March 2013, The Guardian: For the first time in half a century drugs that could cure DR-TB are being tested, but the global health community needs to act fast.
“The side effects were intolerable,” said MSF patient and blogger Mariam Davtyan, “I called the doctor and was crying. I felt so bad I couldn’t explain to him everything that was going on. I only told him that I was absolutely unable to take those drugs“.
Mariam’s experience is sadly too common for people with drug-resistant TB worldwide. These are the ‘lucky’ ones who receive treatment, a meagre 19% of those who need it, leaving the airborne disease to spread largely unchecked. DR-TB is a public health crisis that is spiralling out of control – the latest statistics from the World Health Organisation suggest more than 300,000 new cases every year among notified TB cases, a figure that Medecins Sans Frontieres/Doctors Without Borders (MSF) considers conservative based on the growing number of DR-TB patients in our projects. Once the preserve of people who had received incomplete or incorrect TB treatment, a growing number of people with DR-TB are presenting who have never had TB treatment before, which shows that DR-TB is becoming an epidemic in its own right.
Yet, the tools to tackle the disease remain woefully inadequate. People with DR-TB are forced to take up to 20 pills a day with excruciating side effects that range from deafness to nausea and psychosis. For healthcare professionals, the treatment is complex: individualised for each patient based on drug resistance patterns, and expensive, with drugs alone costing up to $ 6,000 (£3,962) per person for a treatment course. And even then, patients only have a 50% chance of cure.
However, after half a century of neglect there is a historic opportunity for change. The drug pipeline for TB is the best it has ever been, with 10 drugs in clinical testing. At the very end of 2012, the US Food and Drug Administration approved bedaquiline or Sirturo, the first dedicated new TB drug since 1963, while another drug, delamanid is currently undergoing review by the European Medicines Agency. Both drugs are completely new classes of antibiotics with no reported resistance, and represent an unprecedented opportunity to improve treatment for DR-TB.
So what do these developments mean for global health professionals – particularly those on the front-line treating TB in communities?
These new drugs could be game-changers and the TB community must urgently work out how best to use them. They offer the potential to make DR-TB treatment shorter, more effective and more tolerable, with fewer side effects. The first step is to make these new drugs available for research and ensure they are quickly registered in high-burden countries. The manufacturers must also make sure the drugs are affordable in low- and middle-income countries, eg through generic production.
The response of drug manufacturers to generic HIV drugs is perhaps the best incentive to do things differently with DR-TB: before the introduction of generic competition in 2001, antiretrovirals to treat HIV cost over US$10,000 per person per year and very few people in developing countries could afford that. As a result, millions of people died and the peak of AIDS related-deaths didn’t occur until 2005. Since 2001, the price has come down nearly 99% and people now have access to affordable medicines. With eight million people now on treatment, the curve of AIDS related-deaths has started to fall, but we still need to expand access to a total of 15 million people by 2015. New infections are also falling.
To ensure the maximum impact of new treatment options in the future, health care professionals must also prioritise:
Scale-up treatment now and fund it
The prospect of improved treatment for DR-TB is all the more reason to invest in treatment now – governments of endemic countries and international donors must increase care. Investing in DR-TB treatment today will not only save lives now, but will also ensure systems are in place to scale up dramatically once better treatment is available. Donors must demonstrate their commitment to fighting DR-TB at the Global Fund pledging conference later this year. The Global Fund itself must commit funding for middle-income countries which have the highest burden of DR-TB.
Children can no longer be an afterthought
Children have been omitted from developments in diagnostics and treatment. The current diagnostic tests are unsuitable for children, involving invasive procedures to obtain respiratory samples, and miss more than half of the cases. There are no appropriate child-friendly preparations of DR-TB treatments, meaning that dosages are often approximated, which leads to over- or under-dosing. The potential of the new drugs will bypass children if there are no trials looking at paediatric formulations and no plans for new DR-TB regimens for children.
People who have TB must have a greater voice
Those directly affected by DR-TB have the most important insight about what is needed to improve treatment, and until now have been largely silent. Their voice is critical to pushing for additional funding, political commitment and programming to meet the needs of those with DR-TB. This community must have access to decision-making bodies and hold them to account. To this end, in 2011, MSF launched a blog by people with DR-TB, called TB&ME.
A historic opportunity for change is upon us – with increased political will, funding, and research we finally have the chance to stop this escalating epidemic in its tracks.