Tuberculosis: Forgotten, But Far From Gone.

FIGHTBACKTIMEBOMB
DR. LEE REICHMAN SOUNDS OFF
ON POLITICAL WILL, INNOVATIONAND EMPOWERING PATIENTS..............................

Are medical schools
today focusing
enough on TB?
5 Questions withERS President-ElectFrancesco Blasi

UPDATES:PHILIPPINES
STRENGTH IN NUMBERS
ESTONIA
THREE FRIENDS, FIGHTING
MDR-TB TOGETHERPERUIN HOUSES, TB INFECTS ALL –INCLUDING THE CHILDRENTABLEOF
CONTENTS
3

Contributors

4

Dr. Lee Reichman

6

The Importance of
Political Will in TB Control

5 Questions
ABOUT TBERS President Francesco
Blasi

8

PhilipPines

32

ESTONIA

60

Peru

86

Strength in Numbers

Three Friends, Fighting
MDR-TB Together

In Houses, TB Infects All –Including the Children

TAKING TB PERSONALLY

Caregivers: The Frontline
of TB Treatment

A nurse outside Makati
Medical Center in Manila,
Philippines.

LEADING THE WAY TOGETHER…we sought to offer portraits of hope that may be able toinspire those who are currently battling TB…

We at Otsuka are extremely proud topartner with the European Respiratory
Society (ERS) for the development of thisproject. Sometimes when confronting
deadly infectious diseases there is atendency to focus on the clinical aspectsof fighting the illness and forget about the
lives of individual patients. With this project,
we sought to emphasize the very personal
nature of TB – the individual struggles,
successes, and stories of patients from threevery different countries but all sharing in one
common fight. Most importantly, we sought
to offer portraits of hope that may be able toinspire those who are currently battling TB,
letting them know this is a curable disease
that can be overcome.
In 1971, Otsuka selected TB as one of its
first research themes. TB remained a serious
threat, particularly in the company’s own

backyard. Otsuka saw its Asian neighborswith limited access to new medicines
available in the West left helplessly to die.
The company knew there was more that
could be done to benefit their healthcare
and that one new treatment option alone
would not be enough to help the millions
of people who were dying of TB every year.
Thankfully, researchers at the time had thevision and foresight to recognize TB is anextremely tenacious pathogen that finds
new ways to attack the human body andresists many forms of antibiotics.
Our efforts in TB are symbolic of Otsuka
as a whole. Adapting our approaches
to transitions in healthcare, we havemade it Otsuka’s mission to address
medical challenges through research anddevelopment that bring truly innovative
solutions to patients worldwide.

1

Early morning rush hour in downtown
Manila, Philippines.

2

CONTRIBUTORSJohn Donnelly

Riccardo Venturi

Journalist
and photographer
are no strangers to
global health issues and TB. But working together on assignment for the first time, they were
impressed to find strong TB programs at work, personally invested healthcare workers, andresilient patients with the will to live.

John Donnelly

is an award-winning writer based in Washington, D.C., who
specializes in global health issues. For a decade, he worked for the Boston Globe, covering
foreign affairs from Washington and global health and development issues based in South
Africa. Prior to that, he was the Middle East correspondent for the Miami Herald. He is theauthor of A Twist of Faith, a book about the vast faith-based movement to help orphansin Africa. He also has written and produced books for Harvard University, the World
Health Organization, Johns Hopkins University, Management Sciences for Health, and theConsultative Group for International Agricultural Research.

Riccardo Venturi graduated from “Istituto Superiore di Fotografia” in Romein 1989 and began his career documenting Italian and European social issues such as illegal
immigration and the rise of Nazi movements in Germany, and the early years of democracy
in Albania. In the mid 1990’s his attention was mainly drawn towards countries in conflict,
foremost Afghanistan, winning the prestigious World Press Photo Prize in 1996. In 1997 he won
the Leica Honorable Mention for his reporting of the war in Kosovo. Ever since, he has travelled
to countless countries at war among them Somalia, the Gaza strip, Liberia, and Sierra Leone.
Recently, Venturi has covered significant global events, such as the tsunami in Sri Lanka andthe earthquake in Iran in 2003, alternating with personal investigations, such as a long-term
project about the spread of tuberculosis throughout the world, realized in collaboration with
the World Health Organization (WHO), winning in 2008 the “Marco Lucchetta” Award andthe UCSI Award for Photography in 2009.
Most recently, Venturi has been covering the earthquake in Haiti and its aftermath. With his
project “Haiti Aftermath” Venturi received several awards such as: the World Press Photo, firstprize General news; Luis Vultena Award, second prize; Sophot Award; Picture of the YearAward, honorable mention; Sony World Photography, finalist; Care International Award, finalist.
Riccardo Venturi is represented by Contrasto photo agency since 2001.

3

THE IMPORTANCE OF POLITICALWILL IN TB CONTROL
By Dr. Lee Reichman

When Iwas given the opportunity toparticipate in this project and visit Estonia I immediately
jumped at the chance to observe a program I had heard somuch about over the years and meet several patients face
to face. Estonia, like many other Eastern European andformer Soviet countries, is burdened with a mind-boggling
MDR-TB problem, caused by previously poor programs,
poor follow up, poor adherence, and lack of political will,among other reasons. But what I found upon arriving in
Estonia was truly eye opening: an unprecedented level ofcommunication between TB doctors, nurses, public healthofficials and government ministers.
Ten years ago in my “Timebomb” book I gave adire warning of what could happen if public healthauthorities did not place greater emphasis on measuresthat prevented the spread of TB and particularly
multidrug-resistant varieties of the disease. Yet in thisdecade, little seems to have changed.

We all agree that we need new tools: new diagnostics,
drugs and vaccines. But while we wait for such new tools
to be introduced, are there other innovations in practiceor theory that might be considered or reconsidered to
improve the situation?
What I observed in Estonia – dedicated professional staff,
innovative programs, and effective Directly Observed
Treatment (DOT) not only putting a crimp into TB
control, but possibly, MDR-TB rates as well – told me theanswer was unquestionably, yes. But the centerpiece issomething called the TB Consilium – an ad-hoc groupof professionals that together help manage all 303 TB
cases1 throughout the country. They meet on a frequentbasis – no less than monthly – and review each andevery pending case. They discuss challenges, needs,
strategies, and most importantly, their activities andrecommendations are fully backed by the government.
1

42010 figures

The first element of the World Health Organization’s Stop
TB Strategy is political will. This cannot be overemphasized
as it is the lynchpin to all other aspects of TB control which
include case detection, directly observed therapy withcase management, reliable drug supply, recording andreporting. And all this is exactly what is seen in Estonia,
quietly and effectively.
Not just in Estonia, but in the other countries exploredin this magazine we see the importance of political will
resurfacing time and again. In the Philippines, a strong
movement on the part of the Ministry of Health andthe National TB Program (NTP) has gradually moved todecentralize services across the 7,107 island nation so thatpatients in rural communities can gain access to the samelevel of care rather than having to go great distances tocities for treatment or seek hospitalization which can often
increase infection risk and drug-resistance. The move todecentralization in the Philippines will take time, but the
NTP has a multi-step plan in place and is on-track to meettheir millennium challenge goals.
In Peru, the level of political will rises all the way to the top,with President Ollanta Humala making it clear, for the firsttime that I can remember in any country, that fighting TB
is a top priority of his presidency. He has organized various
levels within all ministries –from Health to Transportation to meet and communicate on the subject of TB. The goal:
to address not only the medical, but the social aspects ofthe disease. And of course, he’s invested his own country’s
resources behind that, scaling up TB control funds to US$32
million in 2011 from US$5 million previously.2
The results from each of these countries will not be seen
overnight. As stated, TB is a tenacious disease that lays
dormant in the body for generations, long before thesepolitical plans took shape. But investing in TB control andprevention today will yield dividends tomorrow. Countries
cannot simply abandon course or re-adjust their thinking if
there is not a sharp decline in a graph or chart by next year.
Tackling TB just doesn’t work like this. It requires a longterm vision and a long-term approach.
Excitingly, the focus we are beginning to see on political
will is intersecting at the same time new TB tools andinnovations are hitting the scene. These innovations didn’t
happen overnight either – they took time to develop andresearch, some over a span of decades or more.
And of course, good tools are only half the equation: itis the way they are implemented and used that makes
all the difference. This must be done at the local level,
making the importance of community-based care equallyimportant. One of the reasons the HIV community has beenso successful advancing their agenda is because they havebeen remarkable at empowering the patients themselves.
The same must be done in TB. Reducing hospitalization sothat patients can be treated in their local towns and villagesmeans they can remain a vibrant part of the communityand not treated like social pariahs. Like those I saw in
Estonia, if patients everywhere had the opportunity to staywith their families, work a job or go to school once they
are no longer infectious, we could dramatically reduce thestigma associated with the disease.
New TB innovations are the vehicles that can take us toour goal of the first generation free from TB, but strong
political will is the only fuel that can move them forward.
For those of us who have been involved in TB control formany years, we are more optimistic than ever before by
the developments currently taking place. My great hopeis that the political leadership of all nations affected by
TB will respond to the challenge as Estonia, Peru and thePhilippines have.
Peru NTP

2

Lee B. Reichman, MD, MPH, is the Founding Executive Director of the New Jersey Medical School Global
Tuberculosis Institute, and Professor of Medicine, Preventive Medicine and Community Health at the New Jersey
Medical School, in Newark, New Jersey. He also serves on several national and international committees, advisoryboards, professional organizations and societies including the National Coalition to Eliminate Tuberculosis (nowStop TB USA) (past chair); American Lung Association (past president and recipient of the 1999 Will Ross Medal,
their highest award); American Thoracic Society (honorary life member); and the World Health Organization StopTB Partnership, among others. Dr. Reichman has published well over 200 articles, scientific reviews and bookchapters, particularly about the diagnosis, treatment, prevention, control, patient adherence with therapy andthe epidemiology of and advocacy for tuberculosis. He is also the author of “Timebomb, The Global Epidemic ofMultidrug Resistant Tuberculosis” with Janice Hopkins Tanne, McGraw-Hill, 2002 which was named first prize
winner as the best trade medical book for 2002 by the American Medical Writers Association.

5

QUESTIONS ABOUT TB

with ERS President-Elect Francesco Blasi

1.

2.
6

 hat do you see as the greatest challenge toW
TB control today?
The main point now is that even though we havean overall reduction of the TB burden, we have
not yet achieved any major success in controlling
the TB drug-resistance epidemic. The challenge,
particularly in Eastern Europe, is the lack of rapid
diagnostic testing and good treatment for MDR-TB.
New diagnostic tools may have a great impact but
sometimes the lack of communication between
the lab, the physician, and the patient leads to adelay in treatment. The last data published in theEuropean Respiratory Journal (ERJ) shows that
the Eastern European region is somewhat worse
off today than before. We need new control
approaches and a better prophylaxis of patientswith latent TB in order to address these challenges.
 hat’s the one thing that could happen
W
tomorrow that would make the biggest
difference in the fight against TB?
Better prevention measures. At the end of the
day you can stop the disease if you can prevent it.

