Clubbing in Kibera

"This doesn’t happen everywhere, this unique and is making a huge impact on people’s lives."

Kibera.  It took me a while to remember that scenes from The Constant Gardener were filmed here, and took me even longer to remember that I had bought the book (one of those fake novels with a funny glossy cover where the pages are photocopied and stuck together) at Nairobi airport when I had an 8-hour layover here many years ago.  Although I have visited Mombasa, and spent way too many hours in transit in Nairobi airport, this is my first time in the city itself.  It reminds me a lot of Johannesburg. 

I am here for two months as an anthropologist working on a qualitative research study to explore perceptions of Medication Adherence Clubs, or MACs.  Qualitative research, in general, focuses on words rather than numbers.  I ask people ‘why’ and ‘how’, rather than counting ‘how many’.  I spend time in the clinic talking to people, hanging out in the waiting room and engaging with them to learn more about their thoughts on MACs.

The MACs are a quick, easy way for patients in and around Kibera to collect their medication.  Rather than spending a whole day waiting in the clinic, they come once every three months to collect their drugs in a group of up to 30 people.  The drugs are pre-packed and waiting for them in rows of named, brown paper bags, like takeaways lined up on the counter of a fast-food restaurant. 

The volume of medication amazes me sometimes: I have become so used to seeing MSF’s innovative, patient-centred models of care that I often have to step back and remind myself that this doesn’t happen everywhere, that it is unique and that is making a huge impact on people’s lives.  Chronic health conditions such as HIV, diabetes or hypertension require taking daily medication, but someone cannot take their medication regularly if they can’t access it in the first place.  MACs are one way of easing this access.    

My days are spent in the clinic talking to people people about their ‘clubbing’ experiences (or, in some cases, waiting hours for patients to arrive so we can discuss their views on MACs).  I am also doing a series of focus group discussions and in-depth interviews with health-care workers to find out how they feel about MACs and what – if any – the challenges of implementation have been.

My favourite part of the day is the walk down the hill, through Kibera, and up the other side to the Kibera South Health Centre.  Always escorted by a guard, I have memorised which rocks to hop over, which bit of the bridge is rickety, which children are going to shout “how are you?” at me as I walk past.  I know where to buy bananas, which chapatti seller to choose and what time of day the fried-fish lady is going to come out of her home and start her afternoon cooking. 

I imagine living in Kibera and needing chronic medication.  I think about what it is like to be told that I have to come to the clinic once a month to collect my drugs.  I then imagine doing that when it’s hot and raining and I have to pick my way through the sewage and construction and chaos, trying to avoid my neighbours so that they don’t ask me why I am going to the clinic again.  I think about arriving in the clinic and being told I have to wait.  I will have to wait because of the large number of people in line before me, because of the limited number of clinicians that can see me; because of the urgent cases that need seeing first.  I then imagine waiting in line at the pharmacy to pick up my drugs before hiding them in the bottom of my bag so that nobody at home sees them or hears them rattle.  Patients report experiencing stigma and discrimination when disclosing their HIV status, and telling a partner or family member can be very difficult.  I imagine doing all of this as someone who is considered to be ‘stable’, who takes their medication regularly and isn’t sick.  Who is living a normal, healthy life and just needs to take their pills every day.  Then I wonder what it would be like if, instead, I only had to come to the clinic once every three months and would find my medication waiting for me. 

That is where MACs come in.  After being implemented just over a year ago, my research asks what patients and health-care workers think of their clubs.  Are they saving people time?  What kind of support system do they offer?  What is interaction within the groups like?  Do patients still have challenges with collecting their medication that we can offer an additional solution for?  Staff and patients have their own suggestions, and their voices – as the ones implementing and attending MACs – are the most important.

One of the big questions to ask is about stigma (a theme which follows me on all of my missions, whether HIV in South Africa, Ebola in Liberia or now, HIV and diabetes and hypertension in Kenya).  The interesting part of the MACS – and something which makes them different from other adherence clubs MSF runs – is that the patients collecting medication are not all HIV positive.  Some of them have diabetes, some hypertension, some both.  The relationship of mixing these groups is complex.  On one hand, patients tell me that the MACs break down stigma because HIV is seen as ‘just another chronic disease’: they do not have to disclose their status or tell other people what they are collecting medication for.  But, on the other hand, mixing the groups makes some people uncomfortable talking about HIV because they realise that not everyone present is HIV positive and tell me that they do not feel able to disclose in front of others.

I am still analysing and reflecting on this complex web and conflicting opinions about stigma but what is clear from my research so far is that MACs are welcomed by patients and health-care workers alike.  Patients talk about how the clubs save time, give them information about their diseases and offer a different way of collecting their drugs.  They are not perfect, but the aim of a study such as this one is to find the challenges and suggest ways of fixing them.  I have another three weeks in the field to finish data collection, analysis and writing up.  I apologise in advance to my colleagues for the lengthy qualitative report that is going to come their way: I am gradually mastering the art of the MSF bullet point recommendations, but sometimes there is too much to say to fit onto four sides of A4.