suresh Kumar of the Institute of Palliative Medicine, Calicut, Kerala, July 23, 2009.
[24] M.R. Rajagopal and D.E. Joranson, “India: opioid availability – an update,” Journal of Pain and Symptom Management, vol. 33, no. 5 (2007), pp. 615-622.
[25] Approximately 2.47 million people in India are estimated to be living with HIV or AIDS. Two studies conducted in India show that palliative care needs among Indians living with HIV are high, with a considerable percentage of those surveyed reporting pain and other symptoms. See S.N. Nair, T.R. Mary, S. Prarthana, and P. Harrison, “Prevalence of pain in patients with HIV/AIDS: A cross-sectional survey in a South Indian state,” Indian Journal of Palliative Care, vol. 15 (2009), pp. 67-70, http://www.jpalliativecare.com/article.asp?issn=0973-1075;year=2009;volume=15;issue=1;spage=67;epage=70;aulast=Nair (accessed July 21, 2009); and Human Rights Watch correspondence with Dr. Gayatri Palat, Hyderabad, regarding survey of pain and other symptoms among people living with HIV and AIDS in Andhra Pradesh, June 10, 2009.
[26] See the Pallium India website, http://www.palliumindia.org/clinics.htm (accessed July 17, 2009).
[27] See http://www.painandpalliativecare.org/ and http://www.palliumindia.org/kerala.htm (both accessed July 17, 2009) for overviews of palliative care providers in Kerala.
[28]Under article 1 of the 1961 Single Convention on Narcotic Drugs, narcotic drugs are considered to have been “consumed” when they have been “supplied to any person or enterprise for retail distribution, medical use or scientific research.” Countries are obliged to report their annual consumption of narcotic drugs based on that definition (article 19).
[29] Based on mortality data for cancer, one can calculate approximately how much morphine is needed to adequately treat for pain all persons dying of cancer. According to Foley and others, about 80 percent of terminal cancer patients and 50 percent of terminal HIV/AIDS patients will suffer from moderate to severe pain for an average period of 90 days. See Foley et al., “Pain Control for People with Cancer and AIDS,” in Disease Control Priorities in Developing Countries, 2nd edition, pp. 981-994. They will require an average daily dose of 60 to 75 milligrams of morphine. According to India’s latest cancer mortality figures, from 2002, 109 people per 100,000 die of cancer per year (http://www.who.int/whosis/en/index.html, customized search, accessed June 9, 2009). Using an average daily dosage of 67.5 milligrams per patient, India would require more than 6,000 kilograms of morphine per year to treat terminal cancer patients for pain. In 2008 the Government Opium and Alkaloid Works, the sole agency in India that distributes morphine for domestic consumption, reported that it had distributed 237.5 kilograms of morphine (the report is on file with Human Rights Watch). Using Foley’s formula, this amount would suffice for just 39,095 terminal cancer patients with pain symptoms, or about 4 percent of terminal cancer patients who need pain treatment. The Indian government reported to the International Narcotics Control Board that India had consumed 693 kilograms of morphine in 2007. See International Narcotics Control Board (INCB), Narcotic Drugs: Estimated World Requirements for 2009 - Statistics for 2007 (United Nations: New York, 2009), http://www.incb.org/incb/en/narcotic_drugs_2008.html (accessed August 31, 2009). We do not use this figure in our calculations because it includes not just morphine used for retail purposes but also morphine used by the pharmaceutical industry to produce other medications. It is not known how much of the 693 kilograms was used for what purpose.
[30] Human Rights Watch meeting with the National AIDS Control Organization, Delhi, February 13, 2009.
[31] Nair et al., “Prevalence of pain in patients with HIV/AIDS: A cross-sectional survey in a South Indian state,” Indian Journal of Palliative Care, vol. 15 (2009), http://www.jpalliativecare.com/article.asp?issn=0973-1075;year=2009;volume=15;issue=1;spage=67;epage=70;aulast=Nair, pp. 67-70.
[32] Human Rights Watch email correspondence with Dr. Suresh Kumar, April 2009.