25.0k 50k
28,464

28,464 signatures already -
help us reach 50,000.
Only 4 weeks left until we take this petition to world health leaders!

Read the manifesto
Test Me, Treat Me
A Drug-Resistant TB Manifesto

By signing this petition, I support DR-TB patients and medical care providers in demanding the urgent changes outlined in their DR-TB Manifesto:

We, the people infected with drug-resistant tuberculosis (DR-TB), live in every part of the world.

Most of us were exposed and became infected with DR-TB because of the poor conditions in which we live. Undiagnosed, this disease spreads among us. Untreated, this disease kills. But in the countries in which we live, fast and accurate diagnosis is rarely available and only about one in five of us actually receive effective DR-TB treatment.

Those of us “lucky” enough to receive treatment have to go through an excruciating two-year journey where we must swallow up to 20 pills a day and receive a painful injection every day for the first 8 months, making it hard to sit or even lie down. For many of us, the treatment makes us feel sicker than the disease itself, as it causes nausea, body aches and rashes. The drugs make many of us go deaf permanently and of us develop psychosis.

For most of us, life as we knew it changes dramatically. We cannot go to work, or take care of our loved ones, or go to school. Often, we are stigmatised and face social exclusion. Surviving this treatment itself is a huge challenge — one that many people cannot manage. But we have no choice if we want to live. So we must be brave, strong-willed and have hope that we will be cured. We need immense support from our medical staff, our family and our friends to help us complete our treatment. And even then, only half of us are successfully treated with the current drug regimens. For every person with DR-TB who signs this manifesto, there is another person who is no longer able to. The demands we make in this manifesto are therefore made in honour of their memory.

We, the medical staff who provide medical care for people with DR-TB, find it unacceptable that the only treatment options that we can offer people cause so much suffering, especially when the chance of cure is so low. We have no choice but to juggle combinations of largely ineffective and toxic drugs, while doing our best to manage the debilitating side effects and provide as much support and counselling as possible with limited resources.

As the epidemic continues to spread, DR-TB becomes increasingly hard to tackle. The treatment is too long, too toxic and too costly – the drugs alone cost at least $4,000 just to treat one person. We want to save many more lives, but we desperately need shorter, safer and more effective treatment to do so.

We, the undersigned people with DR-TB and those involved in their care, here raise the alarm about the devastating toll this disease is taking on us, our families and communities across the globe and therefore make the following three demands:

1) We call for universal access to DR-TB diagnosis and treatment now:

Governments everywhere should provide national treatment programmes to diagnose and treat all people with DR-TB. Fast and reliable diagnostic techniques should be made widely available so that DR-TB can be detected early and treatment started as soon as possible to improve our chances of cure, while reducing the risk of further transmission in our communities. Treatment and prevention measures should be available close to where people live and work so that we can continue to support our families and communities without placing them at risk or compromising our treatment. People close to us should be offered routine TB screening,
especially our children, to ensure they get necessary treatment or prophylaxis and if necessary, for our children to be treated close to home and not far away in specialist hospitals. We ask for ourselves and our families to be educated and supported through adequate counselling and to be more involved in decisions regarding our treatment. Healthcare staff should be trained to manage DR-TB within existing TB programmes at a local primary care level, so that DR-TB testing, treatment and ongoing care is accessible to as many people as possible and as close to their homes as possible.

2) We call for better treatment regimens - the TB research community, including research institutes and drug companies, must urgently deliver effective, more tolerable, shorter and affordable DR-TB drug regimens:

With two new drugs for TB becoming available in 2013 and more in development, we demand that the opportunity be seized by the global TB community to urgently develop improved treatment regimens for DR-TB. We need drug regimens that are more effective against DR-TB to improve our chances of survival and reduce the horrible side effects we currently endure. We need treatment that is far shorter and does not put our lives on hold for upto two years. We need treatment that is easy to take, with fewer pills and no more painful daily
injections. We need new drug formulations, like syrups or smaller tablets, that our children with DR- TB can easily swallow. We need DR-TB drugs which do not interact with HIV medicines and which allow both diseases to be treated effectively. We need drug companies to make existing DR-TB treatment as well as newly-developed drugs available at affordable prices in countries with the greatest burden of disease to ensure those most affected are able to access effective treatment.

