More than a decade since he received his life-saving treatment, Endalkachew Fekadu says things have improved for MDR-TB patients today.
By Carla Kweifio-Okai (The Guardian) |
When Endalkachew Fekadu contracted a strain of drug-resistant tuberculosis 12 years ago, it was still considered a death sentence by health professionals in Ethiopia.
Endalkachew was 16 at the time, and remembers being told the medication he’d received had failed to have any effect on the disease. “In my case, my TB was resistant to all five medications that were considered first-line drugs – the drugs that treat regular tuberculosis. It was so bad to hear. I was desperate for the next line of medications that could fix it, but at that time they weren’t available in Ethiopia – and even if you could get them it was so expensive, thousands of dollars. No one could afford it,” he recalls, sitting in his small office in Ethiopia’s capital, Addis Ababa.
Multi-drug resistant, or MDR–TB, occurs when patients show resistance to at least two powerful first-line antibiotics used to treat the disease. The spread of drug-resistant TB strains has been fueled by patients receiving intermittent medication or failing to complete the grueling course of treatment, which can include up to 20 pills a day plus injections. As a result, almost half a million cases of MDR-TB emerge each year, with only 3% of patients receiving the treatment they need.
When Endalkachew received his diagnosis he was told there was nothing that could be done, and he anticipated a similar fate to those he’d known who had died from the disease. “They would put you in a small room and quarantine you, that’s all they could do. Only a miracle could save you.”
Endalkachew was granted his miracle when a US-based NGO sponsored him to receive treatment with drugs that were unavailable in Ethiopia. He had received assistance from the NGO Compassion International throughout his childhood. When it heard of his case, the NGO raised the funds required.
Despite being the only person he knew to receive second-line treatment for MDR-TB, Endalkachew discovered it presented a new set of challenges. The intensive course of treatment lasted two years, and he spent most of that time bed-ridden and self-quarantined in his room. He lists the eight drugs he took each day in detail, their side effects still clear in his mind. “They’re toxic, some people even commit suicide because of the side effects of those drugs. I could not walk most days, sometimes I’d forget my name, I couldn’t use my hands or legs. Sometimes it felt the treatment was worse than the disease and you just wanted it to end.”
He recovered, graduated from university, and now leads his own NGO with other TB survivors. He’s a busy 28-year-old – a trained pharmacist, publisher of his own health magazine, and volunteer counselor to people recovering from TB. When asked how he fits everything into his day, Endalkachew is emphatic: “I’ve been given a second chance, and I have to do something important before I die.”
More than a decade since he received his life-saving treatment, Endalkachew says things have improved for MDR-TB patients today. “Back then, even the government didn’t really recognize the presence or prevalence of this disease, so of course you didn’t have a chance of getting the medication you needed. Now, things are better,” he says. “Treatment is minimized to 18 months, and now you can get the medication for free. You have early diagnostic access too – it took three to four months to get an MDR-TB result at that time. Now you get your results sometimes within a day.”
Despite progress in Ethiopia and abroad, MDR-TB cases are rising as diagnostic technology improves. In a report released for world tuberculosis day on Tuesday, the UK’s all-party parliamentary group on global TB warned that up to 75 million people risk dying over the next 35 years if the world fails to tackle TB drug resistance. The report says treatment for MDR-TB is so “complex, expensive and toxic” that less than half of people successfully complete treatment. The group calls for shorter and less arduous treatment courses to help patients complete their treatment and reduce further cases of infection.
For some MDR-TB patients, hope is already on the horizon. A scheme will see two new drugs introduced in 17 high-risk countries, including Ethiopia, with the aim of halving treatment times, eliminating the need for injections, and improving patients’ chances of a cure from 48% to 70%. Funded by Unitaid, a global health financing system expanding access to drugs and diagnostics, the $60m end-TB project will bring two drugs to the market in partnership with Médecins Sans Frontières, Interactive Research and Development and Partners in Health.
UNITAID’s executive director, Lelio Marmora, says the two drugs, bedaquiline and delamanid, are a welcome addition to a treatment regime in desperate need of updating. “No new TB treatments or tests were developed for more than 50 years. The increase in the number of MDR-TB cases being identified brings with it a pressing need for more effective medicines,” Marmora says. “UNITAID’s investment will help make MDR-TB treatment more effective and easier to bear, thereby helping patients to be better treated and to halt the disease’s spread.”
For Endalkachew, the potential for easily accessible new treatments is profound. “I’m happy to think people who get MDR-TB today won’t go through my experience. When I was cured it was a miracle. Now it is much more likely.”
Source: The Guardian