Of course better drugs are always needed but
the best way of stopping the flood is to block
the water at the tap! One of the main problems
is the approach to the treatment of latent TB.
[Physicians] are not used to preventing disease. We
have infection control measures that are very easy
to implement – wearing masks, keeping those still
infectious in isolation – but on the other side you
have the problem that most physicians didn’t think
eradication of the disease could happen by dealing
with latent TB. Here in Italy if you see a patient witha positive skin test and you offer them six monthsof isoniazid, most of them would say, ‘No way! I’ll
wait for TB!’ So we have to change our approachwith regards to latent TB.
One other point is that there is a new TB drugs
pipeline which is a positive development for the
future. The good news is that the TB pipeline isshowing significant progress compared to the pastand probably in the field of vaccination we may
have some interesting developments. So at theend of the day I hope to have new weapons in ourarsenal for treating TB in the future.

3.

 hat role does ERS have in helping bringW
about innovations in TB treatment?
ERS is working a lot on TB right now. I think weneed more advocacy at the EU level on TB because
there is mounting evidence that we are facing a
big problem now and in the future. Not just in the
Eastern European countries but everywhere. Thereis massive immigration from countries where thelevel of TB is high. So ERS has decided to workon a Forum for TB Innovation which is a sort of
think-tank to provide an interface for discussion
and new thinking about TB control. Our hopeis to try in some way to complement the workof other organizations like the WHO and ECDC.
It’s a small group but we try to think outside thebox on TB and find new ideas and tools that canbe implemented at the EU level but in the future
perhaps even at a global level.
Simultaneously, ERS is also working on anotherproject – a TB Consilium –where we will work with
the WHO to provide advice to physicians who have
patients with particularly difficult cases of MDR/
XDR-TB. The idea is for a panel of TB experts toprovide advice to these physicians, helping thembetter manage these tough TB cases.

4.

Finally, we’re also working through our journal, theERJ, on a series of papers on TB. Many of them arejointly authored with the WHO and ECDC to help
set the scene in Europe on TB. This is very importantalso to raise awareness among the respiratorycommunity on TB.
 ow did you personally become invested inH
TB issues?
I started far from the TB field. I’m a cardiologist bytraining and practice internal medicine. But I started
working in infection and my main area of interest

5.

was pneumonia. I also started looking at where thereal health needs were in Europe. And with ERS I
knew we had to focus on tackling the main problems
facing the continent. There are enormous healthinequalities between Eastern and Western Europethat lead to varying treatments of TB. I thought it wasvery important for ERS - and for me - to work in the
TB field and indeed I found many other people whostarted their careers with other medical interests andnow are very keen to work in TB. For me, TB is not anantiquated disease. I see it as something that is very
topical and relevant in medicine today.
 re medical schools today placing enoughAemphasis on TB issues?
In medical schools for sure no. The issue is that only
now are we rediscovering the problems of TB. Until
about ten years ago there was this thinking in the
medical community that TB wasn’t a problem anymore
for Europeans. Then we discovered TB was there anda lot of cases were passed through respiratory disease
wards because healthcare workers were not aware of
the disease and not used to making a TB diagnosis.
And this leads for sure to a delay in the diagnosis.
So now we are rediscovering the disease, even in
medical schools. In Italy TB is one of the main topics in
respiratory and infectious disease schools. In the next
decade we will improve and increase the knowledge of
TB in our students and physicians.
And the increased media coverage we’ve seen in
TB - in newspapers, not just scientific journals – will
help to enhance this awareness. Thanks to the press
you see there was an outbreak in Rome with children
involved or an epidemic in another city because oflack of prevention and poor diagnosis. So the pressure
from mainstream media is good pressure that will lead
medical students and medical schools to pay attention
to this disease.

Francesco Blasi, MD, is a Professor of Respiratory Medicine and Head of the Respiratory Medicine Section
Cardio-Thoracic Department at the University of Milan. He is also Director of the Respiratory Diseases Unit IRCCS
Fondazione Cà Granda Ospedale Maggiore in Milan, Italy.
Professor Blasi is President-elect of the European Respiratory Society (ERS). He has published more than 160 papers ininternational journals and is a member of the Editorial Boards of Pulmonary Pharmacology and Therapeutics (Associate
Editor), Respiratory Research (Associate Editor), Clinical Respiratory Journal (Associate Editor), Therapeutic Advances in
Respiratory Disease (Associate Editor), American Journal Respiratory and Critical Care Medicine (member of the Editorial
Board). His research interests include the effects of atypical bacteria infection on cellular immunity in chronic bronchitis,
and the role of atypicals and viral infection in asthma onset. He is interested in the role of antibiotics in the treatmentof COPD exacerbations and asthma and is actively working on pneumonia and tuberculosis research trials. Prof. Blasi
has served on ERS-ESCMID guidelines on LRTIs and is a member of the European Respiratory Society, The American
Thoracic Society and the Italian Respiratory Medicine Society (SIMeR).

7

PHILIPPINES OVERVIEW

8FIGHTBACK IN THE

PHILIPPINES
By John Donnelly

MANILA, Philippines –Mark Gregory deGuzman had big dreams.
He was in his third year
in a hotel and hospitality
college when he came
down with tuberculosis.
His family took him toa private doctor, and ina few months, he felt
better and stopped histreatment prematurely.
(continued)

9

THERE IS NO RICH OR POOR HERE WHEN IT
COMES TO HOW WE TREAT EACH OTHER.
IT’S ALL ABOUT EMPATHY WITH EACH OTHER.

“I want to get better for my mom, so I
can help take care of my family,”said Mark Gregory de Guzman. Faith in
God and his family are keeping him on
his medications.

10PHILIPPINES OVERVIEW

STRENGTH IN NUMBERS
TB can often tear people apart;in the Philippines, it’s bringing many together.

I FEELBLESSED,BECAUSE OF THE
SUPPORT I HAVEFROM MY SOCIAL
WORKER, FROM
MY MOTHER
AND MY FAMILY,AND FROM MYCOUNCILOR WHO
HAS PROVIDED
FINANCIALRESOURCES.

few years later, in April 2011, de Guzman became sick again, and thistime it was more serious: he had multidrug-resistant TB (MDR-TB), which takes 18 to 24 months
to treat, because he had defaulted on his earlier treatment. This time, he went to a government
clinic. The care was free and his social worker made sure he and his family had enough food. The
attention to his well-being, and the financial support, has made all the difference, he said.
“I feel blessed,” he said, “because of the support I have from my social worker, from my motherand my family, and from my councilor who has provided financial resources.”
The Philippines has long been a center of innovation in the fight against MDR-TB, starting with
its ground-breaking push more than a decade ago to allow patients on treatment to live in thecommunity as opposed to hospitals or sanatoriums. TB is an airborne contagion, but the danger
is greatly reduced with proper ventilation; in the tropics, treating patients outdoors – with proper
precautions such as wearing masks around those still infectious – has worked well.
Now the country in the middle of the Western Pacific Ocean, home to 7,107 islands, is in the
midst of decentralizing its services. This great challenge is aimed at enabling many patients inrural communities to get treatment in a nearby clinic instead of moving to cities for treatment.
One unsung part of the Philippines’ innovation, one that has benefitted de Guzman and several
thousand others, is the attention the country gives toward supporting patients. Treatment
isn’t just about providing drugs. It also includes social workers visiting their homes, financial
assistance for transportation and food, and communities of patients coming together at clinics toencourage one another to continue taking their drugs until they are well.

11

PHILIPPINES OVERVIEW

Louie Zepeda is adjusting to living with her disability as a result of TB. “I now live separate frommy parents and am trying hard to overcome the detachment anxieties.”

Dr. Mamel Quelapio, regional focal point for MDR-TB in
the WHO-Western Pacific region, said that the programin the Philippines benefits from the support system forpatients coming from families, health providers andfellow patients.
“In the beginning, we were very focused on the clinicalaspect of MDR-TB treatment,” she said. “We did not
spend much time learning how the community could
participate. But as the years went by, we realized thatthe framework to manage MDR-TB is such a complicatedstrategy that the more people involved in the careof patients, the better. Every person counts for thetreatment of each patient.”
The move toward decentralization of services also is seen
as part of that strategy to support patients, as it will beeasier for them to access treatment.

12“It means they can go back to their home, instead ofrenting an apartment in a city,” said Hernando Caseria Jr.,23, a nurse at the Lung Center of the Philippines.
“It also means they save money on transportation. When I
give them the news that they can access treatment in a clinic
close to their home, they are so happy. They bring us food.”
Dr. Rosalind Vianzon, National TB Control ProgrammeManager in the Philippines, said that the TB control effort
has to involve many more players in the coming years,
including regional health officers overseeing MDR-TB
treatment and municipal managers who make stopping TB
transmission a high priority.
“Our strategic plan is moving toward localizing TB
control,” Vianzon said. “We need to empower local
services. We need to engage all care providers. We wanteveryone working in concert with the national plan.”I TELL PEOPLE THAT THERE’S NO
ALTERNATIVE. YOU CAN’T GET CURED UNTIL
YOU TAKE THE MEDICINES AS DIRECTED.

Nurses at the Lung Center of the Philippines
see more than 500 patients per day whocome for ambulatory DOT therapy.

13

PHILIPPINES OVERVIEW

Vianzon and others understand that the push to
decentralization will take time. One of the concerns is thatthe safety net for patients – social workers checking onthem and other patients supporting them, for instance –stays intact in order to turn back the number of people
who have MDR-TB or drug-susceptible TB.
In Manila, for instance, a group called the Association of
Cured Patients now is helping current patients stay on their
medicines. The motivation for many members was simple:
They wanted to help others just as people had helped them.
“My concern was the growing number of people who
were defaulting on their TB treatment,” said Anacleto
Del Rosario, 58, a member of the group who was cured
in 2007 of MDR-TB. “I also tell people that there’s

no alternative. You can’t get cured until you take themedicines as directed.”
At TB clinics in the Philippines, this bond among patients
is obvious. They naturally gravitate to one another, often
lingering at the centers to socialize before they returnhome. On one day late in 2011 at the Lung Center, agroup of patients stayed for a couple of hours to plan a
Christmas party for all the other patients.
Roland Torres, 53, a former teacher, described his
fellow patients as family. “We are here for 18 months
taking medicines together,” he said. “That’s 18 monthsof being here six days a week, and so we have time toform bonds with each other, to care for each other. We
are all equal here.”

Some MDR-TB patients must receive daily injections which can bepainful. Doctors hope future therapies may one day be able toeliminate the need for these injections.

14

BROKERING PARTNERSHIPSIN TB CONTROL TOWARDSZERO TB DEATHS
TB elimination can only happen if there is vigilance and commitment
from all healthcare providers. Ensuring quality TB diagnosis, treatment
and a cure for all TB patients is a shared responsibility for both public
and private health sectors. And it’s something we’re working hard toaccomplish together right here in the Philippines.

37

FIGHTBACK • OTSUKA-PHILIPPINES OVERVIEWOUR STRATEGIC PLAN IS MOVING TOWARD
LOCALIZING TB CONTROL. WE WANT EVERYONE
WORKING IN CONCERT WITH THE NATIONAL PLAN.

A lab analyst at the Lung
Center of the Philippines
reviews sputum samples
for signs of TB bacteria.

16

“There is no rich or poor here when it comes to how wetreat each other,” said Denice de la Cruz, also a teacher.
“It’s all about empathy with each other.”
They were enjoying a meal in the shade on a warm day.
It was a collective effort. De la Cruz had brought in rice.
Conchita Castro brought tilapia, a local fish. Joyce Garcia
contributed a mix of squash, ocra, eggplant, and string
beans. And Angelito Miranda made fish buro, which wasa mix of rice, tomato, bits of fish, ginger, and vinegar.
The bonding, though, also is due to shared difficulties.
The drugs often make patients feel sick, causing nausea
or worse. Eloisa ‘Louie’ Zepeda, 29, is an example. She
had TB meningitis, and the drugs she took caused theloss of her eyesight, a known but uncommon side effect.

