Timely Treatment for Drug-Resistant TB in Kenya

Last October, 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 is 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.”

Thankfully, advocates at the Kenya Legal and Ethical Issues Network (KELIN), a national network which responds to human rights concerns relating to health and HIV, 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’s 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.”

Following the civil society action, the Kenyan government last week agreed 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.

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.

52 Comments

Great blog post Erin, we shall continue to work with other partners to ensure Mrs X receives quality treatment and address the large issues of the incomplete isolation ward, poor TB policies and the lack of investment in TB healthcare.

Very good advocacy for the TB issue. It is sad that a longterm strategy by the government to deal with this issue is still lacking. What if there are several other 'Mrs. X' out there but due to poverty are not able to visit the National Hospital for assistance.

Thanks Kelin, Good work!

TB is a real killer; there is sufficient data to prove it.The government has the best statistics on the epidemic.The question is who is to blame / responsible for this mess.Of course all of us -the Kenyans.

. The citizen should stand up for their rights,know what the guidelines stands for and always get to know the happenings around health and TB related issues.Ignorance is no defense.Stigma is a hindrance to TB treatment.Stigma is best dealt with at individual level.Lets stand up and speak up for the TB patients.With the number of TB patients growing each day;we are all susceptible to it.

.To the civil society,advocacy on access to treatment and human rights issues to TB treatment should be up scaled. Targeted sensitization on the TB treatment should be done to all levels of the community.Lobbying for the bureaucratic supply and procurement procedures within the government to be done away with.

.The Government of Kenya, show us the commitment as stated in adoption of the W H O international standards of TB care and patients' charter for tuberculosis care and as enshrined on the constitution.What lasting strategy do you have to end HIV by 2015??

Its our responsibility as citizens, government and civil society to reduce mortality rates and eradicate TB by 2015. Can we??? Yes we can,if only we address it with seriousness it deserves as a matter of global health

As with the imprisonment of two Kenyan patients charged with defaulting in their TB treatment, this is a reminder of how human rights defenders should be regarded as an ellsawntial part of the health care system. Governments are quick to blame individuals for system failures--glad KELIN is on the case, and let's hope Mrs. X won't have to battle both TB and political indifference.

As partnerships are sought it is important that Government is pushed and held responsible to not only commit to policy but to ensure they find ways to provide drugs in the long term not only to Mrs X but to others whose plight may not have been highlighted in this blog. Great work though and its refreshing to see someone blog about real life issues that populations are suffering with.

Great work and the new Constitution in action!

What Kenyan civil society and in particular KELIN is doing brings hope to millions of other people in Southern Africa struggling for access to quality health care. We need to unit as a region to hold all our governments to account, but not forgetting the private sector and I refer specifically the mining industry and the pharmaceutical industry who put profits before lives. Lets build on the work in Kenya to mobilise to eradicate HIV and TB in all in forms in the region! Amandla

Great blog post. I respect KELIN's efforts. However, I think the African public health sectors and African governments in particular need to figure how to help its own citizens, especially when there is no access to a particular drug or treatment. We cannot punish people who are sick and cannot pay for treatment.

NETMA and other organizations are working with KELIN on this and we are committed to changing the TB scenario in our country by step into our rightful position in demanding accountability and quality TB services. I will be speaking to the US Senate on the world TB day on the 24th March in Washington DC and i will raise this issues.

The work that KELIN is doing to address these issues is commendable however, what is requited is political will. These are and many other deliverables from the health related MDGs may not be met and this is not for lack of policies, support from partners to get there, but the government lacks the commitment to get us there. However it is in highlighting such stories as this of Mrs X that will create the impetus required to give the push to prioritize this and other health related challenges in the country.

Kenyans are still waiting for the government to respond to the increasing cases of drug resistant TB which is not only financially straining but also a danger to any person interacting with TB patients without a mask.

Quick rewind to the Ebola case that was reported in December last year, the government threw the entire country to panic as they frantically put all control efforts to ensure no new cases were developed.

It was all drama at the Kenyatta National Hospital as the father to the suspected Ebola patient and the taxi driver who transported her to hospital was isolated and the country was put on high alert. No confirmed case of death from Ebola has been recorded in Kenya yet the response to the scare was commendable.

TB, especially drug resistant TB is no different, it is highly infectious and urgent response is needed from the government yet nothing is being done. Why can't the government have the same response to TB? Is it a game of wait and see? Why the slow progress in TB response? When there was a suspected Ebola case, it was dealt with yet MDR TB and XDRTB are claiming lives and increasing morbidity in the country. Why wait until a new case and then tell the public that they do not have drugs to treat?

