NOW THAT the fight to roll-out antiretroviral treatment for HIV/Aids sufferers has seemingly been won, the bigger and infinitely more complex war against Aids-related mental illnesses has come into sharp and frightening focus.
While welcoming the roll-out campaign, the SA Depression and Anxiety Group (SADAG), Southern Africa’s foremost campaigner against stigma around mental illness, has warned that the psychological and emotional needs of people living with HIV/Aids remain as critical as ever – if not greater.
“In society’s focus on the physical aspects of HIV and Aids, there is a very real danger that we lose sight of how enormous, serious and complex the psychological and emotional needs of people are,” says SADAG’s CEO and founder, Zane Wilson.
“While we are delighted government has finally acknowledged the seriousness of the HIV/Aids crisis and begun the ARV campaign, administering antiretrovirals is only one aspect of fighting this global epidemic.
“It’s not a victory if we can help prolong someone’s life with ARV treatment and then lose that same person because we neglected their emotional, psychological or spiritual welfare,” says Wilson.
“HIV/Aids is closely linked with most major psychiatric disorders, both directly in that it attacks the central nervous system (CNS), and in the less obvious but more invidious attacks on emotional well-being and psychological stability,” says Wilson.
The world’s second biggest killer of adults – depression – runs riot among HIV-positive people and research by Professor Lourens Schlebusch of the Nelson Mandela School of Medicine in Durban has shown HIV/Aids patients are 36 times more likely to commit suicide than the social norm.
The Treatment Action Campaign’s (TAC) Eduard Grebe is “very worried” about the ability of SA’s primary health care system even to correctly diagnose the psychiatric health of patients with HIV. “Nurses at primary health care clinics throughout the country mostly do not have adequate training or facilities to accurately make psychiatric diagnoses. Psychiatric illnesses and mental symptoms associated with HIV are probably seriously under-diagnosed.
“This problem is probably worse in rural areas where specialist psychiatric care is often unavailable and patients have to rely on primary health care clinics,” he warns.
In addition, says Grebe, the Western Cape’s antiretroviral treatment protocol, which has been adopted for the national ARV roll-out, stipulates that patients in need of antiretroviral therapy, but who have uncontrolled depression or substance abuse, must be referred for psychiatric treatment before starting ARVs. This essential, but he is worried about the ability of psychiatric and rehabilitation facilities to cope with the additional patient load.
“This could potentially have disastrous consequences if patients are not treated promptly and, consequently, do not receive ARV therapy timeously,” says Grebe.
Dr Margaret Nair, a Durban-based specialist psychiatrist, warned in 2002 that “at least 60% of patients with HIV/Aids will develop a neuropsychiatric symptom at some stage of their illness”.
Autopsies conducted on people who have died of Aids have shown a pathological link in as many as 90% of the cases.
“All of this is hardly surprising given the enormity of the emotional and psychological impact of finding out you are HIV positive. And, as if this wasn’t bad enough, tens of thousands of people living with HIV have to suffer the social stigma and the barrage of rejection our society still directs towards anyone with any kind of mental illness,” says Wilson.
SADAG operates SA’s only toll-free 24-hour crisis line and counsellors deal with hundreds of cases of severe depression daily. Many of the calls are from people who have recently discovered they are HIV positive.
“Not only is the realisation that you have a life-threatening illness a massive blow to a person, but equally so to their support structure of family and friends. And people living with HIV/Aids will tell how vital it is for them to have the support of family, friends, employers and the greater community,” says Wilson
“Already fragile psyches have to contend with their own feelings of guilt, shame, despair and the realisation that death is closer than one thought. Without a caring, nurturing and non-judgmental support environment, death in fact takes quantum leaps closer.”
Rev. Jean Underwood, an Anglican minister involved in pioneering spiritual work among people living with HIV/Aids in remote areas of the Eastern Cape, concurs. “The imminence of death has profound effects on the spiritual well-being of people. Society has focused almost exclusively so far on the physical and observable effects of the HI virus, but without the spiritual and psychological strength to fight it from the inside, death is invariably closer and more tragic.
However, SADAG, the TAC and Underwood agree that, with robust and resilient mental, emotional and spiritual well-being, HIV/Aids patients can expect longer and more productive lives. “The billion-dollar question now is; can South Africa deliver this?” Wilson warns.