Obstacles to effective treatment for HIV and Aids.
The HIV and AIDS Treatment Survey, conducted in November 2005 by Lironga Eparu, Ibis Namibia and the rainbow project (trp), examines health care issues important to people living with HIV and Aids as well as healthcare workers treating them. The recently launched survey not only examines barriers to effective treatment, but also explores who is most negatively impacted by and vulnerable to treatment roadblocks.
Lironga Eparu surveyed 380 members living with HIV and Aids, providing the most conclusive data collection, while surveys completed with health care workers and with gay and lesbian beneficiaries of trp were considerably less. However, the survey questions were comprehensive, exploring the many potential barriers to effective treatment, and in this regard the results from the trp surveys and those of the health care workers also provide telling and useful information.
What leads to ineffective treatment?
The survey found that unemployment and low income are hugely detrimental to receiving necessary treatment for HIV and Aids. Without some type of income it is difficult for many of the poorer people living with HIV and Aids to visit healthcare workers as frequently as they should, fill prescriptions, or risk time away from the few income-generating activities available to them for a hospital or clinic visit that could involve waiting for more than three hours. In the survey the majority of poor respondents were women.
Most of those who reported struggling to stay on antiretroviral medication said that hunger and improper nutrition were the main factors. Impoverished mothers with HIV and Aids are often forced to breast feed longer than recommended to avoid purchasing expensive formula for infants. This puts their babies at risk of HIV infection.
Social grants are a potential help in overcoming the problematic relationship between poverty and treatment. However, many respondents were unsure if they qualify for social grants. On top of that, many who should qualify for the social grant from an income perspective are not actually receiving one because their CD4 count, a measure which indicates how much a person's immune system has been weakened, was still higher than 200. The current structure of the social grant requires patients to maintain a CD4 count below 200 to continue receiving the grant. This is an obvious deterrent to patients to adhere to their antiretroviral treatment and thereby boost their CD4 counts to healthier levels.
What is wrong with existing treatment?
The stigma and misinformation surrounding HIV and Aids result in discrimination against many people living with the virus. Poor or unfair treatment was reported by 21% of respondents. Fear of the double discrimination based on their sexual orientation in addition to existing stigma against people living with HIV kept 61% of the trp survey respondents from seeking aid from a healthcare worker. Strong fears of being discriminated against portray the need for more peer education among those living with HIV, provided, for example, by "expert patients."
The high costs of running CD4 and viral load tests (which assesses the potency of the virus in the blood stream) prevent many clinics and hospitals from regularly administering these tests. However, regular CD4 and viral load testing could provide patients with the psychological boost of being able to see the progress they are making by strictly following their ARV treatment, and this would encourage greater adherence to treatment. Once started, ARV treatment must be taken for life, and breaking off treatment can cause the virus to become immune to the medications currently in use.
Why aren't healthcare workers doing a better job?
In the survey of healthcare workers, nearly half the respondents acknowledged that the high number of patients per staff member prevented better patient care. With so many patients, appointments are brief, resulting in decreased quality and the lack of a personal relationship between healthcare workers and patients. This does not enable patients to be actively involved in their treatment and minimises the moral support provided by healthcare workers.
With so little time, it is also difficult to ensure that patients understand all they are being told. Consultations conducted in English or through translators with little knowledge of HIV and Aids potentially disempower the patient and restrict access to important information.
The majority of the healthcare workers, regardless of seniority, also admitted that they required more training in anti-retroviral treatment. 11% of the respondents who had received training on the first Ministry of Health and Social Services guidelines for treatment either didn't understand or had never read the guidelines.
How can we effectively treat HIV and Aids?
The survey suggests many ways in which treatment in Namibia can become more feasible and effective. These include greater patient involvement; incorporating prevention and treatment information specifically targeted at the lesbian and gay community into mainstream awareness campaigns; providing more information about reproductive rights and responsibilities; including men's voices as an integral part of prevention; offering viral load and CD4 tests more frequently; promoting inexpensive nutrition education programmes; providing income support to poor people living with HIV and Aids; focusing on counteracting and eliminating stigma and discrimination; highlighting ongoing treatment successes rather than failures; offering treatment information in the home languages of patients; and conducting further research into treatment adherence problems and different counselling approaches.
Support from the Ministry of Health
Launching the HIV and AIDS Treatment Survey recently in Windhoek, Dr Marcus !Goraseb of the Ministry of Health and Social Services thanked Lironga Eparu, Ibis Namibia and trp for conducting and sharing the findings of this study, saying that it provided important information and excellent recommendations for his ministry and other partners to improve on the treatment of all people living with and affected by HIV and Aids in Namibia.
"Two people interviewed by the rainbow project said that before their regular visit to the anti-retroviral clinic, they would stop taking the medication so that their CD4 count would fall and they would not lose their social grant." Enumerator in Grootfontein "People reported to enumerators that the practice of separating STD clinics and ART clinics into different waiting areas for the patients demotivated them from coming forward to seek treatment because of gossip."