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NO MORE
CRYING,
NO MORE
DYING.
Towards
zero TB
deaths in
children.
Fast facts
on childhood TB



– Tuberculosis (TB) is often not considered
 as a possible diagnosis and therefore
 goes undetected in children. This has
 made it difficult to assess the scope of
 the childhood TB epidemic.1


– At least half a million children become
 ill with TB each year. 2


–  ach year as many as 70 000 3 children
  E
 die of TB - a curable disease that today
 should never take the life of a child.


–  hildren under 3 years of age and those
  C
 with severe malnutrition or compromised
 immune systems are at greatest risk for
 developing TB.


–  B most commonly affects the lungs,
  T
 but in 20% to 30% of cases in children
 it affects a different part of the body.
 Infants and young children are at special
 risk of having severe, often fatal forms
 of TB, such as TB meningitis, which
 can leave them blind, deaf, paralyzed
 or mentally disabled.


–  n 2010 there were some 10 million
  I
 children orphaned by the death of
 a parent from TB.


– Children are just as vulnerable as adults
 to developing—or becoming infected
 with—drug-resistant forms of TB that
 require a lengthy, costly treatment with
 often severe side effects.
NO MORE
                                                                                    CRYING,
                                                                                    NO MORE
                                                                                    DYING.
                                                                                    Towards
                                                                                    zero TB
                                                                                    deaths in
                                                                                    children




Imagine

being the parent of a child with tuberculosis (TB.)



Probably your child has been feverish and losing       You will soon find out the medicines don’t come
weight. Maybe she is coughing, and the cough           in the form of a syrup or chewable tablets. You
is getting worse. She is constantly tired and          will need to crush up the pills or encourage her
unable to play with friends as before. She             to swallow them whole and find ways to help
cannot understand what is happening to her.            her to complete the treatment. It won’t be easy,
                                                       but you will have to do it. If all goes well she
They tell you at the clinic that she needs a TB        should be cured, but without proper treatment,
test. This is not a simple matter. There is not a      TB often kills.
simple, painless test for TB in children.  A doctor
needs to insert a tube down her throat and then        Imagine too how you feel knowing that your
inject liquid in order to get a sample to test. This   child is going through this ordeal because she
is frightening and painful for your daughter.          caught TB from you. The vast majority of chil-
                                                       dren with TB become ill through being infected
When the test comes back positive, you find            by a parent.
out she will have to take four different medicines
over six months.                                       Hundreds of thousands of mothers and fathers
                                                       face this situation every year if they are fortunate
                                                       enough to have access to diagnostic facilities
                                                       and TB drugs for children. In many places
                                                       children with TB have nowhere to go.




Towa r d s ze r o TB d e at h s i n c h ild r e n                                                         1
Why has
    childhood TB been
    so neglected?

    Until very recently childhood TB has not been       The challenge of diagnosing childhood TB has
    a priority in public health and has remained es-    created a cycle of neglect, where insufficient
    sentially a hidden pandemic.4                       awareness of the magnitude of the problem
                                                        engenders a lack of public attention and funding.
    All too often TB goes undiagnosed in                In addition myths about childhood TB abound.
    children. While high-income countries now           It is widely, and incorrectly, believed that all
    use sophisticated molecular tests to detect TB,     children with suspected TB need specialty care
    most developing countries still use the method      or expensive tests that are not available to all
    developed 130 years ago. The patient must           populations in the most heavily affected coun-
    cough up a sample of sputum, which is then          tries; and that TB treatment is more complicated
    checked under the microscope for the bacteria       or has more side effects in children, especially
    that cause TB. Young children generally are         young children.
    unable to produce a sample. Even if a child
    with active TB succeeds in providing a sample,
    it often contains no detectable bacteria.
    Compounding difficulties with diagnosis is the
    fact that children with TB have families that are
    poor, lack knowledge about the disease and
    live in communities with limited access
    to health care.




2   Towa r d s ze r o TB d e at h s i n c h ild r e n
22 high TB-burden countries


Afghanistan                 Myanmar

Bangladesh                  Nigeria

Brazil                      Pakistan

Cambodia                    Philippines

China                       Russian Federation

Democratic Republic         South Africa
of the Congo
                            United Republic
Ethiopia                    of Tanzania

India                       Thailand

Indonesia                   Uganda

Kenya                       Viet Nam

Mozambique                  Zimbabwe




To move towards
zero TB deaths in
children

Children with TB usually respond well to TB             Reach out to find all people affected by TB.         treatment, they should begin antiretroviral
treatment and tolerate TB drugs very well—but           Every year, some 3 million people affected by        therapy (ART). Children who do not have active
first their illness has to be detected. The World       TB are not diagnosed and treated according to        TB should immediately be started on preventive
Health Organization (WHO) and the Stop TB               international recommendations. Most are in the       therapy with isoniazid, simultaneously with ART.
Partnership are calling on all public health            world’s most vulnerable groups: not just children
programmes and health care providers to trans-          but also adults living in remote rural areas         Integrate maternal and child health
form their approach to case finding—so that all         or urban slums, migrant workers, displaced           services, HIV care and TB care into a
infants and children with TB get high-quality care      persons, prisoners and ethnic minorities. Many       seamless package. Every country seek-
and the world can move towards zero TB deaths           studies have shown that all those people could       ing to prevent deaths from TB among children
among children. Here is what we need to do.             be receiving proper care—but only if there are       living with HIV needs bold political leadership to
                                                        efforts to actively look for people sick with TB     integrate health services for women and children
Start viewing childhood TB as a “family”                in communities known to be at risk, and assist       at every level through carefully developed and
illness. Most children who become ill with TB           them in getting access to diagnosis and care.        fully funded programmes. All pregnant women
have been infected by an adult—be it a parent           Only by reaching out to help all people with TB      who are living with HIV should be examined for
or another person in the household. Any case            will we find all affected infants and children.      signs and symptoms of TB and provided with
of TB should prompt a careful assessment of                                                                  treatment if needed or preventive treatment with
the whole family’s TB risk. Children showing            Prioritize outreach in children living               isoniazid. At every visit, babies and children who
typical signs and symptoms of TB for their age          with HIV. Active outreach is especially critical     are malnourished or living with HIV should be
group and who live with a person who has TB—            in countries where HIV and TB are prevalent.         checked for TB signs and symptoms. Making
regardless of whether a definitive diagnostic test      In those settings screening programmes should        TB prevention and care an integral part of
is available - should be treated for TB. If there are   provide testing for both infections to all infants   prevention of mother-to-child transmission
no signs of illness, the child should be protected      and children. Those who test positive for HIV        of HIV, prenatal care, family planning and
against TB with a six-month course of preventive        should be tested for TB, and if TB diagnosis is      immunization services will prevent millions of
treatment. Such protection is cheap and simple          confirmed then TB treatment should be started        unnecessary deaths among pregnant women
—a daily dose of a drug called isoniazid.               immediately. After two to eight weeks on TB          and their children.



