Editor’s Note: This article originally appeared on the IASP Pain Research Forum (PRF).
Imagine suffering from agonizing pain due to advanced cancer, or recovering from surgery without receiving any pain medication. That might seem unthinkable in the US and other high-income countries. But in low- and middle-income countries, most people die in pain; receiving palliative care is very much the exception rather than the rule.
Around the world, the unmet need for palliative care and pain relief is staggering, according to a report published online October 12, 2017, in The Lancet. The report offers a framework to address the need. It also quantifies the lack of inexpensive opioid medications in low-income countries and outlines ways to increase access to morphine while preventing non-medical misuse of the drug.
The publication is the product of three years of work by a Lancet Commission made up of experts in palliative care as well as leaders in global public health and health economics. The Commission was co-chaired by Felicia Knaul, University of Miami, Coral Gables, US, and Paul Farmer, Harvard Medical School, Boston, US.
A focus on suffering
While efforts toward universal health coverage (UHC) have ramped up around the world in recent years, they have been largely focused on curing and preventing diseases, with little attention paid to alleviating health-related suffering.
“Measures of suffering have been absent, and so the need for palliative care and pain relief services has been easy to miss,” writes Richard Horton, editor-in-chief of The Lancet, in a comment accompanying the article. “That excuse no longer holds.”
Palliative care, as it was conceptualized in the 1960s in the US by pioneer Cicely Saunders, addresses the physical, psychological, social, and spiritual needs associated with serious illness or end of life, including dying with dignity. In order to quantify the need for palliative care, though, the Commission focused on physical and psychological suffering. The report explicitly defines serious health-related suffering as suffering associated with end-of-life, or with chronic or acute life-threatening or life-limiting health conditions, diseases, and injuries. The Commission did not examine non-life-threatening chronic pain conditions.
Commission member and pioneering pain and palliative care specialist Kathleen Foley, Weill Cornell Medical College, New York, US, says the report “specifically addresses palliative care. This is not about chronic pain in the world—which is a serious issue, and in no way do I want to diminish it—but this is focused on people who might live a year or less.”
Suffering in silence
The report estimates that in 2015 over 25.5 million people—nearly half of the people who died that year worldwide—suffered at the end of life without sufficient palliative care or pain relief. Two-and-a-half million of those were children, 98 percent of them in developing countries. Another 35.5 million people who did not die suffered without palliative care or pain relief. The authors estimate that of these 61 million people worldwide who suffered from health conditions without adequate care, more than 80 percent of them lived in developing regions.
“Access to palliative care and pain relief is a health, equity, and human rights imperative that has been largely ignored in the goal to achieve UHC,” the authors write in the report.
“Many deaths—especially among children in low-income countries—are avoidable, and health systems must address this [failure] while making access to pain relief and palliative care universal,” Knaul told PRF.
Pain relief, the “pillar of palliative care,” is particularly unequally distributed.
“The global health community has the responsibility and the opportunity to close this access abyss by providing universal access” to pain relief, the authors write.
Knaul, who is an international health economist, says the disparity in access to palliative pain control across the world is “shocking and unacceptable. It is one of the greatest, most ubiquitous, and at the same time most remediable inequities I’ve ever seen in any area of public health or social development.”
MR Rajagopal, a Commission member and palliative care expert at Trivandrum Institute of Palliative Sciences, Kerala, India, called the unmet need for palliative care and pain relief “an elephant in the room.” The report, he said, was “needed to not only make the problem visible but to come up with a global strategy to combat it.”
Importantly, that strategy includes an economic assessment of the unfulfilled need, which will aid governments and other agencies in implementing the recommendations. The report contends that serious health-related suffering could be alleviated worldwide by implementing an affordable “essential package” of minimal resources that should be provided to citizens regardless of how constrained resources are. The essential package includes a list of essential medicines, equipment, and human resources required to provide basic palliative care health services. The report also makes an “emphatic recommendation” that oral immediate-release and injectable morphine be made appropriately available to those reporting moderate to severe pain.
The inequality in access to opioids worldwide is glaring. Based on data from the International Narcotics Control Board and the World Health Organization (WHO) for 2015, the Commission used Western Europe as a benchmark, where patients in need of palliative pain relief on average that year had access to the equivalent of 18,316 milligrams (mg) of morphine per patient, meeting almost nine times the palliative care need. That figure suggests that not only is palliative care addressed, but acute and perioperative pain are likely also well controlled.
In the US, in contrast, 55,704 mg of morphine were available to each patient with palliative care needs, meeting that need by more than 30 times. On the other end of the spectrum, in 2015 in India only 43 mg were available per patient, meaning that the opioid medication available in the country was sufficient to meet just 4 percent of the need. In Nigeria, only 0.8 mg was available per patient, meeting only 0.2 percent of the need.
The researchers estimated the yearly shortfall of opioids—which is heavily concentrated in low- and middle-income countries, but also occurs in some high-income countries—at about 48.5 metric tons, at a cost of $145 million at the lowest retail price; this is a very low cost to alleviate serious suffering. The authors call the lack of access to opioids for poor people—even those in high-income countries—a “medical, public health, and moral failing.”
