Forty-year old Nagamani struggles to sit against the cot beside which she sleeps on a blazing afternoon in Beeramguda, a town on the rocky outskirts of the South Indian city of Hyderabad. As her family shuffles around the single-room cement house, clearing space to arrange three plastic chairs, the late-stage cancer patient collapses, a tiny heap on the floor.
“Please give me something. I want to die,” Nagamani says, her gaze meeting the legs of our chairs. As she winces every few seconds to Shailaja, the palliative nurse, Nagamani’s husband empties a crisp, plastic bag onto the cot, revealing strips of unused or partially used medications, many of which are morphine. When asked why she doesn’t take them, Nagamani, a mother of 11, says that the pain never stops, she is scared of vomiting, and repeats that she wants to die.
Nagamani’s agony isn’t due to a lack of access to proper pain-relief. In fact, she belongs to the one percent of India’s terminally ill people who have access to pain and palliative care, a branch of medicine that treats people with serious illnesses. However, her struggle reflects the persistent challenges in providing effective pain-relief in a country where historic ignorance and harsh restrictions around medical morphine are easing, slowly and unevenly.
“You cannot look at pain relief in isolation when it comes to cancer or any other chronic illness,” says Dr. Anil Paleri, chief executive of the Indian Association of Palliative Care. “There are many social and emotional issues linked to it.”
India’s protracted struggle reflects the status of pain relief in most of the developing world. The World Health Organization (WHO) registers morphine on its list of essential medicines but estimates that 80 percent of the world lives with little to no access to it. Middle-to-low-income countries account for just 7 percent of global medical opioid consumption. Regulatory hurdles and the low profits involved in producing oral morphine contribute to this disparity—one that the International Narcotics Control Board, the UN-led body that heads international narcotics regulation, supports with cumbersome country-level controls around morphine use.
Changes to India’s narcotics legislation—which was “no doubt encouraged by America’s War on Drugs,” according to Dr. M.R. Rajagopal, director of the WHO’s Collaborating Centre for Policy and Training on Access to Pain Relief—are slowly arriving.
In 2014, the Indian government amended the 1985 Narcotic Drugs and Psychotropic Substances (NDPS) Act, an infamously prohibitive act that, in just over a decade, led to a 97 percent drop in India’s use of medical morphine. The new amendment streamlined licensing processes around opioid analgesics and unified narcotics legislation across the country (previously it differed from state to state). But according to Dr. Rajagopal, the amended act “remains a paper tiger.” Most state governments have yet to implement the consolidated policy and palliative care resources vary greatly across the country’s 29 states and seven union territories.
Barriers to access
Most NGOs and Regional Cancer Centers (RCC) or government-run cancer hospitals in India with access to morphine are located in major cities. This means that patients suffering from cancer and other terminal illness who live outside of these metro areas either travel, often across state borders, to access pain-relief or continue to live in excruciating pain. In 2012, Human Rights Watch teamed up with Pallium India, a leading palliative care-based NGO, to survey the prevalence of pain in first-time patients across four RCCs. According to Dr. Gayatri Payat, program director of the Palliative Care Access Program in India, the report found that more than 60 percent of patients visiting RCCs for the first time travel over 100 kilometers (62 miles) to access pain-relief.
“Every patient has horrendous stories,” she says. “They travel long distances bearing severe degrees of pain, sometimes bleeding or with wounds. It is such a significant failure on the primary and secondary level of care to provide pain relief before sending patients to a cancer hospital.”
Patients in India suffering from cancer or other severe illnesses who visit primary care doctors for pain-relief receive mild, over-the-counter painkillers—usually NSAIDs like acetaminophen or ibuprofen.
“There’s no logic in it—morphine is a very cheap drug,” says Dr. Paleri.
