In a nutshell:
- The suffering experienced by patients without access to pain relief is very widespread and very severe.
- When addressing access to pain relief directly, we can address regulatory impediments and attitude/knowledge impediments, though tractability is questionable. Addressing both regulatory and attitude/knowledge impediments is required for success. The subject is highly politicised, being intricately tied to policies and attitudes on narcotic drugs. A difficult political landscape make international solutions appear less feasible than national ones.
- Development of novel painkillers is another avenue, but one that is unlikely to be an area for EA focus.
- Actors working on this cause include large private philanthropists, public donors, international organisations and non-state actors, academia, and popular media.
- The cause of increasing access to pain relief in developing countries is thus large in scale, low-moderate in tractability, and low-moderate in neglectedness. It is a terminal cause, having few long term indirect/flow-through effects. Measurement of the impact of interventions to increase access is difficult. Funding training programmes for local champions to work on this issue may be a promising avenue.
About the author: I am a public health consultant contracted to the World Health Organisation. My work aims to increase access to pain relief and palliative care through developing clinical guidelines for cancer pain relief and evaluating models of palliative care delivery. The opinions and assertions made here are my own and do not represent the beliefs of the World Health Organisation or its staff.
Framing the issues: Pain and access to pain relief
It is worth clarifying that by increasing access to pain relief, we primarily mean increasing access to opioid analgesics. According to the World Health Organisation, they are essential medicines for treating moderate-severe physical pain. Other analgesics exist (e.g. ketamine, frequently used as an analgesic in developing settings and enjoys fewer international restrictions), but only strong opioid painkillers adequately treat the moderate-severe pain common in many medical illnesses.
Pain is a complex phenomenon, and the mental/physical distinction is an incomplete picture. The experience and mechanisms of the various flavours of suffering are interdependent. It is well known that physical pain, especially chronic pain, can cause depression. It is also well known that depression, stress, and anxiety can heighten the perception of physical pain. Indeed, psychosomatic pain is ‘physical’ pain caused by mental states alone. The founder of the palliative care movement, Dame Cicely Saunders, proposed the idea of ‘total pain’. A simple descriptive, non-mechanistic model, it recognises that physical, psychological, social, and spiritual suffering contribute to the patient’s overall negative experience in dependent ways.
Access to pain relief medications requires having both the medications and the ability to deliver them. Palliative care is the context for much pain relief administration. Increasing access to pain relief in developing countries will benefit multiple areas of medical practice - surgery, obstetrics, and some emergency medicine to name a few. But it is palliative care that stands to benefit the most, pain relief medication being its primary instrument. It is important to note that palliative care is not only for the dying, nor is its focus solely physical pain reduction; it serves to alleviate the worst of suffering for those with life-threatening illnesses. International palliative care development is therefore almost synonymous with increasing access to pain relief medications, so I ask readers to permit some conflation of the terms.
The problem - Widespread torture by omission
Trigger warnings: cancer, suicide, torture
Discussions on extreme human suffering frequently evoke examples of torture and overlook untreated medical suffering. This is availability bias. This is by no means to dismiss the trauma suffered by torture victims, but unalleviated medical suffering is comparably severe and significantly more common. Common life threatening diseases that require palliative care include cancer, cardiovascular disease, HIV, chronic lung disease, and diabetes. I cannot find good estimates, but it is reasonable to assert that the number of people tortured every year is dwarfed by the millions dying in unmet need of palliative care (ref). Without giving an exhaustive illustration, metastatic cancers alone slowly but surely splinter limb bones, destroy vertebrae, tear contiguous tissue, necrose in breasts, cause severe and unremitting head pain, and more. When they are capable, some patients take their own lives or attempt to (ref). The experiences of patients without access to adequate pain relief, “constitutes cruel, inhuman or degrading treatment or punishment”, according to the UN Special Rapporteur on torture and other such conditions (ref).
It may be unknown to EAs from the Anglosphere and Western Europe that almost nowhere else in the world is it easy to get adequate pain relief. Reasons for this lack of access are discussed below. In 2011, it was estimated that 5.5 billion (83%) people live in countries with low or non-existent access to adequate pain management (ref). The International Narcotics Control Board (INCB) estimates that 92% of all morphine is consumed in America, Canada, New Zealand, Australia, and parts of western Europe— only 17% of the world’s population (ref ; 2014 estimates). Therefore, if an individual outside these borders is to die of a common life-threatening disease (i.e. the majority of deaths), they run the real risk of an experience tantamount to torture by omission.
Causes of the problem
The causes of lack of access to analgesia and palliation are many and complex. They can be broken into three categories:
- Regulatory impediments,
- Attitude and knowledge impediments,
- Economic and procurement impediments.
Because (3) includes insufficient medical infrastructure, limited resources for the purchase of medicines, and barriers due to supply system capacity, this category is not typically addressed directly in efforts to increase access to analgesics (ref). Furthermore, pain relief medications such as morphine can be purchased at pennies per dose. I will therefore focus on (1) and (2).
