Example 3: Advocating for the constitutional rights of TB patients in Kenya
Project Type: Advocacy
KELIN is a national network that responds to human rights concerns relating to health, including TB and HIV.
In October 2012 , a patient at Kenyatta National Hospital in Nairobi was diagnosed with “extensively drug-resistant” tuberculosis (XDR-TB). The patient—known as “Mrs. X” to protect her anonymity—is one of about 600 people confirmed to be living with drug-resistant TB in Kenya. Fewer than half of these patients receive the treatment they need to get better and prevent further spread of the infectious disease.
XDR-TB, which has been reported in 69 countries globally, describes strains of tuberculosis that are resistant to the two most powerful anti-TB medicines and at least three of the six classes of secondary medicines. Because of this resistance, treatment can take longer than two years and patients must take medicines that are very difficult for the body to tolerate.
At a policy level, the Kenyan government is committed to giving its citizens the highest attainable standard of health, as enshrined in Article 43(1) of the Constitution. As part of this commitment, the country adopted the WHO’s international standards of TB care and patients’ charter for tuberculosis care, which endorse free TB treatment as a government responsibility. Despite this, Mrs. X was left for four months without receiving proper treatment. She was finally prescribed three expensive medicines, but was forced to pay for two of these herself. The third medicine, Viomycin, is not registered for use in Kenya and was therefore inaccessible to Mrs. X and other patients.
Mrs. X says the situation has put tremendous financial and psychological stress on her and her family. “The way in which I have been treated by the public health service is making it very difficult to survive,” she said. “My family has to find 16,000 shillings (approx. $200) for drugs every week. All I want is for the government to provide me with the medicine that I need without making me pay for it myself.”
Advocates at KELIN have taken on Mrs. X’s case. Working with 15 other civil society organizations, KELIN delivered an advisory note to government ministers and Kenya’s Attorney General outlining the facts of the cause and urging immediate action. In an official statement, KELIN attorney Allan Maleche said, “One of Kenya’s Millennium Development Goals is to reduce the incidence and mortality due to TB by 2015 and to eradicate it completely by 2050, but the Government is not addressing TB with the level of seriousness it deserves, particularly as it is a matter concerning the individual, community, national and global public health.”
Results & Lessons Learned
Following the civil society action, the Kenyan government agreed in 2012 to provide Mrs. X with the two available TB drugs at no cost, but it stressed that it is unable to guarantee the supply of these drugs beyond a few weeks. Mrs. X needs at least several months of treatment to overcome XDR-TB. She also needs the third medicine, Viomycin, but that remains unavailable in Kenya.
At last report in January 2013, Mrs. X’s health was improving. She was responding well to the medication, although she remained concerned about receiving refunds from the Government for the costs of laboratory tests that she has incurred.
Although government efforts to provide some of the necessary drugs are a positive development, concrete actions are needed to improve policies and programs to detect and treat drug-resistant TB and realize the commitments in Kenya’s Constitution. Civil society organizations, like those coordinated by KELIN, play an important role to hold governments accountable for designing and implementing policies that meet patients’ needs. Without them, it is unlikely that patients like Mrs. X will receive the medications and support needed to get well.