                                                        Towa r d s ze r o TB d e at h s i n c h ild r e n                                                     3
4   Towa r d s ze r o TB d e at h s i n c h ild r e n
Reaching for zero at                                                                                   Focus on TB
the community level                                                                                    and Pregnancy

An increasing number of studies are finding        Another study, conducted in Karachi, Pakistan       More than half a million women of
simple solutions for finding and treating more     in 2011, engaged community members to               child-bearing age die from TB (including
children affected by TB. In Bangladesh, in 2007,   help find TB cases, while also running a mass       HIV-related TB) each year. The death of
researchers from the Damien Foundation set out     education campaign on the symptoms of TB.6          a mother leaves her child vulnerable to
to determine whether raising awareness about       The screeners used electronic scorecards on         premature death.
the risk of childhood TB among health workers      mobile phones to assess whether people in
and teaching them to use a scoring card for        their community should seek a TB test; and          Women living with HIV are highly
TB symptoms would increase detection of            then accompanied patients to the hospital or        susceptible to developing TB disease
childhood TB.5                                     clinic. Each time screeners were successful in      during pregnancy or soon after delivery.
                                                   helping a person with TB reach diagnosis and
The study compared childhood TB detection          care they received a cash incentive. One result     TB is a leading infectious cause of death
rates in 18 community health centres where         was a 600% increase in detection of pulmonary       during pregnancy and delivery, especially
health workers received training on childhood      tuberculosis among children.                        among women living with HIV.
TB with detection rates in 18 comparable
centres where no special training was provided.                                                        TB during pregnancy creates a high risk
The result: the number of childhood TB cases                                                           that babies will be born prematurely or
detected more than trebled in the centres                                                              have low birth weight.
staffed by the newly trained health workers.
                                                                                                       TB during pregnancy increases the risk
                                                                                                       of transmission of HIV to the baby.




                                                   Towa r d s ze r o TB d e at h s i n c h ild r e n                                               5
Our
children’s
future:
Why we
need better
diagnostic
methods,
drugs and
a vaccine




Diagnostics                                         Drugs                                                  Vaccine

Where we are: Diagnosis is mostly done by           Where we are: TB treatment requires taking             Where we are: The current vaccine for TB, the
microscopy, which is an inadequate test for TB      a mix of three to four different drugs over six        Bacillus Calmette-Guérin (BCG), was discovered
in children. New rapid molecular tests, that are    months; for multidrug-resistant TB, at least           in the 1920s and offers only limited protection
far more sensitive for detecting TB in children,    18 months of treatment with combination of             against severe forms of TB in young children but
are now becoming available, but the technology      even more drugs, including at least 6 months           does not create lifelong protection. It is unsafe
is costly and needs further testing. In addition,   of injections that can have severe side effects.       for use in children living with HIV.
the traditional method of obtaining samples from    Currently all available formulations are in the form
children by inserting a tube down their nose or     of tablets that have to be crushed or swallowed        What we need: A fully effective vaccine that
mouth is not ideal and may require an overnight     whole—not an easy task for many children.              protects children (and adults), including those
stay in a hospital.                                                                                        living with HIV, against all forms of TB.
                                                    What we need: In the immediate future, child-
What we need: Cheap and rapid tests for TB          friendly formulations; and within ten years, new
that can detect active TB disease through a         drugs and regimens with shorter treatment time.
marker present in blood or urine and can be
used in any health facility.




 6                                                  Towa r d s ze r o TB d e at h s i n c h ild r e n
Global
spending
on research
and
Development
of new TB
diagnostics
                                                                                                 THE SEARCH FOR
                                                                                                 A QUICK TB TEST

                                                                                                 The lack of a simple-to-use, inexpensive TB test
                                                                                                 is a serious barrier to reaching all children who
                                                                                                 need TB treatment. The quest to find such a test
                                                                                                 is on, but current funding is far too low.




$ 44 566 101
Total funds made available
in 2010 (US dollars)
                       $ 340 000 000
                       2010 target for spending on
                       diagnostic research in the Global
                       Plan to Stop TB (US dollars)




                                   $ 1.7 billion
                                   Total spending needed to meet the
                                   targets for new diagnostics of the
                                   Global Plan to Stop TB between 2011
                                   and 2015 ( US dollars)




                                             Towa r d s ze r o TB d e at h s i n c h ild r e n                                                   7
Statements
of
support
on TB


             Ban Ki-moon                                                                      Dr Mario Raviglione
             United Nations Secretary-General                                                 Director, Stop TB Department, WHO


             Tuberculosis is a silent killer. We must raise the                               TB is a preventable and curable disease, but ev-
             volume. TB hits poor, vulnerable and voiceless                                   ery year half a million children suffer from TB and
             families. It takes the lives of tens of thousands                                thousands lose their lives. In 2010, there were
             of children every year and has struck down so                                    ten million orphans due to parental TB deaths
             many mothers and fathers. Millions of children                                   worldwide. Progress on addressing this epi-
             are orphans because a parent died of TB. In                                      demic in children has been pitifully slow. There is
             these hard times, let us work even harder in the                                 an urgent need for the global health community
             global fight against TB. We have the means to                                    to step up commitment and take concerted
             end these needless deaths. Let us act now.                                       action towards ensuring that “not even one child
                                                                                              dies from TB”. We must jointly accelerate efforts
             DR Jorge Sampaio                                                                 and invest all our energy to free the world from
             UN Secretary-General’s Special Envoy to                                          TB in children. WHO is committed to guiding
             Stop TB and former President of Portugal                                         these efforts.


