Amongst the many challenges involved in the diagnosis and treatment of TB is the issue of stigma attached to this disease. Stigma can be described as a social determinant of health, whereby a particular trait or characteristic (in this case being infected by TB) is seen as being undesirable or disvalued. Affected individuals may feel shame, disgust or guilt, and this can lead to their adopting behaviours that interfere with the diagnosis and treatment of the disease.
Stigma is considered to be a significant obstacle to the control of TB, and as such has been studied in communities across many parts of the world. A useful review of 100 of these studies was made in 2010 by Courtwright & Turner (Public Health Rep. 2010; 125(Suppl 4): 34–42). They found that the most common cause of TB stigma is the perceived risk of transmission from TB-infected individuals to susceptible community members. Depending on geographic region, however, TB is also stigmatized because of its associations with HIV, poverty, low social class, malnutrition, or disreputable behaviour. In many communities fear of stigma leads at-risk individuals to delay going for screening or seeking medical care. It has also been identified as a cause of non-compliance and failure to complete their treatment.
We have unfortunately seen plenty of evidence of TB stigma and its effects during our work in Uganda and South Africa. Health workers have described to us how people are reluctant to come for tests in case they are diagnosed with TB, and some patients have also admitted to us that they delayed seeking medical advice for this reason. Misunderstandings about the way TB is spread mean that people may be shunned or are afraid of being shunned and may lose their jobs. Because the illness often means that people become weak and cannot work, they are afraid of admitting they have it.
For those already suffering with HIV, a diagnosis of TB is particularly frightening and may even be seen as a death sentence. This is because many people with HIV do actually die from TB, but fear also comes from being told that they may have to reduce or stop taking their ARVs once they start on TB medication, because the drugs are not compatible.
Patients may not even want to tell their families friends or workmates that they have TB symptoms or have been diagnosed with TB and are taking medication for it. One man in Uganda told us that he was afraid of his fiancée finding out, because he believed she would refuse to marry him. On another occasion a mother came to pick up TB drugs for her daughter who was at boarding school (completely against the WHO’s DOTS policy which is that patients should be seen to take their medication every day). Her daughter was duly taking them, however, but in secret in the confines of a bunk bed in her crowded dormitory. If her friends or teachers found out that she was under treatment for TB her education would have been immediately terminated. Such concealment from partners and close family members can mean that they are unknowingly exposed to a high risk of infection. It can also be an obstacle to daily treatment regimes such as DOTS and moxa therapy, where a health worker, a close friend or a family member may be required to assist the patient.
In our moxa programs patients need to be seen regularly by health workers to check that they are using moxa correctly and to monitor their progress. We have learnt that this can be a very frustrating process; because we have focussed on recruiting only patients diagnosed with TB, moxa use in these communities has become associated with this disease. Patients may be afraid of family or neighbours seeing them being visited by health workers or Moxafrica staff as it is a sign that they have TB. They may not be happy even to be contacted by phone in case someone else answers, and so they may give a false number when registering at the clinic, making follow-up treatment very difficult.
One of the most worrying consequences of this stigma affecting home visits, is that some patients do not like to be visited by anyone wearing a protective mask, because these are associated with TB and are a sign to neighbours that something is wrong. Because of this, carers in Nyanga have not been using masks to protect themselves during daily visits, even when visiting patients with drug-resistant TB which they should do in line with WHO policies. Given the frequency of their visits and the close proximity to the patient, often in a very small, poorly ventilated space, this is putting them at significant risk of infection.
So what can be done to reduce these problems of stigma? And how can we encourage people to use moxa without it becoming associated with frightening conditions?
Where TB is concerned, education to clear up misconceptions about infection and risk is obviously important, and one initiative that has helped in many communities is the establishment of TB “clubs”, where patients and their families can meet and discuss their illness and treatment. In Nyanga, our carers at SACLA have set up a similar arrangement in the form of patient support groups, which meet every week at a community centre. A free cooked meal is provided by Moxafrica and information about moxa is available for TB patients. From my visits to the support group, it’s clear that the free meal is a great incentive to attend, and it is a good opportunity to collect patients together to discuss the benefits of moxa. However, as long as we are limiting our moxa treatment to TB patients only, there is still the association of moxa with this disease that may discourage people from using it, or being seen to use it.
Moxafrica was set up as a charity specifically to investigate the possible use of moxa to help TB patients, but is it time to broaden our outlook? We all know that moxa can benefit health in countless ways, and indeed, some of the carers working with us in Africa have been discovering some of these through their own experimentation. For example, seeing that their TB patients reported improvements in joint pains when using moxa, they began giving it to other patients with arthritis and back pain. They are excited by the positive results, and we have been asked many times whether moxa could help with other problems such as HIV. Up to now, because our focus has been on TB we’ve had to discourage them from using moxa to treat anything else. But if moxa could be seen as a general healing therapy suitable for everyone, we might get over some of the difficulties of using it with TB patients.
Despite the stigma problem, I’ve met patients in South Africa who’ve sung the praises of moxa and told their friends about it. But they are still just a tiny proportion of the local population. We need more of this to be going on – we need doctors in clinics to be hearing about its benefits from their patients, and we need it not to be seen as anything frightening or associated with stigmatised conditions. It’s always been an intention of Moxafrica that moxa should become integrated into whatever culture we introduce it to, and become a part of their medicine, adapted in whatever ways they find useful for their particular needs and conditions.
So how can this happen? Whilst not becoming distracted from our main focus on TB, can we introduce a wider intention for moxa use? Do we teach new protocols? Do we suggest treatments for a few specific conditions or introduce a general protocol for overall health? The questions go on... we welcome your feedback!