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Hepatitis B Advocacy

Creating a #HepBFree Future in Arizona

Layal Rabat, Empowerment and Advocacy Manager at Asian Pacific Community in Action (APCA), provides an inside look into APCA’s hepatitis B efforts in Arizona.

Asian Pacific Community in Action (APCA) was formed in 2002 to meet the health-related needs of Asian Americans and Native Hawaiian and Pacific Islanders (AA & NHPI) residing in Arizona. Our vision is to inspire diverse communities to seek healthier futures. Our mission is to provide services, advocacy and education for diverse communities to help create a healthier and more empowered population seeking good health. In addition to hepatitis B testing, education, and referrals, APCA’s programs include Oral Health Advocacy, Advocacy Training, Policy Work, , Messaging/Storytelling , the Affordable Care Act, Medicaid, SNAP enrollment assistance, Civic Engagement, and Pop-up Health Fairs & Clinics.

Engagement Through Storytelling 

Over the years, we’ve prided ourselves on our creativity and thinking of ways to connect with communities through arts and innovative practices. This has led to the creation of  #HepBGirl and the HepBoo basketball fundraiser to support our hepatitis B efforts.

APCA’s most recent work has been centered around a mini-grant project generously funded by Hep B United – a national coalition to address and eliminate hepatitis B. The goals of the mini-grant were to help establish or contribute to hepatitis B prevention, education, linkage to care, and surveillance on a local level. APCA focused on education and empowerment by implementing the Hepatitis B Foundation’s (HBF)  #justB storytelling campaign into the community.

The project timeline was based on the recruitment of storytellers, conducting storytelling events, and conducting the analysis. The biggest lesson learned is that recruitment can take the most time out of all of the goals. We were aware of the stigma around talking about the infection and wanted to conduct our work in an ethical, sensitive way. To do this, we worked with a provider who helped by offering the opportunity for their patients to share their experiences. The patients could then choose whether to contact us or not. We also assured those that chose to speak that we would not publish any of the stories without their explicit approval and consent. To respect participant time and efforts and reduce the labor required of them for the event, APCA took great care to do as many of the preparations as possible, simplify the questions being asked, and conduct the events in a manner that respected their emotional labor and centered their explicit consent.

Hepatitis B In Arizona

Centered upon vulnerable populations such as older Asian American and Pacific Islander (AAPI) adults who were born before certain vaccine policies, APCA’s hepatitis B work includes addressing policy issues, access to care, and direct services. Direct services around hepatitis B included screenings, vaccinations, and referrals to care and treatment. In the past, APCA tested 2,869 people and found that 6.7% had active hepatitis B infections. An additional 31.2% were not vaccinated.                                                                                     

Arizona’s hepatitis B story mirrors that of the United States overall. From 2006 – 2015, an average of 979 chronic hepatitis B and 128 acute hepatitis B cases were reported each year in Arizona, though there has been a decrease in the number of acute hepatitis B cases identified in recent years. 
The rate of new reports of acute hepatitis B was highest among persons aged 40-44 years. Chronic hepatitis B rates were highest among those 30-34 years. 
The average annual rate of hepatitis B infection among Asians/ Pacific Islanders was much higher than other racial/ethnic groups (1,2). 

Looking Towards the Future

The mini-grant opportunity will help to launch #HepBFreeArizona – a campaign aimed at eradicating hepatitis B in the state. We hope to continue working with those that shared their stories to help build our future hepatitis B program and get it to a level where we can provide a space for patients living with hepatitis B to lead the way. The same barriers that prevent community members from accessing care also hinder their efforts to get involved in advocating for the policy changes that will alleviate those barriers. We are always learning how to balance community member autonomy and valuing their labor with respect to the time and effort they contribute and not taking more than we are giving.

Thank you to Layal Rabat for serving as our guest blogger this week! If you would like more information from Layal or the Asian Pacific Community in Action, please visit their website or contact them here.

