Hep B Blog

Category Archives: Hepatitis B Advocacy

Know Your Rights: Legal Protections for Those Living With Hepatitis B

Despite being the world’s most common liver infection, hepatitis B remains stigmatized and those living with it can still face discrimination from various sources. Each year, the Hepatitis B Foundation answers numerous calls from around the world from people who have faced school, workplace, and travel challenges due to their hepatitis B status. These challenges are typically rooted in misinformation, outdated laws or guidelines, stigma, and an overall lack of awareness. However, there are laws and organizations who will work to protect you from such discrimination!

The Hepatitis B Foundation has added a new section to our website that focuses on the rights of people living with hepatitis B. We’ve compiled information on common barriers that those living with hepatitis B may face while applying to schools, jobs, or accessing affordable medicine. Each of the below sections provides information on discriminatory practices, what you can do if you experience discrimination, and how the Hepatitis B Foundation is working to fight discrimination.

In the United States, all forms of hepatitis B related discrimination are illegal under the Americans with Disabilities Act (ADA) and the Affordable Care Act (ACA). Both laws include provisions that protect people living with chronic conditions. Unfortunately, some forms of discrimination are still legal in certain countries, but steps can sometimes be taken to appeal to immigration policies in these areas. Local organizations can also help those living in foreign countries to navigate complex laws or policies regarding those living with hepatitis B. Many of these organizations can be found through the World Hepatitis Alliance’s member list. Join them and add your voice to eliminate hepatitis B discrimination in your country.

Specific protections, resources, and ways to combat legal discrimination can be found in the Know Your Rights section of our website! If you are faced with discrimination due to hepatitis B, it is important to know your rights and to have information to support your case. Use the information on our site to help advocate for yourself, join with others, or contact the Hepatitis B Foundation at info@hepb.org if you need additional assistance.

Behind the Scenes of A Viral Hepatitis Elimination Plan in Pennsylvania

In Pennsylvania, the Hepatitis B Foundation is collaborating with various stakeholders to launch a State Viral Hepatitis Elimination Plan! Join us as we document our process from start to finish!

In this video, Michaela Jackson, MS recounts the Hepatitis B Foundation’s attendance to the first ever State Viral Hepatitis Elimination Stakeholder Planning Meeting! The meeting, which was hosted by the Pennsylvania Department of Health, brought awareness and education to the state’s lawmakers!

#Tri4ACure: From Hepatitis B Diagnosis to Advocating for a Cure

 

 

 

 

 

 

 

 

 

Meet Edwin Tan – a 29-year-old mechanical design engineer from Minneapolis, Minnesota! In 2014, Edwin was diagnosed with hepatitis B. Like many others living with hepatitis B, his diagnosis was a shock. Before his diagnosis, all he knew was that he was banned from giving blood to the Red Cross, but no one had explained the reason why. A routine blood test provided no explanations either, so his doctor decided to test for hepatitis B. The test revealed that Edwin was living with chronic hepatitis B.

After his diagnosis, Edwin decided to learn all that he could about the infection. Through his research, he found that one of the best ways to keep his liver healthy was through small lifestyle changes. Edwin began to pursue healthier life choices by increasing the amount of exercise he was getting and paying closer attention to his diet. Although he loved craft beer, he knew that drinking could be extremely dangerous to those with liver infections, so he willingly gave up all alcohol. Edwin’s dedication to a more active lifestyle led him to challenge himself by competing in local races and triathlons.

Edwin’s journey led him to realize that there is a lack of awareness about hepatitis B. He noticed that the stigmas facing those living with hepatitis B could take a physical and mental toll on an individual and impact how they viewed themselves. Edwin’s observations inspired him to reach out to the Hepatitis B Foundation to raise money and awareness for hepatitis B research, patient outreach, and education. Since his passion for racing was discovered due to his commitment to health after his diagnosis, it seemed appropriate for him to use his love of sports to fundraise for hepatitis B awareness and research! He hopes that his athletic achievements help others living with hepatitis B to realize that they are more than their infection.

Now, Edwin is training for a series of six races—triathlons, a marathon and an ironman – and we’ll be with him every step of the way! You can make a gift to support Edwin’s fundraising efforts here.

“I want to be a positive example against the stigma associated with Hep B and the shame that some people may feel for having it. Completing an Ironman, which is regarded as one of the most difficult one-day athletic events, serves as a good example that we each can accomplish anything we want as long as we believe in ourselves.”

To follow updates on Edwin’s journey, you can follow the Hepatitis B Foundation or Hep B United on Facebook. Be sure to use the hashtag #Tri4ACure!

