Busy Doing Nothing
Beth Harley, Cape Town
Beth has worked for over 20 years as a doctor in the HIV and TB programmes. At the same time she has had to cope with her own health issues. Managing energy has been a steep learning curve. She is a senior student in Cape Town.
Cape Town is a Metropolis with over 4 million inhabitants that encompasses great estates to informal settlements. In 23 years I’ve seen the evolution of our understanding and response to the HIV epidemic, from testing to the provision of basic primary care, to the AIDS denialism of the South African government, to the miraculous introduction of antiretroviral therapy (ART) services at the beginning of 2004. Having been a part of each stage of this evolution has given me a broad perspective of the epidemic.
It works better in clubs
By the end of 2010 there were about 65,000 people receiving ART at primary care facilities in Cape Town (over 17,000 at City Health facilities) but we were losing patients due to congestion, and new patients were struggling to access care. A new ART club model had been piloted by Médecins Sans Frontières in Cape Town where patients stable on ART were batched in clubs of 30 patients.
Clubs met every two months, and after basic health screening, pre-packaged medication parcels were handed out and health education messages given to the group. Annual blood tests, clinical reviews and data recording were also built into the model. Generally people were in and out of the club within 30 minutes – a life-changing experience for many patients. The model was shown to improve both retention of patients in care and viral-load suppression rates. The model was then rolled out at fifteen congested ART facilities in Cape Town and I was asked to be on the steering committee and to mentor four of the facilities. And so began an exciting journey on so many levels.
Is there a social aspect to the clubs?
That was built into the model; when you club 30 people together, some groups gel better than others, but a lot depends on the facilitator. For Youth Clubs which cater for 13-25 year olds, the social component is heavily emphasised as young people are more drawn to their peers.
My own issues
In my personal life, I was just back at work after being off for four months with Chronic Fatigue Syndrome (CFS); I still had daily aching, and symptoms would get worse if I pushed myself at all. I had committed my journey with CFS to being a spiritual journey involving going deeply inward and paying attention. My body let me know every time I did not! I discovered that measure is discerned moment by moment. My usual style of support (going in and doing it all myself) was not an option and I had to stand back. I visited each facility once a month to check their records and chat about their experiences, and otherwise made myself available on request.
What I discovered was that at most facilities a ‘champion’ rose to the top – someone who understood the potential of the club model and passionately ensured that it would work at their facility. An unexpected joy for me was watching the enormous personal growth of some staff members as they tackled this project. Had I used my old style of support I would have stolen this opportunity from them. In assisting and supporting with trouble-shooting, others were given the vision, confidence and company needed for their journeys. My progress reports, aimed at managers, ensured their added support and energy.
Since then, club care has become a standard part of the ART program and our vision for City Health was to have the majority of ART patients receiving care through the clubs; we reached more than 50% in clubs this year.
What is the typical profile of an HIV patient in South Africa?
If you are looking at the whole country, the hardest hit? – it’s young black women. In Cape Town, the highest incidence is among the black people, lower in the ‘coloured community’ and slightly lower amongst the white community. Although the homosexual population is quite large in Cape Town the epidemic is mostly amongst the heterosexual population.
Do you worry about infection yourself?
I have never worried about getting infected (except when I was pregnant, when the consequences would have been very serious). When working with needles, I assume a hyper-aware state and know exactly where everything is. I have seen people repeatedly make mistakes – it’s to do with paying attention.
If you have HIV and you get the right drugs, what’s your prognosis?
With the newer drugs, extremely good. Most take a cocktail of three medicines in one tablet every evening. If taken consistently, there’s the possibility of a normal lifespan with only a minority experiencing side effects. And it’s completely free.
If you start when you are sick it is harder to rebuild the immune system and to control the HIV. There is also a biological factor; some people naturally manage the virus quite well which makes it easier for the medication to control the virus. The main problem is patients defaulting on their treatment and that’s what the clubs are about.
Where were the ARVs developed?
America. And soon afterwards they were able to turn their epidemic around. I was at the international AIDS conference in 1998. It was like 2 parallel conferences running. There were people from the West saying how they had turned the epidemic around and they were closing down hospices. Then you had all the rest of us in the developing world, discussing how to help people to die, and how to upscale hospices.
At the conference in 2000, people stood up and said it’s unacceptable that we have these drugs, and yet they’re not available in developing countries. At the time I thought, you can’t just say it’s unacceptable – these drugs are expensive. But within 4 years ART was available in the public sector in South Africa. I discovered something about how people can change the world by standing up and speaking.
Is there one patient who has stood out for you in your practice?
Too many. I used to work with HIV for many years before the drugs became available and I remember the day I realised I could no longer remember all the patients I had cared for who had died. I also did a lot of teaching on how to look a patient in the face when you knew they were dying, and the importance of still providing the space for them to come to. It’s bad enough for them to be dying from this disease without having health care workers not wanting to see them.
What is your role now?
Most of my work is at programme level now. I only see patients one day every second week at quite a small clinic. It’s not ideal, but it does at least keep me in touch with the programme.
We’re definitely ‘winning’ with a decreasing incidence of HIV, but the total number of patients on treatment keeps growing and resources are constrained; thus in many ways the work is getting harder. However my colleagues are an extraordinary group of people and I love the work. With HIV, the knowledge is changing so rapidly one needs to constantly adjust the program. This makes it a very exciting field to work in.
How do you feel about your work?
I love it. I have watched increasing national and international interest in the club programme, as well as interest from other chronic disease programmes, all hoping to learn from our lessons. I look back on all this and know that I have made a significant contribution to this process whilst ‘doing nothing’. My role has been to stand back and be available, keep attention on where we are and where we’re going, remove obstacles, open a space of potential and keep the vision for clubs, and ironically (from someone with CFS) to provide critical focussed energy that has significantly contributed to the success of the programme.
Recently I read a general recipe for life which sums this up: ‘Let that which does itself, do itself; attend to that which does not, . . . and then with the energy that is saved… work against the ignorance, discovering what is true. . . ‘ (MacLaren Lectures).