             Every time I visit a country heavily affected by                                 Blessina Kumar
             tuberculosis (TB) and look into the bright young                                 Vice-Chair of the Stop TB Partnership
             faces of its children I feel a renewed sense of                                  Coordinating Board and representative
             purpose in my role as the UN Secretary-General’s                                 for communities affected by TB
             Special Envoy to Stop TB. These children
             represent our future, but that future is dimmed by                               TB is killing one child every 5 minutes! We do
             the menace of TB. We can’t fully protect children                                not see them affected but their ashes swirl all
             against becoming ill with TB. But reaching every                                 around us. How long will we use the usual
             child who needs it with high-quality treatment, we                               argument that TB is different and continue to
             can prevent the unthinkable—the loss of the life of                              turn a blind eye. The success we have had fight-
             a child to TB, a curable illness. I call on the world’s                          ing polio in India shows that when all players and
             leaders to commit to reaching the goal of zero TB                                stakeholders make a real effort we can put an
             deaths in children in the next five years.                                       end to unnecessary suffering and loss of lives.
                                                                                              Now we must turn our eyes to TB and eradicate
             Rachel Orduño                                                                    it. I am asking for a band of dedicated people to
             Patient Advocate                                                                 join me to call for 100% commitment to make
                                                                                              ‘Getting to ZERO’ a reality.
             For three agonizing years, I was misdiagnosed
             with flu, colds, allergies, respiratory infections,
             pneumonia, and asthma. My 3-year-old niece
             also suffered through surgeries to remove
             a recurring cyst. Only after I was correctly
             diagnosed, was her removed tissue tested and
             found positive for TB. We both started the daily
             medication treatment for active TB disease and
             five other family members took the preventive,
             twice-weekly dosing to neutralize the infection.
             I am living proof that TB is preventable, treatable
             and curable. But unless more is done to diag-
             nose and treat men, women and children quickly
             and accurately, millions of lives will be lost.



8                                         Towa r d s ze r o TB d e at h s i n c h ild r e n
Dr Lucica Ditiu                                                                 DR Denis Broun
Executive Secretary, Stop TB Partnership                                        Executive Director, UNITAID


I wish to send a message to mothers every-                                      TB is a curable disease that continues to kill,
where. We have all gone thorough difficult nights                               largely due to the lack of innovation in TB treat-
when our children are sick and cannot sleep                                     ment and low demand in markets. As in other
because they are feverish and coughing. They                                    disease areas, children’s treatment needs for
toss and turn in their beds and we feel desperate                               TB have been under-recognized. And yet, the
and helpless. Imagine your child is in this state                               impact of TB in children is real and devastating,
because he or she has TB. Imagine the child                                     with half a million children needing treatment
coughing and coughing and crying—and this                                       today. To address this gap, UNITAID has cata-
goes on and on for weeks and weeks. TB should                                   lyzed the development of a market for quality-as-
not make any child suffer or die. We know how                                   sured paediatric products by providing close to
to cure TB and we know how to prevent it, and                                   US $10 million for the supply of over one million
both are cheap interventions. Any child dying of                                treatments and by investing in the WHO Prequal-
TB in the year 2012 is an affront to our civiliza-                              ification Programme. But more action is required
tion. Children do not have the power to speak for                               to make child-friendly TB medicines available
themselves or push for action. We all have to do                                to all children in need, at low cost and supplied
it! Otherwise, none of us can look our children                                 faster. UNITAID is taking the lead in developing
in the eyes.                                                                    tools to measure the need for products and the
                                                                                market shortcomings for paediatric diagnostics
Dr Steve Graham                                                                 and medicines so as to boost targeted action
Associate Professor of International                                            and better support all stakeholders working to
Child Health, University of Melbourne,                                          increase children’s access to the products they
Australia and Chair of the Childhood TB                                         need and to which they have a right.
sub-group of the Stop TB Partnership’s
DOTS Expansion Working Group
                                                                                Dr Carole Presern
It is very encouraging that TB in children is                                   Director of the Partnership for Maternal,
gaining recognition as an important public                                      Newborn  Child Health
health challenge worthy of far greater attention,
and this change positions us to address issues                                  When pregnant women become sick with TB
that have languished up until now. First, we have                               there is a strong chance they will die during
interventions that can prevent TB deaths in                                     childbirth. The risks to their children are equally
children—but many countries are not using                                       severe. Some might be premature; others are at
them in practice. That has to change. Second,                                   greater risk of low birth weight and subsequent
we must ensure that children are included in                                    mortality. In addition, mothers living with HIV
crucial research to develop new and better                                      who have TB are more likely to transmit HIV to
diagnostic tests and drugs for TB.                                              their babies. If we are to achieve the Millennium
                                                                                Development Goals we must act now.