“We haven’t been able to save any money because
anything extra pays for costs associated with mytreatment,” said de Guzman, sitting in the cramped
living room of his family’s home in the Quezon City
neighborhood in Manila.
De Guzman said he often seeks solace in reading andre-reading the Book of Job in the Bible. The story is about
how Job was assailed by Satan, losing all his sheep, oxen,and camels, and then all his children. Job’s belief in God
is tested, but he holds on to it, questioning God why
these horrible misfortunes have happened to him. In theend, God rewards Job for his faith.

In 2007, Zepeda was working as an architect in Manila
when, her body run down, she collapsed on a stairway.
She couldn’t move. She was taken to a hospital,
where she was diagnosed with TB meningitis, and her
condition steadily worsened. She had partial paralysis
on her left side.
“It was all so mysterious,” she said. “I was fortunate tohave friends help me. I was thankful that I was not poor.
I had people telling me to continue taking the drugs,
and if it was not that setting, I don’t think I would havecontinued. Not being able to see and losing my sense of
smell, it’s like you are moving but you are already dead.”
Zepeda now is able to use email through computer
software programs that read aloud all messages. She
works as a website manager for a government-owned
company and has served as an advocate for the blind,frequently speaking at events. “I am very lucky I went
blind in this era, otherwise I would be asking for coins on
the street,” she said.

Dr. Rosalind Vianzon,
Philippines National TB Control Programme Manager.

Her grandmother said the family supported Zepeda
through the illness. “When she needs help, we arealways there,” she said. “We are always by her side.
Sometimes we are sleeping by her side.”

Getting TB, de Guzman said, made him identify with Job.
“Just as Job was afflicted of all those things, I’ve also
suffered,” he said. “Most of my friends have avoided me,left me. My family has been hurt. I asked the Lord, ‘Why
me? I have many things to do. I am the eldest in myfamily and I need to be well to support everyone.’”Zepeda laughed: “My grandmother tells me you have toaccept your situation. Then she tells me if I wasn’t blind,
I’d be rich!”

But de Guzman said he has not lost faith. He expects
to recover from MDR-TB. And he expects to go back toschool and embrace those dreams he once had.

She can laugh about it, but the loss of income for a TB
patient and their family can be crippling. For de Guzman,
who was forced to drop out of hotel and hospitality
school, the impact on his family has been harmful.

“In the end, when I finish my treatment, I pray that I will
be rewarded with a healthy body by my faith in God,”he said. “I have had so much support, from my faith, myfamily, and my social worker. I’ve needed all of them.”
17

IF THE LORD SAYS, ‘YOU CARRY THAT CROSS,’YOU CARRY THAT CROSS.

Mildred Fernando has overcome many
hurdles to beat her TB but she is finally
ready to live her life again.

18

PHILIPPINES OVERVIEWFACES OF TB: MILDRED FERNANDO
What happens if you get extensively drug-resistanttuberculosis twice? One woman’s story.

2

I JUST WANT TOENJOY LIFE, ENJOY
MY WORK, AND
ENJOY MY FAMILY.
THERE’S NO NEEDTO HURRY.

ildred Fernando is 29. Many of her friends are married withchildren. Many have graduated from college and their careers are in full swing. She thinks about
them, and she knows she’s far behind. But it doesn’t bother her.
She’s happy to be alive. Fernando had two bouts with a dangerous strain of tuberculosis, called
extensively drug-resistant TB, or XDR-TB. She has been sick with TB since she was 19.
There are no good global estimates about survival rates for XDR-TB patients, but anecdotal
stories tell of very low odds of beating the disease in HIV-fueled TB epidemics such as South
Africa. This type of TB was first named XDR in 2006 when 53 patients in a rural hospitalin Tugela Ferry were found to have it. All but one died. Nearly 70 countries had reported
documented XDR cases. TB remains one of the world’s biggest killers; every year, an estimated
1.4 million people die from it, according to the World Health Organization.
Now, though, there are several hopeful developments from laboratories and clinical trials
around the world to significantly reduce that death toll, and the question may soon become
whether countries will be ready to act and pay for these new breakthroughs that could savemillions of lives.
Already, several countries, including the Philippines, have been purchasing the GeneXpert
machine, which can accurately diagnose multidrug-resistant TB in two hours, a vast
improvement from the most common test that takes two months.
Fernando’s story underscores the urgent need for better tools. TB could have killed herwhole family. Her father died from it in 2003. Both her sisters had it. They survived after
six months of treatment. (Their mother died four days after Mildred was born fromcomplications following the birth.)19

PHILIPPINES OVERVIEWIn November 2001, a doctor first diagnosed Fernando
with the disease. That led to a series of missteps overthe next several years by private doctors who made such
simple errors such as continuing her on treatment thatwasn’t working.
By 2004, a test found that she had drug-resistant TB.
Fernando didn’t look ill. But she felt horrible. She had
regular episodes of hemoptysis, or coughing up bloodfrom her lungs or trachea. Each time, her family rushed
her to the hospital.
When someone has drug-resistant TB, doctors put
them on what is called second-line drugs. Fernando’s
drug combination therapy caused hearing loss inboth ears. One of the drugs made her itch horribly.
A second caused her to vomit often within a minuteof swallowing the pill. At one point, her condition
deteriorated so much that doctors put her in the
Quezon Institute in Manila; her family couldn’t see her
because of the risk of infection.
She finished the first 18 months of treatment, but six
months later a test found she was positive again for
TB. She started another 18 months of treatment and asurgeon cut out part of her right lung. She finished thetreatment in 2011, and so far, so good.

“I’ve always asked why did it happen to me,” Fernando
said in the house of her aunt outside of Manila. “I always
took the drugs religiously, but I was not getting well. My
grandmother always told me to never stop praying andthat we were all given our own cross to carry and you
cannot choose what cross you have to carry. If the Lordsays, ‘You carry that cross,’ you carry that cross.”
Fernando said she has learned many lessons. She knewthat working was important to her so she started a job asan accountant at the Tropical Disease Foundation, where
she was a patient; in 2011, she was hired by Management
Sciences for Health to be an accountant on its TB project.
She learned that she had to fight for herself. “You musttake an effort to learn your disease,” she said. “Youneed to ask the right questions. You always are dealing
with people who shy away from you for fear of getting
infected. This happened when I knew I was not infectious.
But still I couldn’t get upset. It’s not my problem.”
She has a boyfriend, a nurse, John Stuart Pancho, 26,
who met her during treatment. Fernando said they are
moving slowly in their relationship.
“It’s only now that I am starting to live,” she said. “I justwant to enjoy life, enjoy my work, and enjoy my family.
There’s no need to hurry.”

Mildred Fernando with a colleague at work in Manila, Philippines.
20One bright spot to her ordeal: Mildred
met John Stuart Pancho, her nurse
who later became her boyfriend.

Having recently been cured, Mildred
is taking advantage of some simple
joys in life, like picking up her young
nephews from school.
21

PHILIPPINES OVERVIEWFINDING STRENGTH: A patient’s story
Mark Gregory De Guzman, a college student studying to go into the hotel and restaurant

industry, was diagnosed with tuberculosis in 2007. He saw a private doctor and started and stopped
treatment several times over the next three years because his family often couldn’t afford to pay for the
medication. In 2011, he was diagnosed with multi-drug resistant tuberculosis (MDR-TB) and started
treatment at the Lung Center of the Philippines, under the country’s national TB program.

Q: You are now seven months into
your treatment.
How are you feeling?
A: I’ve seen a great improvement. I’ve
gone from a weight of 36 kilograms
to 42 kilograms.

Many of myfriends don’t
want to see me
now. So I stayaway from myfriends.

Q: After treatment, what will you do?
A: I will go back to school and learn
hotel and resort management. After I
finish my studies, I hope to get a job
and support my family.
Q: How do you look at yourexperience with MDR-TB? Do you
feel cursed that you contracted
the disease or blessed that there
is a system in place to treat you?
A: Blessed. I don’t feel blessed to have thedisease, but I feel blessed to have thesupport of my family and to have thesupport of my social worker and healthworkers here at the Lung Center. They
have been so helpful to me.
Q: What’s been the hardest part of
the treatment?
A: It’s been the stigma. Many of myfriends don’t want to see me now. So
I stay away from my friends. I mostly
stay at home.

22

Q: What do you do with your time?
A: I watch TV, I read books.
Q: What books?
A: The Bible.
Q: And what in the Bible gives you
strength?
A: The story of Job.
Q: Why?
A: W
 hen Job was afflicted with disease,
and when his life became ruined, hisfriends avoided him. Then he lost all
his property. But he still believed inGod. When God saw that Job still
believed in him after all he had gone
through, he rewarded Job.
Q: What does that story mean to you?
A: I can relate to it. I believe when I
finish with this treatment, I will be
rewarded like Job – with my health,
my body intact, and my faith in God
stronger than before.

Mark Gregory de Guzman at home withhis mother and younger sister.

Mark used to enjoy running but his coughprevents him from much physical activity.
He looks forward to resuming his runs
following treatment.

23

PHILIPPINES OVERVIEW

BREAKING BARRIERS: A nurse’s story
Nurse Hernando Caseria, Jr., has been working at the Lung Center of the Philippines for 18

months treating multidrug-resistant TB patients. His father is a deck officer on a ship, his mother a doctor
treating TB patients. He said he didn’t join his profession because of his mother but rather because “it was
something useful that I could do in life, something I could offer to help the health of others.”

 I had a patient who for five months remained positive for TB.
When I told him that he was negative, I saw the joy in his eyes.
Q: What have you learned in thefirst 18 months in treating
MDR-TB patients?
A: The main thing is that it takes
perseverance when it comes topatients. How you help motivatethem to be cured is very important.
It’s very difficult and painful at times
to take these medicines. So I talk tothem very casually.
Q: Why casually?
A: It lessens the tension and breaks down
any barriers between us.
Q: So you use psychology withpatients?
A: You have to think of ways to help thepatient continue with the medications.
You have to find the right way tomotivate them.
Q: Is that hard to do?
A: It is hard when patients are hardheaded. There are those who doadhere to the treatment, and those
who do not understand the gravityof the sickness and the disease.
Sometimes they ignore what we tellthem about treatment.
Q: How do you talk to these patients?
A: I tell them about the seriousness ofthe disease. I tell them what willbe the consequence of not following
24

the treatment, and what will be
the consequence of following thetreatment. I tell them that I see patientscome here on a stretcher or in awheelchair and in a few weeks ormonths, if they take their treatment,
they are walking on their own.
Q: What gives you joy in your job?
A: I had a patient who for five months
remained positive for TB. When I told
him that he was negative, I saw thejoy in his eyes. When they become
negative, they can go to our tent for
those who are negative. Everyone
knows the tents here – one for those
who are positive, where they must
always wear masks, and one for those
who are negative.
So I have been able to tell this patientand others that they could now go to
the negative tent. That makes themvery happy. When this happens, other
patients notice and they will applaud
as the patient goes to the tent for thenegatives. They will give the patient a
standing ovation.
I had another time in which I presented
to the doctors a case of a patient
who was in treatment for over one
year after which the doctors gave theapproval that the patient could stoptaking the treatment. I told the patient,and the patient was very happy. In fact,
I was very happy myself. I was part ofthe patient’s life.
Q: How could things improve in thetreatment of patients?
A: I hope for better medications, for
improved treatment. It would be amajor advancement if the treatment
period was much shorter.
Also, many patients are in very bad
financial situations. It’s very hard forthem to even get here, to pay thetransportation. So it would be good togive them more financial assistance.
One of the things that I do in my job isto help decentralize the treatment ofpatients and assign them to a healthcenter closer to their home. That caneliminate the transportation costs. This
makes them happy, of course, and theyoften bring food to me as a thank you.
Q: Food?
A: Yes, sandwiches, juices. One patienteven invited me to his house for ameal. He lived two hours away.
Q: Did you go?
A: Yes.
Q: How was it?
A: Oh, so much food! It was great.