Kenyan Government needs to be proactive and not reactionary! Since losing the first cases of XDRTB, the ministries of health should have put comprehensive systems for control and management of any new cases, otherwise the country is breeding a disaster in the name of TB if action is not taken.

A statementin this article worries me alot...'"Following the civil society action, the Kenyan government last week agreed 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..." Treatment for XDR TB takes between 24 - 36 months to treat; how does the National TB program justify its statement that they can only provide these medicines for only a few weeks? How many other Drug resistant TB patients have had to get their treatment so haphazardly resulting in drug resistance due to incomplete dosages? Its unfortunate that Mrs X diagnosis of XDR TB is being treated like a simple head cold rather than a life and death situation. In addition to not having a guaranteed treatment plan, she has to deal with the additional stresses of paying for own medicines to manage her side effects.
Let Mrs. X's case be not only a case study for this campaign...but a real life test on how patients in this country are diagnosed and treated

Thanks everyone for your excellent comments on this post! I'm glad that the OSF blog can profile the work of Kenyan civil society to hold their government accountable for the delivery of timely TB prevention, diagnosis and treatment and look forward to the new opportunities for accountability that the positive right to health in the Kenyan Constitution presents.

This case shows that we need to make socio-economic and cultural rights justiciable. Countries normally like to hide behind unavailability of resources when in fact they do have resources.

Kudos to KELIN and partners. We must profile such initiatives beyond text and mobilize civilians to not only demand accountability but solutions as well from the public sector.

Great work KELIN and partners. Lets hope Mrs X is provided with sustained treatment.

Nice work, KELIN! Unfortunately, lack of access to treatment for drug resistant TB is not limited to Kenya. All too often people with TB have been imprisoned and isolated rather than treated. Please see a recent South African case, "TB Patients Chafe Under Lockdown in South Africa," profiled in the NY Times at: http://www.nytimes.com/2008/03/25/world/africa/25safrica.html?pagewanted....

Helping to get Mrs X the treatment she needs is fantastic and very important.

However, the next step is to make sure that Mrs X, and others like her, get continued support. We don't want this to be a 'one off' reaction to pressure from civil society and the media, but a commitment from the Kenyan Government to implement the right to health properly.

It is a painful scenario when people suffer on issues such as TB when governments are able but not willing to do something about it. It is a worrying trend in this country that the civil society have to speak out for government to act on very fundamental issues that would actually need simple pro-activity on their part. A case scenario is this of Mrs. X. Kudos to KELIN and the other civil society organizations for taking this initiative hoping that it will spark debate towards seeking a lasting solution to this plight. We hope that the relevant authorities will take up the challenge and help Mrs. X and other Kenyans in this category access the treatment they so badly need and rightfully deserve. Right to health MUST be applauded at all costs and we should push on these campaigns.

Well done KELIN for establishing a precedent that the Government has a duty to pay for these life supporting drugs but how can they agree to that and then withdraw that right after a few weeks? The hypocrasy of sending some individuals to prison for not taking the drugs and withholding the drugs from others who could infect the people they come into contact with is quite unbelievable.. can the government not see how ludicrous this contradiction is? Maybe we should make space in the Gaols for those failing to deliver their own policies...keep highlightling these contradictions, KELIN!

This is good work KELIN. Kudos to you once again !
On the part of the government committed to giving its citizens the highest attainable standard of health, and the free TB treatment....diagnosis for TB sometimes takes a very long time, and some times very hard to detect. This results on the continuing waste of the patient and by the time treatment is done..one is weak and has to adhere to the terrible regimen. A lot of lives are lost at this point because the patient's body which is very weak has to struggle to absorb the harsh treatment. It was hard for me to take these drugs, and many a time I would throw them back at the person who was trying to administer them to me....as a result, the drugs were kept far away from me! The side effects were horrible and took a very long time to get used to.....So I fully understand how one can default from this treatment. All in all, I successfully completed the treatment, but my chest is not as it used to be because the doctors took over over two months to detect and diagnose the TB. So for me, I shudder to think what the XDR long treatment must be like :-(

Dispite TB been declared a national dister, the National budget line for TB in kenya has remained the same for the last 13 years dispite the increace inincidences. The TB budget is mostly from Global fund.The few and negligent no of XDR TB in Kenya is from Global fund, and even then they are treated out of hospital since the Govenment of kenya can not afford money for an isolation ward, but can aforod to have 40 mininstris including being a country whose capital city nairobi has the highest consentartion on Mercedes Benz in Africa. Also the fact that kenya has a new constitution that gurantees the right to health, and ratifiying all international tretes, smacks

The right to the highest attainable standard of health is now expressly provided in the Constitution of Kenya. The irony brought about by the swift imprisonment of MDRTB "suspects" and the laxity in responding to a confirmed case of XDRTB raises numerous concerns on whether our government is genuinely committed to its obligations. There is a clear need to engage the government and come up with acceptable standards for the realization of the right to health and other related rights.

