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A Cure Has No Use If It Cannot Be Widely Distributed, Managed And Accessed

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By Shelley Garnham

Dr. Fathiya hands us each a blue mask, instructing us to cover our nose and mouth as we pull the bands snugly behind our heads. She insists that we ensure there is a tight seal all along the blue cloth between it and our cheeks, noses, and chins. We are about to enter "The Gazebo" and must take extra precautions to protect ourselves and the patients on the other side from the spread of infections.

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Once everyone's masks are secure, we follow the doctor and nurses through the doorway into a bright courtyard, passing several windowed rooms on our left. Lusi explains that these are "negative pressure rooms." Doug nods his head in comprehension, while the rest of the group quietly rumbles with confusion, "what are negative pressure rooms for?" He explains to the group that the rooms are designed to draw contaminated air out, allowing doctors and nurses to work more safely with patients affected by highly infectious diseases.

Doug Eyolfson -- or Dr. Doug, as we've affectionately come to call him, has brought a valuable insider's knowledge to the trip. He recently put his long-time career practicing emergency medicine on hold to represent Winnipeggers as their Member of Parliament (MP) in Ottawa. He joined two other MPs, Pam Damoff and Brenda Shanahan, on a 26 hour flight to Indonesia to participate in a RESULTS Canada delegation, where they enhanced their understanding of what health interventions look like in the growing middle income country.

We take a sharp right onto the path and enter The Gazebo. Here we descend upon a group of eight men and women sitting quietly, wearing matching blue masks. Each is being treated for multidrug resistant tuberculosis (MDR-TB).

This is a trip that they must make every day for two years.

Tuberculosis (TB), a bacterial infection spread through the air, is rampant throughout Indonesia where it has the second highest prevalence rate in the world. It is now the number one infectious killer worldwide and the leading killer of people with HIV. In 2014 TB claimed 1.5 million lives.

Though a cure was discovered and widely distributed in developed nations in the mid-1960s, virtually no new developments in treatment have been made since. This lack of innovation has allowed the bacteria to develop resistance to the most effective and commonly used antibiotics. These resistant strains of TB, referred to as MDR-TB, are just as infectious as the common TB bacteria, but are much more difficult to treat, and are spreading across the globe at disturbingly high rates.

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This is what the patients in The Gazebo are facing. They have each been diagnosed with MDR-TB and now must tackle a gruelling two-plus years of treatment, travelling across Jakarta daily to Persahabatan hospital where they are given a handful of 16-20 drugs and an injection. The medication required to treat MDR-TB is toxic and often causes dizzy spells and nausea (among the least severe of the side effects).

Patients wait in The Gazebo for up to three hours to ensure that they feel well enough for the long journey home again. Traffic in Indonesia, is like the weather in Canada -- unpredictable, a constant topic of conversation, and can set you back five minutes, or two hours. Patients coming to the hospital for daily care must take on the traffic, which often results in travel of two-to-three hours each way. This is a trip that they must make every day for two years.

Much of the costs required to procure drugs and strengthen health-care systems for MDR-TB in Indonesia are covered by the Global fund.

The group mingles with the patients and speaks through translators to hear how they are feeling on the treatment. Lusi, a former TB patient turned fierce patient advocate, beams a smile as she explains that one man is coming up on his first year of treatment. We all congratulate him on his halfway mark, with the quiet understanding that he still has one full year left. One year, nine hours each day. I almost ask what he does for work and quickly realize -- this is his full-time job.

Doug is often comparing and contrasting the system we see here with what he is familiar with back in Canada. He notes the challenges he faces in prescribing an antibiotic treatment regime -- anything beyond a ten day course is too much of a barrier for patients to complete.

These patients at The Gazebo are in some ways the "lucky ones," able to access a hospital for diagnosis and treatment (albeit with a heavy burden). Though the Indonesian government does not cover the cost of MDR-TB drugs, other organizations have stepped in to address it.

The Global Fund to Fight AIDS, Tuberculosis, and Malaria (Global Fund), is the largest international funding body providing essential financial resources to countries battling the three diseases. Much of the costs required to procure drugs and strengthen health-care systems for MDR-TB in Indonesia are covered by the Global fund.

It is unimaginable to think of where these patients would be without this support. But availability of treatment alone is not enough. According to the hospital's own data, less than 50 per cent of MDR-TB patients were able to complete the treatment in the last five years. If the medication is too toxic, the side effects too severe, and access too difficult, then its availability is moot.

Sixty years ago the scientific community developed what was thought to be a cure for TB. Several years before we landed on the moon, we had in our grasp the means to end to an epidemic that had ravaged the world for centuries. But since that time we have become complacent and neglectful.

A cure has no use if it cannot be widely distributed, managed and accessed. We may have developed a medicinal remedy for TB in 1964, but in 2016, in The Gazebo, it is clear that a real solution has yet to be discovered.

Shelley Garnham is the Tuberculosis Project Officer at RESULTS Canada, an advocacy organization that generates the political will to end poverty.

This blog is part of the blog series: AIDS, TB and Malaria: It's High Time for Us to End It. For Good by the Interagency Coalition on AIDS and Development (ICAD) in recognition of the Global Fund's Fifth Replenishment. The blog series runs from August 29 to October 3, 2016 and features a selection of blogs written by ICAD member and partner organizations. Contributors share their broad range of perspectives and insight on the work of the Global Fund and the opportunity that this moment presents us one year following the inauguration of the global Sustainable Development Goals (SDGs).

The views expressed are those of the authors and do not necessarily reflect the views of CCIC or its members.

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