                            Towa r d s ze r o TB d e at h s i n c h ild r e n                                                     9
Fighting
childhood TB
at national- and
community-levels
What different
players need
to do




          National                                               Health workers in                                    HIV programmes
          TB programmes                                          the private sector                                   and centres

–  evelop childhood TB guidelines and
  D                                                 –  earn about TB and follow the government
                                                      L                                                     – Train staff on TB prevention, diagnosis and
                                                                                                              
 make diagnosis and treatment of childhood            guidelines for prevention, diagnosis and               treatment and ensure they understand these
 TB a priority                                        treatment                                              are priorities for saving lives

–  valuate all children who have been in contact
  E                                                 –  eport to the national TB programme each
                                                      R                                                     –  reate strong links with maternal and
                                                                                                              C
 with adult TB patients to determine if they need     child diagnosed with TB                                child health programmes and the national
 treatment for active TB or preventive treatment                                                             TB programme
 with isoniazid
                                                                                                            –  outinely evaluate all pregnant women for
                                                                                                              R
                                                                 Health centres
–  rain all health workers to recognize TB
  T                                                                                                          TB risk as part of prevention of mother-to-child
                                                                 providing prenatal
 symptoms in children; ask about contact with                                                                transmission services
                                                                 and obstetric care
 people affected by TB at each visit and take a
                                                                                                            –  nsure children with HIV are routinely screened
                                                                                                              E
 family-based approach to evaluating TB risk        –  valuate every pregnant woman for TB risk
                                                      E
                                                                                                             for TB as part of standard clinical care
                                                      and provide needed referral or treatment
–  ffer HIV testing in the context of TB care
  O
                                                                                                            –  rovide preventive treatment with isoniazid to
                                                                                                              P
                                                    –  rovide preventive treatment with isoniazid to
                                                      P
–  outinely record and report numbers of cases
  R                                                                                                          all patients living with HIV who are at risk of TB
                                                      all pregnant women living with HIV
 of TB in infants and children                                                                               but do not have active TB disease
                                                    –  valuate newborn infants for TB as soon as
                                                      E
–  onduct research aimed at finding the most
  C
                                                      possible after birth if the mother had TB during
 effective ways to improve and build childhood
                                                      pregnancy
 TB programmes
                                                                                                                      People in TB-affected
                                                    –  iaise with the national TB programme
                                                      L
                                                                                                                      communities

                                                                                                            –  eek prompt medical attention for any child
                                                                                                              S
          Health workers who                                                                                 or adult who has TB symptoms
          care for sick children                                 Immunization
                                                                                                            –  ring any child who has been in contact with
                                                                                                              B
                                                                 services
–  tay alert to symptoms typical of TB and
  S                                                                                                          a person sick with TB to a health centre for
 make needed referrals                              –  valuate HIV-infected and malnourished
                                                      E                                                      TB testing
                                                      children for TB signs and symptoms at
                                                      every opportunity

                                                    – f TB is suspected, refer the child to the national
                                                      I
                                                      TB programme




10                                                  Towa r d s ze r o TB d e at h s i n c h ild r e n
Towa r d s ze r o TB d e at h s i n c h ild r e n   11
roadmap
Towards
zero TB
deaths in
children



2015                                                  2020
All national TB programmes and linked health          A quick inexpensive “point of care”
centres implement the actions on childhood            TB test that provides accurate diagnosis
TB outlined on page 10                                in children available worldwide


All HIV centres evaluate pregnant women and           Shorter, child-friendly TB treatment and
their infants for TB risk                             preventive treatment available worldwide


All research studies on new TB diagnostics and        A new vaccine able to prevent TB infection
drugs include pregnant women and children             and disease in children and adults is on
among participants                                    the market


More accurate estimates of the number
of TB cases and deaths among children
available for all countries


Funding for research on TB diagnostics, drugs
and vaccines increase to a total of US$ 2.5 billion
dollars per year, as called for in the Global Plan
to Stop TB 7




12                                                    Towa r d s ze r o TB d e at h s i n c h ild r e n
TAKE ACTION
AGAINST
CHILDHOOD TB



Sign the Call to Action. In March 2011,
experts on childhood TB from around the
world gathered in Stockholm, Sweden to
develop a roadmap for addressing childhood
TB with the goal of reaching zero TB deaths
in children. Together they launched a Call to
Action for Childhood TB 8


Please add your voice to the Call at:
www.stoptb.org/getinvolved/ctb_cta.asp


Donate now to the Stop TB Partnership.
Our TB REACH projects are using innovative
approaches to finding, diagnosing and curing
more children with TB. For more information,
link to www.stoptb.org/getinvolved/donate.asp


To find out more about TB, visit:


WHO Stop TB Department
www.who.int/tb/en/


Stop TB Partnership
www.stoptb.org

                                                		Note

                                                     Nelson LJ and Wells CD, Global epidemiology of
                                                	 1 	
                                                     childhood tuberculosis. Int J Tuberc Lung Dis, 2004,
                                                     8(5): 636-647

                                                	2,3 	
                                                      The World Health Organization is preparing new
                                                      estimates that will be released later in 2012.

                                                     Children and Tuberculosis: Exposing a Hidden
                                                	 4 	
                                                     Epidemic, 2011, Action Project, http://c1280352.r52.
                                                     cf0.rackcdn.com/childrens_tb_0811v2.pdf

                                                	 5 	 Talukder et al, Intervention to increase detection
                                                     K.
                                                     of childhood tuberculosis in Bangladesh. Int J Tuberc
                                                     Lung Dis, 2012, 16(1): 70-75

                                                     Khan A et al, Engaging the private sector to increase
                                                	 6 	
                                                     tuberculosis case detection: an impact study,
                                                     in press 2012

                                                	 7 	  lobal Plan to Stop TB 2011-2015, 2010, Stop TB
                                                      G
                                                      Partnership, http://www.stoptb.org/global/plan/

                                                	 8 	 C hildhood Tuberculosis: Progress Requires Advocacy
                                                       Strategy Now. Sandgren A, ERJ, 2012 (In press)




                                                The designations employed and the presentation of the
                                                material in this publication do not imply the expression of
                                                any opinion whatsoever on the part of the World Health
                                                Organization concerning the legal status of any country,
                                                territory, city or area or of its authorities, or concerning the
                                                delimitation of its frontiers or boundaries. Dotted lines on
                                                maps represent approximate border lines for which there
                                                may not yet be full agreement.
WHAT IS TB?