3) We call for more financial support to increase DR-TB treatment, and a commitment to support research into developing better treatment:

International donors and governments of affected countries must prioritise and financially support diagnosis and treatment of DR-TB, through national programs, bilateral aid programs or multilateral programs like the Global Fund. New drugs must be developed specifically to treat DR-TB, while research must continue into combinations using
new and existing drugs to respond to the wide range of drug resistance. Research and development must be financed to rapidly develop not only effective and safe new drugs, but also easy-to-use, accurate and affordable diagnostics, as well as development of a vaccine to prevent the spread of TB.

We as patients and healthcare providers commit ourselves to:

  • Encouraging each other to test for TB, take our treatment and remain in care
  • Protecting those people close to us from TB transmission
  • Holding our governments accountable and pushing them to respond to the crisis
  • Sharing our stories to improve TB awareness and reduce stigma in our communities

Sign Now!

YES, I support the DR-TB Manifesto demands for:

  1. Universal access to DR-TB diagnosis and treatment now
  2. Better DR-TB treatment regimens
  3. Sufficient funding to meet these goals


28,464
People have signed so far

WHY WAS THIS CAMPAIGN LAUNCHED?

Patients and medical care providers find today’s situation intolerable. Phumeza Tisile, a now-cured XDR-TB patient, and her MSF doctor Jenny Hughes wrote a public declaration – the DR-TB Manifesto – describing today’s unacceptable status quo and asking for the global community to support their call for action. Today, fewer than 20% of those with DR-TB receive proper diagnosis and treatment. Today’s treatment is horrific – lengthy, toxic, complex and expensive – and cure rates are only 50%. Better diagnostics are rolling out, and new drugs are on the way, but massive political will is needed to seize the opportunity to radically transform DR-TB care. By raising our voices together we hope to make the DR-TB Manifesto demands a reality.

WHAT HAPPENS NEXT?

The DR-TB Manifesto will be shared with key power brokers, including governments, funders, pharmaceutical companies and policymakers at the World Health Assembly in Geneva 19-24 May, 2014. After you sign the petition, we’llkeep you updated on handover plans, and progress is recorded in the updates section of this site.

Meet some of the original signers of the Manifesto

  • Myanmar:

    Saw Naing & Dr Aung

    Saw Naing from Myanmar was diagnosed with MDR-TB in October 2012. He is currently taking a cocktail of six drugs and is being closely monitored by Dr Pyae Phyo Aung, in the MSF project in Yangon.

    Russia:

    SAID-HUSSEIN SADULAEV & Dr Devkota

    Said-Hussein Sadulaev lives in Chechnya, Russia and was diagnosed with MDR-TB in August 2012. Said-Hussein was put on treatment by Dr Satish Chandra Devkota, a Nepalese DR-TB doctor who’s been working in the MSF project for two years.

    South Africa:

    PHUMEZA TISILE & Dr Hughes

    Phumeza Tisile from Khayelitsha, South Africa was diagnosed with MDR-TB in 2010; it was only after she’d gone deaf from treatment that she discovered that she had XDR-TB all along. She and her doctor Jennifer Hughes celebrated Phumeza’s cure in September 2013

Supporting organisations

Organisations involved in DR-TB care can endorse the DR-TB Manifesto – please email us to start the process!

Riders for Health
www.riders.org
Treatment Action Group
www.treatmentactiongroup.org
TB Centre at LSHTM
tb.lshtm.ac.uk
TB Proof
www.tbproof.org
Holland KNCV Tuberculosis Foundation
www.tuberculose.nl
Centre de Recherche Medicales de Lambarene
www.cermel.org
RESULTS Canada
www.results-resultats.ca
Operation ASHA
www.opasha.org
  • TB & Me blogger becomes one of the first MSF patients in SA cured of XDR-TB

    In August 2013, after two years of highly intensive treatment for extensively drug resistant TB (XDR-TB), MSF patient Phumeza Tisile was diagnosed as clinically well (‘cured’), having had more than 5 consecutive negative sputum culture results in the last 12 months of treatment. Staff and patients celebrated her good news at Lizo Nobanda TB Care Centre, which MSF handed over to St John’s Hospice in July 2013.

    Phumeza was the first patient enrolled on MSF’s ‘Strengthened Regimen’ progamme which is being piloted within the well-established Decentralised Drug Resistant TB (DR-TB) Programme in Khayelitsha. Of the 22 patients enrolled to receive a tailored regimen (including linezolid) since July 2011, Phumeza is the first to be cured.