Hepatitis B Discrimination in U.S. Medical Schools: What you Should Know

In 2013, an integral ruling by the United States Department of Justice (DOJ) took a major step towards ending one of the many forms of discrimination that hepatitis B patients face. The settlement made it illegal for medical schools to discriminate against students due to their hepatitis B status. Six years later, the words of

“Blind Lady Justice”

Thomas E. Perez, former Assistant Attorney General for the Civil Rights Division, still ring true: “Excluding people with disabilities from higher education based on unfounded fears or incorrect scientific information is unacceptable”. Unfortunately, many medical schools – both nationally and internationally – fail to acknowledge this.

Since the court settlement in 2013, we’ve received an increasing number of patient complaints regarding medical school discrimination. Some students completed all of their classes only to be told that they couldn’t participate in their clinical experience (which is a degree requirement) due to their hepatitis B status. Other students have had their acceptance to a school revoked because they tested positive for the infection. Both situations are considered illegal under the Americans with Disabilities Act (ADA).

What You Should Know:

  • You are protected by the law: Under Titles II and III of the ADA, it is illegal for entities, including schools, to discriminate against students based upon a disability like a chronic illness. In addition, institutions are required to make arrangements, policies, and procedures when needed in order to ensure that those titles are being followed.
  • You are not a threat: It is important to note that discriminatory policies are often outdated and should be unnecessary – in both schools and the healthcare field – as long as the appropriate procedures and precautions are followed.  
  • The Centers for Disease Control and Prevention (CDC) Recommendations are in your favor: In 2012, the CDC worked with us and a few other organizations to update their recommendations for managing healthcare students and workers with hepatitis B. Amongst those changes were no requirement of telling patients of a health-care provider’s or student’s hepatitis B status, using HBV DNA instead of hepatitis B e-antigen status to monitor infectivity; and, for those requiring oversight, a threshold value of HBV DNA considered “safe” (<1,000 IU/ml). They also state thatfor most chronically  infected providers and students who conform to current standards for infection control, hepatitis B infection status alone does not require any curtailing of their practices or supervised learning experiences. “

What Discrimination Looks Like:

Sometimes, schools’ discriminatory actions are obvious but oftentimes they are not. Despite direction from the DOJ and requirements in the specified in the ADA, some institutions have not created standardized arrangements or policies for people who have hepatitis B. Other schools are not aware that turning away certain students based on a disability is illegal.

Discriminatory policies by schools may include:

  • Asking students to show proof of hepatitis B surface antibodies (HBsAb)
  • Revoking acceptance to the school based upon positive hepatitis B status (HbsAg)
  • Requiring undetectable viral load or e-antigen negativity for completion of clinical rotations

As an example of a discriminatory policy, Lehigh Carbon Community College states that: “The health care agencies for clinical experiences have specific health requirements that must be met by each student. The program requires proof of personal health insurance during enrollment in the nursing program. Admission to the program may be revoked upon review of these results. (1) Positive Hepatitis B Surface Antigen (2) Titer Levels for Hep B antibody level.”

This policy does not comply with the CDC’s current recommendations and seems to be a violation of the protections afforded by the ADA. You can view this policy on page 15 of their student handbook.

A good, non-discriminatory policy should be transparent and specific. One example of this is Rutgers University. The policy is in line with, and clearly references, the CDC’s most recent guidelines and provides a clear path on how to proceed based upon each student’s infections:

“Individuals who are found to be infected with HBV shall be counseled by the Student Health Service director or Occupational Medicine/Employee Health Service director in accordance with current guidelines from the CDC.”

You can view these guidelines under section H, category 40.3.5 of their policy website.

What To Do If You Face Discrimination:

If you believe that a school is discriminating against you based on your hepatitis B status, there are a few important steps you can take. First, try to schedule a meeting with the person who is in charge of the program, such as a director. This will help to quicken the response to your message and help facilitate change. Be sure to bring these formal guideline documents with you to help build your case: the CDC’s updated guidelines and the official DOJ/ADA letter to schools regarding hepatitis B discrimination. You can even highlight the sections that apply to your case. Hopefully, the school will realize their mistake and make the necessary changes to their policy!

If the school refuses to acknowledge your lawful protections, you can reach out to us at info@hepb.org and we will assist you. You can also file a formal complaint with the DOJ.

