Tag Archives: XDR-TB

Phumeza has defeated drug resistant TB and now she will defeat the silence!

Phumeza and Aaron in Cape Town in Jan 2014

RESULTS Executive Director,  Aaron Oxley, shares the exciting news that thanks to generous global support, TB advocate Phumeza Tisile is scheduled for surgery to regain the hearing that she lost from taking toxic TB drugs. While these drugs did not cure her TB, thankfully other new drugs did. Phumeza has survived both the disease and the treatment to become one of the world’s most powerful voices in the fight against TB. 

In December I wrote a blog post about an inspirational woman called Phumeza Tisile. Phumeza, a long-standing friend of RESULTS, defeated XDR-TB (extensively drug-resistant tuberculosis), but the treatment, as it does for so many others, made her deaf.

This year she will be able to hear again, thanks to bilateral cochlear implants. This life-changing surgery is only possible thanks to incredible, generous donors from around the world, who gave USD $20,000 in just one month. To all of you reading who have helped this inspirational woman, thank you.

On her MSF TB blog, Phumeza talks about what defeating the silence and being able to hear again will mean to her. She says,

Phumeza calling to 'fix the patent laws' to enable more people to access life-saving Tb treatment around the world.

Hearing again would mean that life is back on ‘’play’’ again. I will resume everything that has been on hold for so long. The best thing would be to go back to University. I was studying Commerce (Human Resource Management) before, but I’m thinking hard about what I want to do with my future. I learned from this experience that you might plan for a certain future but the universe might have a different plan for you.

I will continue advocating for change in DR-TB, because not many patients want to talk about TB after they have been cured. They would rather forget, but that does not help at all. How will the world know that this disease is still a problem if no one is willing to speak about it? Deafness is not the only side effect of the drugs. When I was in Paris at the Union Conference I learned that other patients went blind from their treatment. Others suffered from permanent nerve damage. I didn’t just go deaf: I was vomiting every single day, I got skin rashes and my skin got darker and darker. I will keep on letting people, the government and world health leaders know that the current treatment is a nightmare until things change.”

Whilst we cannot hope to help every single person who has been negatively affected by TB medication, we can – and will – join Phumeza in advocating for a greater global commitment to ending the devastating TB epidemic once and for all. We can stand up and demand adequate funding for research and development of new treatments, and for TB programmes, so that no one else has to tell a story like Phumeza’s. We can call for governments to ensure that the three million people who are missed by TB diagnosis and treatment are found and cured.

We will do all that we can. We hope you will join us.

You can read more about Phumeza’s amazing journey on her Medicins Sans Frontiers (MSF) blog




TB in TIME Magazine

TIME Cover, Credit: James Nachtwey

In a blogpost last week we discussed the increased media attention on tuberculosis in recent weeks. A study, reported on in The New York Times and Al Jazeera, highlighted that many developing countries are awash with falsified and substandard TB drugs. This was encouraging the spread of drug-resistant forms of TB (DR-TB), something that was also said to be the case in a Wall Street Journal article discussing India’s counter-productive TB strategy.

Following from these, this week TIME Magazine declares “Contagion: Why drug-resistant TB threatens us all”. Worryingly, the article points out that despite estimates “there will be over 2 million new cases of MDR TB from 2011 to 2015, yet today only 10% of new MDR cases get proper treatment”. Continue reading

Tuberculosis in the Media

Tuberculosis remains the world’s deadliest infectious disease after AIDS. In 2011, 1.4 million people died from TB, and every year more than 8 million people get sick with the disease. These figures are often shocking to many who believe TB to be a disease from the past, and recent media reports have highlighted some of the reasons for these unacceptable figures.

India’s TB strategy isn’t working

On Saturday, The Wall Street Journal (WSJ) raised concerns that an emergency strategy to defeat drug-resistant tuberculosis (DR-TB) in India was instead encouraging more deadly and unstoppable strains. DR-TB refers to strains of TB bacteria that are resistant to any anti-TB drugs.

Geeta Anand reports that the strategy is treating at least some, if not many, DR-TB patients with medications that they are already resistant to. The results of such a strategy inevitably lead to the emergence of strains that have even greater resistance.  Indeed, there are a growing number of reports of extensively drug-resistant TB (XDR-TB), with the WHO reporting that are at least 77 countries with confirmed XDR-TB cases. XDR-TB is a form of TB that is resistant to isoniazid and rifampicin (the two most powerful anti-TB drugs) as well as any of the second-line anti-TB injectable drugs. Treatment of these strains are much more difficult, and costly, to treat. DR-TB strains can take up to two years or more to treat with drugs that are much more potent, toxic and expensive (MDR-TB drugs can cost up to US$5000, compared to US$20 for standard TB drugs).