Like so many other
healthcare workers,
Hernando Caseria,
Jr. brings a personal
dedication to his job.

Every morning fromapproximately 8 am to 12
noon a rush of patientsarrive at the Lung Center of
the Philippines to take their
daily TB medications. This is
typically the busiest part ofCaseria’s day.
25

SNAPSHOT: PHILIPPINES
Children are particularly vulnerable
to TB. The disease occurs in its most
severe form among the youngest
such as in Glenn Canoy, 13, who
suffers from a severe form of extra
pulmonary TB attacking his fragile
spinal cord.

26

Children play in
the Quezon City
neighborhood of Manila,
Philippines.

27

Top left: Two girls gazeat the Pasig River running
through metro Manila.
Top right: The Philippines
is a deeply religious
country. About 80% of the
population is Catholic.

Patients receiving DOT at
the Lung Center of thePhilippines have formed
unlikely bonds. Each day
they share their lunch andsupport each other throughtreatment.

28

29

The greater Manila area
contains more than 11 million
inhabitants, comprising 13%of the national population.
30

PHILIPPINES OVERVIEWTB BY THE NUMBERS: PHILIPPINES 2010
With 93 million people in total spread across an archipelago of 7,107 islands, TB treatment must be localized so thatpatients can receive the care they need, even in the most remote settings. According to the WHO, the Philippines ranks
9th in TB prevalence on its list of 22 high-burden countries. An average of 75 Filipinos die every day from TB.

166,323
Number of TB casesin 201031,000Estimated numberof deaths due to TB
in 20108,800

Estimated numberof MDR-TB casesin 2010Sources: Philippines National TB Programme; the World Health Organization.

31

ESTONIA OVERVIEW

32

FIGHTBACK IN

ESTONIA
By John Donnelly

TARTU, Estonia – Estonia had
to do many things right in its
fight against multidrug-resistanttuberculosis (MDR-TB). It needed
to treat ordinary TB effectively. It
needed to control the distributionof drugs to minimize the risk ofresistance spreading. It needed
trained workers. It needed strong
laboratories with the best tools
to diagnose the disease quickly. It
needed political will.
And it needed good patients.
(continued)
33

WE KNEW THAT CONTROLLING TB IS
COST-EFFECTIVE – YOU SAVE WHEN YOU
STOP THE SPREAD OF CASES.

Agne Nikandrove sits in a local restaurantin Vorumaa, near her hometown. She isproud to have beaten her TB and wants to
help others who are going through what
she did.

34

ESTONIA OVERVIEW

THREE FRIENDS, FIGHTING MDR-TB TOGETHER
Their story of supporting each other is one of the countlessunsung reasons for Estonia’s success.

IT WAS MOSTIMPORTANTTHAT THESE
THREE PEOPLESUPPORTED
EACH OTHER.

hen planners sketched out a blueprint on how they would control
MDR-TB, an unstated given was that patients took their medicines daily. The strategy is to
directly observe the treatment, but the daily grind is not easy for patients. Some give up.
Not giving up becomes critical.
So it was in the case of Margot Anitskin, an MDR-TB patient, who wasn’t going to give up,
and nor was she going to let that happen to two fellow patients in an isolation ward fortuberculosis patients at Tartu University Clinics. Their story of supporting each other is oneof the countless unsung reasons for Estonia’s success, and it’s still cited by caregivers as apart of their model for success.
“It was most important that these three people supported each other, especially with Margot’s
help,” said Evi Kivi, an assistant nurse at the clinic who closely observed the three patients. “Sheactually helped everybody. She saw the situation very clearly. She knew what she had to do.”
Their relationship, in microcosm, mirrors the country’s persistent efforts to control drugresistant strains of TB after it began to spread alarmingly in the years after independence fromthe Soviet Union in 1991. In the early 1990s, Estonia’s economy had slipped, its health system
had faltered, and cases of drug-resistant tuberculosis grew. By the end of the 1990s, Estonia,
along with several other countries once under Soviet control, had some of the highest rates of
MDR-TB in the world, and the world took urgent notice of an emerging health menace.

35

ESTONIA OVERVIEW

But Estonia bounced back and regained control of MDRTB. Experts say the main reason was that political leaders
made the fight a priority.
“We had political support and commitment at thehighest levels of our government,” said Piret Viiklepp,the head of the Estonian Tuberculosis Registry at the
National Institute for Health Department. “We knew that
controlling TB is cost-effective – you save when you stop
the spread of cases.”
Since the late 1990s, the situation has improved dramatically.
In 1998, the numbers of notified TB cases in Estonia totaled
more than 800, and the TB rate was five times that of theNordic countries; by last year Estonia had cut that rate in half,
to 2.5 times the number. The figures are still much higher
than health authorities want, but they see progress.

Dr. Manfred Danilovits, head of the Department ofTuberculosis at Tartu University Clinics and a coordinatorof the National TB Program who has worked to control
the disease since 1981, also said that staff training has
been a key factor in reducing MDR-TB.
He explained: “In 1998, in the framework of our national
TB strategy, we started training our staff. We trained
not only those directly in the TB program but also alladministrative staff, pulmonary specialists, family doctors,
and nurses in the country. In addition, every year since
1996, we have had international training courses on TB
control, where experts come to do training mainly for
doctors from former Soviet countries. These courses arestill ongoing.”

Many former patients like Agne Nikandrove (left) develop close friendships with other patients such as
Raido Remmeglas (right), still in treatment.

36Dr. Lea Pehme andnurse Evi Kivi examine
a chest x-ray.

WE TRAINED NOT ONLY THOSE DIRECTLY IN THE
TB PROGRAM BUT ALSO ALL ADMINISTRATIVESTAFF, PULMONARY SPECIALISTS, FAMILY
DOCTORS, AND NURSES IN THE COUNTRY.
37

ESTONIA OVERVIEW

The stigma of TB is very strong in Estonia. Pille Kapsi lost her job
as a kindergarten teacher after parents complained she would
infect their children despite the fact negative cultures showed
she was no longer infectious.
The government also decided to fully fund the TB
program, including treatment of those with MDR-TB andextensively drug-resistant TB, or XDR-TB. Added to thatwas the guidance of key strategists such as Viiklepp,
Danilovits, and others, who built a strong surveillancesystem that would alert them to new threats.
Inside the Ministry of Health, Ivi Normet, the deputy
secretary general of health, said that while the TB control
program is “rather strong,” officials are looking out forpotential problems. One persistent issue involves TB
patients who abuse drugs or alcohol. In those cases,
some patients don’t care much about getting better andstop taking their medicines.

38
12“Those who are alcoholics and drug abusers are very
difficult to provide medical and social services,” Normet
said. “Many of these patients do not want to have anytreatment. We are doing our best, but it is hard.”
Alcoholics comprised 41 percent of all TB patients in2010, and drug addicts were another 7 percent. Six
percent of all patients defaulted on drug treatment, andnearly three-quarters of them were alcohol and drug
abusers, according to government statistics.
Margot Anitskin, now 40, saw the problems of treating
alcoholics and drug abusers firsthand in the Tartu TB
clinic. “I was friendly with every patient, young or old,whether they were an alcoholic or not,” she said. “Butsometimes in the hospital it just felt like death.”

For more than seven years the UK Ukrainian AIDS Response
has provided expertise, project development and oversight toorganizations in Ukraine and Russia, and in the Central Asian
Republics, the Baltic States and the Caucuses.

Working with communities at high risk of TB disease such as MSM,
street children, drug users, vulnerable families and deinstitutionalising
HIV-positive orphans.
Now working in partnership with the tuberculosis survival project
to build HIV/TB advocacy networks across Eastern Europe.

FIGHTBACK • OTSUKA-PHILIPPINES OVERVIEW“Every day I think about that day
when I wake up in the morningand won’t have to take my pills
anymore,” says Annika Negin.

SHE HAD TO TAKE THE DRUGS, NO MATTERHOW BAD THEY MADE HER FEEL.

40

In 2007, Margot, married and with two young
children, had a persistent cough and saw a family
doctor, who diagnosed her illness as pneumonia. But
antibiotics didn’t make her feel any better, and a year
after that first visit, she was diagnosed with having
MDR-TB. Then she learned a secret: her brother-inlaw, with whom she was living, also had MDR-TB. Her
sister had hid the diagnosis, and Margot, determined
not to repeat the error, decided that no one in her
circle of friends would be taken by surprise.
She phoned 30 friends and told them, encouraging all
to get tested, as she set off on a long period of getting
treatment in hospitals. In the TB clinic in Tartu, she met
Agne Nikandrove, a single woman in her late 20s, andRaido Remmeglas, who was in his early 20s.
The three lived in rooms next to each other, and theylooked forward to their time together every day. For
hours at a time, they played cards, listened to music, orjust laughed about the stories of their pasts. Sometimes
Margot and Agne would go ice skating in a mall that waswithin walking distance. Sometimes the three of themwent sledding on a nearby hill, or they would go out
to eat in the mall because the food at the clinic was sobad. “In the beginning, because of the side effects of thetreatment, I went into a serious depression,” Agne said,
sitting in a small restaurant near her village of Antsla insouthern Estonia and looking back at that time. “But inthose days, the three of us helped each other.”In particular, Agne said that Margot, who had been on the
medications for more than a year, told her she had to takethe drugs, no matter how bad they made her feel. “I would
say that I feel so awful, and she said to me, ‘It doesn’t matter.
You have to take them, and if you take them, the disease will
go away.’ She said, ‘You have to live.’”
Margot, too, reflecting upon the time from a restaurant
100 miles north of Tartu, in Tallinn, also rememberedthose times as a period of being close but also “full of
struggle with many difficulties.”
In February 2010, Raido was scheduled for surgery to remove
his entire right lung, which was full of TB bacteria. Raido
was bereft, worrying not only about the surgery but also inmourning over the death of his mother from a car accident.
“I felt like I had to be a mother for him,” Margot said. “I felt
I had to be as supportive as a mother would be.”Agne said she and Margot did all they could. “Raido
was really nervous about the operation,” she said. “Hewanted to run away from the hospital. So Margot and I
sat in his room, holding his hand, told him jokes, funnystories, anything to get him laughing.”
Doctors told Raido that it was a difficult operation. Whenthey brought him into the operating theater, the assistantnurse Kivi accompanied him. Kivi, now 66, remembered
the moment well.

