Pain is a major issue for people living with HIV and AIDS. Pain can result from the virus itself, various forms of treatment, opportunistic infections and cancers. It affects all parts of the body and can significantly affect quality of life.

Despite the importance of tackling pain, it is very often left untreated. It is estimated that one million late-stage HIV patients suffer pain through lack of treatment in countries where there is insufficient or no access to moderate or severe pain relief.¹

Pain in people with HIV

Pain is experienced through a complex set of interactions between parts of the body where pain is located; the central nervous system in the spine; and the brain. These interactions occur via signals which travel back and forth between these parts of the body to make a person aware of pain, its location and its intensity. However, pain is more than just chemical reactions or electrical signals:

“Pain is experienced by people and families not by nerve endings.”– Dame Cicely Saunders

People with HIV can experience pain in all parts of the body due to HIV infection itself, HIV related opportunistic infections and HIV related cancers, immune suppression, antiretroviral treatment, and related symptoms such as nutritional deficiencies. Furthermore, people can experience two or three different types of pain at any one time.

Types and levels of pain vary by individual and the respective stage of HIV infection. In the early stages of infection, around 30% of people with a CD4 count of >500 experience clinically significant pain, with up to 75% of people with AIDS suffering from pain. Almost all people in very advanced stages of infection experience pain.²

The various types of pain include:

• Neuropathic pain. Pain that attacks the nervous system is very common, and felt by around 30% of people with AIDS. It particularly affects the feet, hands and face, and has a tingling, burning or numbing effect.
• Headaches. These vary in intensity and can result from a wide range of factors including muscle tension, stress, sinusitis, migraine, and infection of the nervous system.
• Gastrointestinal pain. This affects all areas of the digestive system including the throat, stomach and intestines. Mouth ulcers and cold sores also affect the lips which can make eating difficult.
• Chest pain. This can be caused by opportunistic infections such as tuberculosis and bacterial pneumonia.

See our pages on treating opportunistic infections and antiretroviral drug side effects for further information on the causes of HIV-related pain.

Aside from creating potentially extreme discomfort and distress, pain can also be a major hindrance to living a productive, fulfilled life. People with HIV who experience pain may not be able to earn a living, care for their families, or take part in social activities to the extent they would were they not in pain. Friends and family too may have to divert time from other activities to care for their loved-one in pain. Pain and its effect on life can also lead to emotional problems such as depression and anxiety.

Pain relief should be seen as a vital component of HIV treatment itself. If painful side effects of antiretroviral drugs can be averted through effective pain control, people will be more inclined to adhere to their treatment, and will be able to fight HIV far more effectively.

Pain assessment

Assessing pain is necessary before and during the treatment of pain in order to effectively control the pain and amend the treatment, if necessary. The various assessments include physical checks that may identify a particular symptom as the cause of the pain; having the patient describe how and when pain is at its worst or best; and examining the patient’s medical and psychosocial history and background, including a history of substance use and abuse, that may influence subsequent treatment.³

No one besides the individual can more accurately say how much pain someone is in and therefore the patient should be at the centre of pain assessment:

“Only the patient knows how intense and frequent a pain is – a pain is what the patient says it is.”⁴ – Palliative caregiver

When being assessed, patients can be asked to describe their pain intensity on a variety of scales including a 0-10 range with “0” being “No pain” and “10” being “Worst possible pain”; a descriptive scale with, for example, the patient describing their pain as “moderate” or “severe”; or simply on a line, with pain increasing further along the scale. Children or speakers of other languages may convey their pain by selecting from a series of illustrations depicting different levels of happiness or sadness.⁵

The Brief Pain Inventory is very widely used to assess pain. It asks patients not only to explain the location and intensity of pain, but also to describe how it interferes in seven areas of life including work, walking, mood and relations with others.⁶

Treating pain

If pain can be attributed to a particular antiretroviral drug or opportunistic infection (OI) then switching medication or treating the specific OI may be the most effective way of relieving the pain. However, targeting the pain itself is sometimes the only option.

The drugs used for mild pain include anti-inflammatory drugs such as aspirin. They block the effects of enzymes that produce prostaglandins that in turn cause swelling and subsequent pain. Paracetamol is another non-opioid used for mild pain.

Opioids, used for moderate or severe pain, are drugs that originally derived from the opium of the poppy plant. Nowadays, many are produced artificially in laboratories. Opioids attach to proteins called opioid receptors, found in the spinal cord, brain and digestive tract. This process inhibits the signals sent to the brain that let you know pain is being felt. In effect, they do not take away the source of the pain itself, rather they prevent the perception of pain.

