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NANASI 44: May 2006

NANASI 44: May 2006

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In this issue of NANASI:

  • Case Study: Treatment Failure
  • Q&A: What kind of support can we give those living with HIV or AIDS?
  • Ethical terms guide for HIV and AIDS

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CASE STUDY: TREATMENT FAILURE

A 46-year-old man has been taking ARVs for 3 years. He takes stavudine 30 mg bid, lamivudine 150 mg bid and nevirapine 200 mg bid. In general, he has followed the recommendations for his treatment, and only once missed his medicines for more than a week. After a gain of 7 kgs, his weight stabilized for most of the past year.

Last month he lost 2 kgs. As of today, he has lost an additional 2 kgs. He has a fever of 38 C. He has become so weak that for 2 weeks he could not go to his job in a shoe factory.

He has no headache. There is a faint touch of oral thrush on the roof of his mouth. There is no lymphadenopathy. His lungs are clear. His abdomen is normal.
There is scattered pruritic rash on his upper trunk.

A complete blood count shows 9,500 WBCs, neutrophils 73%, lymphocytes 22%. Hemoglobin is 10.6 grams/dL.

How would you assess and treat this man?
What questions would you ask him?
What tests would you request?
What medicines would you prescribe?
What advice would you offer to him?

Discuss the case as a group and then refer to the back page of this issue for comments.

- Adapted from Nanasi case study book


Q&A: SUPPORT TO PEOPLE LIVING WITH HIV OR AIDS

QUESTION from Akonya Primary School: What support can be given to people living with HIV and AIDS?

Answer from AfriAfya KMU Unit

Like everyone else, people living with HIV or AIDS need love, respect and acceptance. Many people who know they are HIV positive are afraid to tell anyone because they are afraid that they will be rejected, even by their family and friends. It is important to make all people feel welcome, and no one should ever be gossiped about. Never make fun of people or accuse anyone of deserving HIV. Anyone can be HIV positive.

Anyone who becomes ill will often need help at home or in hospital. They may need someone to cook food for them, to wash their clothes, to keep their house clean or to help to look after their children.  Sometimes they just need someone to talk to and to show them love while they are sick. Like any person facing health challenges, a person living with AIDS sometimes feels lonely, afraid and sad.

It is important not to be afraid of a person living with HIV or AIDS especially when they are sick. At the same time, people who are HIV negative should protect themselves from infection. HIV is spread through blood, sexual intercourse and breastfeeding. So a person may need to wear gloves when helping somebody living with AIDS, especially if either person has wounds on their skin. If gloves are not available, a clear plastic bag can be used to cover the hands. Make sure that the bag has no holes.  To look for very small holes, pour water into it and check if it leaks. Wash hands after the assistance is completed and discard the bag where it cannot be removed easily by children.

If you are the only one who knows that a person is living with AIDS and they cannot help themselves (eg. if they are bed-ridden), it helps to get a doctor, nurse or community health worker to come and visit. The person may be suffering from an infection that would require treatment. Health professionals will also advise on the types of food that the person can eat and how the food should be prepared. People living with HIV and AIDS need to eat a lot of proteins, fruits, vegetables and carbohydrates. If the person is weak, s/he will need the food to be made very soft and s/he will need to drink a lot of water, fresh fruit juice, and soup.

Hope is the best medicine for any human being. It gives people facing challenges the courage to fight on. People living with HIV or AIDS need a supportive network to help keep their hope alive. Carers and loved ones also need support, love and reliable information about HIV and AIDS.


ANSWER TO THE CASE STUDY

This man, after a good initial response to ARV therapy, is regressing. Most likely, the problem is that the virus is resistant to one or more of his ARV medicines.  Treatment failure presents itself in 3 ways; clinically, immunologically and/ or virologically.

The weight loss, anemia, fatigue and oral thrush suggest his immune status is declining rapidly. This is known as clinical failure.  Clinical failure is likely to be present when a person develops recurrence of opportunistic infections or recurrence of the stage 3 or 4 conditions. These signify disease progression after a period during which the person had no symptoms. People who develop features suggestive of clinical failure are likely to have been failing their treatment regimen for several months.