Tuberculosis (TB) has affected people all over     Extensively drug-resistant TB (XDR-TB) can
the world for millennia.                           develop when people can’t or don’t take all
                                                   treatment with these second-line drugs.
TB is infectious and spreads from person to        XDR-TB is virtually untreatable.
person through the air. When people with
infectious TB cough, sneeze or spit, they propel   Both MDR- and XDR-TB can spread from person
the germs that cause TB into the air. A person     to person. The best way to stop emergence of
needs to inhale only a few of these germs to       drug resistance is to ensure that every person
become infected. TB can infect any part of the     with TB has access to accurate diagnosis,
body, but most often it attacks the lungs.         effective treatment and a cure.


One third of the world’s population has latent     People living with HIV are 20 to 30 times more
TB, which means they have been infected by TB      likely to develop TB than people free of HIV
without being infectious to others. Even when a    infection. Without treatment, the vast majority of
person develops active disease, the symptoms       people living with HIV who are sick with TB will
may be mild for many months, which leads to        die within a few months. TB is responsible for
delays in diagnosis and treatment and spread       one in four AIDS deaths.
of the disease to others.
                                                   People with TB often suffer from discrimination
Most people with TB can be cured by taking         and stigma, rejection and social isolation. It mainly
a six-month course of drugs costing about          strikes people living in poverty since conditions
US $25. When people can’t or don’t take all        such as malnutrition, overcrowding, poor
their treatment, TB bacilli become resistant to    ventilation and exposure to indoor smoke create
them and multidrug-resistant TB (MDR-TB)           high risk for the disease. And TB is a major cause
can develop. MDR-TB takes longer to treat and      of poverty because affected people are often too
can only be cured with second-line drugs, which    sick to work, and they and their families may have
are up to 1000 times more expensive and have       to pay for treatment. All too often children who are
more side effects.                                 sick with TB or have a parent sick with TB lose
                                                   educational and future economic opportunities.




                                                                                                                         Stop TB Partnership
                                                                                                                             www.stoptb.org

                                                                                                                   World Health Organization
                                                                                                                        Stop TB Department
                                                                                                                              www.who.int/tb

                                                                                                                           20, Avenue Appia
                                                                                                                         CH-1211 Geneva 27

                                                                                                             © World Health Organization 2012

                                                                                                                              Printed by the
                                                                                                           WHO Document Production Services,
                                                                                                                        Geneva, Switzerland

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Stopping Childhood TB: Towards Zero Deaths

