Delivering Hope: Hepatitis Awareness, Prevention and Care · mission of hepatitis has remained a...

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Transcript of Delivering Hope: Hepatitis Awareness, Prevention and Care · mission of hepatitis has remained a...

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The mission of the Bristol-Myers SquibbFoundation is to help reduce health disparitiesby strengthening health care worker capacity,integrating medical care and community-basedsupportive services, and mobilizing communities

in the fight against serious disease.

Around the world, Bristol-Myers Squibb’ssocial responsibility programs seek tomake a difference by delivering hopeand addressing health disparities.

Delivering hope

In the fight against serious disease, the com-pany’s Foundation focuses specifically on waysto help reduce health disparities by helpingstrengthen health care worker capacity, integrat-ing medical care and community-based support-ive services, and helping mobilize communities.The Foundation engages partners in government,academia and civil society in programs to sup-port innovative and comprehensive public healthresponses while helping to improve health out-comes. Nowhere is this effort more apparenttoday than in the fight against HIV and AIDSin Africa and hepatitis in Asia.

While about 350 million people worldwide areestimated to be infected with hepatitis B virus(HBV), three-quarters of them are in Asia, withan estimated 93 million in China, 30 million inIndia and about 1.2 million in Japan. Many ofthose infected die from long-term consequencesof the disease, including liver cirrhosis and livercancer. Worldwide, an estimated 170 millionpeople are infected with hepatitis C virus(HCV), with the disease burden especially highin Southeast Asia. At this time, no vaccine isavailable to prevent HCV infection.

The challenges are significant. With less accessto health care, to education or preventionprograms, and because they are more oftenaffected by the social stigma related to theirdisease or their own status, millions experiencehealth care disparities and remain at risk. Torealize and sustain health gains, comprehensiveinterventions are required, integrating aware-ness, disease education, prevention and med-ical care while also addressing social healthfactors. The Bristol-Myers Squibb Foundation’sgroundbreaking work in Africa has createdproven models to consider. Focusing on

vulnerable populations of women and childrenliving in resource-constrained areas andaffected by HIV/AIDS, the Bristol-Myers SquibbFoundation experience since 1999 has providednew insights, models and tools to addresssuch major health care challenges in innovativeways, including community-based treatment,education and support. The Foundation isnow drawing on those lessons learned in thebattle against hepatitis.

Support focuses on four areas: creating greaterawareness of hepatitis and addressing thestigma associated with the disease; prevention,especially among groups most at risk; diseaseeducation and management for lay and profes-sional health care workers; and operationalresearch to develop data and additional demon-stration projects to generate lessons that canbe shared, adapted and applied in the future.

These efforts are helping to develop a portfolioof projects that aim to effectively raise theprofile of the disease in Asia, inform healthpolicy and national programs, build capacityfor institutions as well as the potential forcommunity responses, and target prevention inthe hardest-hit populations including children,blood donors and health care professionals.

In many rural communities, lack of viralhepatitis awareness hinders prevention efforts.The Foundation therefore is seeking to increaseawareness among the general population andlay health care workers about hepatitis B andC. In addition, programs in China and Indiaidentify children as important entry pointsfor building family and community awareness.And in Japan, the Foundation supports aninitiative to increase awareness and testingand to reduce stigma associated with HBV.

Since 2002, Bristol-Myers Squibb and theBristol-Myers Squibb Foundation haveprovided nearly $3 million in grants in China,already benefiting more than 700,000 peopledirectly, more than $1.25 million in India andabout $450,000 in Japan.

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Awareness and destigmatization

In India and China, the Bristol-Myers SquibbFoundation supports a number of projects bynon-governmental organizations (NGOs) tobreak down these barriers, increase awarenessand understanding and create specific toolsand approaches to help mitigate effects of thedisease through better education and training.

These awareness and destigmatization programsfocus on providing accurate information abouthepatitis to the community. Priority areas andpopulations that are poor, most vulnerable,or already disproportionately affected by thedisease are targeted beneficiaries.