The following is included as a refresher for NANASI readers: the World Health Organization has developed clinical case definitions for use in developing countries for people living with HIV and AIDS. They are based on clear clinical markers and are outlined in the following table:

Clinical stage 3:

Clinical stage 4:

- Loss of more than 10% of body weight.
- Unexplained chronic diarrhoea for more than one month.
- Unexplained prolonged fever, intermittent or constant, for > one month.
- Oral candidiasis (thrush).
- Oral hairy leukoplakia.
- Pulmonary tuberculosis within the past year.
- Severe bacterial infections, e.g. pneumonia or pyomyositis.
- And/or bedridden < 50% of the day during the last month.

- HIV wasting syndrome, as defined by the CDC.
- Pneumocystis pneumonia.
- Toxoplasmosis of the brain.
- Cryptosporidiosis with diarrhoea for > one month.
- Extrapulmonary cryptococcosis.
- Cytomegalovirus disease of an organ other than liver, spleen or lymph nodes.
- Herpes simplex virus infection, mucocutaneous >one month, or visceral any duration.
- Progressive multifocal leukoencephalopathy.
- Any disseminated endemic mycosis (i.e. histoplasmosis, coccidioidomycosis).
- Candidiasis of the oesophagus, trachea, bronchi or lungs .
- Disseminated atypical mycobacteriosis.
- Non-typhoid Salmonella septicaemia.
- Extrapulmonary tuberculosis.
- Lymphoma.
- Kaposi's sarcoma.
- HIV encephalopathy, as defined by the CDC.
- Bedridden for > 50% of the day during the last month.

A CD4 count would be helpful in this situation to reflect the immunological status of the person. Immunological failure is present if:

there is a return of the CD4 count to pre-treatment levels, or if
there is a fall of over 50% of CD4 from peak value, or if
there is failure of CD4 count to improve or a further worsening of CD4 despite treatment. 

(Most likely in this case study.)

In patients with inter-current illnesses the CD4 count may drop substantially. A treatment change decision should therefore not be based on a single CD4 assessment or one done during an episode of illness. When people have severe immune suppression and very low CD4 counts at the start of their treatment, CD4 recovery may be very slow and /or less than expected. Care should therefore be taken that such people, if they are stable and keeping to their regimen, should not have their treatment changed unnecessarily.

A virological failure is defined as failure to reduce the viral load to undetectable levels after 24 weeks of effective ARV therapy, or a sustained increase in viral load after a period of full suppression. Occasionally people with extremely high viral loads at the start of their treatment may take longer than 24 weeks to fully suppress viral replication.

Viral load is the most sensitive (accurate) way to assess a person's response to treatment. Clinical and immunological assessments are also useful; deterioration of these parameters in a person failing treatment is, however, often preceded by a rise in viral load over several months. However since viral load measurement is not readily available at the moment, many clinicians will change therapy on the basis of clinical or immunological failure.

The man's off and on adherence, no doubt, has been a major cause of the development of resistance to his ARV therapy. Non- adherence is always the main cause of treatment failure. Other causes are viral resistance to one or more medicines, using regimens with low potency, impaired absorption of the medicine, and / or changes in the way the medicine affects the body because of interactions with other medicines or with food.