 

Layal Rabat is a third culture kid who has spent years practicing the fine art of parachuting into projects as the need for her skills arises. She takes an intersectional approach to her work and does not shy away from any cause where injustice is present and her contribution is welcomed and necessary. Her experience lies in project management, traditional and digital communications using all mediums from her own voice to videos to writing to tweeting, assembling audience-specific information for delivery in an infinite amount of ways. An infinitely curious researcher and an obsessive collector and assembler of information, she is often seen playing a supportive role in the background and amplifying the voices of those directly affected by injustice in her community. Fluent in English & Arabic, intermediate in Spanish & knows a tiny bit of Armenian. Current issues are immigrant rights and public health. With a BS in Psychology & an MA in Social Justice & Human Rights, she is currently working as the Empowerment & Advocacy Manager at the Asian Pacific Community in Action, and volunteering her time as IT/Web & Social Media Coordinator at Phoenix Allies for Community Health. She also volunteers with the Restoration Project, Phoenix, and serves as a board member with Sonoran Prevention Works. In her spare time, she enjoys listening to music (& karaoke), reading, writing, photography, and traveling.

 

References

  1. 2016, Viral Hepatitis Epidemiologic Profile for Arizona
  2. 2016, Arizona Department of Health Services

 

Hepatitis B Advocacy, Hepatitis B Prevention

In Rural Villages Across India, an Everyday Hero Works to Eradicate Hepatitis B

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Villagers-attend-an-education-class-to-learn-how-to-prevent-hepatitis-B.-300x169
Villagers in India attend an education class to learn how to prevent hepatitis B.

By Christine Kukka

India has one of the highest hepatitis B infection rates in the world. An estimated 40 percent of all hepatitis B deaths worldwide occur in India each year, and about 3 percent of its 1.25 billion residents – about 40 million — are chronically infected.

This liver disease wrecks medical and emotional havoc in India. People diagnosed with hepatitis B struggle to attend schools, advance professionally, and even marry due to the ignorance and stigma surrounding this infection.

Like many countries, India’s government is struggling to find resources to screen, immunize, and treat the millions of people affected by hepatitis B. But some people, including Surender Kumar and Sandeep Godara of New Delhi, are not waiting for the government to eradicate hepatitis B.

The two men have created a nonprofit organization called Rann Bhoomi Foundation and enlisted support from various organizations and pharmaceutical companies to raise awareness about hepatitis B in some of the poorest slums and rural regions of India. Increasingly, advocates like Kumar and their grassroots army of volunteers and staff are needed to combat hepatitis B globally.Government initiatives to screen people for hepatitis B, immunize those at risk, and infected people into treatment have been woefully under-funded. Public health campaigns need resources, vaccines, and the ability to screen people—especially pregnant women to make sure their newborns are immediately immunized at birth–to prevent a new generation of hepatitis B infections.

These campaigns need medical supplies and staff, but they also require knowledge about hepatitis B, compassion and an understanding of local customs to be effective. “I found out in 2010 that I was infected,” Kumar, a 34-year-old human resources executive, explained.

His brother had tried to donate blood at work and was told he was infected. He told his family about the results and encouraged them to be tested. Kumar and his mother discovered they too were infected. “On that same day, I decided to raise awareness about this silent killer in rural as well as urban areas,” he said.

“There is little awareness among people about this disease in rural areas of India as individuals often do not feel sick for many years,” Kumar explained. “I knew we needed a mass awareness program to teach people how to prevent this.”

 

Surender-presentation-300x200
Surender Kumar of the Rann India Foundation teaches villagers about hepatitis B prevention in India.

Their campaign provides education, screening and immunization to people during village meetings, special events and cultural programs in 120 villages. “This helps us create a database of all the people in the area, we divide the screened people into two groups, one group that tests positive for hepatitis B and other with a negative result,” he said.

They sponsor immunization campaigns in collaboration with government programs and use donations from pharmaceutical companies for all who test negative for the hepatitis B surface antigen (HBsAg), which indicates they are not currently infected. They refer infected people to the local government hospital for treatment and monitoring. As part of the campaign, the initiative trains local peer educators who continue to raise awareness about hepatitis B after Kumar’s initial education campaign.