The problem with India’s approach, which Mario Raviglione (Director of the World Health Organisation’s (WHO) Stop TB Department) refers to as ‘complete nonsense’, is that it tries to be one-size-fits-all. Patients are given the same six-drug cocktail, without testing to see which drugs they are resistant to.

Worryingly, the article points out that ‘India doesn’t have enough labs to test every patient for resistance, and likely won’t for years’.  Raviglione suggests:

‘if there aren’t enough labs to do that [thorough testing], Mumbai should conduct surveys to see which drugs its patients are most resistant to, then replace those in the standard cocktail’.

For now some patients are (relatively) lucky in that they are able to find private hospitals that can test their resistance, and subsequently pay out-of-pocket for a cocktail of drugs that is more likely to work for them. However for the vast majority of patients this will not be an option. TB health officials have been urging the government to change its strategy, before its simply too late for the millions of TB patients in India.

Countries awash with fake and substandard TB medication

TB PILLSThe New York Times and Al-Jazeera have both reported on a recent study published in the International Journal of Tuberculosis and Lung Disease, which found that fake and poorly made antibiotics are being widely used to treat tuberculosis.

Researchers collected samples of the two frontline TB drugs (isoniazid and rifampicin) from pharmacies and markets in 17 countries where TB is common across Africa, Asia, South America and Europe.

From this sample, they found that nearly one in ten pills failed to meet basic quality standards, typically having too little of the active ingredient (the molecule that destroys the TB bacteria) present. Some of these were poorly made, while others had either corroded in transport or had been produced and distributed through criminal enterprises.

The study highlights that access to treatment is one of the main factors behind patients not receiving the supervised treatment and quality medicines that the WHO recommends. The cost of travelling to clinics is often very difficult for patients to bear, particularly because of the expense associated with travel and the high cost of in-patient treatment. Roger Bate, co-author of the study, says that in Zambia for example, ‘treatment through the tuberculosis program is three times more expensive than self-administering drugs purchased at local markets’.

The fact that the use of these drugs is widespread in at least 17 countries with high rates of TB must be addressed. As Lucica Ditiu has said:

“[By using substandard drugs to treat TB], in addition to the fact that the patient remains infectious and his treatment results will be really, really poor, you also develop a multi-drug resistant TB which is one of the worst forms of TB that unfortunately we have in this world. And that’s much more difficult to treat, it’s much more difficult to cure and is much more expensive.”

DR-TB strains of TB are a real and growing problem, and not just in the developing world. In the UK the number of DR-TB cases continues to rise, with 431 cases (8.4%) resistant to any first line drug reported in 2011, up from 342 in 2010 – an increase of 26%. It is encouraging that these stories are being featured in such prominent publications and media outlets, and we must continue to make parliamentarians and influencers take note of the growing epidemic and urge them to take  coordinated action to save millions of lives.

Click here for the NY Times article.

Click here for the Al Jazeera report.

Click here for the WSJ article.

In Romania, politics allows drug resistant TB to flourish

Last week RESULTS UK and TB Alert, both members of the TB Europe Coalition, travelled to Romania to help facilitate an advocacy training and planning session for the Stop TB Romania Partnership. As part of the visit, Jess Kuehne, our European Health Advocacy Officer, visited a hospital that treats patients with drug-resistant TB.  Jess tells her first-hand account of the visit:

What’s it like to look a 20-year-old girl in the face and know that there is a good chance she will not overcome the extremely drug-resistant bacteria that have taken over her lungs? I was able to find out last week when I travelled to Bucharest as part of the TB Europe Coalition to help the Stop TB Romania Partnership develop an advocacy strategy.

RESULTS’ collaboration with NGOs in Romania began last year when we searched for patient stories for our report ‘Tuberculosis: Voices in the fight against the European epidemic’. During that time I was put in touch with Jonathan Stillo, a medical anthropologist who has been researching TB in Romania since 2006 and provided us with Iulian’s powerful story.

During my time in Bucharest, I, along with Jon, Paul Sommerfeld from TB Alert and Misu Stefan from Romanian Angel Appeal, visited a hospital that treats patients with drug-resistant TB. Jon has documented the significant challenges Romania faces in dealing with drug-resistant TB, and my visit to the hospital further demonstrated the plight that TB patients face.