More detailed explorations of the causes can be found in the references.
Opioid medications are controlled substances under the various international Conventions on Narcotic Drugs. Under the Conventions, countries must estimate their requirements for controlled medicines and submit their estimates to the INCB, who will licence certain quantities of the medication to be produced or imported by that country. The reasons for these controls are obvious, and these regulations do not pose much of an impediment to access.
Countries are at leisure to place further controls on controlled substances. This is where significant access difficulties begin. According to the Conventions (and therefore binding under international law), states have a “dual obligation” to ensure that these substances are available for medical purposes and to protect populations against abuse and dependence. The politically motivated (ref) global War on Drugs is blamed for skewing states’ priorities away from access for medical purposes and towards measures to control illicit use.
Such measures often make it either very difficult or impossible for patients to get the medications. In Armenia for example, in order to get strong painkillers (ref):
- First, be a cancer patient. No other patient qualifies for opioid analgesia.
- The diagnosis must be confirmed through biopsy (taking a small sample from the tumour). Only three hospitals in Armenia offer this procedure. Note that some patients may be immobile.
- The oncologist must try several weaker painkillers before asking a panel to approve a prescription for morphine.
- A panel of 5 specialists must examine the patient at home and approve the morphine prescription.
- Each prescription requires four stamps and three signatures of approval.
- The patient or relative must travel to one of the few clinics or specialised pharmacies that carries morphine.
- The patient then receives enough injectable morphine (an unnecessarily invasive procedure when oral morphine is effective and cheaply available) to relieve severe pain for only a few hours.
- The prescribed amount is so small that patients or relatives must refill the prescription every 1-2 days.
Armenia is not an exceptional example; many countries have comparably restrictive regulations. In addition to patient difficulties, doctors in some countries work under fear of prosecution or even jail when prescribing opioid painkillers (example).
Attitude and knowledge impediments
If regulatory barriers are not enough, attitudes of patients and doctors create further impediments. A widely held belief in countries where opioid use is low is that the use of these medicines signifies the end of curative treatment for the patient; its use is seen as giving up. Fear of addiction and other adverse effects also inhibits use. Opiophobia - the fear of using opioid medications - often has deep social and cultural roots (ref) and is promulgated by patients, doctors, and policymakers alike. When properly used, the incidence of addiction and dependence is low, but fear remains inordinately high. Because opioids are so rarely used in most countries, most doctors don’t know how to use them even if they had the inclination. In most of the world, opioid use is therefore not part of normal medical practice.
Attitudes and fears underpin the political will to change regulations and modes of clinical practice. This barrier is becoming increasingly significant with the opioid abuse epidemic plaguing the USA. There are good reasons to believe that this is, in part, the fault of irresponsible marketing by pharmaceutical companies (John Oliver does an entertaining exposé) and linked with some of the less desirable idiosyncrasies of the US health system. Nevertheless, policy makers in developing countries are able to point to the significant issues facing the USA and some other countries in order to justify the maintenance or development of policies that restrict access to controlled substances beyond what is reasonably warranted.
What are possible solutions?
Under international law, states are already bound to provide adequate access to pain relief. The law is ignored, be it due to resource constraints or competing national priorities. Effective international enforcement of the law is highly unlikely when it appears that most countries are breaking it.
The policies of international organisations are generally in accord that states restrict too much access controlled medications at the expense of medical use (e.g. ref). The development of further general-level international policies is unlikely to contribute heavily to a solution.
The world drug problem is a complex catastrophe with many facets. Improvement in one area (access to pain medications) demands improvements in others for satisfactory solutions (e.g. addiction and dependence treatment and rehabilitation programmes, medication security infrastructure, countermeasures for diversion of prescribed medications, adequate training for medical staff and carers, etc). On an international level, high-level policies need translated into specific, actionable ones. This inevitably requires international consensus. While health typically enjoys relative freedom from politicking compared with other key areas of international development, access to controlled medicines is an exception. I have witnessed the derailment of World Health Assembly drafting sessions for important policy measures on the public health dimensions of the world drug problem by a single uncooperative country. This came despite the same country agreeing to the high profile Outcome Document of the UN General Assembly Special Session on the World Drug Problem (ref) just two months earlier, which promoted the high-level principles that the World Health Assembly document attempted to convert into action.
While it is hard to generalise for all countries, scope for change at a national or state level seems more promising. Typically, local champions of the cause find some success after years of effort. India is a good case study for how advocacy on a national level in this area can lead to institutionalised change. Much state-level progress is still required before the majority of patients can benefit in India, however. An EA seeking to change regulations would target larger countries with centralised health system governance where some political will makes the problem tractable. In a brief advocacy publication (the Preventable Pain Pandemic), I targeted Mexico and India for their size and extant political momentum. Where there is little political will and reactionary policies on controlled medicines (e.g. in some post-soviet countries), change seems much less tractable.