Opioids tainted by crisis
“The whole world follows what is happening in the US, and the epidemic of opioid overdose deaths,” says Rajagopal. “That’s causing a problem,” he says, contributing to the lack of access to opioids in India and elsewhere. The report describes “opiophobia” as an outsized fear among regulators, healthcare providers, patients, and families about the dangers of opioid drugs. “Balance is important,” Rajagopal says. “Yes we want to avoid abuse, but at the same time, people who need pain relief really need it.”
“The crisis is very serious; there’s no question about it,” says Knaul. “With 64,000 overdose deaths last year in the US, we take that very seriously.” But she worries that efforts to control substance use have eclipsed advocacy and rights for pain relief, particularly for poor people.
Rather than repeating the mistakes of the US that led to the crisis, which Knaul calls “a blueprint of what not to do,” she says people should be asking, “How could that have happened?”
Much of the drive for overprescribing opioids arose from financial incentives that drove pharmaceutical companies to aggressively market the drugs. The Commission’s recommendations are to radically increase access to inexpensive, off-patent oral and injectable morphine, not on-patent or more expensive formulations.
“Then, there’s no margin for profit,” Knaul says. “That reduces all the incentives for the debacle we’re seeing in the US.” And Knaul says another recommendation gleaned from the US epidemic is that “addictive substances should not be marketed to physicians or patients. So, by putting appropriate restrictions on marketing and providing no profit margin, policy makers can dramatically reduce the risk of overprescribing and a repetition of the US crisis.”
Another Commission member, Lukas Radbruch, president of the German Association of Palliative Care, Bonn, Germany, says that while Europe also uses high quantities of opioids, “the crisis is not a transatlantic problem. We don’t have [widespread abuse or overdose] in Germany or other European countries.” Guidelines developed over the past 20 years restricted opioid prescriptions to palliative care and some people with severe chronic pain.
Also protecting Europe from opioid abuse and overdose, Radbruch says, is “the social security system we have in place,” in which all citizens receive state-provided healthcare. “That includes the gold standard treatment for chronic pain, which is multimodal. It’s expensive, but it’s all paid for,” Radbruch says. Doctors in Europe also assist patients in tapering off of opioids when stopping the drugs.
When it comes to paying for morphine, countries don’t face a level playing field. Ironically, low-income countries pay much more for the cheapest available morphine than do high-income countries, which get access to morphine at the lowest available retail prices. The Commission also calls on pharmaceutical companies to make oral immediate-release, off-patent morphine more affordable, and for policy makers to balance regulation in all countries—but especially in lower-income countries—in order to meet the worldwide demand.
“We don’t want a globalization of the US problem,” Foley says. “We are talking about a balanced approach, including a system of professionals trained to provide palliative care,” including specific training on administering and controlling opioid medications.
A lack of training and education on the part of patients and physicians about the risks of opioids contributed to the epidemic of overuse in the US. The report recommends that all members of the palliative care team—including physicians, nurses, social workers, pharmacists, and chaplains—receive training in palliative care and pain relief. The plan also outlines the need for developing countries to safely regulate opioids while providing access to patients in need.
A big tent
Importantly, Foley says, the Commission was also made up of global health economists and public health experts, and not only pain and palliative care experts like herself.
“And here they are saying, ‘Why wouldn’t you address this need? This is a public health problem, and this is how we solve it.’ It’s a no-brainer for them,” according to Foley.
As a physician who has worked in the pain and palliative care field for decades, Foley said that consensus from outsiders has been “very affirming for me. It’s non-emotional, it’s non-contextual.” That, Foley says, allows people “to move away from the mindset of ‘It’s the right thing to do,’ and instead frames it in language that governments can understand. It’s incredibly important to build a framework that governments can use to analyze health-related suffering in their country, what to do about it, what it costs, how to put that into a budget—all the things that might make [palliative care and pain relief] affordable and acceptable. Unless we have these tools in place, governments won’t have a way to operationalize these services,” Foley says. This report achieves that, she says.
The report estimates that the essential package in low-income countries would cost $2.16 per person per year, accounting for about 2-3 percent of the UHC package being widely recommended by DCP3, the third edition of a document called Disease Control Priorities, which provides the most up-to-date evidence on managing global disease burden. DCP3 is the product of a project managed by the University of Washington’s Department of Global Health and funded by the Bill and Melinda Gates Foundation.
As affordable as the essential package may be, its implementation will require additional investment in delivery and training platforms, particularly in low-income countries. These platforms would actually strengthen healthcare systems overall and complement other health-related goals, Knaul says. “Can you imagine doing surgery without post-operative pain medication? Access to palliative care and pain relief strengthens surgical platforms,” Knaul says. The report includes preliminary data on potential health systems savings from extending universal access to palliative care, for example, by reducing expensive end-of-life hospitalizations, which drive up costs in the US and other countries.
Rajagopal says governments of low- and middle-income countries are often slow to adopt change, but that this report could create a shift together with international advocacy and pressure from the WHO.
“The more you can make it visible, the stronger our hand is,” Rajagopal says.
A group of Commission co-authors and advocacy leaders plans to produce a follow-up report in one year, after continuing to monitor health-related suffering and collecting case studies of implementation in low- and middle-income countries.
Stephani Sutherland, PhD, is a neuroscientist, yogi, and freelance writer in Southern California.