Morphine is recommended by the World Health Orgnaization (WHO) as the strong opioid of choice, with codeine being the recommended weaker opioid, both appearing on its model list of essential medicines. Essential medicines lists contain medications ‘intended to be available within the context of functioning health systems at all times in adequate amounts, in the appropriate dosage forms, with assured quality, and at a price the individual and the community can afford.’⁷

The pain relief ladder and guidance on drug administration

The WHO has guidelines outlining which pain relief medications should be used and how patients should take them. The pain relief ladder, is a three-stage guide to which analgesics (pain relieving medications) should be used in response to differing levels of pain. Originally established for cancer pain, the ladder has been successfully used for AIDS-related pain relief.

• Step 1: When pain first occurs a non-opioid should be provided.

  Non-opioid painkillers: Paracetamol and NSAIDS (nonsteroidal anti-inflammatory drugs) such as aspirin, ibuprofen and naproxen etc.

• Step 2: If pain persists or increases, a mild opioid as well as a non-opioid should then be used.

  Weaker opioids: Codeine, tramadol, DF118 forte, dextropropoxyphene etc.

• Step 3: If pain is still present or increasing, a strong opioid should be used with or without a non-opioid.

  Strong opioids: Morphine, methadone, fentanyl, buprenorphine etc.

Adjuvants should be administered at each stage of the pain ladder to deal with the side effects of pain relief drugs. They are also used for the relief of pain itself, particularly neuropathic pain, either used by themselves or by enhancing the effect of other pain killers.⁸

For the administration of pain relief, the WHO recommends five principles which should be adhered to:

1. By mouth: Oral administration of the medication is preferable. Oral forms of morphine include a solution that can be made from powder, and slow-release tablets which can be taken every 12 hours.
2. By the clock: Medication should be provided in regular intervals with each subsequent dose pre-empting the recurrence of pain. This means that patients will live continuously free from pain.
3. By the ladder: If one class of medication does not work, progress to the next stage of the ladder (see above).
4. By the individual: Dosage should be appropriate to the individual as responses to medications vary from person to person. The dose of morphine should therefore be appropriate to the level of pain and should be increased until pain is relieved or any side effects become unbearable.
5. Attention to detail is vitally important.

Side effects of pain relief medication

There are several potential side effects of taking opioids. Nausea is a common symptom for people taking opioids for which drugs known as antiemetics may need to be taken. Dry mouth, like difficulty urinating, may be controlled through ensuring an adequate intake of water, as well as maintaining good oral hygiene, and avoiding smoking and alcoholic or caffeinated drinks. Constipation can result from opioids slowing down digestion, and can be controlled through ensuring a healthy diet, specifically a greater intake of fibre and liquid, and by taking laxatives.

See our HIV and Nutrition page for more information on the importance of maintaining a healthy diet while living with HIV.

Drowsiness is another side effect, which can significantly impair physical function, so driving or machine operation should be avoided. Opioids can also lead to respiratory depression and sedation. However, opioid side effects should be effectively managed by pain relief specialists and they need not prevent their use.

Inadequate access to pain relief

Despite severe levels of pain and suffering among people living with HIV and AIDS, pain is greatly underdiagnosed and undertreated.⁹ According to the WHO, around one million people in the end stages of HIV and AIDS suffer moderate or severe pain through lack of access to pain medication.¹⁰ Pain as a whole is severely undertreated in 150 countries comprising 80% of the world’s population.¹¹

In a survey of hospices, health workers and facilities providing palliative care across Asia, Africa and Latin America, access to pain relief medication was very low with many unable to provide sufficient amounts of opioid analgesics. It is possible that in areas not served by a palliative care provider access to pain relief is even lower.

The survey revealed that 20% of providers in Africa had no access to strong opioids, with a quarter having no access to weak opioids. Only 55% of organisations always had a weak opioid available. In Latin America and Asia, 35% and 25% of survey respondents could not always access strong opioids.¹² Patients who are taking pain medication but are unable to always access these drugs will inevitably experience severe pain again.

Being able to access weaker painkillers was not found to be such an issue though 7% of respondents had no access to paracetamol, and in one main Malawian hospital the only pain relief constantly available was aspirin, which is not recommended for children.¹³

A small survey in India, the country with the second highest number of people living with HIV, found that just 27% of HIV patients in pain received any form of pain relief.¹⁴

Reasons for a lack of effective pain relief

The value and necessity of pain relieving medication is recognised by leading international bodies and illustrated in resolutions, conventions and statements. However, there are still many barriers to making sure these drugs are adequately distributed. A multitude of actors, ranging from international bodies, governments and national agencies, down to doctor and patient level, account for the insufficient relief of pain.

International barriers to pain relief

The Single Convention on Narcotic Drugs, 1961, amended in 1972, had been ratified by 184 nations as of April 2009 and provides a framework for international drug policy.¹⁵ As well as calling for the control and restriction of illicit drugs, it also recognises “that the medical use of narcotic drugs continues to be indispensable for the relief of pain and suffering and that adequate provision must be made to ensure the availability of narcotic drugs for such purposes”.