Kudos to KELIN and partners who took part on this issue. It takes great coordinated voice of a people to achieve such. As we advocate for accountability and better TB treatment policies, Its important that we think of long term solutions to the TB epidemic.Lets remember to put up voices for support to R&D as well.Achieving the global target of eliminating TB by 2050 will require a comprehensive response that includes both implementation of treatment programs and research and development of better tools to combat the disease - a vaccine that prevents adolescents and adults from developing infectious tuberculosis will be the single greatest advance in the global fight against the disease.Its only an improved version of TB vaccine that will save us the unending suffering from TB. A NEW TB VACCINE IS POSSIBLE!

Well done KELIN, you are agents of positive change, the change that a majority of our people long for. Nevertheless, a long lasting solution for Mrs X and others in similar situations would be the right thing to be done by the Department of Health and governmnet.

Firstly I would like to congratulate KELIN and its partners on taking this very important matter up. TB remains a challenge years after it was first diagnosed and medicines developed to treat it. It has become even a greater challenge because of the co-existence in people living with HIV, especially in the region where I come from, SADC. It is an embarrasment that our governments and drug companies have adopted a complacent attitude in dealing with this issue, not suprised a bit as this illness affects the poorest of the poor and people of the working class, and those are not projects of many governments and drug companies. They are only interested in their political positions and profits before lives. Activists accross the world, especially in Africa need to revolt against this. It cannot be profits before lives. New drugs and diagnostics must be developled. Drugs should be available and affordable to those who need them the most. Governments in our countries have all the instruments they need to turn this around, political will and conscience should be evoked and force on them. Right to life and realisation of this right must remain a guiding light for all. Viva KELIN Viva!!!!

Kudos KELIN for coordinating this! it is important to note that the government commits to medication only for a few weeks and not until Mrs X is completely healed of the XDR-TB, what does this mean for Mrs X? and other kenyans? lets move with this; it is one thing to have great policies or commitment on paper but it takes an accountable government to realize the commitments, we need to push for the government to ensure that besides the policies, institutions to implement the policies and to monitor policy implementation are in place. this is one case that represents many; hence the partnership and pushing continues. Great work KELIN and Erin for posting this!

It is very unfortunate and the case of Mrs. X is just one of the many cases that we have not heard about. We can do better as a country if we invest in the upstream determinants of the disease in this case TB and therefore we don't have to get to the level of Mrs. X. I can't help it but to think about the need to address social inequalities in our country. It has to start with the very basic - need to improve peoples daily lives and equitable distribution of resources across the whole population. Where there is a will, there is a way!

Dear All,

The most important thing that has happened is that the Government of Kenya has been made to acknowledge the existence of XDRTB.

When we first talked about it a few years back the entire Health system was living in denial,even today we see a glaring evidence of SYSTEM FAILURE, which is now contributing to the ever increasing numbers of MDRTB, non of the Government officials have come out to deny the failure!DST availability is another matter, because without appropriate Drug Suspect ability Test, there will be real poor outcomes, even if the Drugs were to be made available Miss x and the rest.

Good work KELIN. By the way it not about Miss X. There are hundreds of others that are not attended to or Isolated due to unavailability of Isolation Ward at the Kenyatta National Hospital, which should have been up and running 5 years ago.This is a center that was meant to be taking care of patients in this region.There was one patient with XDRTB from Uganda recently,what could have happened to that one?
Thank you.

The Kenyan government's response -- complacent, negligent and unconscionable -- puts the lives of all Kenyans at risk and clearly violates the government's national and international human rights obligations. We at AIDS-Free World applaud KELIN for their stellar advocacy work and their life-saving intervention on behalf of Mrs. X.; we hope it will result in the full, government-funded course of treatment -- for Mrs. X as well as the hundreds of Kenyans now living with MDR-TB.