The need for this work is critical in India, and at first glance this appears to be an impossible task given the lack of awareness about how hepatitis B is spread and prevented and the enormity of the need. Despite the insurmountable odds, Kumar is intent on working to “defeat” hepatitis B in his country.

Instead of waiting for change, Kumar and Godara are hepatitis B heroes working to save lives and raise awareness. You can contact him by email at:surendersharma19817@gmail.com

 For another look at how people in India are fighting stigma and discrimination against people with hepatitis B, view Bollywood star Amitabh Bachchan’s video here.

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Liver Cancer

It’s Hepatitis Awareness Month: Five Reasons We Don’t Get Tested, and How to Overcome Them

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Members of Drexel University's Asian Pacific American Medical Student Association participate in a hepatitis B screening program at a Chinese Christian church in Philadelphia.
Members of Drexel University’s Asian Pacific American Medical Student Association participate in a hepatitis B screening program at a Chinese Christian church in Philadelphia.

May is Hepatitis Awareness month. Why do we need an annual reminder about hepatitis B? Because 65 percent of the estimated 2.2 million people in the U.S. living with hepatitis B don’t know they’re infected.

Studies show when people know their hepatitis B status, they’re more likely to get monitored regularly, get treatment, and take steps to avoid passing on the disease to partners and their children.

So why are so many Americans unaware of their hepatitis B infection? Here are five roadblocks that stop us from getting tested for hepatitis B, and what how we can do to overcome them.

We feel fine, so we assume we’re not infected. Hepatitis B rarely causes symptoms. There are very few sensory nerves around the liver, so when a viral hepatitis infection strikes, we rarely feel its effects. As a result, most of us – especially if we were infected as children or newborns – never experience any symptoms for decades. So remember, “feeling OK” is no excuse to avoid testing. Continue reading "It’s Hepatitis Awareness Month: Five Reasons We Don’t Get Tested, and How to Overcome Them" →

Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment, Liver Cancer, Living with Hepatitis B

Know Your Rights: If You Suffer Severe Liver Damage from Hepatitis B, You May Qualify for SSDI or SSI

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Image courtesy of Stuart Miles at FreeDigitalPhotos.net
Image courtesy of Stuart Miles at FreeDigitalPhotos.net

The majority of people infected with hepatitis B lead healthy and normal lives. However, a small number of people may develop liver disease that will dramatically affect their quality of life and their ability to work on a short-term or long-term basis.

They may not be able to work for several weeks because of side effects from pegylated interferon treatment, or progressive liver damage could make it impossible to work and support themselves and their families even after treatment.

Below is information that can help you, your family members, or someone you advocate for apply for disability benefits to help them during when they can’t work due to hepatitis B-related health problems. The first step is to find out if you can meet the Social Security Administration’s (SSA’s) medical eligibility requirements to receive disability support. Continue reading "Know Your Rights: If You Suffer Severe Liver Damage from Hepatitis B, You May Qualify for SSDI or SSI" →

Hepatitis B Advocacy, Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention

“Hepatitis on the Hill” Advocates Fight for Hepatitis Prevention, And So Can You

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Hepatitis on the Hill advocates, March 2016.
Hepatitis on the Hill advocates, March 2016.

On Tuesday, March 8, more than 120 advocates from across the U.S. fanned out on Capitol Hill to talk to their representatives about the importance of funding the Viral Hepatitis Division of the U.S. Centers for Disease Control and Prevention (CDC). Dozens of people laid their hearts on the line and told their stories about how they, their families, and friends have been touched by hepatitis.

In meetings with Congressional staff, and in some cases their senators, they shared stories about family members who discovered they had hepatitis B only when they were diagnosed with late-stage, inoperable liver cancer. Others talked about how lucky they were to have been immunized at birth, considering their mothers were infected. Courageous advocates described losing loved ones to hepatitis B and C spread through the heroin epidemic, and recalled indifferent healthcare workers who saw only addicts instead of human beings who had  lost their battle with both addiction and hepatitis.