  • 2. Fast facts on childhood TB – Tuberculosis (TB) is often not considered as a possible diagnosis and therefore goes undetected in children. This has made it difficult to assess the scope of the childhood TB epidemic.1 – At least half a million children become ill with TB each year. 2 – ach year as many as 70 000 3 children E die of TB - a curable disease that today should never take the life of a child. – hildren under 3 years of age and those C with severe malnutrition or compromised immune systems are at greatest risk for developing TB. – B most commonly affects the lungs, T but in 20% to 30% of cases in children it affects a different part of the body. Infants and young children are at special risk of having severe, often fatal forms of TB, such as TB meningitis, which can leave them blind, deaf, paralyzed or mentally disabled. – n 2010 there were some 10 million I children orphaned by the death of a parent from TB. – Children are just as vulnerable as adults to developing—or becoming infected with—drug-resistant forms of TB that require a lengthy, costly treatment with often severe side effects.
  • 3. NO MORE CRYING, NO MORE DYING. Towards zero TB deaths in children Imagine
 being the parent of a child with tuberculosis (TB.) Probably your child has been feverish and losing You will soon find out the medicines don’t come weight. Maybe she is coughing, and the cough in the form of a syrup or chewable tablets. You is getting worse. She is constantly tired and will need to crush up the pills or encourage her unable to play with friends as before. She to swallow them whole and find ways to help cannot understand what is happening to her. her to complete the treatment. It won’t be easy, but you will have to do it. If all goes well she They tell you at the clinic that she needs a TB should be cured, but without proper treatment, test. This is not a simple matter. There is not a TB often kills. simple, painless test for TB in children.  A doctor needs to insert a tube down her throat and then Imagine too how you feel knowing that your inject liquid in order to get a sample to test. This child is going through this ordeal because she is frightening and painful for your daughter. caught TB from you. The vast majority of chil- dren with TB become ill through being infected When the test comes back positive, you find by a parent. out she will have to take four different medicines over six months. Hundreds of thousands of mothers and fathers face this situation every year if they are fortunate enough to have access to diagnostic facilities and TB drugs for children. In many places children with TB have nowhere to go. Towa r d s ze r o TB d e at h s i n c h ild r e n 1
  • 4. Why has childhood TB been so neglected? Until very recently childhood TB has not been The challenge of diagnosing childhood TB has a priority in public health and has remained es- created a cycle of neglect, where insufficient sentially a hidden pandemic.4 awareness of the magnitude of the problem engenders a lack of public attention and funding. All too often TB goes undiagnosed in In addition myths about childhood TB abound. children. While high-income countries now It is widely, and incorrectly, believed that all use sophisticated molecular tests to detect TB, children with suspected TB need specialty care most developing countries still use the method or expensive tests that are not available to all developed 130 years ago. The patient must populations in the most heavily affected coun- cough up a sample of sputum, which is then tries; and that TB treatment is more complicated checked under the microscope for the bacteria or has more side effects in children, especially that cause TB. Young children generally are young children. unable to produce a sample. Even if a child with active TB succeeds in providing a sample, it often contains no detectable bacteria. Compounding difficulties with diagnosis is the fact that children with TB have families that are poor, lack knowledge about the disease and live in communities with limited access to health care. 2 Towa r d s ze r o TB d e at h s i n c h ild r e n
  • 5. 22 high TB-burden countries Afghanistan Myanmar Bangladesh Nigeria Brazil Pakistan Cambodia Philippines China Russian Federation Democratic Republic South Africa of the Congo United Republic Ethiopia of Tanzania India Thailand Indonesia Uganda Kenya Viet Nam Mozambique Zimbabwe To move towards zero TB deaths in children Children with TB usually respond well to TB Reach out to find all people affected by TB. treatment, they should begin antiretroviral treatment and tolerate TB drugs very well—but Every year, some 3 million people affected by therapy (ART). Children who do not have active first their illness has to be detected. The World TB are not diagnosed and treated according to TB should immediately be started on preventive Health Organization (WHO) and the Stop TB international recommendations. Most are in the therapy with isoniazid, simultaneously with ART. Partnership are calling on all public health world’s most vulnerable groups: not just children programmes and health care providers to trans- but also adults living in remote rural areas Integrate maternal and child health form their approach to case finding—so that all or urban slums, migrant workers, displaced services, HIV care and TB care into a infants and children with TB get high-quality care persons, prisoners and ethnic minorities. Many seamless package. Every country seek- and the world can move towards zero TB deaths studies have shown that all those people could ing to prevent deaths from TB among children among children. Here is what we need to do. be receiving proper care—but only if there are living with HIV needs bold political leadership to efforts to actively look for people sick with TB integrate health services for women and children Start viewing childhood TB as a “family” in communities known to be at risk, and assist at every level through carefully developed and illness. Most children who become ill with TB them in getting access to diagnosis and care. fully funded programmes. All pregnant women have been infected by an adult—be it a parent Only by reaching out to help all people with TB who are living with HIV should be examined for or another person in the household. Any case will we find all affected infants and children. signs and symptoms of TB and provided with of TB should prompt a careful assessment of treatment if needed or preventive treatment with the whole family’s TB risk. Children showing Prioritize outreach in children living isoniazid. At every visit, babies and children who typical signs and symptoms of TB for their age with HIV. Active outreach is especially critical are malnourished or living with HIV should be group and who live with a person who has TB— in countries where HIV and TB are prevalent. checked for TB signs and symptoms. Making regardless of whether a definitive diagnostic test In those settings screening programmes should TB prevention and care an integral part of is available - should be treated for TB. If there are provide testing for both infections to all infants prevention of mother-to-child transmission no signs of illness, the child should be protected and children. Those who test positive for HIV of HIV, prenatal care, family planning and against TB with a six-month course of preventive should be tested for TB, and if TB diagnosis is immunization services will prevent millions of treatment. Such protection is cheap and simple confirmed then TB treatment should be started unnecessary deaths among pregnant women —a daily dose of a drug called isoniazid. immediately. After two to eight weeks on TB and their children. Towa r d s ze r o TB d e at h s i n c h ild r e n 3
  • 6. 4 Towa r d s ze r o TB d e at h s i n c h ild r e n
  • 7. Reaching for zero at Focus on TB the community level and Pregnancy An increasing number of studies are finding Another study, conducted in Karachi, Pakistan More than half a million women of simple solutions for finding and treating more in 2011, engaged community members to child-bearing age die from TB (including children affected by TB. In Bangladesh, in 2007, help find TB cases, while also running a mass HIV-related TB) each year. The death of researchers from the Damien Foundation set out education campaign on the symptoms of TB.6 a mother leaves her child vulnerable to to determine whether raising awareness about The screeners used electronic scorecards on premature death. the risk of childhood TB among health workers mobile phones to assess whether people in and teaching them to use a scoring card for their community should seek a TB test; and Women living with HIV are highly TB symptoms would increase detection of then accompanied patients to the hospital or susceptible to developing TB disease childhood TB.5 clinic. Each time screeners were successful in during pregnancy or soon after delivery. helping a person with TB reach diagnosis and The study compared childhood TB detection care they received a cash incentive. One result TB is a leading infectious cause of death rates in 18 community health centres where was a 600% increase in detection of pulmonary during pregnancy and delivery, especially health workers received training on childhood tuberculosis among children. among women living with HIV. TB with detection rates in 18 comparable centres where no special training was provided. TB during pregnancy creates a high risk The result: the number of childhood TB cases that babies will be born prematurely or detected more than trebled in the centres have low birth weight. staffed by the newly trained health workers. TB during pregnancy increases the risk of transmission of HIV to the baby. Towa r d s ze r o TB d e at h s i n c h ild r e n 5
