International Seminar on Access to Treatment for HIV in Developing Countries 
5-6 June 1998 London, UK
Learning from experience: the role of palliative medicine in the management of terminal HIV disease

Dr Anne Merriman
Hospice Uganda
Kampala, Uganda
 
Introduction
Hospice Uganda commenced in 1993 to bring palliative medicine to cancer patients. In their publication "Freedom from Cancer Pain" in 1986 (2nd edition in 1996) WHO pointed out to Governments that curative treatment for cancer would not be available to 95% of cancer patients in developing countries for many generations because of the cost. At present less than 5% of patients suffering from cancer have access to chemo or radiotherapy in developing countries. WHO recommended the introduction of pain control methods researched by the Hospice Movement, to at least bring freedom from pain and peace to these patients and families. Hospice Uganda was commenced to give palliative care service to patients and training to Health Professionals in Uganda within the local culture and context, and to be a model Hospice for other countries in Africa.

By 1994, it was obvious that in Uganda there are a great number of patients suffering from severe AIDS pain which is not being controlled with the services in the country. In 1994, with the help of a medical student on elective from Liverpool University, we carried out research at two major clinics for HIV/AIDS patients in Kampala. 97 patients referred with severe or long-standing pain not controlled by conventional drugs and methods known to health workers were assessed using cancer patient assessments.

It was found that pains could be classified and treated successfully using methods well researched in cancer pain. Hospice has accepted referrals from AIDS support teams for AIDS patients with pain on consultation and occasionally taking over completely. The results, following accurate diagnosis, are comparable to results with cancer patients. 90% of pain can be controlled for 90% of the time.

Experience
The present official statistics for HIV and AIDS cases in Uganda are 1.5 million and 95,000 respectively. These are extremely low. The figures in table one for rural Uganda are based on the fact that 1:6 maybe infected with the virus since 10% of patients' relatives, unaware of HIV infection and presenting for blood donations, are HIV positive. There is one doctor for a population of 23,000 with only 870 doctors in the country. Approximately half of these are working in Kampala which has a population of 2 million. The figures in table one are for the 18 million living in rural areas.

For every patient with cancer pain there are 2.8 AIDS patients suffering from severe pain at some time in 1998 .

In the year ending 31 March 1998, 10% of patients seen at Hospice had AIDS without cancer (with pain) while the highest cancer seen was Kaposi's sarcoma and the second highest cancer of the cervix. Together these two forms of cancer make up 27% of patients seen at Hospice. Both are AIDS related.
 

 Table One: STATISTICS FOR RURAL UGANDA (outside Kampala)
 
1998
Nos. 
No of Doctors
Patients per doctor
Total rural population
18,000,000
435
41,379
Estimated AIDS
204,077
 
469
Estimated AIDS pain (severe)
51,019
 
117
Estimated cancer pain
18,000
 
42
TOTAL IN SEVERE PAIN
69,019
159
 

AIDS pain differs from cancer pain in the following manner:

  1. Cancer pain usually does not improve without intervention with surgery, chemotherapy or radiotherapy, so most cancer patient we see will require pain control for the rest of their lives.
  2. AIDS patients may have permanent pain, but the commonest pains are temporary and associated with intercurrent infections. If the infections are treated energetically with therapeutic agents, the pain improves and the patients analgesics can be tapered off, without any signs of addiction.
  3. Most cancer patients and many AIDS patients in pain have more than one pain and each needs to be diagnosed and treated.
Hospice uses the holistic approach for all patients. However the psychological and spiritual suffering with AIDS patients is unusually severe and often worsens the physical pain. These sufferings must be taken into account and addressed while treating physical pain.

There is great support for HIV/AIDS patients in Uganda with many Government and non Governmental organisations involved with home and hospital care. However patients in severe pain are unable to co-operate with counselling or in preparing their families for their own demise.

The reason for the lack of pain control is as follows:

  1. Knowledge: The majority of health professionals do not know how to holistically assess and control pain.
  2. Availability: Step three medications which are required for pain control are not available in hospitals, or in the available drug kits provided by Government and NGO's for the management of AIDS patients.
  3. The law and reality: By Ugandan Law, (and for most countries) narcotics must be prescribed by a doctor. There is only one doctor to 23,000 people in Uganda (41,379 in rural areas). Most patients in pain do not have access to a doctor.
Addressing the problems
I. Knowledge
Education programmes for health professionals of today and of the future:

A.  Post graduate: Courses in the Management of the terminally ill Cancer and AIDS patients are given for health professionals four times a year. To date 400 health professionals have attended 56 hour courses at Hospice. Courses are also carried out for doctors in hospitals and home care teams on request and to the postgraduate degree courses at Makerere.

B.  Undergraduate: Palliative medicine is taught to undergraduates at both medical schools and by request in the Nursing schools.

