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.

The Health Protection Agency (HPA) have welcomed the announcement from the Home Office and noted that they had been concerned for a number of years that the current policy of chest x-rays at Heathrow and Gatwick is not an cost effective or appropriate way of dealing with TB.

Why have the Home Office made this change?

The policy change has been driven by a review by the UK Border Agency (UKBA) with support from the HPA and Department of Health of the current arrangements for screening migrants from high incidence countries for active pulmonary TB to better protect UK public health and to use public resources more effectively. The scheme, which is employed in the USA, Australia and Canada, has already been piloted in 15 countries by the UKBA and will be introduced in three phases over an 18 month period – beginning in the summer of 2012.

Will this have a significant impact on rates of TB in the UK?

The Home Office rightly note that TB is a complex disease and that screening of migrants as part of immigration clearance can only make a limited contribution to TB control in the UK. This measure is targeted at active forms of the disease and it is important to remember that one third of the world’s population are estimated to have latent TB – that’s around 2bn people.

A minority will develop the disease in its active form at some point in their lives, but it is currently impossible to establish through screening if this is likely to occur in any individual case. Also, crucially most foreign-born TB patients only develop the disease in its active form years after arrival in the UK.

It is essential that the UK Government explore ways to improve the sharing of information between the UKBA and the HPA about individuals coming to live in the UK for more than six months from high incidence countries. This will complement the systems that are already in place at a local level for connecting individuals with healthcare services.

The global picture of TB

TB is a global public health issue, with the active form of the disease affecting almost 9 million people each year and killing over 1.4 million, despite being curable. While TB rates in this country are stable, at around 8500, HPA data indicates higher rates of infection concentrated in particular metropolitan areas like London, which is estimated to have the highest rates of TB of any western European capital. Overall the UK’s TB rate compares extremely unfavourably when compared to other developed nations.

Take London for example. It has relatively high rates of TB and accounts for almost 40% of all cases in the UK. Other cities in Europe have faced similar difficulties addressing TB, but have been more successful reducing the rates of the disease. In order for it to be effectively tackled it needs to have appropriate focus, attention and resources.  In essence it needs a fully thought through and funded plan.

There is a plan in place to further improve current interventions for TB in the capital and the Vice-Chair of the All-Part Parliamentary Group on Global Tuberculosis Virendra Sharma MP (Lab, Ealing Southall) and 16 other MP’s have thrown their support behind a London TB Model of Care (EDM 3002), which could reduce the current number of people affected by the disease in the London – if implemented fully.  However, current changes in the NHS mean it is unclear if the model will receive the support and attention required to instigate the step change that is really needed.

Speakers at a training session on the UN Convention on the Rights of Persons with Disabilities in Odek County, Uganda. Photo by Bryan Lupton AP Fellow in Gulu, Uganda July 2009 Partner: Survivor Corps Uganda

15% of the world’s population – over a billion people – live with a disability, and disabled people are also disproportionately more likely to be among the extremely poor. The World Bank estimate that 20% of people living below $1.25 a day are disabled. The link between disability and poverty works both ways: disabled people are more likely to become poor, and poverty is also a major cause of disability. Disabled people are frequently excluded from accessing basic services, including education (approximately one third of out of school children of primary age have a disability) and health (disabled people are more likely than non-disabled people to report being denied access to healthcare, not being able to access appropriate healthcare, and being badly treated by healthcare professionals).

But despite this, there has historically been very little attention to the rights and needs of disabled people in development work. There is no mention at all of disability in the Millennium Development Goals (MDGs). This is a serious problem – discrimination against disabled people frequently leads to being trapped in a cycle of extreme poverty for life, and there is far too little done to address the specific problems faced by such a big section of the population that the MDGs are supposed to target.

But is this changing? We have seen encouraging signs in recent months that disability is moving up the list of priorities in the development sector. RESULTS has been working with BOND’s Disability and Development Group and with an informal group of NGOs who are campaigning together on the need to improve disabled children’s access to quality education in the developing world, and we are seeing more receptivity to our messages.

