This article is a preview from the Winter 2018 edition of New Humanist
Dr M. R. Rajagopal has been called the “father of palliative care in India”. He has spent more than two decades doing clinical work and advocacy to improve care for the dying and those suffering from life-threatening illnesses. The use of opioids for pain relief is crucial to this work. Yet he has had to fight to prescribe them, including amending the country’s legislation. “Only a tiny, tiny minority of people in India have access to pain relief,” he says. “We have people travelling as far as 300km to get their refill of morphine prescriptions. There are many states where it is totally unavailable.” According to Human Rights Watch, 96 per cent of needy patients in India can’t access opioids. Now Rajagopal is worried that the dependency crisis in the US will harm the slow progress being made in India.
The opium poppy, papaver somniferum, is so effective at numbing physical and mental suffering that it is often called “God’s own medicine”. Yet it also has a terrifying side, which the opioid epidemic in the US has recently brought into the spotlight. Americans consume 80 per cent of the global opioid supply. This stat is normally used to convey the extent of reckless prescription, addiction and abuse in the country. Yet there is another side to the story. Total opioid consumption in India (plus many other low-income countries) accounts for less than 1 per cent of the global today. The World Health Organisation (WHO) has estimated that “roughly 80 per cent of the world population has either no, or insufficient, access to treatment for moderate to severe pain”.
“As a young doctor I saw excruciating pain being ignored,” Rajagopal says. “I came across people who asked to be killed, I came across people who attempted suicide. I had a patient who tried to hang himself, and his children of 14 and 10 had to rush in and save his life, only for him to die a few weeks later from failure of the kidney, because of the huge amount of NSAIDs [Non-Steroidal Anti-inflammatory Drugs] like ibuprofen that he was consuming.” These experiences led the physician to found an NGO, Pallium India, in his home state of Kerala. Since its foundation in 2003, the team has helped catalyse the opening of palliative care units across the country. There are now roughly 250 institutions dispensing oral morphine in India. But there is only so much his team can do. India has the second largest population in the world. It is estimated that several million people every year endure severe untreated pain from cancer, HIV and other long-term conditions.
A major report in the Lancet, published in October 2017, calls this global gap in pain relief “emblematic of the most extreme inequality in the world”. It points out that morphine in particular, as a generic derivative of the opium poppy, is inexpensive and highly effective, calling denial of adequate access a “medical, public health and moral failing”. Co-authored by Rajagopal and other global health and palliative care experts, the report is a rallying cry addressed to the global health community, which the authors say has the “responsibility and the opportunity” to address a situation that has been “largely ignored”.
Imagine you are in hospital in terrible pain, and all you are given is a paracetamol. You’re in so much agony that you beg for death. You might reasonably assume that the medicine you need does not exist, or that it is too costly to procure. Yet unlike other global health interventions, affordability is not the greatest barrier when it comes to the crisis of untreated pain. The Lancet report identifies the root problem within the contemporary medical culture, which tends to emphasise cure over care. There’s too much focus on extending lives, at the expense of the dignity and comfort of patients. The other major barrier is perhaps more disturbing. The report describes the impact of “opiophobia” and the “focus on preventing non-medical use of internationally controlled substances without balancing the human right to access medicines to relieve pain”.
“Opiophobia” has a long history. Fears and misconceptions have clouded around the opioid family of drugs, building up over generations of use and abuse. Katherine Pettus is an advocacy officer at the International Association for Hospice and Palliative Care. Part of her job is to address this confusion, working with global institutions like the WHO and the United Nations to change the global health narrative. “There’s a historical context of trauma around opioids that has created a vacuum of education around their rational medical use,” she says. “We’re now building the narrative that’s needed for rational access to opioids and palliative care, in the last 10 years. This is really recent. We’ve got a whole century of opioid phobia and ‘narcotic drugs are bad’ and we’re trying to counter-institutionalise that.”
Pettus fears that media hype around the US opioid epidemic will slow progress. “Quite a few of our partners in the Global South have stated that it’s had a chilling effect on advocacy,” she says. “Policy makers just hear ‘increase access to opioids’ and throw up their hands in horror.”
It’s not that risks don’t exist. All opioids can lead to dependency, whether they are medically prescribed like morphine and oxycodone, or illegal street drugs like heroin. The oversupply of prescription opioids was one of the tangle of factors that led to the US epidemic. Now more than 800 people a week are dying from opioid-related overdoses. Yet every country has its own context, as well as its own social demons. Other countries with high opioid consumption, like Britain, aren’t suffering from the same fallout. Germany is the third highest consumer and its rates of abuse and diversion into the black market are next to zero. Regulatory frameworks in Europe have better served their citizens by curbing the power of big pharma.
The challenge across much of the Global South is that opioid regulation is not designed to best serve the population. India is a case in point. Its history of opioid trauma dates back to English imperialism and the Opium Wars of the 19th-century. Rajagopal cracks a wry smile as he explains why the responsible department is still revenue, not health. “That is clearly absurd today. But it’s also true that opium was a major source of revenue in India. If you look at the Opium War with China, that history does have a role. People who are familiar with that kind of procedure naturally created law only aimed at preventing diversion,” he says. “But we’ve had 70 years to take different strategies.”