Education of medical staff on administration of opioid medications is required before patients can experience increased access. Lobbying for the inclusion of palliative medicine and administration of opioid medications in undergraduate medical and nursing curricula seems a promising long term strategy. Guidelines on the proper administration of opioids are essential to justify relaxing restrictions. But it’s not only doctors and nurses that need education - the attitudes of patients, carers, and policy makers also determine practice. Their attitudes tend to depend on those of the general population. A sizeable proportion of the population needs to be educated on appropriate attitudes to pain relief medication. While mass education programmes have worked in areas such as sexual health and HIV, it is not obvious whether initiatives in this area can produce the required attitude changes to generate political will on this issue.
With limited resources, it is possible that establishing local centres of good practice through targeted education and regulatory change could galvanise change on a national level. Indeed, palliative care organisations in the state of Kerala, India, served this function and catalysed national progress in access to analgesics. Thus, initial targeted investments may mobilise activity and funding nationally, but overall tractability is unclear.
An approach that bypasses politics would have a much greater chance of success. The development of novel pain killers that are significantly less addictive, less dangerous, and less prone to abuse would make pain relief administration more palatable to patients, medical staff, and policymakers. Some headway has been made in this regard (example - brought to my attention by Chris Leong), but it is uncertain if this should be a focus area for EAs for the following reasons:
- For-profit incentives are enough to motivate research in this area.
- If successful, it would take some time before the new medication is affordable in developing countries, during which the attitudinal and regulatory landscape may have changed significantly in developing countries in favour of increasing access to existing painkillers.
- The medications developed, even if they have markedly lower adverse effects, are likely to belong to the opioid class and therefore subject to the same regulatory barriers as older members of the class (although they may spur regulatory change if sufficiently safe).
Who else is working on it?
A range of organisations exist that aim to increase access to pain relief medications.
Open Society Foundations (ref) provides grants globally for work in access to pain relief and palliative care development. I cannot find figures, but I frequently come across work that they have funded in this domain. Public donors include PEPFAR, DFID, GIZ, the EU, and several others.
Direct work is carried out by a range of actors. High-level policies and guidelines are developed by organisations such as the World Health Organisation, the UN Office on Drugs and Crime (UNODC), and global and regional palliative care associations. National palliative care associations, where they exist, often do much to promote the cause in their country. Valuable work is also performed by Human Rights Watch, who have helped to popularise access to pain relief as a human rights issue and expose examples of violations (ref).
Notable academic work in this area is carried out by the Pain and Policy Studies Group of University of Wisconsin-Madison (link). Among other activities, they monitor global opioid consumption data and run ‘International Pain Policy Fellowships’ (link), which train national champions of the cause to identify and overcome barriers to the use of opioids in their countries. The programme has had numerous in-country successes. If the Pain and Policy Studies Group (PPSG) can be convinced to receive charitable funding for this venture, it might provide a viable future option for EAs interested in this cause area, but data are very few and the impact of this programme is hard to measure.
Popular media lends some attention to the cause (example - a moving Al Jazeera documentary). The Economist Intelligence Unit ran a study on the quality of death throughout the world, a component of which involved evaluating access to pain relief medications (ref).
Substantial work on the ground is carried out by numerous national and local civil society and medical organisations that are too many and too heterogenous to list here. While these groups are essential to the end goal of increasing access to pain relief, and while many are funding constrained, my intuition says an EA should probably aim to donate to or work on upstream bottlenecks to maximise impact.
Issues for further investigation
The impact of increasing access to pain medications is unclear. The problem is large in quantity, and severe in quality. Negative utilitarians or EAs with a focus on extreme suffering will especially value access to analgesia. But it is not obvious whether suffering alleviated by increasing human access to pain relief is greater than can be achieved by other global health interventions or EA cause areas such as animal charities. Increasing access to these medications probably has extremely small long term indirect effects relative to other health or development interventions (though there is some evidence that palliative care is a cost effective health intervention by reducing hospitalisations, thus enabling money to be spent elsewhere in the health system). There is nevertheless something significant to be said for upholding a minimum amount of human dignity, currently denied to those without access to pain relief. And because the dead cannot advocate their past plight, there is at least one reason to believe that the cause may be neglected compared with other global health causes.
We should include the downside risks of increasing access to analgesics in our impact considerations. While the majority of adverse effects may be avoidable under a well designed access framework, a small number of cases of addiction, dependence, side effects, diversion, abuse, and overdose are almost inevitable with existing painkillers. This does not justify the stringency of current regulations in most countries, but the lessons of the USA and other opioid-afflicted countries cannot be overlooked when designing and implementing interventions to increase access to analgesia in the developing world.
Funding opportunities for EAs:
I am not aware of good opportunities for donations from EAs who wish to donate to this cause. As mentioned above, the PPSG International Pain and Policy Fellowship seems like an especially impactful programme, potentially. More detailed investigation would be needed before a recommendation can be made to donate there. At present, they do not advertise the possibility for individual donations. Identifying advocacy organisations in large countries with some political will (preferably with centralised health system governance) may provide a high impact investment opportunity but, again, measurement is a difficult issue.