At the hospital, we were given face masks before entering the hospital’s drug-resistant TB ward. The face masks were uncomfortable and made it awkward to speak to patients, not just because they made us look like a little like Bane from Batman, but because the masks also made it impossible to give a friendly smile. Yet our discomfort paled in comparison to the experiences of the patients we were about to meet.

We had the opportunity to speak with two young girls, Katalina and Alexandra*, both in their early 20s, both appearing otherwise healthy, but both battling strains of drug-resistant TB. Continue reading

New study reveals shocking levels of extremely drug resistant tuberculosis

A study published yesterday by the Lancet has found much higher rates of drug resistant TB than previously estimated in eight countries around the world. The study found that among patients with multi-drug resistant TB (MDR-TB), 43 percent of cases were resistant to at least one second-line drug used to treat MDR-TB.

TB patients are treated with a six to nine month course of treatment that costs as little as $20 in the developing world. However, if drugs are taken incorrectly or stopped prematurely, the TB bacteria can re-emerge and become resistant to medication. Drug resistant strains are much more costly and difficult –sometimes even impossible – to cure. Drug resistant TB strains often develop in areas where case management is weak and where there is poor TB control.

MDR-TB is a drug resistant form of TB that does not respond to the standard treatment using first-line drugs. Extensively drug-resistant TB (XDR-TB) occurs when resistance to second-line drugs develops on top of MDR-TB.

The Lancet study enrolled 1,278 MDR-TB patients in Estonia, Latvia, Peru, Philippines, Russia, South Africa, South Korea and Thailand and tested them to see how many were resistant to second-line drugs. Among all patients, 43.7 percent were resistant to at least one second-line drug and 6.7 percent had XDR-TB. Continue reading

Remembering Iulian: A TB patient brave enough to tell his story

Credit: Jonathan Stillo

You may remember last year when RESULTS UK came out with a report called “Tuberculosis: Voices in the Fight Against the European Epidemic“. The report featured the voices and stories of the individuals and communities who have been fighting TB on the ground. One of the stories we featured was that of Iulian, a Romanian who had contracted multidrug-resistant TB (MDR-TB) and had been forced to break off his TB treatment in order to go back to work to support his family.

This week we received they terribly sad news that Iulian developed extensively-drug resistant TB (XDR-TB) and passed away a few weeks ago. Jonathan Stillo, who interviewed Iulian for our TB Voices report, has written an incredibly powerful and inspiring obituary titled “An Obituary for Iulian, a Romanian XDR-TB Patient, Husband, Father, and my Friend“. We have included an excerpt here telling of Jonathan’s return to the sanatorium and seeing Iulian the last time before he died:

We went room by room accompanied by the Romanian National TB Manager and handed out little care packages to the patients. It was a bittersweet return for me because so many of the patients I had grown close with were already dead. About halfway down one hall, our procession came to a halt and a nurse told me there was someone who wanted to see me inside. As I got closer I saw it was Iulian. She whispered in my ear that he was much worse and now had XDR. She started to cry. As I entered the room he had a huge smile on his face and said “Hey Jon!” He was smiling ear to ear, but looked terrible. His cheeks were sunken and his skin was hot with fever.  He looked so frail.  My heart sank.  He told me that he was much worse, but that he was still fighting. He died two months later in his home with the people he loved so dearly. He once told me: “Here in Romania, if you don’t work, you starve to death. There are two options: you take the TB pills and get better but starve, or you work and have to come back to the sanatorium. So it’s a lose-lose situation.” These words couldn’t be truer. In Romania, every day, TB patients are forced to make impossible choices between their own well-being and that of their family. Iulian chose his family. I’m sure he doesn’t regret it.

Iulian’s death may not have been caused by, but was certainly hastened by a shortage of one of the drugs he needed. Nine months before he died, his local dispensary, as well as the sanatorium, were out of ciprofloxacin. This drug is inexpensive and since 2008 has been replaced in World Health Organization treatment protocols by a more effective but expensive one (ofloxacin). Romanians are guaranteed free TB treatment, but drug stock-outs are common. This stock-out and subsequent treatment interruption probably caused Iulian to develop XDR-TB.

The full obituary can be read by clicking here.

Iulian’s story was the most powerful story we received for the TB Voices report, and it reminds us why the work we do matters. Iulian’s death was preventable, which is why it is so important that we continue to call on decision makers to listen and to take genuine political action to tackle this disease.

Our thoughts are with Iulian’s family during this difficult time.