In India, “B-Rodh,” a program conducted bythe HOPE Initiative, focuses on students andtheir families in 1,000 urban and rural schoolsin the state of Uttar Pradesh, where about athird of the population lives below the povertyline while the state’s infant and maternalmortality rates are above the national average.This “child-to-community” approach identifieschildren as channels to take health messagesto their families and communities. Even in thisdifficult environment, there is hope – and anopportunity to target students as instrumentsof social change.

One teacher’s reaction to the Bristol-MyersSquibb Foundation-funded program is typicalof the feedback received to date. S. Malik,principal of the Modern Public Inter Collegein Lucknow, notes in applauding the effort:“The health awareness program was praise-worthy and the students have started taking

The ability to break through lack ofknowledge and misunderstanding abouthepatitis is seen as the first step inbreaking the cycle of the disease andits ripple effects on populations affected.

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precautions against this disease.” Hemlata,a student at St. Mary’s Inter College, agrees,observing: “The programs conducted in ourschool were interesting as they provided uswith practical information on health issues. Themessage now goes to the parents through us.”

A second program in India, based at theChristian Medical College of Vellore, initiallytargets 15 mission hospitals to increase aware-ness among health care workers and surround-ing schools utilizing technology and distancelearning by linking them to senior medicalexperts in the field. The program focuses onteachers in schools and universities as wellas on medical institutions and advocates forvaccination of school children. The aim is todevelop capacity at participating mission hos-pitals to carry out public awareness campaignsabout HBV in localities across India.

In China, though a partnership with the ChinaFoundation for Hepatitis Prevention andControl (CFHPC), populations who are bene-fiting include primary school children and theirteachers in two hard-hit provinces in westernChina. The CFHPC is focusing on students inseveral counties in Gansu and Ningxia, whereinfectious HBV rates are higher than in mostother parts of China, primarily as a result oflack of knowledge about this viral infection,poor sanitation and fewer health care resources.In Guyuan City, the project area in Ningxia, withan infection rate estimated at over 65 percent,of greatest concern are children between ages 5and 10 who have not benefited from infant vac-cination programs. In Gansu, HBV incidenceranks second in the nation. Information abouthepatitis comes mainly from teachers, whothemselves require more knowledge abouthepatitis treatment and support.

The Foundation-sponsored program expects toreach nearly 500 schools, more than 125,000

primary school students and more than 6,000 teachers.Schools in Beijing also are being targeted to gain addi-tional learnings and help spur nationwide awarenessefforts. Bristol-Myers Squibb has worked alongside theCFHPC since 2002, partnering on a number of hepatitisawareness and prevention projects.

Says Madam Wang Zhao, CFHPC deputy director: “Inrural locations of western China, lack of HBV knowledgeresults in great economic burden to local families andsociety. With the support of the Bristol-Myers SquibbFoundation, thousands of people, including women ofreproductive age, medical workers and primary schoolstudents, have already benefited from hepatitis educa-tion. We appreciate the responsibility the Bristol-MyersSquibb Foundation has taken to share hepatitis preven-tion and control with China’s government.”

In addition, Bristol-Myers Squibb China providedfunding to the CFHPC for a University Poster DesignCompetition in some 100 colleges to enhance hepatitisdisease awareness among young students. The themeof the posters was “Care about Liver, Care aboutHealth.” Winning entries are being used widely invarious hepatitis prevention and control programs.

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Christian Medical College of Vellore in partnership with15 other Mission Hospitals (2007-09): Develops a spe-cial tele-link network and distance education programsat the College, in south India, and at Christian missionhospitals across India, to increase HBV awarenessamong health care workers, teachers and students.

The HOPE Initiative (2007-10): The B-Rodh projecttargets school children, their families and local healthcare providers through 1,000 schools in Uttar Pradesh,India, to raise HBV awareness and general health educa-tion using a “child-to-community” approach to changeexisting attitudes and practices.

China Foundation for Hepatitis Prevention and Controlin partnership with Gansu Centre for Disease Control(CDC), Ningxia CDC & Beijing CDC (2008-10): Createsgreater HBV awareness and new prevention programsinitially to reach hundreds of primary schools andthousands of students and teachers in hard-hit areasof western China and in Beijing, and through them,their families and communities.

China Foundation for Hepatitis Prevention and Control(2006): Students from 100 Chinese universities partici-pated in a poster design competition to raise HBVawareness around the “Care about Liver, Care aboutHealth” theme, with winning entries used in preventionand control programs.