AK Dube, Chief Executive of the African Decade of Persons with Disabilities

The development world is currently deep in discussions around what will happen after 2015, the date at which the majority of the MDGs targets are due. The MDGs have framed the international community’s development efforts for the last decade, and how the successor framework is set up is likely to have an equally big influence on how we do development post-2015. The disability movement is pushing hard for recognition of the specific needs that disabled people face – see the interesting discussion by AK Dube, Chief Executive of the African Decade of Persons with Disabilities, in this Guardian article from 2011, and Mr Dube’s blog for Sightsavers. With the entry into force of the UN Convention on the Rights of Persons with Disabilities in 2008, we have much greater tools at our disposal in this set of negotiations. The World Health Organisation has also made a major contribution in recent years, with the publication of the World Report on Disability in 2011 providing crucial hard evidence on the situation facing disabled people around the world.

It’s too early to know for sure, but with David Cameron being appointed to the UN High-level Panel on Post-MDGs we in the UK have an opportunity to feed into how the conversation develops. At RESULTS we will be pushing strongly for an approach based on equity and inclusion, including for disabled people. Watch this space for more news!

“Good evening, my name is Nick Horslen. Let me start by first of all offering my thanks, support and applause to everyone involved with LBL and to the many organisations aiming to eradicate extreme poverty here tonight, and especially my friends as sponsors. Let me also stand here and humbly share my five day experience in three minutes as I’ve been invited to do.

I’m here because my mum Joan was born in extreme poverty here in the UK in 1936, she was dumped in a field at the age of two days old in the east end of London by her mother, that level of neglect is the depths of poverty for me, whatever the reasons that we never did find out. She went on to raise five kids, of whom I’m the middle one and my elder sister Tina born in 1956 died in extreme poverty in 2011 and is buried in a field on the boarder of  Guyana and Brazil. She could not get back to Georgetown because of the lack of transport and healthcare on the border between Brazil and Guyana, something as simple as a tropical storm prevented her getting back to her loved ones. That lack of choice and control was what poverty does to people.

We don’t have extreme poverty in this country, not when we think about the 1.4Bn people around the world who live on less than $1.25 a day, but in the words of Jose Abreu on TED.com: “poverty is not just the measure of the roof over your head or the bread on your table, it is the sense that you are no one important”. And I think that is a mother Theresa quote.

So for my five days Live Below The Line gave voices to people living in extreme poverty. And while most think of a voice as words, the reality is that words on paper or in a speech are largely symbolic, they reflect two things, the signified and the signifiers and those as symbols can often be different to the “real” thing! Much of that sort of stuff is delivered in a hugely symbolic place such as this, as beautiful, powerful and sometimes spiritual place as it is. Sometimes we need to ensure that we don’t lose sight of the “real” through words and symbolism. So the unaffected voices that I felt for five days was the voice of a new relationship with food, a voice that cannot be spoken, a voice that nobody heard in the usual sense. For me it was the voice of poverty that I carry with me now.

How did those voices manifest them self to me? In turning them into words I risk diluting or misrepresenting or even risk  you misinterpreting them but they were the voices that came from my wallet, my sense of entitlement, my lifestyle but mostly the voices of my stomach, my heart and my brain.

When I took my £5 and had to buy 15 meals for 5 days I was shocked.

When my wife Julie and 11 year old son Louis saw my less than desirable dhal and chapatti one night and I offered them some, they said they wouldn’t want to eat that. I was grateful and eat it all.

When I listen to the politics show and hear Andrew Neil question why central government commits more money to International development than it does to the police, I was outraged at the fraud involved in re scaling those two issues.

I had five days where I had a new relationship with food. I learnt by listening to my stomach, that I can eat that! I learnt listening to my heart that we cannot see 1.4Bn people live without choice and control! I learned by listening to my brain that 0.7% is such a tiny price to achieve such high goals as Millennium Development Goals 1, 2, 3, 4, 5, 6, 7 & 8.

When I think off all the beautiful new babies being born today in London, Burma, Afghanistan, Yemen and Somalia and all the beautiful talented people who will die today, I know we can better feed them, educate them, help the women in their equal role, also fix the infant mortality and the maternal care, while dealing with the preventable illness while helping people, communities and farms be more sustainable. It all starts with a new relationship with food and with listening not just to words but to the voice from the pit of our stomach. That is my experience of LBL! For me It was not about “words” but about deeds and “listening”. I thank you for being here and listening BUT most of all I thank you for thinking and acting in your own small and large ways and helping me to do the same!”