Provision of narcotic drugs for pain relief is clearly outlined by the treaty, yet one review found United Nations guidance for the implementation of the Single Convention was not conducive for this purpose. It was argued that UN model laws – used to guide national legislation – are too heavily focused on curbing narcotic abuse and do not recognise the value, nor promote the availability, of narcotics for medical use.¹⁶

It was found that language used in one model law too easily conflated drug abusers and patients in pain. The model bill prohibits prescribing drugs to what they call “drug dependent persons” defined as someone who would experience “symptoms of mental or physical distress or disorder” were they to stop taking the drug in question. This definition could apply as much to someone addicted to heroin as to someone using morphine. Further, the model bill warns against prescribing drugs in “unusual” or “dangerous” doses which, it is argued, could result in the under treatment of pain due to concern about over-prescribing morphine.¹⁷

Knowledge and misconceptions of opioids and pain relieving drugs

Evidence from both Africa and America suggest that in more developed and less developed countries alike, HIV and AIDS-related pain is underdiagnosed and undertreated and is a lesser priority than treating disease and infection themselves.^{18 19}

Patients can sometimes refuse pain relief due to their reluctance to report pain and to take opioids. Some are concerned about side effects of opioids and some may try to reduce the amount they take, instead using alternative medicine. Patients may also worry that they could appear to others to be abusing pain medications.²⁰

Medical staff are sometimes poorly trained to assess HIV-related pain, and have little knowledge of the effectiveness of opioids. It has been reported that morphine is often withheld from patients in pain due to the belief that they will become tolerant and the narcotic will therefore become ineffective in treating severe pain.²¹

There are also several unhelpful myths and misconceptions about opioids that translate into under-utilisation for pain. One is that morphine is used by doctors to hasten death. In part due to high-profile criminal cases involving doctors and morphine, one UK hospice worker believed national media take as “accepted fact” that, towards the end of life, pain medications are used in ever increasing doses until the patient dies.²²

A significant fear exists that patients will become addicted to morphine. The latter problem is compounded when it is substance abusers who require opioid pain relief. Such patients, including injecting drug users, may require higher and more frequent doses due to their heightened opioid tolerance.²³

Stringent regulations and costs of pain relief

In a survey of PEPFAR-supported countries in Africa, stringent regulations on the storage and prescription of pain relieving medicines were considered some of the main barriers to opioid provision. The authority to prescribe, dispense or handle opioids can sometimes be restricted only to particular individuals such as doctors or those who have registered with certain governmental or medical authorities. Such processes can be lengthy and time-consuming.²⁴ Two participants in a palliative care survey illustrate these problems:

“Licences are hard to obtain. You need to write an exam then apply for a licence.”

“I waited nearly one and a half years to get my first licence to prescribe oral morphine.”²⁵

Nurses, NGOs and home based care workers who may be in better positions to provide the daily pain-related care can therefore be excluded from providing this vital task. Prescriptions also can be limited to a few days or be unrepeatable requiring more time-consuming medical visits and assessments.²⁶ In Malawi, for example, only three-day supplies of analgesics are dispensed.²⁷

Likely due to fears of abuse opioids may be required to be stored in special secure rooms or safes, or in cabinets with two locks. This can interrupt the supply chain if the required storage facilities exist, and, where they do not, opioids will simply not be kept. Trained staff, raw materials and basic equipment for producing morphine solution from powder are also often lacking.²⁸

“I waited nearly one and a half years to get my first licence to prescribe oral morphine.”

Pharmaceutical manufacturers also may not want to produce morphine if they believe excessive regulation on its production outweighs any benefits, especially in countries where usage is low and therefore there is a perceived lack of demand.²⁹

Despite oral morphine being inexpensive many cannot afford it. In a survey of palliative care providers in Africa, Asia and Latin America over a quarter believed oral morphine was too expensive.³⁰ It has been found that opioids are even more expensive in less developed countries than they are in more developed countries.³¹ However, even in the USA, pain relief prescriptions are often unaffordable.³² As well as having to pay for other forms of HIV treatment, the spending power of people requiring pain relieving care is often diminished through being unable to work, consequently putting opioids further out of reach.