GRANTS

The HOPE Initiative in India mobilizes for HBV awareness through a “child-to-community” approach.

Hepatitis preventionOnce people become more aware abouthepatitis infections, the next step is to createprograms that encourage prevention, acornerstone that is embedded in all grants.

The grants target specific at-risk populations, often in areasdisproportionately affected by the disease.

For example, a Shanghai Charity Foundation program in Chinathat focuses on health care worker training includes elementsto teach 1,800 health professionals about self-protection andoccupational hepatitis B prevention. It also provides vaccinationsfor some 1,800 health care workers most at risk.

In Tripura, in northeastern India, aboriginal groups make upabout a third of the population. And while in the state overall,hepatitis B prevalence hovers at around 4-5 percent, amongaboriginal populations, it is 12-15 percent. Especially at riskare newborns and children under 10.

In the Chinese provinces of Gansu and Shaanxi, mother-to-child trans-mission of hepatitis has remained a concern, with most hepatitis Bcarriers infected as infants. And while vaccination is an effective wayto prevent infection, immunization rates of children vary greatly acrossChina, in part because awareness among childbearing women inrural areas remains sub-optimal. The China Foundation for HepatitisPrevention and Control developed a program in 2006 to help preventmother-to-infant transmissions and increase vaccination rates, focus-ing on women, ages 15-49, in six poor counties.

The result? An independent evaluation concluded that HBV-relatedknowledge among both local health care providers and women ofreproductive age improved significantly and that educational interven-tions improved the rate of timely administration of the first dose ofthe hepatitis B vaccine to newborns by over 90 percent. What’s more,the rate of vaccination of children with three doses rose from about75-80 percent to over 90 percent in two of the counties studied.

This rural women’s project built on earlier health educationefforts under a Foundation-funded Rural Childhood HepatitisVaccination project. That pilot included education of patientsand health care providers, free screening of women 18-35 yearsof age, free vaccinations of uninfected women and their newbornsand counseling of women infected with HBV.

Hepatitis Foundation of Tripura (2007-10):Using a corps of 1,000 volunteers, createscommunity-based interventions to supportearly detection of hepatitis B, enhanceawareness among the general population,and build capacity and training about thedisease among local health care providersand community health volunteers. Theproject offers daily education sessions forlocal communities about hepatitis and runsweekly HBV vaccination clinics in 26 loca-tions throughout the state. Health campsand community outreach programs supportimmunization programs. The grant alsohas helped open four new hepatitis Bclinics in underserved areas.

China Foundation for Hepatitis Preventionand Control, Gansu CDC & Shaanxi CDC(2006-08): Created educational interven-tions among rural women of reproductiveage in Gansu and Shaanxi provinces toincrease awareness of hepatitis B as well asvaccination rates for newborns and children.The project was the first of its kind lookingat community-based education as a wayto help prevent mother-to-children HBVinfection transmission.

Shanghai Charity Foundation & ShanghaiCDC (2007-10): A component of a grantfor migrant workers as nursing aides edu-cates health care and medical workers inhigh-risk areas and provides vaccinations,including for those responsible for wastemanagement.

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GRANTS

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Other campaigns also are working. In 2002, the Hepatitis Foundation of Tripura(HFT) first launched an HBV awareness and immunization campaign usingcommunity volunteers – teachers, government officials, medical doctors andother professionals. But their activities were ad-hoc, the HFT reports, until 2007when the Bristol-Myers Squibb Foundation supported more structured communityoutreach and mobilization campaigns.

HFT’s Dr. Pradeep Bhaumik tells of the interventions’ impact in the village ofBhagalpur, 20 kilometers from the capital of Tripura. Earlier in 2008, two peoplefrom the village died of jaundice. HFT was invited by local officials to provide educa-tion about hepatitis and the jaundice that might result. It used resources providedby the Bristol-Myers Squibb Foundation to support a community awareness event.Some 400 people packed into the village’s community center. Dr. Bhaumik says,“To our utter surprise one of the schoolteachers stood up and declared that shewould sponsor the cost of vaccinating 100 poor children from that area. This is thefirst time we experienced such an initiative from a teacher, who was using about aquarter of her salary for a month for this cause.” That same day, after the presenta-tions, people started requesting vaccinations with 640 people (including some 371children) vaccinated. “The experience,” he adds, “indicated a spreading ray of hopeand confidence that, yes, we could do it and that we will do even better in the future.”