Good work KELIN
More awareness needs to be raised to the community as well to join KELIN in advocacy and create demand for relevant services. TB is everyone's responsibility.
On another point i will be interested to know more about Mrs X, her Socio-economic status, i am currently doing a TB research project in Botswana on perceptions of nurses, TB patients and community members on TB infection control and nurse patient relationship‰Ûª and came across a patient, 26 yrs old mother of two, who since being on MDR TB treatment has gone deaf and life has since been unbearable, since she can't get a job and the government not supporting her. Questions on how the community around her will respond to her situation and their opinions in enrolling on TB treatment should they need it knowing the side effects and lack of support from the government.

please share more Mrs X

Well done and keep up the good work, which will also spur us on to advocate more on the quality of care for TB patients

This speaks to the need for increased investment in the development of new drugs that are better tolerated and less toxic and can be taken over a shorter period. These prohibitively high prices of DR-TB drugs are a result of insufficient competition among the drug producers and limited demand for DR-TB drugs. Some prices of DR-TB drugs have gone up by as much as 1000% over the past 10 years!

However, we also need to focus on increased detection of TB in the community to curb its spread. The roll out of GeneXpert-with its ability to diagnose TB within 2 hours is potentially revolutionary in this regard, but the price of the machine and cartridges themselves are also still too high for many Southern African countries with high burdens of TB and DR-TB to roll it out. We also need to ensure the implementation of simple and effective infection control mechanisms, both at the facility and community level to limit the transmission of TB. Many people now are beginning to contract DR-TB directly, rather than have resistance develop through poor adherence. If we dont do everything we can to limit transmission and treat everyone who needs it, in light of the exorbitant prices of DR-TB drugs, we will have an epidemic too difficult to manage.

Congratulations to KELIN for doing a great job in this case. It will be important to ensure that not only this patient, but all of those in Kenya needing treatment can get access to it. I hope that organisations in Kenya working to end drug stock-outs will continue to find ways to hold the government to account.

The World AIDS Campaign would like to congratulate KELIN and the civil society platform in Kenya for setting the tone for the implementation of the new constitution of Kenya with regard to Right to health. Further, this effort goes towards ensuring 'Zero AIDS-related Deaths' considering that TB is responsible for about 60% of HIV related deaths in Kenya. The unfortunate case of Mrs X is a reflection of governement's neglect of obligation; pure unwillingeness to invest in health; violation of human rights and a failure to correctly identify national priorities. It is important to recognize that XDR-TB is extremely infectious and extremely difficult to treat and should not be handled as casually as in the case of Mrs X.

What a story! A reminder that life is precious and should protected at all costs and at any age! Thank you Kelin for the great work being done. God bless.

Great advocacy work there KELIN. Very enlightening and leaves one wondering what is happening to the 600 cases you say are confirmed to have MDR- TB if the government cant provide full dose treatment for this one case. Any concrete ideas on what can be done to improve access tot he TB drugs?

I agree with most of the comments made and lets not relent on this issues. Am more interested to know that TB Action think about this. We need to create a coalition on TB issues, KELIN could you mobilize those interested and we push this forward. As for our National TB guys, it reminds me of the first MDR case and how we fought so hard to be where we are, not the best but at least something is being done. So we hope they can take the lead the lead on the XDR........I feel we are at the same point with the XDR and as treatment activist we should be able to ensure that the relevant Duty Bearers perform their correlative duties before things get out of hand

i interviewed Dr. Sitienei yesterday and he said that the patient is currently receiving all the drugs she requires, he also promised that the isolation ward would finally be complete by June.

Thank you all for your comments on this important matter. Diana, i hope you shared the link to this blog with Dr. Sitieni, it would be great to read his comments. Dr. Kichari,Jen Cohen of MSF Nairobi and myself visited Mrs X yesterday. We can reliably confirm that she is still purchasing anti-vomit medicine. We also discovered that her right to information is being violated and we shall address that with the concerned authorities. We shared the blog with Mrs X and you will soon be hearing from her.

KELIN, this is a commendable job! The case of Mrs.X should be a vital wakeup call to/for the GoK to put in place solid policies that would enable deserving (but less privileged) Kenyans, like Mrs.X a chance to obtain TB drugs -- to live normal life. It's saddening to see the GoK trying to sit on the fence on such cases where it (GoK) has the moral obligation to provide drugs to its citizens. Will the GoK be delighted to love a life due to preventable illnesses like TB -- No! Hongera KELIN, for defending the voiceless!

