World TB day is March 24th and Swaziland will be launching their National TB strategy. Swaziland has the highest worldwide prevalence of TB, as well as a growing MDR TB problem and documented XDR cases; although we aren’t certain of the extent of XDR as we rarely test 2nd line drug sensitivities - these have to be sent to South Africa.
We are hoping King Mswati III, the ruling monarch and head of government, will declare TB a national emergency as he did with HIV in 1999. So, the national TB team is diligently working on strategies to raise awareness of TB amongst the population.
We were discussing community action in the TB meeting, what we could learn from actions to reduce HIV stigma and from neighbouring countries. One question was, “Does Swaziland have a Miss Stigma Free Pageant?” These are held in other Africa countries.
I’m doubtful of their effectiveness of reducing stigma but there is certainly growing popularity.
We were discussing the Botswana Miss Stigma Free pageant and the feasibility of sometime similar here. Each year Swaziland does crown a 'Miss KFC' (I think the name is because it is sponsored by the very popular Kentucky Fried Chicken).
Our reigning Miss KFC has vowed to get involved in HIV prevention campaigns by encouraging abstinence amongst her peers. I remain unconvinced on this one also. As a bit of humour, I suggested that maybe we try to combine this by calling it “Miss KFC with TB who is Stigma Free.”
No one thought this was funny.
But all of this talk of methods to reduce stigma made me think about my encounters here with HIV and TB stigma.
When I first arrived here I think I wrongly underestimated the impact of stigma on patients. I had assumed that stigma is a problem when someone feels like part of a minority or different from those around them, someone who is not in the “norm” of society.
So how can someone with HIV feel stigmatised in a society where the HIV prevalence is 26%? No one remains untouched here. Everyone has a neighbour or family member who is infected, has died or is left orphaned.
I suppose stigma starts on our own doorstep. As doctors, nurses and healthcare workers at our hospital we show how uncomfortable we are speaking about HIV, personally and in our patients.
I often read in a patient’s clinical notes, “patient is RVD +” (retroviral disease), or “Patient is HTC +” (Heathcare Initiated Testing in Counselling), or “VCT +” (Voluntary Counselling and Testing).
In the beginning I had to ask what these terms meant. It is all just another way of stating someone is HIV positive. Another time, our hospital staff attended a meeting where the facilitator, who was from abroad, believed in tackling stigma head on.
He had asked us each to go around the room introducing ourselves and then tell about our personal experience of HIV testing. Some were quite comfortable talking this. They shared stories of needlestick injuries and other exposures from HIV infected patients that required them to test and sometimes take PEP (post exposure prophilaxis).
They were the ones often who announced with great relief that their test results were negative. Others avoided this question entirely, including two staff that I know to be taking anti-retrovirals. To see their discomfort and know they must suffer this in silence was very difficult to see. There is still so much fear and discrimination. It seems we have so far yet to go.
Then there are the 2 national newspapers, with the daily obituary announcements full of photographs of young beautiful people in the prime of their lives. Not entirely surprising in a country where the life expectancy at birth has dropped to an all time low of 33.
Our national mortality and demographic reports tell us the primary cause of death and the real reason why the obituary pages are full. Yet, I have never once seen either words “TB” or “HIV” mentioned in a report or obituary.
I see it more often in our HIV patients than with our TB patients. Some of the wealthier patients travel two hours each month from Mbabane and Manzini, not because of lack of ART facilities, but because there is greater anonymity with greater distance. They want to remain unknown. It is a different matter with our poorer patients who don’t have this luxury of choosing.
Their stigma is even more challenging. Often they don’t discuss their HIV status with their own spouses or family members. I have also seen the family member stare in disbelief and shock as this is the first time they have heard this news. There have been a couple of times when I have discussed treatment with a known HIV positive patient who has arrived with a spouse or parent. When I ask them their latest CD4 results, they look down and feign ignorance, hoping I will somehow change the subject. I don’t.
It does also happen with our TB patients. One of our community MDR patients lives in a one room hut with 4 children and a husband. Concerned about the potential spread to the other family members, we erected a tent next to the home as the only potential solution to limiting the spread of infection amongst the whole family sleeping together in one tiny room. Within 3 weeks this tent was dismantled. When I enquired about this, the nurse translated to me, “they said it is too cold to sleep in this at night.” I thought this sounded very unlikely. Once we left the home the nurse told me “the real reason was that they didn’t want to have to deal with problems from the neighbours who will see this tent” Apparently this tent would be such a conversation piece in the community that the husband agreed to take it down so it would not cause alarm.
There is stigma toward HIV testing. Seventy percent of our patients who come for voluntarily HIV testing are women. Men often come late to test when they are symptomatic, or when they are admitted to the hospital wards in the final stages of AIDS.
I sometimes wonder which will happen first. Will it be that people will become more open, stigma will reduce and then we will start getting better at testing and treating? Maybe it will take someone high profile deciding to go public. I wonder what would happen if one of King’s Mswati’s 13 wives or 23 children became infected—maybe there is one already? On a day when I feel pessimistic, I think things have to get worse here before they get better.
Will it be that the HIV and TB prevalence will continue to increase, people continue to die and then we reach some sort of tipping point where people will be forced to talk more openly about it, demand better services and stronger action? I think the HIV forecasting reports suggest that the HIV prevalence (and therefore the TB prevalence) will not be decreasing over the next 5 years. So I don’t know what stigma will be like in the coming years.
I do know that there is a funeral service next door to the hospital. It even shares the same name as us (see picture). They appear to be doing a brisk business. All of us at the hospital know why so many of our patients ultimately end up next door here. The funeral service knows also. It would just be nice if all of our patients did not have to arrive there in this cloud of shame and secrecy.