Our goal was to get our representatives to allocate more funding for CDC’s hepatitis division, which is sorely needed. It’s CDC’s job to investigate disease outbreaks and educate the public and healthcare providers about infectious disease. For example, CDC publishes a variety of reports and promotional materials to educate people how to protect themselves against hepatitis B and C. The agency also funds a “hepatitis coordinator” in nearly every state whose job it is to help prevent hepatitis, investigate outbreaks, and collect data—a Herculean task for just one person. Continue reading "“Hepatitis on the Hill” Advocates Fight for Hepatitis Prevention, And So Can You" →

Hepatitis B Advocacy, Hepatitis B Prevention, Living with Hepatitis B

The Ugly Intersection of Prejudice, Immigration, and Hepatitis B

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By Christine Kukka

Image courtesy of xedos4 at FreeDigitalPhotos.net.
Image courtesy of xedos4 at FreeDigitalPhotos.net.

A few weeks ago, an ill-informed New England governor proclaimed illegal immigrants were bringing in infectious diseases, including hepatitis, HIV, and tuberculosis. Recently, similar anti-immigration, fear-mongering from presidential candidates has filled the airways.

For hundreds of years, disease has been used as reasons to stop immigration to the United States. During the early 1800s, officials claimed the Irish brought cholera into the country. The Italians were believed to carry polio and tuberculosis was called the Jewish disease. In 1900, the Asian-American community in San Francisco was believed to be infected with bubonic plague that posed a threat to public health. Residents were subjected to mandatory injections with an experimental drug until a court order halted the local public health campaign.

Throughout the 19th and 20th century, “politics was saturated with attacks on immigrants as diseased intruders to the body politic,” wrote American University history professor Alan M. Kraut in Foreign Bodies: The Perennial Negotiation over Health and Culture in a Nation of Immigrants. This dialogue led to revision of the 1882 Immigration Act to exclude, “persons suffering from a loathsome or a dangerous contagious disease” from entry into the United States. Continue reading "The Ugly Intersection of Prejudice, Immigration, and Hepatitis B" →

Hepatitis B Diagnosis & Monitoring, Hepatitis B Treatment

Buyer Beware: When Someone Claims to Have a Hepatitis B Cure, It’s a Counterfeit Drug

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Image courtesy of africa, at FreeDigitalPhotos.net
Image courtesy of africa, at FreeDigitalPhotos.net

Twenty years ago when I found out my daughter had chronic hepatitis B, I would’ve purchased any drug I could find to cure her.  I asked her doctor if she could join a pediatric clinical trial for lamivudine. I just wanted her cured as soon as possible. Fortunately, cooler heads prevailed.

My daughter didn’t need treatment then, and she doesn’t need it today. Her doctor was wise enough not to try an antiviral with an unknown track record that was later found to cause high rates of drug resistance. It would have caused more harm than good.

When we want hard to believe in something—especially a medicine that is advertised to cure hepatitis B–we end up listening to our hearts and not our heads.

Many people touched by hepatitis B around the world don’t have an expert to be the voice of reason and wisdom when they hear about false, counterfeit, or untried treatments for hepatitis B. Sadly, there is a steady increase in false marketing claims on Facebook and other websites using testimonials and marketing ploys to sell a counterfeit hepatitis B cure to we who are vulnerable, frightened, and desperate for a quick cure.

We at the Hepatitis B Foundation know this all too well. The public can post on our Facebook and blog pages. Often, unscrupulous people pitching ineffective cures will try to post a personal claim endorsing some doctor’s or herbalist’s new cure. Here’s a recent, verbatim example of a post to our Facebook page:

“Just wanna express my moment of joy for (having) been cured from the deadly HEPATITIS B.  I have been infected with the Disease over three years and already lost hope (because) I have already tried so many ANTIVIRAL treatment…. one day while making more research online, I came across a testimony of a patients Dr … cured from GENITAL HERPES and I decided to give the said doctor a call….”

As you might expect, the writer claims to have been miraculously cured by the doctor using an antiviral drug called hepantivir, for example. But this drug has no scientific credentials. It has never been studied or tested or reported on in medical journals. But “experts” promise it will cure hepatitis B for $800.