Highest rates of drug resistant TB ever reported on the EU’s doorstep

Image courtesy of World Lung Foundation

As reported by the Guardian, a recently published WHO Bulletin has documented the highest rates of multi-drug resistant TB (MDR-TB) ever to have been reported. Authors of the study found of the 80 countries that reported tuberculosis surveillance data, the highest rates of MDR-TB were identified in Russia (28.9%) and Moldova (65.1%). The study states:

“Available data confirm that Eastern Europe and Central Asia continue to have the world’s highest proportion of MDR-TB among TB cases. In 2007–2010 the highest proportions ever reported globally were documented in areas of the former Soviet Union.”

Multi-drug resistant TB occurs when the TB bacteria develops resistance to isoniazid and rifampicin, two first-line drugs used to treat people with TB. Resistance often develops in areas with poor TB control programmes where TB treatment is poorly managed, when patients do not complete their full course of treatment, when incorrect dosages are prescribed or when there is a break in drug supply. Continue reading

TB cases that can’t be cured and a lack of funds to fight the problem

News of incurable cases of TB has cropped up in India, where at least 12 patients with TB did not respond to first or second-line drugs they were given. None of them have been successfully treated and three have died. These cases are being termed ‘totally drug-resistant tuberculosis’ or ‘TDR-TB’.

TB is normally treated with a six to nine month-long course of antibiotics. Resistance occurs when TB cases are inappropriately managed and doses are erratic or interrupted, enabling the TB bacteria to resurge. This has been a particular problem within the private sector in India, where private practitioners have not been prescribing the correct doses or the correct combination of drugs needed to cure TB.

Dr. Carol Dukes Hamilton of Duke University explains:

“If you don’t provide supervised second-line drugs, this is what you’re going to see. People go to practitioners who aren’t TB experts. They don’t give the right doses or make sure people take them.”

Continue reading

Helen Parker – global health student journalism competition runner up!

We are delighted to announce the winner and four runners up of RESULTS UK and the Students Stop AIDS Campaign global health journalism competition. We will be showcasing each article and revealing the shortlist on the lead up to Christmas! Today, we would like to introduce our first runner up, Helen Parker.

“Helen is currently studying for an MSc in Natural Resource Management at Oxford, after graduating from Cambridge in July this year. She is committed to global health issues, and worked for VSO as an HIV and AIDS Peer Educator in China for 12 months.  She also worked for the Stop TB Partnership of the World Health Organisation in summer 2010.”

Curing the Sick Market – Harnessing the power of the private Tuberculosis drug market is an essential step in the fight against the epidemic

Do you know these stories? The first is a crying African child, alone in a grubby cot. She is ‘An AIDS Orphan’. Her parents died from HIV related Tuberculosis (TB). The second is an emaciated South Asian man, sitting in a rudimentary hospital bed, misery etched, hopeless. He is ‘A TB Sufferer’. He may well die of TB.

For many of us, these are the images, the histories and the issues that are associated with TB, propagated by media, NGOs and advocacy groups. The stories are the face of poverty and sickness in a distant place. They are important, because they inspire the empathy essential to encourage donations and drive campaigns for change. However, the dominance of TB victims in the popular consciousness can obscure the true drivers of the epidemic.
TB is one of ‘The Big Three’ diseases fought by The Global Fund, along with HIV/AIDS and Malaria. However, unlike HIV, TB is curable, and yet every year 1.4 million women, children and men continue to die from it. TB is the leading cause of death for people living with HIV/AIDS. TB is also the second most common infectious cause of death globally, and, unlike Malaria, can be found in central London and New York as well as Africa, Asia and other developing regions.

Kolleen Bouchane on Contagion

Last weekend, a new film opened at the American Box Office: Contagion, a film directed by Steven Soderbergh and starring Matt Damon, Gwynneth Paltrow, Marion Cotillard, Laurence Fishburne, Jude Law and Kate Winslet. It went straight to number one in the box office list.

In the movie there is a massive outbreak of a deadly disease that kills millions of people, and the film follows the destruction of people’s lives and the breakdown of society that occurs until a vaccine can be found.

While the film is not based on real events, we actually have a real-life contagion spreading right now with multi-drug resistant tuberculosis (MDR-TB). It’s not quite as rapid as the Hollywood version, but it’s just as relentless, and it’s not just limited to far away places.

ACTION Project Director Kolleen Bouchane has written an excellent article on Contagion and TB over on the Huffinton Post. We highly recommend you give it a read: drug resistant TB is deadly serious, although it has not yet reached “number one”, so building support to fight TB is more critical than ever.

Our March action from earlier this year is still relevant, so please take a few minutes to let our government know this issue matters to you.