Endalkchew Fekadu from Ethiopia, a former tuberculosis (TB) patient, shares his experience of suffering from drug-resistant TB and his views on TB control. Endalkchew is the Managing Director of the Ethiopian Drug Information Network
My journey with TB goes back to 2006. As a student studying Pharmacy in Ethiopia at a university about 347 kilometers from the capital city, Addis Ababa, I had to travel all the way to the capital city to be tested for multi-drug resistant TB (MDR-TB). There was only one laboratory.
Treatment of drug-resistant TB consists of what are called 'second-line drugs' which are administered when first-line drugs fail. Second-line drugs are administered for two or more years and also involve daily injections. These drugs are toxic, have severe side effects, and are thousands of times more expensive than regular treatment.
I could not afford the second line treatment since they were not available in my country. I was lucky to get well-wishers who supported me financially to access medication. Many others who shared my condition had to go through the same journey, but for those who could not get well-wishers or whose families could not strain any further to get the medication, all they did was wait for their death – how unfortunate!
Despite getting medication, the side effects almost made me lose hope in life; from vomiting to gastric irritation, I even contemplated committing suicide! At one point I lost my memory, not even remembering my name.
Why TB needs special attention
Having experienced the heavy drug regimen that also comes with a staggering cost, my conscience cannot allow me to see my country men and women – or any other person – go through what I experienced. I wish for an affordable drug regimen and, if possible, a friendlier one.
Diagnosing TB is an area that has to be prioritized so that patients do not get to the drug resistance stage. I wish for improved patient care, especially in handling side effects, and call upon political leaders, professionals and those in positions of authority to make a difference and speak up about TB.
Sustaining and scaling up financial resources for TB control requires advocating for funding on political and development agendas. Ensuring that people know about TB services and how to access them means communicating effectively. Raising awareness and demand for programs, assisting in the delivery of services, and ensuring that existing programs continue to operate requires mobilizing a wide group of stakeholders such as professionals, political leaders, patients and communities.
My role in TB advocacy
Recently, I attended a media and advocacy skills training in Nairobi, Kenya, organized by ACTION. I learned practical and useful advocacy skills that boosted my confidence to become a full-time TB advocate.
I can now confidently deal with nervousness. The training significantly improved my skills in reaching out to the print and broadcast media, recruiting patient activists, writing press releases, and using social media.
I now understand better the ups and downs of my countries’ TB control measures and can confidently communicate the challenges that my country is facing. Thanks to ACTION, I got the tools and techniques to mobilize political, social and financial resources to sustain and expand the global movement to eliminate TB.