We at the foundation remove these posts as soon as we discover them. These herbal supplements and counterfeit drugs can look very official, with medical-sounding names and packaged to appear like true pharmaceutical products.  The advertising often features a photo of a doctor to appeal to a local audience. But they’re fake, and some of these “products” can even make you sicker than before you started the alleged, miracle drug.

In 2013, a study by the United Nations Office on Drugs and Crime that focused on Africa and South-East Asia suggested the counterfeit drug market in Africa was worth about $4 billion (USD).  A report found that in 2009, in Nigeria, 60 out of 225 (27 percent) antimalarial medications failed chemical analysis, and in Ghana, 14 out of 17 (82 percent) antimalarial drugs followed suit.

Their deceit is cruel and criminal, especially when it targets frightened people who may have no access to treatments or advice. In the U.S., drugs must be approved by the U.S. Food and Drug Administration. To win that approval, randomized, clinical trials that compare outcomes of treated patients to untreated patients (the control group), are needed to prove a drug actually does helps people. This is the gold standard of medical evidence.

That careful FDA review does not, however, apply to herbal supplements. One day, some of these supplements may indeed be found to have beneficial effects to protect the liver against hepatitis B after rigorous study and experiments. But that research hasn’t happened yet.

The U.S. National Institutes for Health has published a directory about what scientific research has discovered about common herbal supplements. Probably the most popular herbal supplement pitched as a liver remedy is milk thistle, and its extract silymarin. The NIH milk thistle report found, “Previous laboratory studies suggested that milk thistle may benefit the liver by protecting and promoting the growth of liver cells, fighting oxidation (a chemical process that can damage cells), and inhibiting inflammation. However, results from small clinical trials of milk thistle for liver diseases have been mixed, and two rigorously designed studies found no benefit.”

A true scientific evaluation is what we need to hear, even when we desperately want milk thistle or another supplement to be the cure. There is no magic bullet that is going to cure hepatitis B. It is a complex infection with no cure at this time. Experts are making great strides and hope to find a cure in the next few years, but now, this is the time to let our heads make healthcare decisions, instead of our vulnerable and hopeful hearts.

So be patient. Don’t fall for false promises, even when they’re accompanied by professional-looking photographs and emotional testimonials. If it sounds too good to be true, it probably is.

More information about counterfeit medications:

Quality Matters: Battling the Epidemic of Illegal Online Drug Sellers and Counterfeit Medicines  Of the 35,000-50,000 active online drug sellers, 97 percent do not comply with U.S. laws and 50 percent of medicines sold online are fake or counterfeit, according to the Alliance for Safe Online Pharmacies (ASOP Global), an international non-profit headquartered in Washington, D.C. with operations in Europe and Asia.

These counterfeit medications are often manufactured in unsafe conditions; contain too little, too much or no active pharmaceutical ingredients; and, in many cases, have been found to contain dangerous substances like floor wax, rat poison, concrete, chalk, boric acid, road tar, paint, anti-freeze, and other toxins. This means that consumers worldwide are just a click away from buying products that may cause harm, treatment failure or even death. Read more…

Fight the Fakes Campaign:  Fight the Fakes is a campaign to raise awareness about the dangers of fake medicines. The campaign gives a voice to those who have been personally impacted and shares the stories of those working to put a stop to this threat to public health. It seeks to build a global movement of organizations and individuals who will shine light on the negative impact that fake medicines have on people around the globe and to reduce the negative consequences on individuals worldwide.

As part of this effort, Fight the Fakes is collecting and sharing the stories of those who are impacted by fake medicines and are speaking up. The website also serves as a resource for organizations and individuals who are looking to support this effort by outlining opportunities for action and sharing what others are doing to fight fake medicines.

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention

First World Hepatitis Summit Focuses on Global Plan for Elimination by 2030

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The joint North and South Americas group build relationships across borders to eradicate hepatitis B.
The North and South Americas group builds relationships to eradicate viral hepatitis.