Pallium India is doing just that. Rajagopal has contributed to the development of India’s National Program in Palliative Care, created in 2012. He was the driving force behind an amendment to the 1985 Narcotic Drugs and Psychotropic Substances Act of India. The Act had been notoriously harsh. Passed to comply with three United Nations treaties, it was strongly focused on prohibition, with little provision for treating patients. The 2014 amendment put more emphasis on promoting medical and scientific use of opioids. But India’s 29 state governments have on the whole proved resistant to change.
Legislation is one thing; field implementation is another. Doctors in India are not taught palliative care at medical school. “Doctors carry these fears that if you give morphine, it is something like keeping the patient doped for the rest of their life,” Rajagopal says. Before he helped changed the law, four or five different licences were required to prescribe opioids. Falling foul of the system could lead to jail. Now the process has been simplified, but many practitioners are still cautious. “I’ve heard this from so many medics all around the world,” Pettus confirms. “Instead of education you have fear.”
The Lancet report calls on all countries to adopt an “essential package” of basic palliative care by the year 2030. It includes education and training, as well as the provision of key medicines. It is designed to provide “the minimum a health system, however resource-constrained, should make universally accessible”. Its authors believe the global health community has a role in facilitating this adoption. They estimate it would cost around $2.40 per capita per year in low-income countries like Afghanistan or Senegal, and $0.75 per capita per year in lower-middle income countries such as India. Ensuring morphine access is even more affordable. On a global scale, the authors estimate that it could take as little as $145 million per year to meet the shortfall in morphine-equivalent opioids.
Pettus calls the report “groundbreaking”. But other indicators suggest it could not have been published at a worse time. There are already fears that the US opioid crisis will go global. An investigation by the Los Angeles Times found evidence that the Sackler family is “moving rapidly into Latin America, Asia, the Middle East, Africa and other regions.” The family own Purdue Pharma, the company accused of fuelling the epidemic through deceptive marketing of the pain-killer OxyContin. Doubtless many pharma giants are circling. But their readiness to exploit the pain of the poor only increases the urgent need for careful national policy-making. Crucially, the use of morphine can remove the incentive for big pharma as the drug is generic and not under patent.
It is possible for the Global South to learn the lessons of the US without abandoning those in agony. The danger is that the American tragedy will further dampen political will. The dying and seriously ill are not a vocal demographic. They are often tucked away out of sight, and practitioners in the medical field are not always the best people to tell a story. However, a new “think-and-do-tank” is determined to give voice to those around the world experiencing severe pain. The Organisation for the Prevention of Intense Suffering (OPIS) was set up in 2016 by Jonathan Leighton, a former research scientist turned writer and author of The Battle for Compassion: Ethics in an Apathetic Universe. Access to morphine as a human right is a top campaign for OPIS. “Many who need morphine are terminally ill, they may have only weeks or months to live, and it’s essential that they can live as comfortably as possible,” Leighton says. “The concerns are completely disproportionate compared to the actual primary issue at hand.”
The primary issue for OPIS is the ethical imperative to reduce suffering. Linked to the effective altruism movement, they choose causes that are most likely to produce the largest impact, determined by what Leighton calls “a clear underlying philosophy which is suffering-focused”. It’s challenging to fully empathise with others in extreme pain, especially when so many causes constantly demand our attention. According to OPIS, a morally rational approach to policy would attempt to weigh each subjective experience. “I’d like to translate that understanding into social change,” Leighton says. “Ideally systemic social change.”
The groundwork already exists for recognising morphine access as an ethical duty. The Universal Declaration of Human Rights enshrines the right to healthcare and also the right to be free from torture. A 2009 Human Rights Watch report on global pain treatment said many people interviewed “expressed the exact same sentiment as torture survivors.” It called the failure to deliver adequate pain relief a contravention of international human rights law that was “perplexing and inexcusable.” In 2008, this link was made explicit in a letter co-authored by the UN Special Rapporteur on the Right to Health and the Special Rapporteur on Torture, Cruel, Inhuman and Degrading Treatment. “Governments also have an obligation to take measures to protect people under their jurisdiction from inhuman and degrading treatment,” they wrote. “Failure of governments to take reasonable measures to ensure accessibility of pain treatment . . . raises questions whether they have adequately discharged this obligation.”
Pettus believes that implementing change is a matter of time. “The global narrative is all there. It’s just a question of joining up the dots between that narrative and what’s happening on the ground.” She hopes the fallout from the US epidemic will eventually settle down into a “more rational phase”. Yet millions of patients around the world are desperately wondering how long they’ll have to wait.
Rajagopal has a story about waiting. A man came to one of his services in crippling pain from lung cancer. That day, they had run out of morphine stock. The man said he would return next Wednesday with a piece of rope. and hang himself from a tree outside the clinic if there was still no morphine. “We all prayed hard, and before the next Wednesday, we did get morphine,” says Rajagopal. In other regions of India, the story may have ended differently.
It will be a bitter pill to swallow if the healthcare tragedy in the US ends up worsening a global crisis. This would be an irrational outcome, with a terrible human cost. Yet when it comes to the opium poppy, reason and morality have often fallen victim. Consensus in the international health community appears to be growing on addressing the opioid access gap. Rajagopal believes it is possible to close this gap. “We know there is a problem. It’s not expensive, and therefore it has to be done.”