    Phumeza has blogged extensively about her experience with XDR-TB on MSF’s TB+ME blog: http://blogs.msf.org/tb/author/phumeza/ and was one of the authors of the TB Manifesto www.msfaccess.com/TBManifesto
  • TEST ME, TREAT ME: A Drug-Resistant Tuberculosis Manifesto

    People with drug-resistant TB and their medical providers worldwide call for urgent change in the treatment and diagnosis of DR-TB.

    Show your support for people living with MDR-TB, share their call for better treatment & tools, visit www.msfaccess.org/TBmanifesto
  • DRTB in the town of Mon

    In the mountainous region of Nagaland in North East India, MSF is working alongside the local and national authorities to provide treatment for patients with drug resistant TB in the town of Mon.
  • DR-TB Pills Animation

    How many pills does it take to treat one person with drug-resistant TB? We need better treatment now: www.msfaccess.org/tbmanifesto
  • Share in my Solitude: Living with drug-resistant TB

    In this photofilm, Happiness Dlamini talks about her experiences of living with the treatment for drug-resistant TB.

    Happiness, who has a four-year old daughter and an eleven-year old son, lives in the Shiselweni Region of Swaziland.

    In 2003 she discovered that she was HIV positive and last year she found out she also was infected with drug-resistant tuberculosis.

    She’s undergoing an arduous two year treatment course which requires her to take 15 pills each day as well as having a painful daily injection for the first six months of her treatment.

    Photos by Krisanne Johnson

    Show your support for people living with MDR-TB, share their call for better treatment & tools, visit www.msfaccess.org/TBmanifesto
  • Senzo’s Story

    Senzo is seven years old and lives alone with his grandmother in Mgazini, Matsanjeni Health Zone. He is HIV-positive and has been on treatment for multidrug-resistant tuberculosis (MDR-TB) at the clinic Our Lady of Sorrows in Matsanjeni Health Zone, Shiselweni Region, in Swaziland for just over five months.

    Learn more about Senzo, http://ow.ly/78Ph3

    Show your support for people living with MDR-TB, share their call for better treatment & tools, visit www.msfaccess.org/TBmanifesto
  • Uzbekistan: A Mother With MDR-TB

    She had all but given up, thinking her TB was going to end her life. Her coffin had already been built. But then Rohatay Abdullaeva, a former nurse living in northwest Uzbekistan, learned she could get help, that she could heal.

    As World TB Day approaches, MSF celebrates her good health as a sign of what's possible, but also remembers the huge and growing numbers of people with TB and drug resistant TB who cannot get the help they need.

    Show your support for people living with MDR-TB, share their call for better treatment & tools, visit www.msfaccess.org/TBmanifesto
  • Final Frontier (3): Historic opportunity for a new treatment regimen

    An historic opportunity exists to tackle the escalating drug-resistant TB (DR-TB) public health emergency. Yet, the global response barely touches the surface of the problem. MSF works at the front-line of the DR-TB crisis in 21 countries around the world. 'The Final Frontier' shares our experience and learning in three areas. Watch the series to find out more.

Latest news

INFOGRAPHICS

Reports

DR-TB Drugs Under the Microscope: 3rd Edition

View report

Out of the Dark: Meeting the Needs of Children With TB

View report

Definitions

Drug-resistant tuberculosis (DR-TB) is used to describe strains of TB that show resistance to one or more first-line TB drugs, and is an umbrella term encompassing MDR-TB and XDR-TB.
Multidrug-resistant tuberculosis (MDR-TB) is a strain of TB that is resistant to two of the most powerful first-line TB drugs.
Extensively drug-resistant tuberculosis (XDR-TB) is caused by strains of MDR-TB that are also resistant to multiple second-line TB drugs.

Tweet for change

Tweet
for change
Tweet this Test Me Treat Me: People with drug-resistant #TB & their doctors call for urgent change in #TBManifesto. Join them www.msfaccess.org/TBManifesto
Tweet this It takes 14,600 pills to be cured from MDR-#TB! Can we do 14,600 Tweets to ask for URGENT change? #TBManifesto www.msfaccess.org/TBManifesto

Download Toolkits

Facebook covers, avatars & DR-TB facts

Web banners and infographics for your website/blog

Campaign posters & leaflets to print out

Stay updated

Subscribe

Sign up to receive monthly updates from the MSF Access Campaign. We will not share this information with others.

Follow us