Annika Negin and Margot Anitskin share stories from their treatment.
“Talking about the disease is important,” says Negin. “You can go crazy otherwise.”41

FIGHTBACK • OTSUKA-PHILIPPINES OVERVIEWRAIDO WAS REALLY NERVOUS
ABOUT THE OPERATION. HE WANTED TO RUN
AWAY FROM THE HOSPITAL.
Raido Remmeglas still has along road ahead of him. He
has been in treatment for
more than four years andunderwent an operation toremove his right lung. His
body has become resistant tomany TB medications.
42

“Raido is very kind, he has a warm heart, and he is very
thankful for everything,” she said in the clinic. “He needed
to talk. The most important thing was to let Raido talk. So
we listened to him. When he went into the operating room,
in my heart, I was afraid, I cried as well.”
Raido survived. But he has yet to fully recover from MDR-TB;
his lungs are diminished. A long line of TB medications haven’t
worked. Doctors and nurses, don’t know if he can get well.
In December 2011, though, there was something tocheer about. Agne successfully finished two years oftreatment. Margot will also soon finish her treatment.
There is no end date yet for Raido, four years into
treatment and still at the clinic.
On a blustery day in December 2011, Agne returned to the
TB ward for the first time since she was discharged in April
2010. She felt uncomfortable. Old ghosts appeared as she
walked past her room, smelled the hospital food, and lookedat the bookcases full of musty hardbacks in Estonian. But
when she entered Raido’s room, those feelings washed away.
“Good to see you,” Agne said, giving Raido a hug. Raido,
sitting on his bed, lit up, and they quickly caught up withthe changes in their lives.
Agne asked how he was doing. “It’s not easy here,”
Raido said. “But it’s important to stay optimistic.”“That’s right,” Agne said.
“Hey, tomorrow’s Margot’s birthday,” Raido said.
“I know, are you going to call her?”“Of course.”
They laughed and talked about their old card games, andeven how in celebration of their birthdays they would put
on music and dance in the hallways of the clinic. It wasa moment of joy, of free movement, and of a passing
pleasurable time of forgetting where they were.
The day after her birthday, her 40th, Margot said she heard
from both her friends. She said it was wonderful to talk tothem. She was so happy to hear about Agne and the end ofher treatment. As for Raido, she didn’t want to think about it.
“I hope he’ll be OK,” she said. “I worry he won’t be. We
always say things will be fine because he’s such a youngman, he’s such a nice person. But I think we are now
hoping for a miracle.”

ESTONIA’S TB
TURNAROUNDTARTU, Estonia – Estonia had long been known as one of theworld’s centers for multidrug-resistant tuberculosis, or MDR-TB.
For several years after the breakup of the Soviet Union, Estonia
and several other recently liberated countries suffered from thecollapse of the socio-economic system, which dealt a severe
blow to health care. In particular, drug-resistant TB cases grew
exponentially around the rim of the former Soviet bloc, as well as
deep inside Russia.
But today, Estonia is becoming known as something entirely
different: It is now an example of how to fight TB. The numberof cases here has been cut in half since 1998, thanks to a strong
control program.
Experts in Estonia cite many reasons for the decrease in new TB
cases, even if the level of MDR-TB remained high, 22 percent
of all cases. They included: a decision by government leaders to
fully fund anti-TB efforts; banning sale of TB drugs in pharmacies
in order to cut down on misuse; annual training of all TB medical
staff by international experts; and the country ensured it would
have enough of the scarce drugs needed to fight MDR-TB.
On one bitter cold evening in Tartu, Estonia’s university town,
two TB control leaders – Dr. Manfred Danilovits, head of the
Department of Tuberculosis at Tartu University Clinics and acoordinator of the National TB Program, and Dr. Lea Pehme, a TB
doctor – talked about the intimate details of a few dozen patients.
The two rattled off stories about patients who had done
incredibly well on the medications, as well as those who weren’t
improving. The conversation kept returning to one patient, Raido
Remmelgas. Both of them were extremely worried. They had
tried several regimens of TB drugs with him over several years,
but he remained infectious.
Dr. Lee Reichman, the founding executive director of the New
Jersey Medical School Global Tuberculosis Institute, asked several
questions about the patient’s care.
Danilovits answered each one, but at the end of the questions,
there was no new big idea on how to proceed. He sighed. “Theend of this story, we don’t know,” he said. “We are waiting for
new drugs. We need them for Raido.”
Although the evening ended on a somber note, Reichman saw
a positive.
“Did you see how much they cared?” he said about the doctors. “We
need that in TB. MDR-TB treatment can take forever, and we need
doctors and nurses to care. They do and that makes a difference.”
43

There is a44

space to fill.
Share Your Story Here: www.TBinnovation.org

TB can affect anyone, anywhere. The stories in this magazine represent only afraction of the millions of lives all around the world who are affected by TB everyday. They are patients, family members, friends, doctors, nurses, social workers,
public health officials – anyone at all who knows someone who has struggled with TB.
Help us to complete the story.

45

WHAT I DIDN’T KNOW, OR DIDN’T SEE,WAS THAT THEY ALSO GAVE ME TB.
Former patient Ave Peetsman has a
special bond with her daughter. “Myother children are all boys. They are
wonderful but they are boys,” shesays. “There’s not the same kind ofaffection as with Karoliis.”

46

ESTONIA OVERVIEWTB AND ALCOHOLISM: BREAKING THE CYCLE
TB doesn’t just affect alcoholics in homeless shelters or
dingy quarters. It also affects children in their own homes.

2

HERE YOU SEEYOUNG WOMENAND MEN WHO
GET MULTIDRUGRESISTANT TB,
THAT THEIRALCOHOLIC FATHEROR MOTHER GAVETO THEM.

ve Peetsman’s parents drank and drank when she was a girl. They
fought bitterly. But their battles left more than emotional scars. Mother and father carried
drug-resistant strains of tuberculosis, infecting both their children.
“I saw terrible things as a child,” Peetsman said. “What I didn’t know, or didn’t see, wasthat they also gave me TB.”
In Estonia, Peru, and the Philippines, stories of offspring of alcoholics grimly echoed eachother: alcoholics weren’t just passing TB to other alcoholics in homeless shelters or dingy
quarters. They also were infecting their own children, many of whom harbored the bacteria
unknowingly until it became active years later, as adults. This time bomb was a cruel twist ofa disease that has hung around for millennia.
“A lot of people think that TB is a disease of alcoholics and drug abusers, people who live
alone in single room occupancy buildings,” said Dr. Lee Reichman, a global TB expert andfounding executive director of the New Jersey Medical School’s Global Tuberculosis Institute.
“But here you see all these young women and men who get multidrug-resistant TB. Theiralcoholic father or mother gave it to them.”
In Estonia, 41 percent of the country’s 330 new TB cases last year were patients who wereconsidered alcoholics. Another 7 percent were drug abusers, according to the country’s
tracking of TB cases.
“The profile of our cases is all over the place – some are drug users, some alcoholics, andsome are young mothers,” said Piret Viiklepp, head of the Estonian Tuberculosis Registry at
the National Institute for Health Department. “Many are getting TB from family contact.”

47

ESTONIA OVERVIEW

A paper published three years ago in the BMC Public
Health journal did a systematic review of studies onwhether there was a relationship between alcohol
problems and TB and found that alcoholics had a“substantially elevated” risk of getting active TB. “Thismay be due to both increased risk of infection related to
specific social mixing patterns associated with alcohol use,
as well as influence on the immune system of alcohol itself
and of alcohol related conditions,” the paper concluded.
Estonian health officials said they often saw children of
alcoholics in TB treatment centers. Agnes Nikandrova,
31, is one. Nikandrova’s stepfather had tuberculosis. “My
stepfather never told me that he had TB,” she said. “Iguess he was afraid of the stigma.”
Dr. Manfred Danilovits, head of the Department ofTuberculosis at Tartu University Clinics and a coordinatorof the National TB Program, listened to her and nodded
knowingly. “In Estonia, this situation is not rare,” he said.
“I’ve had patients who say, ‘Don’t tell my wife. Tell her I
am being treated for pneumonia.’”
For Peetsman, whose father, mother, and brother all diedfrom TB, her experience with the disease – including how
she contracted it – made her even more determined toraise her four children well and in good health.

“I’m always taking care of my children very carefully,”
she said. “My children know they have my support every
minute and every day.”Her experience with TB impacted all her children
emotionally, she said, but none more than her youngest:
her only girl, Karoliis, who was three years old when
Peetsman was diagnosed with MDR-TB in 2008.
Peetsman went to the hospital when she learned she had
TB. Only a few months before, the family cat had been
put to sleep by a veterinarian and she had told Karoliisthat the cat had “gone to see a doctor.” The child’s
father told the girl that same thing when Peetsman was
hospitalized, and the girl thought her mother would die
as well.
“Almost every day she made a drawing for me,”Peetsman said. “Most of them had a girl holding handswith her mother and father next to a house. So we havea really emotional connection. I am actually surprised at
how this child can have so many good feelings toward
me. For me, she’s the most important person in my life.”
Peetsman finished her TB treatment in 2010. “Mychildhood was very difficult,” she said. “But I feel very
lucky right now.”“During my treatment when I was in the hospital and had to be isolated from my family,that was a very difficult time,” says Ave Peetsman.

48

Ave Peetsman and her daughter
Karoliis at home with the family cat.

Mother and daughter enjoy drawing
together. When Ave was sick, Karoliis drew
her a picture almost every day like the one
seen here.
49

ESTONIA OVERVIEWTAKING CONTROL: A doctor’s story
Dr. Manfred Danilovits, the head of the Department of Tuberculosis at Tartu University Clinics anda coordinator of the National TB Program, has been involved in the fight against TB in Estonia since 1981.
He reflects on the progress made against TB and the challenges ahead.

Q: After Estonia’s independence fromthe Soviet Union some 20 years
ago, the incidence of TB soared.
What were the factors behind this?
A: The main reason was that we had
a socio-economic disaster. We were
euphoric for independence but theeconomy and health care system
collapsed for a while. There were
multiple factors behind this, not justone reason.
Q: How did the country rebuild the TB
control system?
A: In 1993, we realized something wasgoing very wrong. That year, the WHO(World Health Organization) declaredthat TB was a global health emergency.
Latvia was in the same situation as us,
and Lithuania as well. All of us received
help from the outside with money andtechnical assistance. We started withthe preparation for a written TB strategy
in 1995 and finalized it by the end of
1997. It took five years to set up andprove that we needed to make changes.
It involved new diagnosis, new drugs,
health reform, and health insurance.
In 1998, we started training ourstaff. We trained not only those
directly in the TB program, but also
all administrative staff, pulmonary
specialists, family doctors, and nurses
in the country. Besides that, every year
since 1996, in August, we have hadinternational training courses on TB
control. Experts come to do training
mainly for doctors from previous
Soviet countries. These courses are stillongoing. From 2001, internationalcourses for nurses started as well.
50

Q: How did you specifically address
the emergence of MDR-TB?
A: We were quite concerned. It seemed in
the beginning that all we had achieved
before was gone. It seemed all hadgone wrong. In 1989, we had the firstrecorded MDR cases. From 1997 to
2002, we had 100 MDR-TB cases every
year. We had a lab built with Finnish/
Swedish and other Nordic assistanceto diagnose and monitor cases.
We understood that diagnosis wasimportant for MDR in Estonia and also
for the world. The government took
responsibility for this, including securing
the drugs through the Green Light
Committee at the WHO. That gave us
a reduced price for the drugs, and we
set up a strict centralized system of
distributing the drugs.

Q: What do you see as the biggest
challenge ahead for controlling TB
in Estonia?
A: I think it’s HIV. We have a high HIV
incidence. It’s influencing the TB ratequite a lot, but not as bad as theearlier prognoses. Second, we need
new drugs. We can’t treat XDR-TB
without new drugs. We face an ethicalproblem related to XDR-TB: What do
we do with an XDR-TB patient who isliving for maybe five years after all thetreatments are finished and there are
no more options? Where do you put
them so they are not infecting others?
Now we do not force them to taketreatment or to go into isolation. But if
we can’t treat them and they are not in
isolation, they are infecting society. It’s atough issue. It’s very sad.