The fight against Polio (poliomyelitis) received a boost last week with the launch of an ‘emergency action plan’ by the Global Polio Eradication Initiative (GPEI). The news follows recent fears about the resurgence of the disease in countries such as the Congo and China where the disease was thought to have been eradicated.

Polio is a disease caused by a virus which operates within its victims’ nervous system. It affects children mainly under the age of five and often leads to paralysis and in some cases death.

The plan devised by the GPEI involves increasing the WHO’s current vaccination programmes in Nigeria, Pakistan and Afghanistan, the only three countries where polio remains endemic, to levels needed to prevent the transmission of the disease. If the programme is successful in eradicating the disease, polio will become only the second disease ever to have been eradicated after small pox.

The GPEI was formed in 1988 and was spearheaded by the WHO, Rotary International, the United States Centers for Disease Control and Prevention and UNICEF. It is also supported by polio-affected and donor governments, private foundations, development banks, humanitarian and non-governmental organizations, corporate partners and more than 20 million volunteers.

Vaccinations have to date been the most effective means of preventing the spread of the disease. The most common vaccines are oral polio vaccine (OPV) and inactivated polio vaccine (IPV). The programme has faced various challenges in the countries in which the disease is still endemic such as insecurity, weak health systems and poor sanitation.

These can be compounded by religious and political boundaries, for instance, certain extremist Islamic leaders in Pakistan and Nigeria have denounced the vaccination programme as a western conspiracy thereby preventing health officials from administering vaccinations to populations who remain prone to contracting the disease.

The UN has joined the WHO in publicly highlighting the threats posed by the disease if left unchecked. “Wild viruses and wildfires have two things in common. If neglected, they can spread out of control. If handled properly, they can be stamped out for good,” the organisation’s Secretary-General Ban Ki-moon said last week. According to Ban Ki-moon the Global Polio Eradication Initiative has only half of the $2 billion it needs to procure vaccines and deploy staff to cover the areas in the countries in which the disease is prevalent. The UN anticipates that about $40-50 billion will be saved in the cost of treatment by 2035, not to mention the countless lives of children at risk across the globe, if its last stand against polio is successful.

This particular Written Declaration was tabled by a group of MEPs including Mary Honeyball MEP who represents members of the RESULTS London groups. The RESULTS July 2011 action on EU financing for vaccination played an important role in getting the Declaration tabled.

The Declaration makes three points:

1.       Congratulates the Commission on the support it has given to the GAVI via the Development Cooperation Instrument and the European Development Fund between 2003 and 2012;

2.       Urges the Commission to make a continued commitment to reducing the number of vaccine-preventable deaths in its future external actions;

3.       Instructs its President to forward this declaration, together with the names of the signatories, to the parliaments of the Member States.

Now that the Declaration has passed, there are a number of possible further actions which MEPs can take to further the agenda set out in the WD within the European Parliamentary system, putting increased access to vaccination firmly on the agenda. We will be working hard to maximise this exposure and make use of all possible advocacy channels with our colleagues in Europe.

This is an excellent step forward for our EU advocacy work and shows the strong support among MEPs for global health and vaccination, the collaboration between RESULTS UK, the ONE Campaign Brussels and Global Health Advocates France has been crucial in making this happen. RESULTS grassroots have also played a key role in helping to reach the required number of signatories, contacting those members that were slow to sign and building public support for the declaration.

The Chair of the Committee, Malcolm Bruce MP, summed up the findings with:

The UK has been a reliable partner to the Global Fund but we are concerned at the continued delay in providing additional funds. We strongly urge the Department for International Development to do all possible to commit funds earlier than 2013. A significant increase by the UK could help to catalyse contributions from other donors.

There has been some welcome news since we completed our report with the Global Fund announcing £630 million in new funds. It is also reassuring to see other countries such as Japan stepping up to the plate with their largest ever annual contribution. Other donors – including the UK – also must commit new funds in the coming months if the Global Fund is to return to full operation speedily and carry on doing what it does best – saving lives.

