Written by: Carmen Urdaneta, Communications Manager, EQUITY Project
The need to develop community support systems to assist AIDS patients in South Africa has never been stronger. Since 1999, the innovative Bambisanani Project has worked to address the urgent need for home-based AIDS care in some of the most devastated areas of South Africa. The Project is serving as a community mobilization model nationwide and proves that community support is crucial to successful health programs. This is a partnership between the EQUITY Project, Bristol-Myers Squibb, the Employment Bureau of Africa (TEBA), Gold Fields Ltd, Harmony, Gold Field Ltd, South Coast and Transkei Hospice, Planned Parenthood Association of South Africa (PPASA), Anglo Gold, the National Union of Mineworkers, and the Mineworkers Development Agency.
Half of South African mine and migrant labourers come from an area along the border of KwaZulu-Natal and the Eastern Cape Province. Almost 40% of the residents are unemployed and do not have enough money for basic food and clothing. TB cure rates fall below 20% in some areas and in 2000, 30% of households had a member fall chronically ill. It is here, in one of South Africa's poorest regions, that the Bambisanani Project focuses its efforts. Despite these odds, local communities are working together to demonstrate that all is not lost, and together, they can prevail.
Bambisanani provides community support by teaching groups of community members, all nominated by traditional leaders, to become home care supporters and trainers to care for the terminally ill. Today, these home care supporters form a wide-reaching referral network working with local hospice, health centres, and hospitals to identify terminally ill patients and families in need of home care support. Once identified, home care supporters provide families with home care kits with basic supplies to make loved ones comfortable and teach families how to address simple health problems. Families learn how to massage to decrease pain, when to administer TB medicines if needed and how to ensure victims do not develop bedsores. Despite what seems to be a depressing situation, one need only remember that before home care, families had no one to turn to as loved ones died in more pain-and with less dignity.
The Bambisanani Project has had to overcome many challenges, including stigma, financial burdens, and children orphaned by AIDS. By including all terminally ill patients, the Bambisanani Project ensures families are not discriminated against and receive the support-in the form of knowledge and supplies-they need. To address the additional financial burden AIDS places on families, many of whom lose their only income-earners, the Bambisanani Project implements income-generation activities wherever home care operates. From bread baking and construction to crafts and jewellery making, local communities are earning needed resources to feed their families and care for loved ones. This work provides a needed source of income, empowerment and escape when families need it most. Finally, the referral network identifies children, such as orphans, and refers them to appropriate support. To date, the Project has:
One community illustrates the impact of the Bambisanani Project…
"We cannot be given things, we must build them ourselves."
-Tribal Chief, Kwampisi Community
Reaching parts of the Kwampisi community in the Eastern Cape Province requires a two-hour drive over mountainous dirt roads from the nearest town. It is difficult to imagine making the trip on foot to reach the local hospital. Kwampisi is a typical community for this region, since most of the men are working and living far from their families. As these men succumb to AIDS and other illnesses, they travel home to die. Their care becomes the responsibility of Kwampisi's wives, mothers, sisters and neighbours-all women who were ill equipped to provide needed care. The Bambisanani-trained home care supporters fill this critical gap. One year ago in this poverty-stricken community of South Africa, there were few resources for the victims of terminal illness. This is no longer the case.
One of Kwampisi's AIDS sufferers is 30-year old Ziketile. He was a sugar cane worker and the only employed member of his family until one year ago, when he became ill. With active tuberculosis, and exhibiting all the symptoms of full-blown AIDS, tears roll down his cheeks as he sits up: "I don't want to die." He feels guilt coupled with physical pain. A woman named Busi is the local home-based care supporter who identified Ziketile's need for additional home care. Busi visits Ziketile almost every day. She gives his mother relief from the 24-hour job of caring for her son. Though watching her son die is a tragedy, Ziketile's mother appreciates the help she has been given: "It is so helpful to have Busi's support." Today, Busi offers advice about massaging Ziketile to alleviate some of his pain. She uses items in the home care kits daily. The aspirin provides pain relief, and the disinfectant helps keep her son's bed-on the floor of a mud hut-as clean as possible. In addition to helping AIDS and other terminally ill patients spend their days with family, each case is helping to overcome the stigma of AIDS in communities. Neighbours and friends enlist to help. Most importantly, AIDS victims feel support. In Ziketile's own words: "It is so good to have warmth in the house."
For more information contact Carmen Urdaneta of the EQUITY Project at carmenu@equityproject.co.za.
COMPLIANCE - THE CORNERSTONE OF SUCCESSFUL THERAPY
Background: Peter Adams founded Treatment Helpline Direct in 1997. He is considered the top patient authority on compliance in South Africa with 8 years successful anti-retroviral therapy. This article is the first of a series.