What was most important for us wasgovernment support. Many places lackthat, and a lot of places receive Global
Fund support for their TB programs.
We had early financial support from the
No-TB Baltic assistance program, but
after that all the TB control activities
were financed by government money.
It showed that we were committed tofighting MDR-TB.

A third problem is managing alcoholand drug abuse with the TB patients.
They constitute about half of all TB
cases in Estonia. It’s more complicatedto keep them on treatment. Some
don’t care about their health and thehealth of others.

Q: Looking at this from a technicalperspective, what was the mostimportant step Estonia took tocontrol TB?
A: It was that all staff received training.
That was most important. We also set
up a centralized procurement of drugs,
with very strict control of those drugs
and reorganization of treatment services
with prioritizing ambulatory care.

Q: How many XDR-TB patients do you
have now in the country?
A: It’s about 20 to 25 patients. I think weneed to find them a new environment
in which to live. It should be like ahospice, a nursing home or we keepthem in hospitals for a longer period.
Wherever they are, the place shouldhave good infection control measures.
We will need to face this problem assoon as possible.

What was mostimportant for us
was government
support.
Raido Remmeglas has been a patient of
Dr. Danilovits for nearly five years.

From left to right: Kaja Hurt, Tartu University Hospital,
TB Department, Head Nurse; Manfred Danilovits M.D.,
Tartu University Hospital, Head of TB Department,
pulmonologist; Lea Pehme, M.D. Ph.D, Tartu University
Hospital, TB Department, pulmonologist.

51

ESTONIA OVERVIEWPROVIDING HOPE: A nurse’s story
Evi Kivi, is an assistant nurse at the Department of Tuberculosis at the Tartu University Clinics.

Several patients singled her out for her kindness. In particular, she has grown close to one patient, Raido
Remmelgas, who by the end of 2011 had been in the hospital for nearly four years with multidrug-resistanttuberculosis, or MDR-TB. Kivi talks about her job and about her relationship with Raido and other patientsin trying to cure them of TB.

Q: How long have you been working
with TB patients?
A: I started in the TB department here
eight years ago. Before that, I worked ina nursing home.
Q: Is it difficult working with TB
patients?
A: No, not at all. You have to protect
yourself from infection, and we do thatwell. I’m not afraid.
Q: Several patients, including one,
Raido Remmelgas, who has been in
the hospital for roughly four years,
say that you have been particularlykind to them. Tell me about yourrelationship with Raido.
A: From the very first days, I saw Raido
like my own son. I have a son and adaughter, but I also consider him like a
son as well.
Q: Why?
A: Raido was very kind, he has a very
warm heart. He has been very thankfulfor everything that has been done forhim. He smiles every day.

Q: When his mother died two years
ago – and he was closer to her thanany other member of his family –what did you do to try to help?
A: I listened a lot. Raido wanted to talkabout his mother. He needed to talka lot. He missed her very much. He
showed me his mother’s picture everyday. On her birthday, he lit a candle in
his room. What was important to me
was that I never told Raido that I was
busy or I had to leave to do something– even if I did have to leave. The mostimportant thing was for me to be there
to listen to Raido.
And then there was another difficult
situation, right before he went tohave surgery (to have his right lungremoved). I felt like I was leaving
my own son to somebody. I could
understand it was necessary. But when
they brought him into surgery, I cried. It
was a sad situation.
Q: Did you feel you would lose him?
A: Not so much. But in a hospital a lot
happens.

Q: How is his situation now? He is not
improving on the TB medications
and he still has a large open woundfrom his second operation (which is
kept open because of the presenceof bacteria in his lung cavity)?
A: I try to be optimistic. Raido is optimistic
as well. He has a lot of hope. In myheart, though, I am afraid.
Q: In this hospital, at times patients
form informal support groups. How
important is that for recovery?
A: The most important thing is to havesupport around you. And our work in
medicine also has to be done with awarm heart, and hope that everything
will go OK for people. You have toexpress that hope to the patient. We
have a lot of young people who comein here with TB. We have to help them.
And we can be very optimistic withthem because we have seen very goodresults with people who have taken
their medications. Most of the young
people – except Raido – have recovered.

You have to protect yourself from infection,
and we do that well. I’m not afraid.
52

Evi Kivi, a TB nurse, tries to support the
younger patients in the hospital.
“They need people just to listen to them.
The most important thing I can do is bethere to listen.”

OUR WORK IN MEDICINE ALSO HAS TO BE
DONE WITH A WARM HEART, AND HOPE THATEVERYTHING WILL GO OK FOR PEOPLE.
53

SNAPSHOT: ESTONIA
Nestled along the Gulf of Finland,
Tallinn is Estonia’s largest city andits capital with a population ofnearly half a million. The Old Townof Tallinn is a designated UNESCOWorld Heritage site.

54

Agne Nikandrove is finally enjoying a TB-free life.
During her treatment she would go sledding ona hill near the clinic or eat in the mall she likes tovisit with her friends.

Margot Anitskin on a cloudy
day in Tallinn, Estonia. “I was
friendly with every patient,” sheremembers from her time in the
TB clinic.

“I have never seen myself so happy during thetherapy before!” said Annika Negin. Although she is
not yet finished with her treatment, she tries to findjoyful moments each day and has begun working
again after 9 months of treatment.
55

Margot Anitskin at the Tallinn
Christmas Market.

Dr. Piret Viiklepp of the National
Institute for Health Development has
been a tireless advocate for TB patientsin Estonia. She works long hours andhas familiarized herself with almost
every TB case in the country.

56

Agne Nikandrove and her sister walkthrough their hometown on a cold
December morning. Support from family
members like her sister helped get her
successfully through the treatment.
57

“People who have TB need help,” says
Annika Negin. “They don’t want to speak
about their illness but you have to speakwith them.”

58

ESTONIA OVERVIEWTB BY THE NUMBERS: ESTONIA
Following the collapse of the Soviet Union there was a great deal of disruption to health systems such as that inEstonia. Today, Estonia is back on track but facing new challenges like drug-resistant TB and increasing rates of HIV.

7,628

more reported HIV
cases since 1999

517

fewer TB cases
since 1998

22%

Percentage of
MDR-TB cases of all
TB in 2010

Sources: Estonia National TB Registry; the World Health Organization

59

PERU OVERVIEW

60

FIGHTBACK IN

PERU
By John Donnelly

LIMA, Peru – On the chest
X-ray, the doctor pointed
out an area of inflammationon the left lung. Inez Youri
Naola leaned forward inher seat. Her stomach wasa ball of knots and she
thought to herself, ”Please,
God, let there be no
problem for Ariana.“(continued)
61

PLEASE, GOD, LET THERE BENO PROBLEM FOR ARIANA.

Dr. Epifanio Sánchez examines 5-year old
Ariana Naola for TB.

62

PERU OVERVIEWIN HOUSES, TB INFECTS ALL – INCLUDING THE CHILDREN
Adults are giving TB to their children because of the close
proximity of their lives.

PRESIDENTOLLANTAHUMALA HAS
MADE THE FIGHT
AGAINST TB A
TOP PRIORITYACROSS ALLMINISTRIES.

riana, her daughter, just five years old, sat on her mother’s lap, notknowing what has happening, and she looked at her mother, looking for a signal.
“You can see in the X-ray, here,” said Dr. Epifanio Sánchez, a pulmonologist, “that Ariana
has tuberculosis.”
The mother listened with a blank expression as the doctor talked for nearly a minute, andthen her face fell, and tears streaked over cheeks. Ariana edged closer, trying to comfort her
mother, trying to understand.
In Peru, this awful news is given nearly 2,000 times a year: A child has TB. It speaks of aterrible reality that adults are giving TB to their children because of the close proximity of
their lives. The response from health providers and policymakers is not only to treat thechildren, but also to attack the problem by trying to stop transmission. In Peru, the casesof pediatric tuberculosis, long an afterthought in the public health world, is drawing more
attention as part of the country’s ambitious new TB control strategy in schools, workplaces,
and in medical settings to stem the epidemic.
President Ollanta Humala has made the fight against TB a top priority across all ministries, insteadof leaving it to just the domain of the Health Ministry. Only with that multi-sectorial approach, hesaid, can the country dramatically scale back the number of TB cases. Recently, the government
has also greatly scaled up its funding for TB control to US$32 million in 2011 from roughly US$5
million in the years before. The country’s TB program had been largely funded by the Global Fundto Fight AIDS, Tuberculosis, and Malaria, but much of those funds ended in 2010.

63

PERU OVERVIEW“In his travels around the country, the president saw TB as
being the biggest health issue in Peru,” said Dr. Antonieta
Alarcón, the coordinator of the National TB Program. “He
has all the ministries drawing up plans on how they willfight TB.”
The problem isn’t limited to ordinary TB. Peru was treating
more than 32,000 cases of TB in 2010. It included roughly
1,800 on treatment for multidrug-resistant TB (MDR-TB)
and another 100 treated for extensively drug-resistant TB(XDR-TB). Those numbers of MDR-TB cases were higher
than any other country in the region. But part of the reason
is Peru’s successful efforts to test more people on whether
their TB strains were resistant to the most commonly useddrugs, or first-line medications.

We’ve scaled up detection testing.
We have developed laboratories
throughout the country.

In 2004, for instance, 1,096 patients were tested for MDRTB. Six years later, 5,687 were tested. “We have the largest
problem of MDR-TB in the region and that is true because
we’re doing the diagnoses with much more intensity,”
Alarcón said. “We’ve scaled up detection testing. We
have developed laboratories throughout the country. The
development of labs has really been a major instrument in
our fight against TB.”
Some 1,350 labs now do basic sputum tests to detect
TB; 67 perform more sophisticated culture tests; sevencenters can detect MDR-TB; and four labs are doing rapid
diagnostic tests.
But even as Peru expands and decentralizes its services tofight TB, by improving TB control efforts from the Amazon
region in the north to the high mountains of the Andes in
the center and to the deserts in the south, the center ofgravity for its TB problem rests in one place: Lima.
The capital of 9 million people is home to roughly 60
percent of Peru’s TB cases. If Lima were a country, it would
outrank almost all countries in Latin America and the
Caribbean for MDR-TB cases, surpassing, for instance, thepoorest country in the hemisphere, Haiti.

64

The Juan Pablo II neighbourhood of Lima
has some of the highest incidences of
MDR-TB in the city. Overcrowding is acontributing factor.

IF LIMA WERE A COUNTRY, IT WOULD OUTRANKALMOST ALL COUNTRIES IN LATIN AMERICA AND
THE CARIBBEAN FOR MDR-TB CASES.

65

ESTONIA OVERVIEW

Dr. Antonieta Alarcón, the coordinator of the
National TB Program, and her team are responsible forcoordinating an ambitious government plan to reduce incidencesof TB and increase coordination within the government.
And when experts look at MDR-TB and XDR-TB cases inLima, the city has an even higher percentage of cases thanin the countryside. Of Peruvians with MDR-TB, 82 percent
live in Lima. As for XDR-TB, the experts estimate that 90
percent are in the capital city.
“The government is very aware that we need to dosomething that will tackle this problem,” said José
Carlos Yamanija Kanashiro, the director of projects andinvestigations for Socios En Salad, an NGO that first led
efforts in Peru in the 1990s to treat patients with MDRTB. Socios En Salad has turned over its programs to thegovernment, but still provides medical and logisticalsupport. “The issue in Peru now is not a matter of budget,it’s a matter of managing the problem.”66
12

In both the government and civil society, Peru has had asuccession of TB control leaders who have been strong
advocates and technical leaders in dealing with MDRTB. One of those leaders was Dr. Jaime Bayona, who led
Socios En Salad for many years and now is director of
Global Health Programs and Practice at the DartmouthCenter for Health Care Delivery Science.
One of Peru’s innovations was helping patients who werepoor by giving them food baskets, transportation money
to go to health clinics, and even improving their homes
to build separate rooms so those who were infectious
would not pass TB to other members of the family.