  • 8. Our children’s future: Why we need better diagnostic methods, drugs and a vaccine Diagnostics Drugs Vaccine Where we are: Diagnosis is mostly done by Where we are: TB treatment requires taking Where we are: The current vaccine for TB, the microscopy, which is an inadequate test for TB a mix of three to four different drugs over six Bacillus Calmette-GuĂ©rin (BCG), was discovered in children. New rapid molecular tests, that are months; for multidrug-resistant TB, at least in the 1920s and offers only limited protection far more sensitive for detecting TB in children, 18 months of treatment with combination of against severe forms of TB in young children but are now becoming available, but the technology even more drugs, including at least 6 months does not create lifelong protection. It is unsafe is costly and needs further testing. In addition, of injections that can have severe side effects. for use in children living with HIV. the traditional method of obtaining samples from Currently all available formulations are in the form children by inserting a tube down their nose or of tablets that have to be crushed or swallowed What we need: A fully effective vaccine that mouth is not ideal and may require an overnight whole—not an easy task for many children. protects children (and adults), including those stay in a hospital. living with HIV, against all forms of TB. What we need: In the immediate future, child- What we need: Cheap and rapid tests for TB friendly formulations; and within ten years, new that can detect active TB disease through a drugs and regimens with shorter treatment time. marker present in blood or urine and can be used in any health facility. 6 Towa r d s ze r o TB d e at h s i n c h ild r e n
  • 9. Global spending on research and Development of new TB diagnostics THE SEARCH FOR A QUICK TB TEST The lack of a simple-to-use, inexpensive TB test is a serious barrier to reaching all children who need TB treatment. The quest to find such a test is on, but current funding is far too low. $ 44 566 101 Total funds made available in 2010 (US dollars) $ 340 000 000 2010 target for spending on diagnostic research in the Global Plan to Stop TB (US dollars) $ 1.7 billion Total spending needed to meet the targets for new diagnostics of the Global Plan to Stop TB between 2011 and 2015 ( US dollars) Towa r d s ze r o TB d e at h s i n c h ild r e n 7
  • 10. Statements of support on TB Ban Ki-moon Dr Mario Raviglione United Nations Secretary-General Director, Stop TB Department, WHO Tuberculosis is a silent killer. We must raise the TB is a preventable and curable disease, but ev- volume. TB hits poor, vulnerable and voiceless ery year half a million children suffer from TB and families. It takes the lives of tens of thousands thousands lose their lives. In 2010, there were of children every year and has struck down so ten million orphans due to parental TB deaths many mothers and fathers. Millions of children worldwide. Progress on addressing this epi- are orphans because a parent died of TB. In demic in children has been pitifully slow. There is these hard times, let us work even harder in the an urgent need for the global health community global fight against TB. We have the means to to step up commitment and take concerted end these needless deaths. Let us act now. action towards ensuring that “not even one child dies from TB”. We must jointly accelerate efforts DR Jorge Sampaio and invest all our energy to free the world from UN Secretary-General’s Special Envoy to TB in children. WHO is committed to guiding Stop TB and former President of Portugal these efforts. Every time I visit a country heavily affected by Blessina Kumar tuberculosis (TB) and look into the bright young Vice-Chair of the Stop TB Partnership faces of its children I feel a renewed sense of Coordinating Board and representative purpose in my role as the UN Secretary-General’s for communities affected by TB Special Envoy to Stop TB. These children represent our future, but that future is dimmed by TB is killing one child every 5 minutes! We do the menace of TB. We can’t fully protect children not see them affected but their ashes swirl all against becoming ill with TB. But reaching every around us. How long will we use the usual child who needs it with high-quality treatment, we argument that TB is different and continue to can prevent the unthinkable—the loss of the life of turn a blind eye. The success we have had fight- a child to TB, a curable illness. I call on the world’s ing polio in India shows that when all players and leaders to commit to reaching the goal of zero TB stakeholders make a real effort we can put an deaths in children in the next five years. end to unnecessary suffering and loss of lives. Now we must turn our eyes to TB and eradicate Rachel Orduño it. I am asking for a band of dedicated people to Patient Advocate join me to call for 100% commitment to make ‘Getting to ZERO’ a reality. For three agonizing years, I was misdiagnosed with flu, colds, allergies, respiratory infections, pneumonia, and asthma. My 3-year-old niece also suffered through surgeries to remove a recurring cyst. Only after I was correctly diagnosed, was her removed tissue tested and found positive for TB. We both started the daily medication treatment for active TB disease and five other family members took the preventive, twice-weekly dosing to neutralize the infection. I am living proof that TB is preventable, treatable and curable. But unless more is done to diag- nose and treat men, women and children quickly and accurately, millions of lives will be lost. 8 Towa r d s ze r o TB d e at h s i n c h ild r e n
  • 11. Dr Lucica Ditiu DR Denis Broun Executive Secretary, Stop TB Partnership Executive Director, UNITAID I wish to send a message to mothers every- TB is a curable disease that continues to kill, where. We have all gone thorough difficult nights largely due to the lack of innovation in TB treat- when our children are sick and cannot sleep ment and low demand in markets. As in other because they are feverish and coughing. They disease areas, children’s treatment needs for toss and turn in their beds and we feel desperate TB have been under-recognized. And yet, the and helpless. Imagine your child is in this state impact of TB in children is real and devastating, because he or she has TB. Imagine the child with half a million children needing treatment coughing and coughing and crying—and this today. To address this gap, UNITAID has cata- goes on and on for weeks and weeks. TB should lyzed the development of a market for quality-as- not make any child suffer or die. We know how sured paediatric products by providing close to to cure TB and we know how to prevent it, and US $10 million for the supply of over one million both are cheap interventions. Any child dying of treatments and by investing in the WHO Prequal- TB in the year 2012 is an affront to our civiliza- ification Programme. But more action is required tion. Children do not have the power to speak for to make child-friendly TB medicines available themselves or push for action. We all have to do to all children in need, at low cost and supplied it! Otherwise, none of us can look our children faster. UNITAID is taking the lead in developing in the eyes. tools to measure the need for products and the market shortcomings for paediatric diagnostics Dr Steve Graham and medicines so as to boost targeted action Associate Professor of International and better support all stakeholders working to Child Health, University of Melbourne, increase children’s access to the products they Australia and Chair of the Childhood TB need and to which they have a right. sub-group of the Stop TB Partnership’s DOTS Expansion Working Group Dr Carole Presern It is very encouraging that TB in children is Director of the Partnership for Maternal, gaining recognition as an important public Newborn Child Health health challenge worthy of far greater attention, and this change positions us to address issues When pregnant women become sick with TB that have languished up until now. First, we have there is a strong chance they will die during interventions that can prevent TB deaths in childbirth. The risks to their children are equally children—but many countries are not using severe. Some might be premature; others are at them in practice. That has to change. Second, greater risk of low birth weight and subsequent we must ensure that children are included in mortality. In addition, mothers living with HIV crucial research to develop new and better who have TB are more likely to transmit HIV to diagnostic tests and drugs for TB. their babies. If we are to achieve the Millennium Development Goals we must act now. Towa r d s ze r o TB d e at h s i n c h ild r e n 9