There is a global culture of trust in various treatments to control and fight medical conditions, infections and diseases. For decades, since the advent of antibiotics, we have been taking the pills with relatively high rates of success. In addition self-medication has also become the cultural norm, where the 'off the shelf' remedy has contributed to a general feeling of well-being. The advantages of the latter are the ad-hoc way in which they are taken - something, which we easily adapt to other modern medicines. If we feel better then we assume we are cured.
Patients therefore live in a world of taking modern treatments for granted, many of which are effective even though we have continued to adapt them to our busy lifestyles. As long as the patient begins to feel better then the boundaries of adhering to the dosing schedule as prescribed by the physician tends to become stretched further and further. For example, patients being treated for diabetes, hypertension and osteoporosis have between 45-68% compliance rates and outwardly patients seem to survive quite happily. When they begin to feel ill, the compliance rate improves and as they feel better compliance deteriorates.
With infectious diseases we have allowed patients to carry on regardless, once prescribing has been done. The shorter the treatment term the less likely treatment failure will occur.
However, many infections have over the years developed resistance to many of the original drugs as 'windows of opportunity' allow mutations to occur. Fortunately medical science has kept ahead with the development of more powerful antibiotics and drugs making some of the originals obsolete and useless in certain circumstances. However as 'super bugs' have emerged it has become increasingly difficult to treat diseases such as TB.
Certain diseases, including TB, have made a return because patients failed to take the drugs in accordance with instructions, drug resistant TB then becoming the norm, requiring longer treatment periods and larger numbers of more powerful drugs. Compliance to anti-TB drugs is rarely higher than 60% overall. With these rates people continue to die unnecessarily of the disease. Additionally, as the HIV infection rate has risen TB has also shown a corresponding increase.
Advanced HIV disease (AIDS) is now technically a chronic manageable condition and should antiretrovirals become generally available, unless we examine compliance issues more carefully, any decision to provide ART with the potential benefits could result in horrendous consequences should TB compliance rates be the norm.
So whom do we blame for patients failing to take their medication on time? Automatically we blame our patient but I propose we look far deeper into the compliance issue. Modern diseases require modern approaches. We even have to look beyond DOTS as in many respects it has failed.
We have to examine all levels of the compliance chain from doctor to pharmacist, health care worker, counsellor, community structure and finally the end user - our patient. Somewhere we are getting it wrong.
Never has compliance been examined in such detail as is the case with treatment for HIV, but the lessons learnt from ART are not unique and should guide us in the treatment of other diseases. We now have the benefits of compliance to ART from the developed world and we ignore them at our peril.
How many times do I hear excuses from doctors and their support associates that they have heavy workloads? How many times do I hear excuses from other health care professionals and social workers that patients do not listen?
The current culture is to blame the patient when the treatment fails when we should be examining our own personal input. We have to start re-educating the whole chain to adopt a different approach within the context of our current procedures. We owe it to our patient.
ART has taught new skills and these can be adapted. Just as bacteria and viruses have adapted, we need to as well so that once again we gain the upper hand. Unless we do the miserable rates of 60% compliance applicable to TB in South Africa when applied to HIV will lead to massive drug failure and a waste of resources and an uncontrollable and even more expensive epidemic. The consequences for South Africa are not even worth considering.
Many continue to fight for access to anti-HIV drugs - this fight must not be in vain.
©Peter Adams Consulting 2002
For more information, please contact Peter Adams at unidos@worldonline.co.za
USEFUL WEBSITES
www.health.gov.za
www.aidsinfo.co.za
www.aidsdirectory.co.za
www.dpp.org.za
www.hst.org.za
www.who.int/hiv
www.saavi.org.za
www.afroaidsinfo.org
www.lovelife.org.za
www.childaidsservices.org
www.equityproject.co.za
www.unaids.org
You are also encouraged to share information on other useful websites. Feedback on the Department of Health website would be especially valuable.
Compiled by Celicia M Serenata
Project Manager: HIV/AIDS
Tel: (012) 312-0128
Fax: (012) 326-2891
e-mail: serenc@health.gov.za
Red Ribbon Resource Centre
For all requests of HIV/AIDS materials (posters etc.), please contact:
Tel: (011) 880-0405
Fax: (011) 880-8552
Address List for Chief Directorate
Fax: (012) 326-2891 or (012) 323-7323
Dr. Nono Simelela
Chief Director: HIV/AIDS and TB
Tel: (012) 312-0121
simeln@health.gov.za
Collen Bonnecwe
Director: HIV/AIDS (NGOs)
Tel: (012) 312-0137
bonnec@health.gov.za
Thami Skenjana
Director: GAAP
Tel: (012) 312-0133
Fax: (012) 325-0165
Dr. Refiloe Matji
Director: TB
Tel: (012) 312-0106
Fax: (012) 326-4365
matjir@health.gov.za
Dr. Rose Mulumba
Director: HIV/AIDS and STIs
mulumr@health.gov.za
Ms. Celicia Serenata
Project Manager: HIV/AIDS
serenc@health.gov.za