“To our utter surprise

one of the schoolteachers

stood up and declared

that she would sponsor

the cost of vaccinating

100 poor children

from that area. . .”

The Hepatitis Foundation of Tripura, India, operates weekly HBV vaccination clinics.

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Operational research

Every grant from Bristol-Myers Squibb carries a monitoring andevaluation component, where results are assessed by grant recipi-ents and independent third parties. Conclusions and recommen-dations are proactively shared widely to inform similar effortsin the future.

For instance, as early as 2002, the Foundation supported a two-year vaccination education program by the China Foundation forHepatitis Prevention and Control (CFHPC) in six rural counties innorthwestern and central China, an area that encompassed some2.4 million people, by focusing on local health care professionalsand physicians. China’s leading health experts trained representa-tives of health departments, centers for disease control, local med-ical schools and hospitals. Those trained, in turn, educated 2,000local doctors and health care professionals. These doctors theneducated their patients, encouraging them to have newborns vacci-nated and to receive proper follow-up care. Prior to this program,the vaccination rate among newborns in the six counties was30-40 percent. At the program’s conclusion, the rate had risen to90 percent or more. Its success and the lessons learned informedthe Chinese Ministry of Health and were used in other provinces.

Based on this model, the CFHPC engaged key opinion leaders todevelop a comprehensive strategy to combat the escalating healthchallenge of hepatitis B infection, supported by another Bristol-Myers Squibb Foundation grant. This “White Paper” outlinedthe current and emerging health challenges of HBV infection,projected consequences for individual patients, communities andthe nation as a whole, as well as described the need for aggressiveinterventions to prevent an escalating health crisis. The paperstated the importance for all stakeholders – policy makers, healthadministrators, health care professionals, counselors and privatecaregivers – to take full advantage of dedicated programs offeredto prevent further infection. Also, a CFHPC advisory board devel-oped guidelines for prevention and intervention programs with

Bristol-Myers Squibb Foundation programsnot only provide a service to beneficiaries,but many also serve as demonstration modelsthat offer replicable lessons, and generatedata to add to the body of knowledge andinform public policy.

China Foundation for Hepatitis Preventionand Control (2002-05): Vaccination educa-tion program in six rural counties in north-western and central China trained morethan 2,000 local physicians and health careworkers, resulting in vaccination rates fornewborns rising from 30-40 percent tomore than 90 percent in some areas. A pub-lic health strategy on hepatitis B awarenessefforts was developed to assess how toproceed in China.

National Liver Foundation and the Federationof Bombay Blood Banks (2007-08): Counselsblood donors in Bombay who may test posi-tive for hepatitis B or C but do not receivefollow-up care and support. Results of thispilot are expected to inform a new nation-wide strategy and policy to help blooddonors testing positive for hepatitis.

GRANTS

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a focus on research and education of rural as well as urbanhealth care providers.

More recently, in India, a Foundation grant to the National LiverFoundation and the Federation of Bombay Blood Banks hopes tohelp develop new operational approaches that can be incorporatedinto health and societal practices for blood donors on a nationwidebasis. A demonstration project aims to counsel blood donors inBombay who may test positive for hepatitis B or C, but neverthelessdo not currently receive follow-up support and counseling.

Routine testing at blood banks and community blood donationdrives often collect samples that test positive for hepatitis B andC. And while these donations are discarded and therefore do notenter the blood supply, donors of infected samples are not toldabout their status and therefore receive no follow-up care andsupport. Thus, opportunities are missed for early detection,proper management and prevention for this group and those atrisk of infection. The grant supports the creation of counselingprotocols and a referral system. In addition to improving aware-ness about hepatitis B and C among the 200,000 blood donorsin Bombay’s 40 blood banks, the project will deliver a trainingmanual for medical social workers and physicians on pre- andpost-donation counseling on hepatitis B and C. It also will explore

the logistics of confirmation testing andcounseling donors. Initially, confirmationtesting and counseling will be supportedfor some 4,000 HBV positive donorsand some 1,200 donors who test positivefor HCV. And counseling to partners orspouses and HBV vaccinations will beoffered where appropriate.