The impact of antiretroviral therapy on relieving HIV pain

In several ways antiretroviral therapy impacts upon the provision of pain relief. Antiretroviral drugs can have painful side effects and certain ones may increase or decrease the metabolism of particular opioids. The fact that treatment significantly lengthens life means people will more likely face the chronic, pain inducing symptoms of HIV and other diseases, when previously such conditions would not have time to develop.³³ It is also believed that the widespread implementation of antiretroviral therapy, particularly in developed countries, has been at the expense of the overall palliative care of the patient, including the management of painful symptoms.³⁴

Limited access to complementary drugs

In order for pain relief to be considered effective, side effects of pain medication such as nausea, diarrhoea and constipation, should be minimised to encourage patients to continue their treatment and allow them to live as normally as possible. These adjuvant drugs, or ‘complementary drugs’, are used to treat side effects of opioids and HIV drugs, while others can be used alongside other analgesics, and sometimes by themselves, to treat pain. However, the availability of such drugs is lacking in some countries. Shortages in the supply of antiemetics (anti-nausea drugs), anxiolytics (anti-anxiety drugs) and other drugs used by themselves for neuropathic pain were found in a survey of palliative care provision in Africa.³⁵

For further discussion on how to manage nausea and diarrhoea and other symptoms see our Side effects of antiretroviral drugs page

How can pain relief for AIDS become more accessible?

Patient-doctor level

Many of the problems associated with a lack of adequate pain control are linked to negative perceptions of opioids held and perpetuated by patients, doctors, governmental authorities and international organisations. Therefore, reassuring and lobbying those involved about the medical value of opioids is necessary in order to overcome some of the barriers.

In order to lessen fears about taking opioids, patients should be made aware that they can be administered often with very few pills. This is important considering the overall daily pill burden of people living with HIV. Patients should also know that side effects can be prevented and treated.³⁶ Those who can potentially administer opioids should also be trained on how to diagnose pain, administer the appropriate type of medication and in what dose and frequency.³⁷

Overcoming the hesitancy by healthcare workers to supply pain relieving opioids to patients because of fear of addiction can be achieved through education in order to dispel myths about opioids, in particular morphine. Palliative care specialists should consult HIV specialists and addiction experts if they are worried about prescribing opioids to users of illicit drugs so that the patient receives adequate doses.³⁸

National level

Countries where there is high HIV prevalence and a more urgent need for pain control often have less developed healthcare sectors and poorer infrastructure in general. This makes pain relief just one of many healthcare essentials that are poorly provided due to diminished levels of economic development. It can be argued that strengthening health systems in general will have the effect of alleviating many specific problems. However, there are many steps that could be more immediately effective.

Separating laws directed at curbing abuse and laws ensuring sufficient supply would enable handlers of opioids to not feel they are in potential violation of criminal law. As some palliative care specialists have stated, ‘[T]oo many legal obstacles for busy health professionals are a disincentive to use.’³⁹

Countries should also submit reliable estimates of annual need to the International Narcotics Control Board to ensure they are granted a sufficient quota. Some countries’ estimates are so low that they would realistically cover less than 1% of those in need.⁴⁰

Relaxing the regulation surrounding narcotics provision could make effective pain relief much more accessible. Such liberalization could include permitting a wider range of healthcare workers to prescribe and administer opioids; making necessary accreditation by professional bodies or governmental authorities easier and quicker; and increasing the duration of prescriptions. Normalising the medical use of opioids, through a relaxation of regulation, could make them less taboo and lead to more rational beliefs about them.

Many of the obstacles to pain relief have been removed in Uganda where morphine is now promoted at all levels including in villages. Nurses are allowed to prescribe it, and within its hospice system, morphine can be prescribed in any dose and for any number of days.⁴¹ Palliative care was recognized by the government as an essential clinical service, and liquid morphine was added to its essential drugs list.⁴² Furthermore, at least during the first three years of government use and first twelve years of hospice use, no cases of narcotics abuse occurred.⁴³

International level

The international drug control framework also needs to shift to greater emphasise the adequate provision of pain relief medications, rather than focusing on the potential for illicit drug trafficking and addiction. To achieve this, United Nations model laws could be amended to reflect the spirit of the Single Convention on Narcotic Drugs that recognizes the importance of pain relief.⁴⁴

To reduce fears that narcotics imported for medical purposes could seep into the black market, accountability processes that detail suppliers, recipients, quantities, and medical usage of opioids are necessary. The International Narcotics Control Board already requires countries to submit such information but it is believed a simplified, standardized process to make accountability easier would be effective in reducing worries about misuse.⁴⁵

Conclusion

"Pain relief should be a human right, whether people are suffering from cancer, HIV/AIDS or any other painful condition,”⁴⁶

Existing medical knowledge has the power to greatly improve the quality of life of people living with HIV and AIDS through effective pain relief. Therefore, it is unacceptable that so many are left to live in pain, very often in their later stages of life. Pain relief should be a priority for people with HIV and AIDS, not only to improve their standard of life but also as a means of fighting the virus itself through improved adherence to HIV treatment. Any obstacles or legal barriers that result in the underdiagnosis and undertreatment of pain should be tackled if they are doing more harm than good.

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References

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