Normalising HIV Diagnosis and Treatment

In the recent August 2006 Transcript, the newsletter of the Southern African HIV Clinicians Society, the following article by Supreme Court Judge Edwin Cameron caught my attention.  I've posted it here with his permission.

Normalising HIV Diagnosis and Treatment

By Judge Edwin Cameron

My friend Ronald Louw was dean of the law school at the University of KwaZulu-Natal, a proudly gay man, and a treatment activist who was fully informed about AIDS and the fact that it can now be effectively treated and managed.  He was also HIV+ – yet he didn’t know this fact about himself until he was tested and diagnosed on 15 May 2005 – the very day that he was admitted to hospital in Port Elizabeth with severe effects of late-stage AIDS.  He died seven weeks later. His death tells us much about the state of the epidemic in our country today.

Ronald Louw was white, an academic, comparatively affluent and gay.  In this he was different from most of the people on our continent who face death from AIDS.  Yet in his fears, the shame he felt, the self-disentitlement he experienced, he shared all too much with many others in this epidemic of fear and shame.  And in his death he also shared too much, since like him too many are dying unnecessarily of AIDS.

AIDS is no longer a necessarily fatal condition.  It is now a medically manageable disease.  In many millions of cases throughout the world, it can be and is being successfully treated.  Long-term survivors of AIDS are no longer a rare and unexplained exception – for those with access to treatment, they are the norm:  Well over 90% of AIDS patients with access to anti-retroviral medication recover well from their illness and return to productive, re-energised living.  I know this myself, after nine years of successful anti-retroviral treatment.

My friend Professor Debbie Marriott, who runs the St Vincent’s AIDS Clinic at the Sydney General Hospital – one of the world’s oldest and best-regarded AIDS treatment facilities – recently told me that if she had to choose, today, between diagnosis with chronic hypertension (high blood pressure), insulin-dependent diabetes, and AIDS – a choice no one would want to make – she would choose AIDS.  This is because AIDS is more manageable than the other conditions.  Yet far too few people know it.

We know about external stigma and discrimination.  Yet Ronald Louw did not die of these.  He died of something more insidious:  the fear, self-disablement, feelings of contamination, self-rejection and self-loathing experienced by people with HIV, and those who fear they have HIV, even when they know that they will receive support, protection, treatment and acceptance.

In the 1980s, we hedged diagnostic procedures for HIV with elaborate measures to ensure confidentiality and knowledge and consent.  There was good reason: the only product of HIV testing, all too often, was victimisation, ostracism and discrimination.

But this has changed.  Because of the activists’ struggle, treatment is now widely available.  Even in many desperately resource-deprived settings, anti-retroviral treatment is becoming more accessible.

Yet many people, offered the choice of diagnostic procedures whose unusual nature is emphasised, prefer not to be tested.  This I believe is partly because HIV diagnosis is treated as exceptional, and is hedged around with fuss and palaver and hullabaloo, including the requirement of express and specific consent, and the insistence on pre-test counseling.  This may come at a direct cost in lives.

I do not advocate coercion.  Patients should not be coerced (or only extremely rarely) into any procedure.  But where diagnosis could preserve the patient’s life – and where continued ignorance will surely hasten death – the healthcarer’s duty of beneficence demands that accurate, early diagnosis of the treatable condition should be encouraged.  Where possible, diagnosis should be a routine and uncontroversial element in the patient management process.

Where the right conditions exist, we should therefore re-medicalise the diagnosis of HIV, by making it a normal part of medical treatment, subject only to a patient’s deliberate and express refusal to be tested:

• Is anti-retroviral or other life-saving interventive treatment available for offer to the patient?
• Is there some assurance that the consequence of diagnosis will not be discrimination and ostracism?
• Does the patient have some assurance that test will be treated as confidential?

Those conditions are still rare in Africa.  But where they do exist, we must move urgently to normalise the treatment and diagnosis of AIDS.  It has already happened in Botswana, and we should follow suit.

And where these conditions exist, we should even forgo insistence on pre-diagnostic counseling, despite its acknowledged educational benefits.  Counseling should be retained provided that a health care facility is able to offer it without sacrificing the time and energy of its healthcare personnel.  That time is urgently required for diagnosis and treatment of HIV.

It is true that AIDS is a dread disease, and that pre-test counseling assists those with it to adjust to their condition.  But malaria, cancer and insulin-dependent diabetes are also dread, potentially fatal, diseases – yet no testing or counseling protocols inhibit their diagnosis and effective management.

In a mass epidemic of HIV, where mass treatment is now be a realisable fact, pre-test counseling may be a luxury we can no longer afford.  Our commitment to normalising AIDS must now include a commitment to equate its medical diagnosis and management with that of other treatable dread conditions.  That way we can and will save many lives in Africa: and it is that commitment that human rights lawyers and health-care providers have in common.

END