Dr. Piyush Sharma of the National LiverFoundation relates a story to illustratehow such programs can help restorehope. Geeta and Mahesh (not their realnames) decide to enjoy their one-yearcourtship period before their marriageto get to know each other better. But,at a blood donation camp, they discoverthat Geeta’s blood is not acceptable;she tested positive for hepatitis C. In atraditional society like India’s, this wasreason enough to call off the marriage.Instead, National Liver Foundationcounselors supported by a Bristol-MyersSquibb Foundation grant counseledthe couple, their parents and other rela-tives so they could better understandGeeta’s situation and what could bedone. She also received psycho-socialand medical counseling.

“It is heartwarming to know that youhave made a positive change andtouched lives that were falling apart,”Dr. Sharma writes. “The help extendedby the Bristol-Myers Squibb Foundationis invaluable. It has allowed us to lookinto the lives of many Geetas andMaheshs and reassure them regardingtheir future. It has replaced despair anddoubt with hope and reassurance.”

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Disease education and managementHealth care workers, both lay andprofessional, are critical players inthe fight against hepatitis.

Since rural populations often are at the greatestdisadvantage in accessing health care resources,efforts that can enhance their resources throughadditional training and education have thepotential to make a real difference in their lives.In addition, new approaches to encourage earlytesting to detect disease are required. Healthcare workers play a pivotal role in all theseareas. The Bristol-Myers Squibb Foundationhas supported development of such resourcesand programs and the creation of innovativeapproaches for training and for disease educa-tion and management.

For example, in India, is it well recognized thatlocal health care workers are often the mostimportant sources for care, knowledge andawareness of a variety of health issues. However,liver disease and HBV awareness among theseworkers requires significant improvement withnew approaches needed. Similarly, in China,according to the China Foundation for HepatitisPrevention and Control (CFHPC), better trainingof rural health workers could make a significantdifference in improving vaccination rates andhelping increase awareness among women ofchildbearing age. In addition to rural areas,there are challenges elsewhere that require betterdisease education and management. In China’sbiggest cities, migrant workers, who oftenseek to become nursing aides in large cities likeShanghai, represent an opportunity for targetedtraining in HBV. And in Japan, where HBV andHIV/AIDS have been on the rise, there is anurgent need for early detection. However, due tothe stigma associated with these diseases, peopleat risk tend not to take tests early enough.

Better equipping a vanguard of rural and layhealth care workers to fight hepatitis is a toppriority in both India and China. As part of aprogram of bringing “science to the society,” agrant to India’s Liver Foundation, West Bengal,focuses on capacity building and awarenessregarding liver disease and hepatitis B amonghealth workers. Primary beneficiaries are the“Rural Health Care Practitioners (RHCP),”lay community health workers who alreadyare first responders to health needs in villages.A Foundation-supported program is trainingthem in the basics of primary health care,mainstreaming HBV education and awarenessin their training. Other beneficiaries are profes-sional health care providers and paramedics.

Partha Mukherjee of the Liver Foundation sharesa story about one small village – Massanjore –where the population is mostly poor anddepends on untrained paramedics. “We openeda health care facility and organized RHCPtraining, which created a sensation in the localcommunity and around the state of Jharkhand,which borders West Bengal,” he says. “We alsostarted free clinics three times a week, seeingan average of 50-60 patients a day. One day,during a training session, an old lady walked in,a stick supporting her every move. She wentup to the doctor to thank us for providing thistraining. She said that she had come a longdistance to convey a simple message. ‘We havelong ceased dreaming,’ she said, ‘but will thisgood last?’ Our job, working with our partners,is to make certain it does. Today we have fourprogram offices already training 150 RHCPsin three villages and are serving about 1,800people at that new center in Massanjore.”

Partha also explains how that good work willendure. “Our Liver Foundation aims to makepeople aware of liver health so that they canprevent hepatitis,” he writes. “Year after year,

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lay health care workers offer their services to the rural poor aroundthe clock. And even though they are untrained, in a crisis theyare the most dependable healers for villagers in need. The LiverFoundation has organized training to build their health knowledge.They feel honored by the training. Ultimately, the Bristol-MyersSquibb Foundation came, joining with us, not only funding usbut also guiding us all along in our journey.”