What is our next plan? The man should stop all of his current ARVs and change to the second line treatment according to the National ART Guidelines. The following should be observed before changing therapy:

  • Do not rush into second-line therapy. As much as possible, a multi-disciplinary team should discuss people who need to change therapy
  • When changing therapy, find out for sure whether poor adherence was responsible for the failure
  • If it is not possible to improve adherence, attempt to start directly observed therapy with a health worker, family member or a friend
  • When starting first- or second-line treatment always review the ART treatment history, including previous preventive therapy for mother to child transmission
  • The new therapy should include as many active medicines as possible. Where possible, the regimen should be changed entirely to medicines that have not been taken previously
  • When changing therapy, review all other medications for possible medicine interactions
  • In people who have lost a lot of weight, consider TB as a possible cause. HIV positive people on ARV treatment continue to be at risk for developing TB. This may therefore not necessarily be a result of treatment failure
  • Do not discontinue the failing regimen until the new regimen becomes available

ETHICAL TERMS GUIDE FOR HIV and AIDS

Language, and the images it evokes, can shape and influence behaviour and attitudes. The words used locate the speaker with respect to others, distancing or including them, setting up relations of authority or of partnership.  Language also affects the listeners in specific ways - for example it can be empowering or disempowering, etc.

Language has a particular impact in relations to HIV and AIDS. Personal attitude and perceptions, including cultural beliefs, perpetuate stigma and discrimination toward persons living with HIV or AIDS.  Misuse of terminology can create cultures of fear and ignorance that can take a long time to change.  The choice of language should always be rooted in a rights-based framework and when relevant, chosen by the persons described by the term in order to respect and empower them.

The following five principles of using HIV and AIDS-related language and appropriate terms may guide NANASI readers in their programs, trainings, and advocacy.

Terms used need to be strictly accurate. For example, "HIV" and "AIDS" need to be used individually and specifically and not always together as if they are somehow the same, interchangeable term.

Language should be inclusive and not create and reinforce a "Them / Us" mentality or approach.  Care should be taken with the use of the pronouns such as "they", "you" and "them" when referring to HIV positive people because they set up a distancing relationship between the speaker and the listener.

It is better if the vocabulary used is drawn from the vocabulary of peace and human development rather than from the vocabulary of war.  Instead of using the term "fighting HIV", the same meaning could be found in words like "response" or "movement."

Descriptive terms used should be those preferred or chosen by the persons described by the term.  For example "people living with HIV" is often preferred by infected persons rather than "victims."

Language should be value neutral, gender sensitive and should be empowering rather than disempowering.  Terms such as "victim" or "sufferer" suggest powerlessness, while "AIDS patient" identifies a human being by their medical condition alone.  Alternative terms such as "living with HIV" recognize that an infected person may continue to live well and productively for many years.

The appropriate use of language respects the dignity and rights of all concerned, avoids contributing to the stigmatization and rejection of the affected and assists in creating the social changes required to overcome the epidemic.

LANGUAGE TO AVOID

PREFERRED LANGUAGE

HIV/AIDS

HIV                                              AIDS
HIV and AIDS                             HIV or AIDS

AIDS orphan

children orphaned by AIDS

AIDS patient                  HIV/AIDS carrier
AIDS sufferers               AIDS victims
HIV sufferers                 HIV victims

person / man / woman living with HIV or AIDS

AIDS test

HIV antibody test or CD4 cell count test or viral load test

AIDS virus

HIV, the virus that causes AIDS

body fluids

(specify the fluid)

catch AIDS

contract HIV or become HIV positive or acquire HIV

died of AIDS

died of an AIDS related illness or died of an HIV related illness

drugs for AIDS

antiretroviral medicines (ARVs) or ARV therapy or
highly active ART (HAART) or medicines to prevent and treat opportunistic infections

full-blown AIDS

AIDS

homosexual
homosexual sex

men who have sex with men
women who have sex with women

HIV-infected person

living with HIV or HIV positive

HIV virus

HIV

person with the HIV virus
"he is HIV"

person / man / woman living with HIV or AIDS
(the term HIV should not be used in the context of "being HIV" - a person is HIV positive or HIV negative, not HIV alone)

prostitute

sex worker

risk group

risky behaviour

safe sex

safer sex

scourge or plague or dreaded disease

infection or epidemic or illness

sexually transmitted disease

sexually transmitted infections

This article was adapted from Ethical Terms Guide for HIV and AIDS co-produced by UNAIDS, UNICEF and the Government of Pakistan National AIDS Control Programme.

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