On the eve of the World Health Assembly taking place in Geneva, Switzerland, where delegates will adopt an ambitious 20-year global plan to address tuberculosis (TB) and drug-resistant TB (DR-TB), Doctors Without Borders/Médecins Sans Frontières (MSF) urges governments to focus intensely on improving DR-TB testing and care over the next 12 months. MSF is delivering to delegates a “Test Me, Treat Me” DR-TB Manifesto, a call for action written by DR-TB patients and caregivers to improve the dismal prognosis that DR-TB patients face today.
“The ambitious targets set for 2035 in the global fight against TB are welcome, but a 20-year plan can’t save the lives of people dying now for lack of proper diagnosis and treatment,” says Manica Balasegaram, executive director of MSF’s Access Campaign. “Governments can’t sign on the dotted line and then sit on their hands for the next year. As a sign of their commitment to reaching the targets in the global strategy, governments must work diligently to slash death rates from DR-TB over the next 12 months. At the very least, we must end the deadly wait for thousands of people diagnosed with DR-TB who lack access to proper treatment.”
An intolerable ordeal
According to the World Health Organization (WHO), at least 17,000 people known to have multidrug-resistant TB (MDR-TB) were not put on treatment in 2012, leaving these patients to suffer and remain infectious, and further lowering an already abysmal survival rate. The number of patients diagnosed with MDR-TB is also but a small fraction thought to have the disease; as many as 80% of people estimated to have MDR-TB remain undiagnosed.
Today, people with multidrug-resistant forms of tuberculosis – strains that have developed resistance to the most powerful anti-TB drugs – face an intolerable prognosis: Either die without treatment, or endure a tortuous and expensive two-year treatment regimen that cures only about half of people.
More than 800 DR-TB patients and 1,500 caregivers are among the over 50,000 people who joined the year-long “Test Me, Treat Me” DR-TB Manifesto campaign, which gives voice to those patients enduring intolerable suffering and demands radical improvements in DR-TB survival rates.
“During my three-year ordeal battling extensively drug-resistant TB (XDR-TB), I saw more friends die of this horrible disease than any person should have to,” says Phumeza Tisile, co-author of the DR-TB Manifesto and an advocate for TB patients who is delivering MSF’s call to action in Geneva. “I’m here on behalf of every person affected by DR-TB, including those who lost their lives, with a clear demand for ministries of health: We demand action, we demand accountability, we demand a better chance at survival. Do everything in your power because we can’t wait any longer for change to happen.”
“Test Me, Treat Me”
The DR-TB Manifesto lays out three demands from patients and their caregivers: universal access to testing and treatment, which requires governments to scale up DR-TB programs; better treatment regimens to drastically improve cure rates; and full funding for these efforts.
Governments can take steps now to improve people’s chances of completing treatment and surviving the disease. For example, a shorter treatment regimen that is easier for patients, especially migrant populations, to tolerate – nine months instead of 24 months – can be used in some settings in line with WHO recommendations. Governments should urgently enable “compassionate use” of promising new TB drugs for patients who have exhausted all other treatment options, and should urge pharmaceutical companies to register new and repurposed TB drugs in all endemic countries. MSF’s experience working with TB patients is part of a body of evidence showing that providing decentralized care – whether at patients’ homes or within their communities – reduces waiting lists, avoids unnecessary or long hospital stays and can allow people to remain at home during treatment.
Shorter, more effective, tolerable and affordable regimens containing new drugs are desperately needed to treat TB so it can be controlled as a curable disease that no longer kills. For that, new funding and new models that de-link the cost of research from the product price should be developed and implemented.
MSF has been treating TB for more than 30 years, and in recent years has witnessed an alarming rise in DR-TB in our clinics. MSF is now one of the largest NGO treatment providers of TB, caring for almost 30,000 patients each year, including nearly 1,800 with DR-TB, in 21 countries around the world.
Read more about MSF’s TB programs and sign up to support the “Test Me, Treat Me” DR-TB Manifesto
