OPINION: Crisis as Free State ARV programme collapses
The AIDS epidemic in our country, over more than 10 years, has had sadly many more downs than ups.
The small victories, sometimes in the courts, sometimes in a hopeful utterance by a politician, became straws we clung onto believing that a better day would come.
We were all slightly shell-shocked when President Kgalema Motlanthe announced without warning in September last year that the then Health Minister Manto Tshabalala-Msimang would be redeployed to his office while ANC backbencher Barbara Hogan would be handed a task that many feel is impossible.
For many years the then President Thabo Mbeki, his health minister Tshabalala-Msimang and some of their allies in government had resisted attempts to introduce anti-retroviral (ARV) drugs for the millions of South Africans in need of it despite
International research that showed beyond a reasonable doubt that an ARV treatment programme was the best hope for those already infected.
For years we would travel to the far-flung corners of our country interviewing caregivers, families, those living with HIV, children and many others who shared their stories of grief, fear, panic, hopelessness, anger and despair at being denied access to a handful of pills that would save their lives or those of their patients or loved ones.
Our first real glimmer of hope came in 2003 when Cabinet unexpectedly released a statement endorsing the introduction of ARVs in the public health service.
But the health minister and her supporters continued to obstruct, delay and deny treatment on many levels.
The release of the National Strategic Plan at the end of 2007 provided another injection for South Africa’s treatment plan which was increasingly and eagerly wheeled out by politicians as one of the ‘largest in the world’. Of course they failed to mention that many people first had to pay with their lives and the limited success of the programme was despite their hindrances.
Hogan’s elevation and the final removal of Tshabalala-Msimang left everyone with a sense that finally things would gather momentum and there was the real prospect of a better life for those relying on the public health sector.
For a while we all basked in the ‘honeymoon’ phase relieved that there was a Health Minister who was prepared to unequivocally state that HIV causes AIDS and make sure those needing ARV treatment are able to access it.
However, the euphoria, ended last November when e-mails leaked from the Free State health department revealed that the province had run out of ARVs and it had stopped admitting any new patients onto ARVs. Hogan reacted immediately and sent a task team to the province, managing to gather emergency funds which would tide the province over until the next financial year.
The impression was created that a return to the Mbeki-Manto nightmare days had been averted and people went off on their Christmas breaks. However, unbeknown to many the situation deteriorated rapidly. Doctors, nurses and caregivers sent increasingly desperate reports of hospitals and clinics turning new patients away or patients already on treatment being told there were no drugs and they would have to return on another day.
The collapse of the Free State’s ARV treatment programme was soon to be followed by pretty much its entire health system as the health department announced far reaching cutbacks. Provincial health authorities have made very little or no effort to communicate with their staff who are desperately trying to keep people alive or comfort those facing death. In the meantime, a waiting list of 15 000 people is growing by the day while the province shows little sense of urgency to solve the problem.
Perhaps this is because many of these people are poor and have no way in which to make their voices heard. The damaged caused by the decision to impose a moratorium will for many years play itself out in the mining province.
In the four months since the story broke, not much has changed. While the national government has gone the extra mile in trying to clean up the mess left by the province, the limits of its power to compel the province to put its house in order are all too clear.
Many lives have been lost and many more will pay the price for incompetence and provincial politicking and those who make these life and death decisions. A visit by the AIDS Law Project to the province in February revealed that nothing had changed since November. If anything, the situation had deteriorated with the waiting list growing longer, people on treatment being forced to default because of a shortage of ARVs and doctors pulling their hair out as they were forced to stand by and watch young patients die.
Patients’ immune systems have dropped to dangerous levels as they wait for their medication causing long term damage and increasing the likelihood of them contracting fatal infections. This who have had their treatment interrupted will develop resistance to their current drugs and if they survive will have to be placed on very expensive second-line drugs often with more side-effects.
There is speculation that the breakdown was not purely the fault of the provincial health department, but also the provincial bean counters who appear to have used political motivations for withholding money, with some citing a power struggle between the Mbeki-supporting health MEC and a Zuma-supporting finance officer as one of the reasons why the money tap was simply turned off once the health department had reached the end of its budget.
One also has to ask where has Premier Beatrice Marshoff, the ultimate custodian of her province, been in all of this? Has the former nurse and member of Parliament’s health portfolio committee not heard the cries of her residents?
Marshoff failed to mention the ARV crisis in her State of the Province address. She reportedly later denied assertions that the province’s health care system was in tatters and told journalists thatthe provincial government could assure its citizens there was no crisis in health care and that the government would provide adequate health care.
But surely 30 AIDS-related deaths every day and 20 babies unnecessarily infected every month (according to HIV Clinicians Society figures based on solid research papers) constitutes a crisis?
HIV Clinicians paint a clear picture of the price this province’s residents will pay for many years to come ‘ whether through the imminent deaths of loved ones, children being orphaned or those infected battling to recover from debilitating opportunistic infections as their immune systems have become very weak from the delay in getting medicine.
‘At worst these people will die,’ says Dr Francois Venter, President of the HIV Clinicians Society which has been trying to support doctors battling to cope with the overwhelming numbers of very sick patients presenting to the treatment sites.
‘If they are lucky enough to survive they are at great risk and almost certain to contract unnecessary illnesses such as TB, pneumonia and meningitis. It’s the long-term consequences were going to face because of this decision which really quite simply involves terrible illness,’ says Venter.
Venter said he found the ‘casualness’ with which the decision was taken to implement the moratorium in the Free State alarming.
‘The consequences for the poor are profound and they will become the quiet victims in all of this. This a dumb way to deal with illness. People are going to end up in hospital needing intensive treatment and care, they are going to become resistant to the first line drug regimen and will have to put onto second line treatment which is expensive and comes with all kinds of other side-effects, ‘ says Venter
Top HIV paediatrician Dr Ashraf Coovadia explains that children’s immune systems are not as fully developed as those of adults which means they have to get onto treatment as soon as they are diagnosed HIV positive. Not accessing treatment or delaying it equals death or the prospect of painful and horrendous opportunistic infections.
Treating them once they have fallen ill is complex involving hospitalisation and intensive care.
Coovadia said it was also very difficult to retain the trust of the patient and their caregiver if the treatment is constantly interrupted, more often than not with fatal consequences.
He adds that another worrying factor was that reports were indicating that women were not accessing the Prevention-of-Mother-to-Child transmission programme which means many children will end up being infected and ultimately dying if they are not diagnosed and treated in time. ‘The fact that they are being infected in the first place is disastrous,’ says Coovadia.
On paper the moratorium has been lifted in the Free State, but on the ground the picture is very different. What is happening in the Free State is a crime against the people of that province and we need to ensure that their deaths are not simply swept under the carpet, but that we shine a very bright light on those responsible and hold them accountable. This can never happen again.