3 million people
every year fail to
get appropriate
care for TB
FIND’s aim is to help drasticallyreduce this figure, especially forthe most vulnerable populations
that are often missed.
FIND is developing affordable,easy-to-use and cutting edge
diagnostic tools for those whoneed them most.

www.finddiagnostics.org

FIGHTBACK • OTSUKA-PHILIPPINES OVERVIEWCHILDREN, ESPECIALLY IF THEY ARE
MALNOURISHED, ARE AT GREAT RISK.

Children of all ages are treatedfor TB and other diseases at theInstituto Nacional de Salud delNiño in Lima.

68

“This is key,” Bayona said. “I can have the best drugs to giveto patients, but having the best drugs will not guaranteethat the patient will stay on treatment for two years.”

grateful for all the support. It includes a delivery of flour,
rice, beans, and other essentials, as well as building two
new bedrooms so that her two sons, both with MDR-TB,
would sleep in their own rooms.

Dr. Oswaldo Héctor Jave, a former national TB director and
now a pulmonologist at the Dos de Mayo Hospital in Lima,
agreed with Bayona. “TB won’t be stopped if you only
give drugs to the patients,” he said in the courtyard of thehospital. “You need to attack the root causes of TB.”
Jave said that people from all parts of society in Peru get
TB, but the highest rates remain in the lower classes. “Whyare TB rates so high in poor people?” he said. “It’s because
they live in crowded houses, and the transmission goesfrom family member to family member. Children, especially
if they are malnourished, are at great risk. We see houses
when a mother or father has MDR-TB and they pass thatto their children – sometimes to all their children. So weneed to do more to support the nutrition of the children inthese families.”
In the Juan Pablo II neighborhood of Lima, Eva Davita
Espinoza Gomez, the mother of eight, said she has been

“Several of the children were sleeping together in
one room, so this is a lot better,” she said. The two
bedrooms, built at a cost of several thousand dollars
using money originally from the Global Fund, were built
on the rooftop of the house.

Inez Youri Naola returns home after just receiving the diagnosis that her daughter has TB.
69

FIGHTBACK • OTSUKA-PHILIPPINES OVERVIEW

Antonia Naola breaks down after
hearing her granddaughter has TB.

WE ALWAYS WORKED HARD SO THIS COULD
NOT HAPPEN. AND NOW IT HAS.
70

Ariana Naoloa, at home with her family in North Lima.
She is one of three children living in the house who is infected with TB.

It’s particularly important now because one of her sonshas stopped taking his treatment and remains infectious.
The other son, Steven Castro Espinoza, 19, who is taking
his TB medicines faithfully, said the situation with his
brother has created great tension in the house.
“I’m not happy about what he’s doing,” he said. “He is
contagious. He could be infecting our mother.”
The issue of passing TB from one family member toanother is a reality in many families. It happened in Inez
Youri Naola’s family. Her five-year-old daughter, Ariana,
was just the latest to become infected.
In the north Lima middle-class neighborhood, the disease
entered through the patriarch of the house, Jesus Youri,
76, Inez’s father. He underwent six months of therapy
and became cured, and during his treatment he tried toisolate himself from the others.
It didn’t work. Five adults and six children live in thehome and the children, all under the age of 10, run inpacks from room to room. At least one child is infected
and another one is likely sick with the disease.
When Inez Youri returned with Ariana to the house after
learning of the girl’s TB diagnosis, most of the family was

waiting for them in the living room. Inez whispered thenews to her mother, Antonia Naola, 66. Antonia put her
hands to her mouth and started to weep.
“Oh, I’m really shocked,” she said through her tears.
“We worked so hard to prevent this.”Ariana squeezed on a couch in between her two sisters
and her cousin, Leondro, 6. Leondro also had comedown with TB, and was on treatment. Upstairs, anothercousin was sick, coughing all hours of the day, but his
mother had refused the pleas from the family to have
him tested for TB.
Ariana hopped off the couch and announced, “I want to
go to my room and watch Speedy Gonzalez!”
Just those words prompted her grandmother to start
crying again. Ariana looked on, confused. Her mothersaid she could go play, but no television for now, and thechildren all left en masse to a back room in the house.
The grandmother wiped her eyes. “This illness, I don’tknow how it happens like this, how it passes so easily,”
Antonia Naola said. “I took care of these children. I fed
them well. We always worked hard so this could not
happen. And now it has. The poor girl.”
71

HOW IS IT POSSIBLE THAT SOMEONE WHO
GETS GOOD GRADES, DOESN’T SMOKE, WHO
IS GOOD AT SPORTS AND EVEN HAS ALL
THESE MEDALS, GETS TB?

Henry Gonzalez wearing his first prize
medals from various karate championships
at Pontifical Catholic University of Peru.

72

PERU OVERVIEWFACES OF TB: HENRY GONZALEZ
Cured of TB, Peruvian tackles new challenge:
Running a marathon.

2

TODAY HE SAYS HEIS STRONGER FOR
IT AND WANTS TO
SHARE HIS STORY
TO GIVE HOPE TO
OTHERS WITH
MDR-TB.

enry Gonzalez seemed to have it all. He was young, handsome,a champion karate competitor, and was excelling in classes at the prestigious PontificalCatholic University of Peru. But in 2003, on the sidelines of a karate competition, he began
spitting up blood.
Soon, Gonzalez learned he had tuberculosis – and not just ordinary TB, but multidrugresistant TB (MDR-TB), which would take 18 months to two years to treat.
“I got really angry because how it is possible that someone who gets good grades, who doesn’t
smoke, who is good at sports, and even has all these medals, how could I get TB?” he said.
That began Gonzalez’s personal fight against TB. He faced many obstacles along the way,
but today he says he is stronger for it and wants to share his story to give hope to otherswith MDR-TB.
Gonzalez said he approached his disease as he did anything else: with vigor. But not
everything went his way.
First, when university officials learned of his disease, they asked him to suspend enrollment
until he was finished with treatment – a two-year proposition. Gonzalez tried to explain tothem that he was no longer contagious, thanks to the medications, but the university stoodfirm. He was ordered off campus.
Then, his father also received a diagnosis that he had MDR-TB, and his mother learned she
had breast cancer. His family household, always a vibrant place, had three members withmajor illnesses.

73

PERU OVERVIEW“There was definitely a moment when our extended family
was very worried about us, but the whole experience also
made us stronger,” he said.
What made him stronger? One thing, he said, was seeinga therapist and then participating in support groups madeup of other people who had MDR-TB.
“I saw the lives of others and saw that many of themhad much harder lives,” he said. “Some were single
mothers, some divorced, some lost their father, many livein poverty, and many infected their children. There was a
lot of sadness.”

Gonzalez laughed in recalling these sessions. Often, hesaid, the other patients would feel sorry for him.
“It was unbelievable,” he said. “They said I had it worse.
They said, ‘We had nothing, and you had something,
but now you have nothing, too.’ They made me feel
good not just for encouraging them but because theyencouraged me as well.”

Gonzalez said the sessions made him think deeply about
his situation and the plight of others also with MDR-TB.

Today, Gonzalez and his father are cured. His motheris doing much better. Gonzalez not only went back to
his university classes and graduated, but he also started
working out again, this time running long distances.
In the last few years, he has competed in several longraces, including a 42-kilometer marathon in Lima in threehours, 22 minutes in 2009.

“I thought, ‘Should I really feel bad about myself?’ I decided
I should try to help others and so I would talk to them, tellthem to keep fighting, tell them that their health wasn’t justa physical thing but it was a mental thing as well,” he said.

“I’m the proof,” Gonzalez said, walking around hisneighborhood and watching boys play football in a small
field. “TB doesn’t mean you can’t get back to good health.
Nothing is impossible – not even running a marathon.”

Henry Gonzalez and his mother walk through the neighbourhood where they live. His mother sufferedfrom breast cancer at the same time he was battling TB. Today, both are doing much better.

74

“I didn’t feel sick at first. I
was still competing in karate
tournaments even though
I was infected with TB anddidn’t realize it.”Henry training for an
upcoming marathon with
two friends.
75

PERU OVERVIEW

DOCUMENTING CHANGE: A journalist/filmmaker’s perspective
Sonia Goldenberg, a journalist and filmmaker, produced a documentary film called Amor en el Aire(Love is in the Air), which documents Peru’s fight against multidrug-resistant tuberculosis (MDR-TB). She
is one of the global Stop TB Partnership Ambassadors. Goldenberg talked to John Donnelly in early 2012
about her experiences and perspectives on Peru’s battle against TB.

We have a
tremendous
amount ofpolitical will
to fight TB for
the first timeever in Peru.

Q: Why did you become so involvedin the efforts to stop tuberculosis,
particularly drug-resistant TB?
A: It’s simple: TB is the biggest healthissue in Peru. In the region, there’s
more MDR-TB and XDR-TB thananywhere else in the region. If you justlook at one part of Lima, San Cosme,that tells a story. There are 20,000
people there. In 2009, they had 689
cases of TB in that community. That’s
one for every 29 people.
Q: When did you first get interested?
A: It was several years ago, when I was
living in Haiti. I was working for theUnited Nations there. There was ahuge TB problem. I thought to myself,
this is a curable disease but so many
people are dying from it. It wasn’t
getting anywhere near the attention
that it deserved. So I wanted to help
put it on the agenda in Peru. I felt that
I could make a contribution.
Q: So what is happening in Peru now?
A: We have a tremendous amount ofpolitical will to fight TB for the firsttime ever in Peru. The president
has made it a priority. But it’s a very
complex technical issue, and it’s a76

particularly difficult problem in Lima,
which has nearly 60 percent of all thecases of TB in the country.
Q: What impresses you about thefight against TB in Peru?
A: The health workers. They really stayconnected to the patients. They get
into the homes of the patients andthey know all their stories. It’s like anold-fashioned yet avante-garde wayof practicing medicine. I’m so takenby this. You see inspired people
doing amazing things.
Q: So what’s ahead for Peru in its
efforts to control TB?
A: Peru is very aware of its TB problem.
Now with it so strongly on thepolitical agenda, with our president
pushing for more action, there aremajor challenges in the effort todecentralize the services. I’d like to
be instrumental in helping stop it.
People in all sectors of society knowthat in the next 10 years we shouldhave a much lower level of TB, likeany other civilized country. It’s acomplex problem to do it, but it canbe done.

Sonia Goldenberg,
Stop TB Partnership Ambassador.

77

PERU OVERVIEWTAXI CAB CONFESSION: A husband’s story
When we started work on this magazine, we knew that TB could affect anyone, anywhere. But

we didn’t realize how true these words were until we met Carlos Franco, the driver who accompanied
us during the Peru portion of this project. Arriving promptly each morning at our hotel in Lima,
Carlos cheerfully took us to each TB hospital, clinic, and neighborhood we wanted to visit. We chatted
about his family, his work, passengers he had driven from other countries. But it wasn’t until nearly
the last day of our visit when, in a quiet moment in his car, he confessed something. “Excuse me sir,” he said.
“There is something I need to tell you. My wife had TB.” Carlos Franco wanted to participate in this project. He
wanted her story to be told.

