[Ip-health] MSF at WHA67: ‘We demand action’: Death toll from drug-resistant tuberculosis must be slashed within a year

Joanna Keenan-Siciliano joanna.l.keenan at gmail.com
Mon May 19 06:42:20 PDT 2014


*‘We demand action’: Death toll from drug-resistant tuberculosis must be
slashed within a year*


*https://www.msfaccess.org/about-us/media-room/press-releases/%E2%80%98we-demand-action%E2%80%99-death-toll-drug-resistant-tuberculosis-must-be
<https://www.msfaccess.org/about-us/media-room/press-releases/%E2%80%98we-demand-action%E2%80%99-death-toll-drug-resistant-tuberculosis-must-be>
*



*Phumeza Tisile, co-author of the DR-TB Manifesto* and XDR-TB survivor,
delivers urgent plea to World Health Assembly delegates on behalf of 50,000
supporters worldwide *


 GENEVA – May 19, 2014 – On the eve of the World Health Assembly adopting
an ambitious 20-year global plan to address tuberculosis (TB) and
drug-resistant TB (DR-TB), MSF urges governments to focus intensely on
improving DR-TB testing and care over the next 12 months. MSF is delivering
to delegates a “Test Me, Treat Me” DR-TB Manifesto, a call for action
written by DR-TB patients and caregivers to improve the dismal prognosis
that DR-TB patients face today.



“The ambitious targets set for 2035 in the global fight against TB are
welcome, but a 20-year plan can't save the lives of people dying now for
lack of proper diagnosis and treatment," said Manica Balasegaram, Executive
Director of MSF’s Access Campaign.  "Governments can't sign on the dotted
line and then sit on their hands for the next year. As a sign of their
commitment to reaching the targets in the global strategy, governments must
work diligently to slash death rates from DR-TB over the next 12 months. At
the very least, we must end the deadly wait for thousands of people
diagnosed with DR-TB who lack access to proper treatment.”



According to the World Health Organization (WHO), at least 17,000 people
known to have MDR-TB were not put on treatment in 2012, leaving these
patients to suffer, remain infectious and further lowering an already
abysmal survival rate. The number of patients diagnosed with MDR-TB,
however, is but a small fraction thought to have the disease; as many as
80% of people estimated to have MDR-TB remain undiagnosed.



Today, people with multidrug-resistant forms of tuberculosis - strains that
have developed resistance to the most powerful anti-TB drugs - face an
intolerable prognosis: either die without treatment, or endure a tortuous
and expensive two-year treatment regimen that cures only about half of
people.



More than 800 DR-TB patients and 1,500 caregivers are among the over 50,000
who joined the year-long “Test Me, Treat Me” DR-TB Manifesto campaign,
which gives voice to intolerable patient suffering and demands radical
improvements in DR-TB survival rates.



“During my three-year ordeal battling extensively drug-resistant TB
(XDR-TB), I saw more friends die of this horrible disease than any person
should have to,” said Phumeza Tisile, co-author of the DR-TB Manifesto and
TB advocate.  “I’m here in Geneva on behalf of every person affected by
DR-TB, including those who lost their lives, with a clear demand for
Ministries of Health: we demand action, we demand accountability, we demand
a better chance at survival. Do everything in your power because we can’t
wait any longer for change to happen.”



The DR-TB Manifesto lays out three demands from patients and their
caregivers: universal access to testing and treatment, which will require
governments to scale up DR-TB programmes; better treatment regimens to
drastically improve cure rates; and full funding for these efforts.



Governments can take steps now to improve people’s chances of completing
treatment and surviving the disease.  For example, a shorter treatment
regimen that is easier for patients, especially migrant populations, to
tolerate – nine months instead of 24 months – can be used in some settings
in line with WHO recommendations.  Governments should urgently enable
“compassionate use” of promising new TB drugs for patients who’ve exhausted
all other treatment options, and should urge pharmaceutical companies to
register new and repurposed TB drugs in all endemic countries.  And as
MSF's experience and other evidence supports, providing decentralized care,
at patients’ homes or within the community, reduces waiting lists, avoids
unnecessary or long hospital stays and allows people to remain at home
during treatment.



New shorter, more effective, tolerable and affordable regimens containing
new drugs are desperately needed to treat TB so that it can be controlled
as a curable disease that no longer kills. For that, new funding and new
research and development (R&D) models which de-link the cost of R&D from
the product price should be developed and implemented.



- ends -



*MSF has been treating TB for more than 30 years, and in recent years has
witnessed an alarming rise in DR-TB in our clinics. MSF is now one of the
largest NGO treatment providers of TB, caring for almost 30,000 patients
each year, including almost about 1,800 with DR-TB, in 21 countries around
the world.  *



** Background on Phumeza Tisile and the “Test Me, Treat Me” DR-TB Manifesto
Campaign*

*In 2013, 23-year-old Phumeza Tisile was still undergoing grueling
treatment for drug-resistant TB.  Appalled at the dismal options available
to fight this deadly disease, Phumeza and her MSF doctor, Jennifer Hughes,
were inspired to write the “Test Me, Treat Me” DR-TB Manifesto, and the MSF
campaign around it was launched on World TB Day in 2013.  This public
declaration, made on behalf of all people with drug-resistant tuberculosis
and their medical care providers, calls for urgent improvements in DR-TB
diagnosis and care.  More than 800 DR-TB patients and 1,500 caregivers are
among the over 50,000 who joined the year-long “Test Me, Treat Me” DR-TB
Manifesto campaign, which gives voice to intolerable patient suffering and
demands radical improvements in DR-TB survival rates.  Read the DR-TB
Manifesto at https://www.msfaccess.org/TBmanifesto/
<https://www.msfaccess.org/TBmanifesto/>.*



*After three years of intensive treatment for extensively drug-resistant TB
(XDR-TB), Phumeza is finally cured and able to rebuild her life. But she
had to take more than 20,000 pills to get there and, as a result of the
toxic treatments, permanently lost her hearing. She is one of only 13% of
XDR-TB patients worldwide to beat this form of the disease. *



Joanna Keenan
Press Officer
Médecins Sans Frontières - Access Campaign
P: +41 22 849 87 45
M: +41 79 203 13 02
E: joanna.keenan[at]geneva.msf.org
T: @joanna_keenan

msfaccess.org
twitter.com/MSF_access
facebook.com/MSFaccess

Please sign MSF’s DR-TB Manifesto today: www.msfaccess.org/TBManifesto



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