II. Availability
 

Figure 1: WHO ANALGESIC LADDER 

                                                                                                step 3: morphine  

                                                           step 2: codeine 

     step 1: aspirin 
     Non-Steroidal Anti-Inflammatory Drugs (NSAIDS) 
 
 
A. The analgesic ladder is used in the majority of pains where the nerve pathways are intact.
 
B. Pain maybe resistant to morphine and are often present in AIDS. This is due to destruction of nerve pathways, by herpes zoster, neuropathies etc. These respond to  membrane stabilisers such as amitryptiline in very small doses for steady and burning pain, or an anticonvulsant such as phenytoin for stabbing pain, which can be compared to a convulsion of the nerve.

Availability of Analgesics
The majority of developing countries have step 1 analgesics available and affordable.
 

 Figure 2: PAIN IN AIDS: CLASSIFICATION, AND TREATMENT 

                        AIDS ASSOCIATED CANCER: Treat as cancer pain 

                        AIDS PAIN: somatic pain, nerves intact: treat with analgesic ladder 

                        AIDS PAIN: neuropathic pain: amitryptilline, phenytoin 
 
In Uganda, Step 2 analgesics are on the Essential Drug List (EDL) but are only available intermittently at District Hospital level and because of their cost are often out of stock. They are not in the drug kits for AIDS patients.

Step 3 analgesic, morphine, is usually only available as injection in major hospitals. Oral morphine, which is cheap and recently on the EDL, is available to Hospice patients from Hospice and more recently at one outlet. At present not being bought by most, because of the mistaken belief that it will encourage drug addiction.

Antidepressants are available in psychiatric units and general hospitals and pharmacies for the use of psychiatric patients. Phenytoin is widely available for use in epilepsy. However neither is available for AIDS patients unless prescribed specially for these patients.

III. The Law and reality

A. Affordability/Cost : NSAIDS are relatively cheap and are generally purchased for intercurrent illnesses as over the counter drugs by the patients themselves.   Codeine costs 0.003 US$. A tablet of 30 mgs costs $0.09.   Morphine powder made into solution costs $ 0.001 per mg and $ 0.5 for a solution containing 500 mgs which last most patients for more than a week (dose is tailored to the needs of the patient and there is a range in our experience up to 2,000 mgs per week which would cost 2 US$.)   Amitryptilline 25mgs and phenytoin 100mgs cost 0.02 US$ per tablet.

The average cost for medications per patient at Hospice Uganda in May 1998 is 7 US$ per week.

B. Availability: In rural Uganda  there is only one doctor to 41,379 people. In this doctor population there will be 42 new cases of cancer, all whom will have pain. There will be 469 patients with full blown AIDS, 25% of which would have severe pain at some time of their illness. This means that the doctor would have to control pain in 42 + 117 i.e. 159 patients. Hospice is managing 130 patients with two doctors and five nurses without any other case load. The reality is that many patients do not even reach a doctor and certainly cannot reach a doctor whenever they need more medications. At present only doctors can prescribe morphine, the main medication for severe pain.

Drugs need to be available in the villages. We need to change the law in the country so that specially trained health professionals at village level can be trained to holistically diagnose pain and dispense these drugs. Safeguards need to be put in place so that International Regulations are kept in record keeping. (This would be a similar arrangement to the provision given to midwives to use pethidine for women in labour).

Conclusion
AIDS patients are now in the situation of cancer patients in that antiviral therapy will not be affordable to them for several generations. We have a long way to go to make palliative care and in particular, pain control , available to the large number of people suffering from cancer and AIDS pain. Yet palliative care and pain control are relatively affordable and bring peace to patients and families. We give here some of our experiences at Hospice Uganda and make suggestions for making the pain control levels that Hospice patients receive, available to those patients in the villages who are unable to see a doctor.

Discussion was deferred and combined with discussions on Ian Kramer's presentation.


References:
WHO, Cancer Pain Relief: With a Guide to Opioid Availability, second edn.1996,  Geneva: WHO; ISBN 92 4 154482 1

Merriman A, Thompson A. Persistent Pain in AIDS Patients: a study in Kampala, 1994, Hospice Uganda

Information from Kitovu Blood Bank, Masaka 1998.

Estimated from cancer and AIDS statistics 1998.

Hospice Uganda Annual Report, 1997 - 8. (in press)

Present retail price in Kampala, 1998.

This complex subject is covered in: Pain and Symptom Control in the Terminal Cancer and AIDS Patient, a book for Health Professionals in Uganda and other African Countries. Edited by Dr. Anne Merriman from a book by Doyle D and Benton TF: 1995, available at US$ 4 from Hospice Uganda, PO Box 7757, Kampala, Uganda.

Another reference which focuses more on background and policy formation issues is: WHO, Cancer Pain Relief and Palliative Care,  1990, Geneva: WHO;  ISBN 92 4 120804 X

Other relevant resources
Access to all subject areas of WHO Publications 1991-1996 is on:
http://www.who.int/dsa/cat95/zcon.htm
http://www.who.int/dsa/cat95/can5.htm