In the 11 Indian states with palliative care, few have developed home-based palliative care programs for incurable patients like Nagamani, who are either too weak or too poor to travel to the nearest RCC. These programs offer patients a final opportunity to access morphine. MNJ Oncology Institute, the RCC in Hyderabad that sends palliative care teams around the city and its surrounding districts, belongs to a minority of government-run cancer centers with the resources for home-visits and hospice care. In all of India, there are twenty-seven RCCs, which along with NGOs, operate out of just 16 states.
Pain relief in many states is largely shouldered by NGOs, whose work, according to the Economist’s 2015 Quality of Death Index, fills “gaps in public services.” But besides the fact that patients are often unaware of them, NGOs often face more red tape in acquiring morphine than public institutions.
Harmala Gupta founded CanSupport, a home-based palliative care NGO that operates in and around Delhi in 1996 after surviving cancer herself.
In an email, she writes about the bureaucracy that she fought long and hard against to obtain an oral morphine license: “Besides the very complex regulations, those in charge had difficulty understanding who we were since we were neither a medical hospital nor a nursing home but an NGO.” She brings up the challenges ahead in educating drug controllers of policy changes that the amended NDPS Act presents, saying, “it’s like beginning from scratch.”
A particularly insidious effect of the NDPS Act is the void that it left in medical school curricula across the country.Generations of practicing doctors in India are unfamiliar with the use and dosage of morphine because of never being trained in medical school. Doctors themselves perpetuate fears about addiction and dependency, which trickle down to patients in need of pain relief.
“There is a widespread misconception among doctors that the administration of morphine results in a vegetative existence,” says Dr. Rajagopal. According to him, pain management must be taught in medical and nursing school from the undergraduate level up before the recent changes in the law will have an effect on the ground.
“When I was educated, I had never seen oral morphine. Had I not been trained in palliative care, I would have never used oral morphine in my life,” says Dr. Paleri.
In 2010, after years of advocacy, the Medical Council of India accepted palliative care as a medical specialty. But only one MD program in palliative care currently exists in the country.
Awareness and demand for relief
In Beeramguda, as the pain-team starts packing up, Shailaja quizzes Nagamani’s 13-year-old daughter, Swathi, about her mom’s pain schedule, asking her to write down the names and times when each pill has to be taken. Swathi struggles with the task, hiding each scrap of paper under the mat as she finishes.
Nagamani is in her second year of battling colon cancer without chemotherapy. She is not interested in alleviating her pain. A fear of morphine’s manageable side effects, such as nausea and constipation, drove her to stop eating and she threatens her family when they try to force her to eat. Instead, she endures long, sleepless nights in crushing pain.
According to Dr. Payat, delivering effective pain-relief in India will not be possible without increasing people’s awareness of morphine. “There is a prevailing attitude here that if you have cancer, you have to have pain,” she says. “It needs lots of explanation and education.”
Dr. Sudha Sinha, an oncologist at MNJ Institute, explains a difference in the lack of demand for morphine amongst patients. “Many of the rich patients are worried about things like getting addicted to morphine—the word itself scares them. Among the poorer patients, the kind of patients we see here, there isn’t much patient autonomy. If I don’t ask a patient, ‘Do you have pain?’ he might not tell me.”
Later in the afternoon, the pain team’s van rattles to a stop at the second home-visit. Shailaja opens the trunk, revealing towering stacks of plastic and steel boxes storing drugs, while she looks over the next patient’s medical history. An effusive middle-aged woman in a bright orange sari welcomes us into a small house, where her husband Dhananjaya, a late-stage esophageal cancer patient lays on a cot under a thin blanket and slow fan, wheezing heavily and unable to say much because of severe oral thrush.
Devi, his wife, tells us that he takes five morphine pills daily, as prescribed, despite the side effects. She mentions that he sleeps for most of the day, except for five minutes every day when he sits on the front step in the sun.
As the other nurse fills prescriptions for Dhananjaya’s infection, pain and dehydration, Dhananjaya sits upright on the cot, closely watching and nodding to instructions. Shailaja asks Devi if she thinks the morphine is helping her husband, after he lets out a howling wheeze. She shrugs and smiles.