Training is ongoing to build capacity among village health careworkers in China as well. The Bristol-Myers Squibb Foundation ispartnering with the CFHPC on a new project to provide compre-hensive training about hepatitis to 1,900 rural medical workersin Ningxia and Fujian provinces. Both provinces today are amongthose with the highest incidences of HBV infection in China. Thisproject targets village and township health practitioners who arecertified after just a short term of training and have little accessto continuing medical education. A survey in Fujian indicatedthat less than 50 percent of village medical workers know howto correctly administer the HBV vaccine. The project aims toincrease their knowledge so they can improve the understandingof HBV infection among women of childbearing age and increasethe rate of first dose HBV vaccinations for home deliveries. Inaddition to the medical workers, it is expected that some195,000 women will benefit directly.

Migrant workers in Shanghai, this time because of their potentialrole as health care workers, are also being empowered in the bat-tle against hepatitis. A grant to the Shanghai Charity Foundationaims to increase awareness, knowledge and skills among migrant

Liver Foundation, West Bengal (2007-10):“Science to Society” program coordinatesimprovements in awareness and capacitybuilding among rural health practitioners,prioritizing HBV education and advocatingagainst unnecessary and unsafe injections.The program also runs sessions in collegesand health facilities.

China Foundation for Hepatitis Preventionand Control, Ningxia CDC & Fujian CDC(2008-10): Provides comprehensive HBVknowledge and education to 1,900 ruralmedical workers in Ningxia and Fujian,aimed at improving the understanding ofHBV among women of childbearing age andincreasing the rate of first dose vaccinationsfor home deliveries. This program also enlistsvillage women leaders as an educationalchannel to reach young women.

Shanghai Charity Foundation & ShanghaiNursing Association (2007-10): Createsawareness programs for high-risk groupsin Shanghai by training 10,000 migrantworkers serving as nursing aides in hospitalsas well as local health care workers.

Japanese Foundation for AIDS Prevention,Japanese Ministry of Health, Labor andWelfare & Osaka Prefecture Government(2007-09): Establishes a testing roomin Osaka for two diseases – HBV andHIV/AIDS – as a demonstration project tofoster early detection and treatment whileutilizing new approaches to reduce stigmaand develop best practices.

GRANTS

Home care: The Christian Medical College's community nurses in Vellore, India.

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workers who serve as nursing aides in the city’s 400 hospitals.This training will not only help migrant workers obtain basicknowledge of HBV prevention, but also will develop their healthcare skills, positioning them for better job opportunities as laynursing workers. Trained migrant workers also are expected topromote HBV awareness and prevention among their familiesand communities. Says Kitty Xia, executive deputy secretarygeneral of the Shanghai Charity Foundation: “There are millionsof migrant workers in Shanghai and most of them have little edu-cation. The need for job training for these newcomers is urgentand preventing infectious diseases among them is really challeng-ing. I am proud of this initiative’s ability to combine job trainingand hepatitis B prevention. We have done it through our love,care and devotion. What’s more, most trainees have found jobsas nursing workers and their understanding of hepatitis B hasbeen greatly enhanced.”

And in Japan, the Bristol-Myers Squibb Foundation and Bristol-Myers KK have partnered with the Japanese Foundation for AIDSPrevention, the Japanese Ministry of Health, Labor and Welfare,the Osaka Prefecture government and other NGOs to create a pilotvoluntary counseling and testing (VCT) program – a Test Room –offering both HIV/AIDS and HBV testing services. Located in

“In rural locations of western

China, lack of HBV knowledge

results in great economic burden

to local families and society.”

Osaka, Japan’s second largest city, thisdemonstration project is a drop-in centerand the first to partner with governmentand NGOs in Japan to prioritize HBVVCT. It also offers outreach and educa-tional services to high-risk groups. Testingbest practices for early detection andeducation, partner NGOs have providedcounselors in HBV, and the Osaka gov-ernment has assigned a doctor on-sitededicated to HBV testing and counseling.

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