Great initiative in demanding accountability and provision of health care services from our government. there is need to follow up closely on this matter, considering that its only half of the known 500 MDR TB patients that are on treatment. Lets continue following up on this and up our advocacy towards actualizing the right to highest attainable standards of health for all Kenyans!
Lets also continue with our campaigns and advocacy on access to medicines for all.

This is s great post and indicative of the organic health challenges facing the public health sector in Kenya. This situation is certainly caused by a multitude of factors and this article has clearly described especially the regulatory and policy based factors that are being addressed by capable entities such as KELIN.

One factor that has not been described is the role that quality health data and information (or lack of it thereof) has contributed to this situation. In this era of evidence based health practices that cuts across the various levels of decision making processes, right from the health worker providing treatment and care services to the surveillance and policy makers especially at the central government levels, quality data is critical to whatever processes we are discussing here aimed at addressing this situation.
In this regard, I urge all those working at addressing this situation and other similar situations to factor this in and just for information, there are already several initiatives led by the MOH that are aimed at ensuring that quality and usable data is available and accessible. I'm happy to provide more info to any initiatives that may require this specific input.

Wanyee, thank you for your comment. We welcome your offer and we are definitely keen as an organization to ensure that we have laws and policies that will facilitate the collection and access of quality health data,for purposes of making informed decisions that will better patients life's and improve the health status of our country.

My name is daniel and i am a film producer in a local film organization in nairobi.in september last year i was diagnosed with TB in kiambu district hospital.i was given medication which i was to take for the next 6 months daily without fail.it has been a struggle for the past five months and a half and am working hard to finish the remaining weeks.
i have gone through alot though,i have been stigmatized by friends who thought i was Hiv positive,every time they saw me take the drugs they thought i was taking ARVS.
I am planning to make a film documentary based on my experiences with this disease that will help other Tb patients cope with the challeges associated with TB eg stigma.it will also help other people understand the disease and be able to prevent themselves.
am looking for a person or an organization which /whom we can work together inorder to make this project possible.

Daniel, thank you for your comment and sharing your experience as a TB patient. KELIN would be interested to work with you to make the project a possibility. We need brave people like you who are willing to share and document their stories. Please be in touch with me on amaleche@kelinkenya.org at the earliest opportunity.

It is unfortunate that numerous Sub Saharan states are not giving MDR /XDR TB the seriousness it deserves. It is a public health catastrophe to continue to let XDR cases go untreated. clearly the numbers are growing and with fluidity of movement the region, we will soon have the numbers spiraling out of control until they have reached or even surpased HIV infections.It is not only in the interest of the Kenyan government fulfilling the health obligations towards this one individual, it is a matter of protecting the constitutional rights of all other members of the public in Kenya from a highly contagious disease. There is no need for TB to continue to claim lives when there is a cure. Drug registration issues are clearly the responsibility of government;failure to make drugs available, let alone register essential drugs is highly regretable. Obviously this invidual is helpless against such a formidable situation. Once again, MDR-TB /XDR-TB will assail the lives of the poor and cause them to perish.

We call upon all states in the sub saharan africa to curtail the unnecesary infections and TB related deaths. DO RIGHT BY YOUR PEOPLE.

It is extremely important for KELIN to sustain this pressure, ensure that all essential 1st line and second line treatments are locally registered and available to the public.

Diana, we will do our best to sustain the pressure, to ensure our country men and women have access to this essential medicine. Thanks for the informative comment that paints a reality of the TB dilemma in our respective countries.

i have a few questions to pose to all the bloggers in this forum because i want to have an understanding on TB. can somebody tell me, how many people in kenya are affected by TB?
how are the health care workers ensuring that patients are adhering to the doses/ regimens given to them? is there a monitoring tool being used to carry out this function?
thanks

I would want to revisit this issue four months down the line. Once again I congratulate KELIN for their advocacy for Human Rights. Could KELIN enlighten us on how Mrs is doing?

Hi all,
A couple of friends and I visited the Mbagathi district hospital yesterday. Had no idea the patients suffuered from TB till we reached there. I am still in shock to find out some of those people have no one to care for them even when in hospital. Met a lady changing herself and a man infested with flies cause he had no one to change him or clean him. He has TB in the spine he can't move yet there are not enough nurses to care for them. What can be done for such patients who face death alone in their beds. Are there organisations that provide help for people who have no families and yet are bed ridden? People who can ensure the patients take their medicines. Somebody out there needs to see how TB is seriously affecting Kenya. If you can help please do. All I and my friends could do was to buy fruits and distribute. This brought a smile on their faces. The little you can do can make a differnce thank you.

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