MDR-TB: A generation of survivors

Alice Tembe, CNS Special Correspondent, Swaziland
Being a public health specialist in the field of TB and HIV, there are always aspects that tend to fall through the cracks, only to be realized when the effects start showing and then another intervention is designed-- the cycle seems to be never ending. As a member of the engagement tour organized by the Lilly MDR TB Partnership at the King Dinuzulu Hospital, I walked through a path of awakening.

The King Dinuzulu Hospital specializes in treating patients with drug resistant TB (MDR-TB) management - from paediatric patients to the geriatrics. With a 900 beds capacity, the outpatient department sees approximately 160 new MDR patients per month. According to the Hospital CEO, Dr Ruben Naidu around 70% of them are co-infected with HIV. I also had the opportunity to meet four patients of MDR/ XDR-TB, from Kwa Mashu and Umlazi areas in the Ethekwini district, that are the catchment areas where 'Red Cross' offers support through their 13 field workers to about 200 MDR-TB patients.

All these 4 patients were in the continuation phase of their treatment, taking medication from home under supervision, and care through the community care givers of the Red Cross, in partnership with the King Dinuzulu Hospital.

At Kwa Mashu, I met Oscar (name changed), a mid-20s young male who has been on MDR-TB treatment for the past two years. He indicated that the treatment temporarily affected his eyesight, but he recovered after a while. Oscar’s message to others in similar circumstances was, "when you start the treatment, commit to it with your life. Do not mix it with recreational drugs, tobacco smoking or alcohol and you will survive" (translated from IsiZulu). Unfortunately, Oscar’s mother also got infected with MDR-TB, most likely getting the infection from him while caring for him in a one-room living apartment they shared. She has been on treatment for the past 6 months. The two have become great treatment buddies and support each other through this phase of their life's journey.

In a close-by neighborhood, I met a gentleman Thabo (name changed) in his mid-40s who lives in a four-roomed house with 23 other family members, and among them are young children. The community caregiver explained that in that home, he is not the first patient to get MDR-TB. He was initially admitted at King Dinuzulu Hospital and later referred to the Red Cross for treatment continuation and care at home. He can access his medication at the local KwaMashu Community Health Care Center where there have been about 1700 cases of new TB patients this year alone, out of which 43 were MDR-TB patients, who were referred to King Dinuzulu Hospital for treatment initiation. The Clinic has hope in the future to diagnose, initiate treatment and continue caring for the patients in their catchment area with support from King Dinuzulu Hospital.

In Umlazi township, a 34 year old unmarried male, Mfundo (name changed) with XDR-TB, and co-infected with HIV, was willing to share his story. This is what he had to say:

"I was diagnosed with TB in 2013. I had symptoms like sweating, coughing, weight loss. So I went to the clinic where my sputum tested positive for MDR-TB. I get support from the community and family, as well as from the clinic. I live with my mom and brother and they support me. They have tested negative for TB. The biggest challenge for me was to take the initial treatment of injections. I was admitted in the King Dinuzulu hospital for 7 months as earlier I was not adhering to treatment, but after coming out of the hospital, I have been very regular with my medicines. In the hospital I was given a lot of information about TB. I came out of the hospital in February 2015 and am almost halfway through my treatment."

"Red Cross has given me moral support to continue with treatment, and has also helped with transport to be able to go to the hospital. They also bring food parcels for me, and all this has kept me going. I am unemployed and I did apply for a government grant/compensation but I did not get it. I am going to reapply and the doctor is going to recommend my case. I feel much better now and I am recovering fast." (Translated from IsiZulu)

Thandi (name changed) is a 26 years old female patient of MDR-TB, co-infected with HIV, from Umlazi area. She looked emaciated but was nevertheless cheerful. She is one of the 8 siblings in a family comprising 11 members. She contracted the disease from one of her brothers, who died later. She was admitted in King Dizululu hospital for 8 months. Her medication will continue till February 2017.

She said that, “The first time I was diagnosed in 2013, it was MDR-TB. I accepted that I had the disease and wanted to get better. So it was not hard for me in the hospital. After coming out of the hospital and staying at home, I am not experiencing any problems. My sister who looks after me gives me a lot of moral support, even though she had to give up her studies because of caring for me. I only wish if had a bigger house to live in, it would be very good. We are 11 family members living in a small house. If we had more space to live in, I would be very happy.” (Translated for IsiZulu)

Her caregiver sister (who is likely to be recruited as a Red Cross volunteer because of her excellent caregiving skills) said that, "My biggest challenge is that I am not able to work, as I have to look after her. But the nicest thing is that we all support each other and so are able to pull through. I am happy to be able to help my sister in her time of crisis. By taking care of my sister I have learnt how to be able to help others. This is a great lesson of life I have learned."

Power of partnerships
Walking the MDR-TB patients’ journey brought to realization that the response to tackling MDR-TB lies not just in building state of the art hospitals but also in the 'power of partnerships' as stated by the King Dinuzulu Hospital Pharmacy Manager, Ms Nirupa Misra. While hospitals cannot house every MDR-TB patient, partnerships with the Red Cross and other NGOs, not for just clinical support but also for nutritional and psychosocial counseling support, can go a long way in increasing treatment success rates. The governments’ response has to be multi pronged - education, sanitation, nutrition and economic aspects are all essential for managing and ending TB in this generation.

Alice Tembe, CNS Special Correspondent, Swaziland
2 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)