Patient-centred approach for MDR-TB treatment: Are we ready?

Alice Tembe, CNS Special Correspondent, Swaziland
Dr Jennifer Furin (L), Alice Tembe (R)
As the world gears up for ‘The New Agenda: Lung health beyond 2015’ - the inspired theme of the 46th Union World Conference on Lung Health taking place in Cape Town, South Africa, a new buzz word doing the rounds is about keeping patients central to all treatment approaches and not merely a number in data.

Chatting with CNS (Citizen News Service) Dr Jennifer Furin, Assistant Professor of Medicine and Anthropology at Case Western Reserve University, USA, passionately said that if this approach is to work, and if we need to engage the community and successfully manage multidrug resistant TB (MDR-TB) in the community then we should stop asking for workable solutions from the laboratory technicians, medical doctors, nurses or even the researchers, as these people are not the valuable resource in this approach. We need to approach the patient instead.

Treatment sustainability

Dr Furin expressed that we need to stop recycling TB care approaches if the vision is to move beyond the results we have today.

“TB Directly Observed Treatment Strategy (DOTS) Strategy is a fundamentally established and practiced mistrust of the patient. This needs to stop. It is inappropriate and an unfair expectation from the patient. Research done in India has shown that only about 20% of the patients on DOTS are actually observed. It also suffices to say that despite DOTS, we are still lamenting about treatment adherence and treatment incompletion. The strategy does not seem to be working effectively for drug sensitive or multidrug resistant TB (MDR-TB) treatment,” said Furin.

She further expressed that we expect patients to travel to the health centre regularly and be observed while taking their medication, forgetting that these are largely poor and sickly patients. This is hard and unsustainable and so patients often do not complete treatment. As we approach community based care, we must be wary that the care givers are mostly poor women who by themselves are in need. The expectations have been that they volunteer care and support work in the community. The fear has been that giving the community caregivers an incentive is not sustainable.

Furin is all for awakening our dull senses: “Let us ask ourselves uncomfortable questions and be ready to answer them. Are doctors, nurses, researchers and even journalists volunteering for their work in TB and MDR-TB? So why do we expect community caregivers to volunteer? It has been made clear that NOT paying the community caregivers is unsustainable, they stop work when they want, they move to other towns or even countries and there is no obligation to continue.”

It is high time we paid what is due to the community caregivers; it is sustainable to acknowledge the important resource that they are - give them qualification certificates, recognize their status and accord them the status of the valuable resource that they are.

Discrimination of TB patients
Dr Samson Haumba, Swaziland (L)
Alice Tembe (R)

In our traditional ways, we continue to discriminate against the MDR-TB patients under the guise of infection control. Well, it has been supported by evidence that after two weeks of effective treatment a patient is not infectious anymore. Then how is it that a patient who was diagnosed months ago and on treatment is treated with the same robust precaution as a walk-in patient today?

A colleague of Dr Furin, based in Swaziland at the University Research Company, Dr Samson Haumba shared that a nurse working in a TB ward took ill and was diagnosed with MDR-TB. Suddenly she was locked away in isolation and her workmates would only go to deliver her medication rather than visit her. She went into depression due to this heightened stigma and discrimination, noting that all the time she had been working with her friends in the ward, they abandoned her as soon as she was diagnosed and put on treatment.

Added costs to sustain TB treatment

There is no such thing as added cost to sustain treatment success, said Furin. A patient’s nutrition and transport needs to be budgeted for as an essential component of effective programming, but it is not an added cost. She noted that in South Africa, an estimated US$188/month is what a patient needs to be able to access care and treatment while getting nutritional provisions. Many of the TB patients are already living on below a $1/day. This is why it has not been working.

“If as researches, programmers and clinicians we expect treatment success through adherence, then it is we who need to enable it. Patients walk through our doors daily/monthly for their treatment, and yet we are so afraid of engaging them. Even though we may not be able to change their one-roomed, dingy living conditions, we can at least listen to them. The best resource in this new approach is the patient,” according to Furin.

Moving forward

Blessina Kumar, GCTA
Interesting to note is that even TB has modified and transposed itself to be stronger and often presents itself in a more aggressive form in the human body like MDR-TB and XDR-TB (extremely drug resistant TB). It therefore calls for a higher level of thinking, a higher level of engagement and advanced research for humanity to maintain the ability to end the TB epidemic. 

In the opinion of Blessina Kumar of the Global Coalition of TB Activists, the voices of TB advocates need to be more focused. We can have the best diagnostic equipment and the best drugs, but if the infected patient does not swallow the tablets, it all comes to nothing.

She rightly said that, "Each one of us is a torch bearer. It is equally important that as we develop and advance our responses we do not leave out issues of social accountability. As we prepare proposals and reports consistently to programme donors, we should also present the same to the community and be willing to listen to their feedback."

Alice Tembe, CNS Special Correspondent, Swaziland
6 December 2015 
(Alice Tembe is providing thematic coverage from 46th Union World Conference on Lung Health in Cape Town, South Africa, with kind support from Lilly MDR TB Partnership. Follow her on Twitter: @Tembe3)