“It’s like they want to punish you in front of everyone”
Healthcare workers must recognise that it is normal to be late for an appointment, or miss taking pills. However Zizi* from the Eastern Cape explains how being late for an appointment — a result of her irregular hours of work — can lead to staff wanting to punish her publicly. They make her wait hours to be seen, and scold her in the waiting area. Her being a sex worker, only worsens this hostility and poor treatment. And it is not just Zizi who faces this. There is an ingrained culture of punishing people who are late — and for those who use drugs, are sex workers, or are queer or trans, the situation is even more dire. Being treated poorly is a key reason why people stop going to the clinic to collect ARVs. This is another reason why TAC will be marching on 1 December to demand 6 month ARV refills for all stable people living with HIV. Getting a 6 month supply would reduce the amount of dehumanising interactions people like Zizi need to have with the facility, something she, and many others, would prefer.
As a sex worker Zizi doesn’t keep regular hours. It means that sometimes she misses her appointment dates at the clinic where she is expected to pick up her ARVs.
Zizi uses Chris Hani Clinic in Buffalo City in the Eastern Cape. She says missed appointments mean she has to put up with rude attitudes by the nurses.
“They will always say you must come back on a Friday because that is the only day they will deal with late appointments. Then when you come there on the Friday they will send you to the back of the queue. It’s like they want to punish you in front of everyone,” she says.
Zizi, who has been on ARVs since being diagnosed in 2015, is currently on a 3 month supply at the clinic. She says that getting a 3 month supply has been a great help to her but 6 months would be even better.
Being on treatment for nearly 10 years now, she says she’s learnt to manage her treatment and to look after her health. She says: “I remind myself every day why I’m taking those pills. Even when I don’t feel like taking them, I drink them because they are what is keeping me alive.”
She says people who are stable should be trusted more to manage their own treatment with 6 month supplies. For her, with fewer clinic trips she would only have to prepare herself twice a year for the stigmatising experience of going to the clinic. Zizi says: “The clinic staff don’t always treat you right. They are very stigmatising especially to us sex workers. Also, all the people who are collecting ARVs have to go to this one container so everyone at the clinic knows you are HIV positive – there is no confidentiality.”
Many sex workers continue to battle with bad staff attitudes. They are often discriminated against and bullied but also have little recourse because they have nowhere to turn, other than the clinics and the very nurses who are abusive.
Zizi says a 6 month supply for stable people would mean fewer people in queues and shorter waiting times, which would be a benefit to everyone.
“6 months’ supply would help patients a lot, even the nurses,” she says.
And she says that more people, even newer people on ARVs can learn to manage their treatment so they don’t have to be at the clinic every month, or every three months.
“My advice to people is to take the pills – every day. Don’t default, watch how much alcohol you’re drinking and always use a condom,” she says.
* Name changed to protect identity
#MoreARVPillsNow
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