Q: What happened to your wife?
A: My wife sold breakfast foods tomorning commuters. We think she
got TB from a customer who was
coughing or sneezing in the street. We
went to different health posts for her
to get her treatment. The treatment
has taken place over several years. She
stopped before she was supposed to.
I begged her not to, but she said she
couldn’t take it anymore.
Q: What was the hardest part for her?
A: It was the injections of one of the drugs.
She suffered a lot from them. She hadthem every day for over a year. In theend, they had no place to give her more
shots because she was in such pain.
 hat happened when she
Q: W
stopped taking the medicines?
A: She stayed on it for one year, threemonths. She said she felt better anddidn’t see why she should continue.
I asked her not to stop. I was afraid
she could make others in our family
sick, too.

Q: Did she improve after she
finished the medicines?
A: She was feeling better, gaining
weight. But three months after she
stopped, she started coughing again.
I pleaded with her, and my children
pleaded with her, to go back to thedoctors. She didn’t want to. Finallyshe did. She went on the medicines
for another three years. At the end,a doctor said she may have to go
back to the medicines if she wasn’t
careful. She has diabetes, so she has
to monitor that carefully.
Q: How is she doing now?
A: She’s OK. She’s coughing a little,
not much.
Q: Are you worried?
A: Yes. I’ve told her, she has to watch
her diabetes.
Q: What has helped you through thisordeal?
A: I read a lot so I could take care of her.
When we spent time at the healthposts, I talked a lot with the nurses
and the doctors. They would tell methings. So I would keep talking to mywife, telling her how important it was
to not only take the medicine, but also
to eat well and to have good nutrition.
Q: S o you are still talking about thiswith your wife?
A: (Laughs) Every time I talk to her about
it, she throws a shoe at my head. She
doesn’t want to talk about all thesethings. But this is serious. My children
tell me, ‘Let her live in peace, don’ttalk to her about it.’ She does get
upset, and when she gets upset, herblood sugar jumps up. I don’t want toupset her, but I want her to take thisseriously and to deal with it, to get
regular check-ups. I’m not worriedfor myself –they have an expression
here, ‘The bad weed never dies’ – but
I am worried about her and the restof my family.

I don’t want to upset her,but I want her to take this seriously and to deal
with it, to get regular check-ups.
78

Lima Cathedral on the eastern edgeof Plaza Mayor.

Carlos Franco is a taxi driver inLima, Peru. He and his wife had
four children; three are living and
one died as a young man in an
accident. In 2005, his wife, who soldbreakfast foods from a street cart,
contracted TB. He said fighting thedisease has been an ordeal for his
wife, for him and his family.

79

SNAPSHOT: PERUWith nearly 9 million inhabitants, Lima is thefifth largest city in Latin America. It’s sprawling
size covers an area of approximately 800 square
kilometers that runs from coast to mountain.

80Dr. Oswaldo Héctor Jave examines a patient at
the Dos de Mayo Hospital in Lima.

Locals gather at lunchtime in the University
Park of San Marcos in Lima, Peru.

81

PERU OVERVIEWFrank Bilcas is an XDR-TB patient. Bilcas firstcontracted TB when he was 17 and becauseof the illness had to drop out of high school.
“One thing the illness did for me was that itturned me into a strong person,” he said. “I
was drifting when I was 17; now I must be
focused.” One other reason for his focus: heand his partner, Brenda, have a two-month-oldson, also called Frank.

Dr. Jave with medical students in the TB wardof Dos de Mayo Hospital.

82Dr. Hernán Del Castillo Barrientos is apneumologist at the Instituto Nacionalde Salud del Niño in Lima. “The TB threat
in Lima is serious,” says del Castillo,“particularly for children in infectious
households.”

83

Lima is comprised of thirty densely
populated districts and a mix ofarchitectural styles ranging from early
Spanish colonial to French neoclassical.

84

PERU OVERVIEWTB BY THE NUMBERS: PERU
Peru has one of the highest TB burdens in Latin America with the vast majority of cases concentrated in the capitalof Lima. On paper, the number of cases appears to be increasing, but this is partially a result of improved casedetection and diagnostic tools which are helping get more patients the treatment they need. The country has a long
way to go, but Peru is up to the challenge.

32,477

Number of TB casesin 2010

1,800

Estimated TB deathsin 201081%

Treatment successamong new TB casesin 2009

Sources: Peru National TB Program; the World Health Organization.

85

CAREGIVER OVERVIEW

86

TAKING TBPERSONALLY
By John Donnelly

LIMA, Peru – In this capital’s
brown hillsides, in villages nestledin the dark-green forests of Estonia,
and inside the crowded riversidecommunities in Manila, there is
one constant in the fight against
multidrug-resistant tuberculosis: somuch depends on health workers.
(continued)

87

VARGAS, A MOTHER OF TWO YOUNG BOYS,PRESENTED AN OMINOUS CHALLENGE:
SHE WANTED TO DIE.

Melissa Vargas with her son. “I kept
going for my children,” she says. “I
thought of them every day.”88

CAREGIVER OVERVIEWCAREGIVERS: THE FRONTLINE OF TB TREATMENT
For some healthcare workers, treating patients with TB is
more than a job, it’s a life calling.

o help a person with MDR-TB get well, there are multiple issues.

TO HELPA PERSONWITH MDR-TB
GET WELL,THE HEALTH
WORKER
MUST FINDAN APPROACH
THAT HELPSTHE PERSONSTAY ALIVE.

The health worker has to make sure the person takes the drugs every day for 18 to 24
months – 540 to 730 days.
They have to understand the person’s home life.
They must visit them at home.
They must listen.
They must find an approach that helps the person stay alive.
For Ruth Espinoza, a nurse in Lima, the story of nurturing one patient, Melissa Vargas, backto good health tested her in ways she never expected.
Vargas, a mother of two young boys, presented an ominous challenge: She wanted to die.
The TB drugs made Vargas sick and depressed. She couldn’t sleep. She had no energy. And
she was just a few months into two years of taking her medications every day.
Espinoza weighed the situation carefully. She believed that the deep depression felt by
Vargas, 23, was partially a byproduct of the TB medicines. She made an appointment for
Vargas to see a psychiatrist.

89

SHE SAID SHE WAS THERE TO TAKE HER TOA PSYCHIATRIST. THE MOTHER REFUSED.
THE NURSE DEMANDED IT. THE MOTHER WENT.

Ruth Espinoza of Socios en Salud in the homeof Melissa Vargas. She visits her every week
to make sure she is taking her medicines andsee how she is feeling emotionally.

90

The next morning, the nurse appeared at the young
mother’s house. She said she was there to take her
to a psychiatrist. The mother refused. The nurse
demanded it. The mother went.
Today, several months after that first visit to thepsychiatrist, Vargas wants to live.
“Ruth has helped me so much that I agreed to gowith her to see the psychiatrist, even though I didn’t
want to,” Vargas said in her in-laws apartment inLima, looking back at the moment four months
before. “I feel much better now. It’s not only the
medications but also the conversations that I havewith the doctor. Just being able to talk about all thethings that bother me has helped a great deal.”

Espinoza has spent the last year
seeing her patients in the clinics
as well as in their homes, checking
up on them to see if they arecoping with life.
Espinoza, who works for the non-profit group
Socios En Salud, has spent the last year as mucha social worker than as a traditional nurse, seeing
her patients in the clinics as well as in their homes,
checking up on them not only to make sure they
are taking their medicines but also to see if they arecoping with life.
“Melissa is getting a lot stronger,” Espinoza said one
day recently in the Juan Pablos II neighborhood of
the capital city. “Her case shows how important it
is with TB patients not just to pay attention to thephysical part of it but also to the mental aspect ofdealing with this disease. Her state of mind was key
to making her well.”
The more she works with TB patients, Espinoza said,“the more I see that having psychological support
really makes a difference.”

91

ESTONIA OVERVIEW

A nurse at a clinic in Estonia keeps track of each patient’s
medication and makes a note of who came in and reports those
who did not so that clinic staff may conduct appropriate
follow-up. Making sure the patients come in each morning fortheir medicines is crucial to preventing resistance.

THE DIFFICULTIES OF THE JOB
Is there any job harder than a health worker who helps
MDR- or XDR-TB patients in the developing world?
It has to be among the most challenging and difficult. The
tools to fight the disease are ancient – a commonly useddiagnostic for TB is more than a century old, the mostrecent drug developed for TB is nearly half a century old,
and there’s no highly effective TB vaccine.
The story is similar in other countries as well. In Estonia, Evi
Kivi, 66, an assistant nurse at the Tartu University Clinics,
could retire if she wanted. But she said she loves her work.

92“I always want to help people, and I’ve always wanted towork in this field,” she said. “I’ve never had any problem
with patients. Everybody needs help. They very much need
our help.”
In Southeast Asia, Maria Anna Katrina Atienza, 24, a clinic
nurse at the Lung Center of the Philippines, said that theyempathize with patients because they see the multiple
difficulties in their lives. “Many are so poor that they don’t
have bus fare to get here,” Atienza said. “And so theydefault on their drugs.”

Asked how many defaulted, she said 12 out of 480 had
stopped taking their drugs last year.

THE IMPORTANCE OF A CAREGIVER

Told that number seemed low compared to many
HIV treatment programs, Atienza said she looked at it
differently. She said the number, to her personally, was high.

Vargas likely contracted the disease from her brotherand sister-in-law. The sister-in-law died last year from TB.

“It’s bad,” she said. “It’s a lot – at least to me. We wantzero people defaulting. That’s success.”
Another burden for health workers is often unspoken: thedanger of contracting the disease. From 1997 to 2009, 224
health care workers in Peru contracted MDR- or XDR-TB,
an average of 18 a year. In the clinic near the Juan Pablo II
neighborhood, the TB nurses spend six-month shifts in theclinic in order to lessen the risk for any one health worker.
But Espinoza said she wasn’t overly concerned with her
exposure to TB. Most of her patients are not infectious.
For the few who are, she wears a mask.
Vargas said she knew from the start that Espinoza cared
for her.
“Ruth has counseled me like she was my mother,”
Vargas said, whose boys are five and four years old.
“She always worries about my kids, and asks about them.
Whenever I see Ruth, she asks about the kids.”“I think the biggest reason she died was that she didn’t
have the support of someone like Ruth. You need that
support. You need someone to look after you,” Vargas
said. “Without Ruth, I don’t know what would have
happened. I know without my kids, I would have died.”
Espinoza said that her patient, who was once so weakthat a doctor in a hospital told her that her case wasterminal, has showed enormous strength.
“I feel good because I’ve seen a big difference in her,”Espinoza said of Vargas. “When she was very sick, I
told her, ‘For your two sons, you should make this final
attempt to live.’ And she did.”
The two smiled, if only slightly, at the memory. Vargas is
not in complete good health. TB has eaten away morethan half of her lungs. She has to move slowly at times.
But she is determined, Espinoza said.
“Now, she wants to study, to go to school, she wants towork,” said the nurse. “She wants to recover her life.”

A doctor from the Philippines examines a TB patient at the Quezon Institute in Manila, Philippines.
93

We hear a lot of statistics
quantifying the TB crisis, butthere’s only one number the
TB Community is focused on:
zero. Zero new infections, zero
deaths, zero stigma and zero
discrimination. Today, partners
from all over the world areworking on a new goal that starts
with ZERO.