The mood was euphoric. It was a love fest, actually. Last week, more than 600 policy makers, public health experts, and representatives from non-governmental organizations and patient advocacy groups from 80 countries were invited to participate in the first World Hepatitis Summit in Scotland hosted by the World Hepatitis Alliance in partnership with the World Health Organization (WHO). The Hepatitis B Foundation was pleased to be invited and to speak during the pre-summit meeting as well.

The message was serious. Hepatitis B and C kill more people each year than HIV/AIDS and tuberculosis, and combined are the seventh-leading cause of death worldwide, yet viral hepatitis as a global health concern remains mostly invisible and under-funded. Continue reading "First World Hepatitis Summit Focuses on Global Plan for Elimination by 2030" →

Hepatitis B Treatment, Living with Hepatitis B

The Hepatitis B Patient Community Loses Its “Mom”

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Hep B List "parents" Sheree Martin and Steve Bingham at a 2005 patient conference.
Hep B List “parents” Sheree Martin and Steve Bingham at a 2005 patient conference.

The hepatitis B community recently lost its much-loved advocate, resource and “mom,” Sheree Martin. She was co-owner of the Hepatits B Information and Support List from 1998 to 2011 and comforter and consultant to thousands of people around the world who live with hepatitis B.

The reach of her kindness and wisdom cannot be under-estimated. In the early days of hepatitis B, when medical treatment was misguided and stigma ran rife, Sheree nurtured a safe, online community that provided reassurance and accurate medical information. For many, it was the first time they were able to share the confusion, loneliness and frustration of living with chronic hepatitis B with people just like them. Continue reading "The Hepatitis B Patient Community Loses Its “Mom”" →

Uncategorized

WHO’s New HBV Guidelines to Help Combat Africa’s Growing Hepatitis B Crisis

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The World Health Organization (WHO) will release their first management guidelines for hepatitis B virus (HBV) by the end of 2014. For the first time, the guidelines will be geared towards resource-constrained countries, where the disease burden is high but resources are lacking. The new guidelines will be particularly welcome in African nations, where the incidence of viral hepatitis is increasing.

The overall scope of the World Health Organization’s new management guidelines for hepatitis B will include prevention, screening, and treatment of chronic hepatitis B and will be geared towards resource-constrained countries. Thus, WHO’s guidelines will be valuable for countries where the disease burden is high but resources are lacking.

The WHO Global Hepatitis Programme established a Guideline Development Group of external experts in 2013, which includes Hepatitis B Foundation (HBF) executive director Joan Block, and is co-chaired by Dr. Brian McMahon, who also serves on the HBF Scientific and Medical Advisory Board.

The new WHO guidelines will be particularly welcome news to African nations, where the incidence of viral hepatitis is increasing.

According to the WHO Global Hepatitis Survey 2013, the prevalence of chronic hepatitis B virus (HBV) infection on the African continent is up to 8% of the general population, and 75% of the population may have had prior exposure to the virus.

Yet, only two of the African member states that responded to the WHO Survey have a written national strategy to prevent and control viral hepatitis.

In Ghana, where the incidence of viral hepatitis is increasing, the sero-prevalence rate is high among blood donors (6.7%), pregnant women (6.5%) and school
aged children (15.6%), according to Mr. Theobald Owusu-Ansah, president of the Theobald Hepatitis B Foundation and the Hepatitis B Coalition in Ghana.

Compounding the lack of public health plans and national investment are factors common in many low-resource countries: limited awareness of hepatitis B among the public and providers, poor access to care, expensive therapies, and few liver specialists.

Global agencies are beginning to recognize the urgency of the situation. In addition to the WHO, the World Health Assembly is taking steps to combat the growing crisis. The Assembly adopted a second resolution on viral hepatitis in May 2014 that advises governments on how to prioritize and coordinate public health efforts.

But governments cannot tackle these problems alone, Mr. Owusu-Ansah believes. He urges governments to partner with commercial and nonprofit organizations to mobilize much-needed expertise and resources.

Continue reading "WHO’s New HBV Guidelines to Help Combat Africa’s Growing Hepatitis B Crisis" →

Baruch S. Blumberg Institute