National Public Health Week 2019: Let’s Create a Healthier World by Ending Hepatitis B

This week is National Public Health Week in the United States but this year’s theme – Creating the Healthiest Nation: For Science. For Action. For Health –  can be applied globally. Over 292 million people around the world are currently living with chronic hepatitis B, yet only 10% of patients are aware of their infection. In order to create the healthiest world possible, public health needs to address all threats to the public’s health – including those we don’t see.

How can we create a healthier world by eliminating hepatitis B?

  • Increase provider knowledge of hepatitis B – In the U.S. and around the globe, hepatitis B is often overshadowed by other infectious diseases, including HIV and hepatitis C. Because of this, there is a lot of confusion and misinformation about who should be tested and how to proceed if a person tests positive for the hepatitis B surface antigen. Educating healthcare providers about hepatitis B testing, management, and treatment, and helping providers understand the importance of helping high-risk patients know their hepatitis B status, is an important strategy. As early treatment and regular monitoring can prevent liver damage and lower a person’s risk of liver cancer, improved provider knowledge can help hepatitis B patients live long, healthy lives! Hep B United and the Centers for Disease Control and Prevention’s (CDC) Know Hepatitis B campaign has multiple resources for professionals, and the Hepatitis B Foundation lists international clinical guidelines for testing and treating patients.

 

  • Improve Vaccination Rates – One way to eliminate hepatitis B is to eliminate transmission. As the infection is most commonly passed from mother-to-child during birth, it is important for countries to adopt the universal hepatitis B vaccine birth dose – a policy that is widely credited with reducing this form of transmission even if the mother tests positive for hepatitis B! Under the universal birth dose policy, newborns receive their first dose of the hepatitis B vaccine within their first 24 hours of life. However, in the U.S., if the mother tests positive for hepatitis B, the child will receive the first dose of the vaccine and one shot of hepatitis B immune globulin (HBIG). According to the CDC and the Immunization Action Coalition, up to 95% of chronic infections caused by mother-to-child transmission can be prevented through this method!

 

While it is important to vaccinate newborns and infants, adults must be vaccinated too. In the United States, only about 25% – 30% of adults have completed all three doses of the vaccine. Completing the vaccine series is extremely important, as it takes all three doses, according to schedule, in order to receive long-lasting protection. As the infection can be spread through unprotected sex, sharing items such as toothbrushes and razors, or unsterile needles that could be used in tattoo parlors or medical settings, increasing the vaccination rate among this population is important in order to prevent transmission.

 

  • Encourage People to Get Tested – Hepatitis B can increase a person’s chances of cirrhosis and liver cancer, but when paired with other health conditions such as diabetes or hepatitis C, the risk for liver damage becomes even greater. As hepatitis B often has no symptoms, a person who is living with multiple health conditions may not realize that they need to be taking additional precautions to stay healthy. In addition, a recent study has shown that a large number of cancer patients have had past or present hepatitis B infections that were previously undiagnosed. Testing can help improve health outcomes for patients, as they can take the necessary precautions to prevent damage and doctors can make educated treatment decisions that would not negatively impact the hepatitis virus or cause it to reactivate.

 

To many patients, hepatitis B is not only a physical issue; it also has an emotional toll. From attempting to navigate the healthcare system to facing workplace discrimination, hepatitis B patients all over the world can face stress and mental distress. Cultural myths and stigma can negatively impact how infected individuals and their families interact with their communities and even each other. Addressing these issues is a major part of eliminating the infection once and for all. So, for science, for action, and for health, we must all work together to advocate for patients, protect our communities, and end hepatitis worldwide!

To hear real patients describe their struggles with hepatitis B, you can view our #justB story campaign.  

Want to help raise hepatitis B awareness during National Public Health Week? Join us on social media by using the hashtags #NPHW or #NationalPublicHealthWeek on Twitter and follow along as we participate in the American Public Health Association’s twitter chat on Wednesday, April 3rd at 2 pm!

Patient Perspective: Living with Chronic Hepatitis B & Fighting it On All Fronts

 

This post is by guest blogger Mariam. Mariam works at a charity cancer hospital and is interested in philosophy. She is currently learning french and enjoys spending time by herself and the mountains. 

