A life-or-death situation

A year ago Phanuel Maluleke was content with the world. His CD4 count was stable, and his fixed-dose combination ARV treatment was working well. Today, he’s worried he might die.

Maluleke, who lives in Vyeboom in the Vhembe district in Giyani, was diagnosed HIV-positive in 2006, and has been on ARVs ever since. He tells how things went from good to life-threatening.

Maluleke was initially identified for the Central Chronic Medicine Distribution and Dispensing (CCMDD) programme. It was good news – he was given a six-month supply of medicines, saving him time in long queues and trips to the clinic, and giving him greater control over managing his treatment.

After the first six months, he returned to the clinic to be re-examined. He was stable, and his next six-month supply was approved.

But that was when the wheels fell off, he says, speaking from his home on a warm autumn day. He was told by clinic nurses that there were not enough drugs to give him a six-month supply. Instead, he was given a one-month supply.

That was just the beginning of his problems. After a few months of receiving one-month supplies, his medicine was further reduced to seven tablets; and then, on some visits, to just five tablets.

“Every time it is ‘share, share’. Sometimes they can give you seven or maybe five tablets, and they say, ‘come tomorrow, come tomorrow’,” says Maluleke.

For Constance Mphatudi, a Treatment Action Campaign branch organiser for the district, the situation is dire.

“Every day I am preaching to people to take their ARVs, but there’s nothing we can do. Even when we phone the Stop Stock Outs number, it doesn’t help; they can only do so much.

“I know that some clinic sisters are even taking their private cars and driving to some other clinics to get maybe two boxes of drugs for people, but they have to share that with maybe 50 people.

“One patient was telling me that if she went to buy her own pills, it would cost her R348; and she was crying, because she doesn’t have the money,” says Mphatudi.

Mphatudi, who makes regular visits to clinics in the region, knows that stock outs are an issue of human error and administrative bungling. She says that often the nurses’ hands are tied. She has witnessed nurses phoning again and again to request that their dispensary scripts be filled and being told by the Polokwane depot that the deliveries are on the way. However, they seldom arrive on time; and medicine cabinets remain bare. Sometimes, Mphatudi says, even basic painkillers are not available.

Mphatudi is also concerned that many people who are turned away simply do not return to try again. For many people it is just too expensive; and for those who are unwell, the journey of walking and waiting is too taxing.

“You maybe have to go there three or four times a month, and it’s R30 every time. Our clinics are failing – it’s not right,” she says.

It’s desperate times for Maluleke. Stock outs means his health hangs in the balance. He also feels angry that despite being a model patient, who has adhered to his treatment properly, he is being punished. He knows on paper somewhere it looks like the CCMDD programme is working; but the reality for him is that it isn’t.

“I’m not feeling well. I’m worried that one time I will go back to the clinic and they will tell me they don’t have any medicines, and I’m going to die,” he says.

A year ago Phanuel Maluleke was content with the world. His CD4 count was stable, and his fixed-dose combination ARV treatment was working well. Today, he’s worried he might die.

Maluleke, who lives in Vyeboom in the Vhembe district in Giyani, was diagnosed HIV-positive in 2006, and has been on ARVs ever since. He tells how things went from good to life-threatening.

Maluleke was initially identified for the Central Chronic Medicine Distribution and Dispensing (CCMDD) programme. It was good news – he was given a six-month supply of medicines, saving him time in long queues and trips to the clinic, and giving him greater control over managing his treatment.

After the first six months, he returned to the clinic to be re-examined. He was stable, and his next six-month supply was approved.

But that was when the wheels fell off, he says, speaking from his home on a warm autumn day. He was told by clinic nurses that there were not enough drugs to give him a six-month supply. Instead, he was given a one-month supply.

That was just the beginning of his problems. After a few months of receiving one-month supplies, his medicine was further reduced to seven tablets; and then, on some visits, to just five tablets.

“Every time it is ‘share, share’. Sometimes they can give you seven or maybe five tablets, and they say, ‘come tomorrow, come tomorrow’,” says Maluleke.

For Constance Mphatudi, a Treatment Action Campaign branch organiser for the district, the situation is dire.

“Every day I am preaching to people to take their ARVs, but there’s nothing we can do. Even when we phone the Stop Stock Outs number, it doesn’t help; they can only do so much.

“I know that some clinic sisters are even taking their private cars and driving to some other clinics to get maybe two boxes of drugs for people, but they have to share that with maybe 50 people.

“One patient was telling me that if she went to buy her own pills, it would cost her R348; and she was crying, because she doesn’t have the money,” says Mphatudi.

Mphatudi, who makes regular visits to clinics in the region, knows that stock outs are an issue of human error and administrative bungling. She says that often the nurses’ hands are tied. She has witnessed nurses phoning again and again to request that their dispensary scripts be filled and being told by the Polokwane depot that the deliveries are on the way. However, they seldom arrive on time; and medicine cabinets remain bare. Sometimes, Mphatudi says, even basic painkillers are not available.

Mphatudi is also concerned that many people who are turned away simply do not return to try again. For many people it is just too expensive; and for those who are unwell, the journey of walking and waiting is too taxing.

“You maybe have to go there three or four times a month, and it’s R30 every time. Our clinics are failing – it’s not right,” she says.

It’s desperate times for Maluleke. Stock outs means his health hangs in the balance. He also feels angry that despite being a model patient, who has adhered to his treatment properly, he is being punished. He knows on paper somewhere it looks like the CCMDD programme is working; but the reality for him is that it isn’t.

“I’m not feeling well. I’m worried that one time I will go back to the clinic and they will tell me they don’t have any medicines, and I’m going to die,” he says.