We at RESULTS couldn’t agree more.

While the UK has stood by the Global Fund in word and in action by bringing forward previously pledged funds to help bridge the Global Fund’s cashflow problems in what was its most difficult year to date, there have been no new announcements of money.

This lack of new funding seems to be at odds with DFID’s rising budget and stands in contrast to the conclusions of the Multilateral Aid Review, completed in early 2011, which rated the Global Fund as an organisation worthy of increased investment. Repeated statements from Ministers that the UK stands ready to increase its funding substantially have not been acted on, and even a date for turning these commitments into an actual announcement of new funding has not been set.

We are very keen that DFID take the recommendations of the International Development Select Committee very seriously. We are looking forward to DFID making concrete steps towards increasing a UK contribution to this vital, life saving organisation, and to this happening sooner rather than later, and for the UK’s leadership to inspire other donors and multiply our impact. The time to act is now.

Speakers included Professor Salisbury, Director of Immunization at the Department of Health and Iain Simpson of the Global Alliance on Vaccines and Immunization who gave historical overviews of the progress vaccines have permitted in the field of global health. Within the recent past we have not only the eradication of smallpox to speak of but also promising giant steps towards the eradication of polio. Presenters from the London School of Hygiene and Tropical Medicine, Imperial College and the Oxford Emergent TB Consortium as well as the International Aids Vaccine Initiative (IAVI) gave detailed overviews of the R&D and investment required to bring TB and Aids vaccines to market.

In 2009, scientists announced the results from a Thai HIV vaccine trial. The large-scale trial showed that the regimen reduced the risk of HIV infection by

31 percent overall with the greatest protection in the first year after the vaccine regimen had been administered. This was the first ever data showing that an Aids vaccine can block the HIV infection in humans. Follow on research to this study is due to start this year, seeking to confirm and improve the efficacy of the vaccine. With respect to a TB vaccine, there has been some great progress in 2012 there are currently 15 vaccines which have entered clinical trials and 12 currently in trials. Some TB vaccine trial results show the right kind of immune response not only in infants, adolescents and adults, but also adults with latent TB, and adults who are HIV positive. This means that for both a TB and an Aids vaccine, we are on the brink of demonstrating efficacy.

However, the third phase of trials are even more expensive, requiring the donor community not only to sustain commitment but also to step up support just as scientific advances place zero deaths from TB-HIV within reach.

A statement by Anthony Fauci, M.D. Director, National Institute of Allergy and Infectious Diseases (NIAID), brings new hope that, with conststant research and funding, a successful HIV vaccine may become available in the not too distant future.

There have been a number of encouraging developments over the last year, with a number of NIAID-sponsored HIV vaccine clinical trials under way. The largest of these is examining whether a prime-boost vaccine regimen can prevent HIV infection or reduce the amount of virus in the blood of those participants who become infected despite vaccination.

Scientists have demonstrated that a vaccine can prevent a virulent monkey version of HIV infection. And in related experiments, injecting neuralizing antibodies directly into monkeys has been shown to prevent infection from a closely related virus to HIV found in monkeys.

“All of these advances reinforce our confidence that one day we will succeed at creating a safe, highly effective vaccine to prevent HIV infection.”

To contain and ultimately halt the HIV/AIDS pandemic, even the most effective vaccine must be part of a combination of medical and behavioral HIV prevention tools.

“Vaccines historically have been the single most important tool for controlling epidemics. With an ongoing commitment to HIV vaccine research, we have the potential to radically change the trajectory of the HIV/AIDS pandemic.”

This particular Written Declaration was tabled by a group of MEPs including Mary Honeyball who represents members of the RESULTS London groups. The RESULTS July 2011 action on EU financing for vaccination played an important role in getting the Declaration tabled.

The Declaration commends the EC on its support for GAVI so far, and urges it to support global efforts to reduce vaccine preventable deaths. RESULTS grassroots have been working hard to encourage their MEPs to add their names to the declaration.

This is an excellent step forward for our EU advocacy work and shows the strong support among MEPs for global health and vaccination. We will be working hard to ensure the Declaration reaches the full complement of signers. If you’d like to take action on this issue, please get in touch.