  • 12. Fighting childhood TB at national- and community-levels What different players need to do National Health workers in HIV programmes TB programmes the private sector and centres – evelop childhood TB guidelines and D – earn about TB and follow the government L – Train staff on TB prevention, diagnosis and make diagnosis and treatment of childhood guidelines for prevention, diagnosis and treatment and ensure they understand these TB a priority treatment are priorities for saving lives – valuate all children who have been in contact E – eport to the national TB programme each R – reate strong links with maternal and C with adult TB patients to determine if they need child diagnosed with TB child health programmes and the national treatment for active TB or preventive treatment TB programme with isoniazid – outinely evaluate all pregnant women for R Health centres – rain all health workers to recognize TB T TB risk as part of prevention of mother-to-child providing prenatal symptoms in children; ask about contact with transmission services and obstetric care people affected by TB at each visit and take a – nsure children with HIV are routinely screened E family-based approach to evaluating TB risk – valuate every pregnant woman for TB risk E for TB as part of standard clinical care and provide needed referral or treatment – ffer HIV testing in the context of TB care O – rovide preventive treatment with isoniazid to P – rovide preventive treatment with isoniazid to P – outinely record and report numbers of cases R all patients living with HIV who are at risk of TB all pregnant women living with HIV of TB in infants and children but do not have active TB disease – valuate newborn infants for TB as soon as E – onduct research aimed at finding the most C possible after birth if the mother had TB during effective ways to improve and build childhood pregnancy TB programmes People in TB-affected – iaise with the national TB programme L communities – eek prompt medical attention for any child S Health workers who or adult who has TB symptoms care for sick children Immunization – ring any child who has been in contact with B services – tay alert to symptoms typical of TB and S a person sick with TB to a health centre for make needed referrals – valuate HIV-infected and malnourished E TB testing children for TB signs and symptoms at every opportunity – f TB is suspected, refer the child to the national I TB programme 10 Towa r d s ze r o TB d e at h s i n c h ild r e n
  • 13. Towa r d s ze r o TB d e at h s i n c h ild r e n 11
  • 14. roadmap Towards zero TB deaths in children 2015 2020 All national TB programmes and linked health A quick inexpensive “point of care” centres implement the actions on childhood TB test that provides accurate diagnosis TB outlined on page 10 in children available worldwide All HIV centres evaluate pregnant women and Shorter, child-friendly TB treatment and their infants for TB risk preventive treatment available worldwide All research studies on new TB diagnostics and A new vaccine able to prevent TB infection drugs include pregnant women and children and disease in children and adults is on among participants the market More accurate estimates of the number of TB cases and deaths among children available for all countries Funding for research on TB diagnostics, drugs and vaccines increase to a total of US$ 2.5 billion dollars per year, as called for in the Global Plan to Stop TB 7 12 Towa r d s ze r o TB d e at h s i n c h ild r e n
  • 15. TAKE ACTION AGAINST CHILDHOOD TB Sign the Call to Action. In March 2011, experts on childhood TB from around the world gathered in Stockholm, Sweden to develop a roadmap for addressing childhood TB with the goal of reaching zero TB deaths in children. Together they launched a Call to Action for Childhood TB 8 Please add your voice to the Call at: www.stoptb.org/getinvolved/ctb_cta.asp Donate now to the Stop TB Partnership. Our TB REACH projects are using innovative approaches to finding, diagnosing and curing more children with TB. For more information, link to www.stoptb.org/getinvolved/donate.asp To find out more about TB, visit: WHO Stop TB Department www.who.int/tb/en/ Stop TB Partnership www.stoptb.org Note Nelson LJ and Wells CD, Global epidemiology of 1 childhood tuberculosis. Int J Tuberc Lung Dis, 2004, 8(5): 636-647 2,3 The World Health Organization is preparing new estimates that will be released later in 2012. Children and Tuberculosis: Exposing a Hidden 4 Epidemic, 2011, Action Project, http://c1280352.r52. cf0.rackcdn.com/childrens_tb_0811v2.pdf 5 Talukder et al, Intervention to increase detection K. of childhood tuberculosis in Bangladesh. Int J Tuberc Lung Dis, 2012, 16(1): 70-75 Khan A et al, Engaging the private sector to increase 6 tuberculosis case detection: an impact study, in press 2012 7 lobal Plan to Stop TB 2011-2015, 2010, Stop TB G Partnership, http://www.stoptb.org/global/plan/ 8 C hildhood Tuberculosis: Progress Requires Advocacy Strategy Now. Sandgren A, ERJ, 2012 (In press) The designations employed and the presentation of the material in this publication do not imply the expression of any opinion whatsoever on the part of the World Health Organization concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers or boundaries. Dotted lines on maps represent approximate border lines for which there may not yet be full agreement.
  • 16. WHAT IS TB? Tuberculosis (TB) has affected people all over Extensively drug-resistant TB (XDR-TB) can the world for millennia. develop when people can’t or don’t take all treatment with these second-line drugs. TB is infectious and spreads from person to XDR-TB is virtually untreatable. person through the air. When people with infectious TB cough, sneeze or spit, they propel Both MDR- and XDR-TB can spread from person the germs that cause TB into the air. A person to person. The best way to stop emergence of needs to inhale only a few of these germs to drug resistance is to ensure that every person become infected. TB can infect any part of the with TB has access to accurate diagnosis, body, but most often it attacks the lungs. effective treatment and a cure. One third of the world’s population has latent People living with HIV are 20 to 30 times more TB, which means they have been infected by TB likely to develop TB than people free of HIV without being infectious to others. Even when a infection. Without treatment, the vast majority of person develops active disease, the symptoms people living with HIV who are sick with TB will may be mild for many months, which leads to die within a few months. TB is responsible for delays in diagnosis and treatment and spread one in four AIDS deaths. of the disease to others. People with TB often suffer from discrimination Most people with TB can be cured by taking and stigma, rejection and social isolation. It mainly a six-month course of drugs costing about strikes people living in poverty since conditions US $25. When people can’t or don’t take all such as malnutrition, overcrowding, poor their treatment, TB bacilli become resistant to ventilation and exposure to indoor smoke create them and multidrug-resistant TB (MDR-TB) high risk for the disease. And TB is a major cause can develop. MDR-TB takes longer to treat and of poverty because affected people are often too can only be cured with second-line drugs, which sick to work, and they and their families may have are up to 1000 times more expensive and have to pay for treatment. All too often children who are more side effects. sick with TB or have a parent sick with TB lose educational and future economic opportunities. Stop TB Partnership www.stoptb.org World Health Organization Stop TB Department www.who.int/tb 20, Avenue Appia CH-1211 Geneva 27 © World Health Organization 2012 Printed by the WHO Document Production Services, Geneva, Switzerland