When you are first told that you have a chronic disease that is treatable but has no cure, you are suddenly confronted with an enemy on multiple fronts—you have to fight it within your body, inside your mind, your heart and in the outside world. Chronic hepatitis B: nearly 15 million people are living with it in Pakistan. In the world, 292 million people are silently suffering from this , and most are unaware (which is 9 out of 10 people globally). It is a tragedy that 2 out of 3 liver-related deaths are caused by this infection which is preventable and treatable. There are many reasons why this disease is prevalent in a developing country like Pakistan that lacks a proper healthcare system; where there are no pregnancy screenings or an effective mechanism to ensure babies are vaccinated against this. It’s an infection that can be transferred through blood (most commonly from an infected mother to her baby during delivery)  and sexual intercourse and  so it is not difficult to understand how this disease travels from one generation to another, silently. Elimination of viral hepatitis by 2030 is one of the millennium goals of the World Health Organization, but we cannot achieve this without dedicated efforts by all the stakeholders that include health-care professionals, patients, media, and policy-makers. I am primarily interested in sharing the patient’s perspective, in hopes that it will encourage others to fight this epidemic.

A Patient’s Point of View

The fact it’s a chronic illness means you are in for the long haul and you have to be prepared to take care of yourself by regular monitoring/medications (depending on what stage you are at) for the rest of your life. One can argue that’s bad but it’s not a big deal as we have people who suffer from high blood pressure, bad eyesight, or diabetes and they also have to regularly take care of themselves. The problem is that hepatitis B is an infectious disease, a fact that contributes towards stigma surrounding its diagnosis. Suffering from flu makes me feel like a hazard to others. Having an infection that I cannot get rid-off certainly makes me feel bad and, in a way, dirty. I have to be cautious and aware that my blood is hazardous for others and I have to be constantly aware of all the possibilities I can be harmful and ways to prevent it. It’s a progressive disease which can be treated at a certain point, so when you go to follow-up appointments, you feel like a ticking bomb is inside you and you need to be able to identify the period when the bomb goes off so you can treat the damage. Because current hepatitis B medications are most effective when there are signs of liver damage, the treatment is often only given during this phase. The inherent uncertainty makes you hate hepatitis B.

Fighting Discrimination and Stigma

Living in a conservative society, if you are one of the few fortunate ones aware of your diagnosis, how do you deal with it? I kept it to myself because I did not want people to define me through my illness. I did not tell my parents or friends because I did not want them to see me as ill or worse, to pity me. I needed time to process it without having to deal with other’s opinions and judgments. Three years ago, I was diagnosed with hepatitis B during regular pre-employment screening. I did not even know anything about this disease. I had a biopsy to determine the stage of the disease. Then I went to a few follow-ups. Unfortunately, after a while, I stopped because I did not want to think about this illness. I wanted to forget about it so I tucked it away, in the farthest corner of my mind. I did not know many people with whom I felt safe talking about this. Until one day, I was at a fundraising event for a charity cancer hospital where I got the chance to sit with a doctor. He was a stranger and a doctor, so in a way I felt safe telling him why I’m so interested in trying to understand where my country stands in the fight against hepatitis B—I told him I was diagnosed with it. At one point he asked me if I’m on treatment,  and I honestly told him I am supposed to be on follow-up. He said, “What do you mean, supposed to be?” That slight hint of disappointment made me feel I failed in taking care of myself. It’s easier to sound irrational inside your head but when you share it out loud, it does not feel nice. He told me that first, I need to sort out myself before trying to make a difference in the world of hepatitis B. I am grateful for the brief discussion with him which gave me the courage to think about re-scheduling my long overdue follow-up appointment. It gave me the clarity that I wanted to share my story with others in hopes that those who are fighting hepatitis know they are not alone. Sharing my story also helps me feel that I am not alone either.

I feel it is very important to fight the stigma surrounding hepatitis. Only then we will be able to talk about it and bust the myths. Only then we will be able to discuss ways to fight it on the ground. It is common in a conservative society to put a label on you as defective and exclude you from everything. For instance, marriage is still, by large, the union in this culture after which people have sexual intercourse and have kids; both occasions that can be possible causes of transmission of this virus. If, before marriage, a person is aware of their diagnosis, they can ensure that their partner is vaccinated and safe. However, in this society, there is also a prevalent culture of arranged marriage which makes this whole discussion almost impossible because so-called “perfection” is demanded. I wonder if submitting your hepatitis status with a marriage certificate was compulsory, would it help in data collection and early detection of this disease or would it encourage stereotyping. What if it was possible to vaccinate every child who starts school to be vaccinated against hepatitis B? After all, mandatory vaccinations are common in other countries. But what about children who can’t afford to go to a school? Can we link hepatitis B vaccination confirmation mandatory with every birth certification? This works in many other countries that vaccinate every baby born – we need to able to fight hepatitis B with a strong response such as this.

I also have an obsession with trying to understand this virus that is sharing my body. So my brain imagined a story to help understand how the chronic hepatitis B works. There are the good guys (liver cells) and bad guys (virus) who grew up together quite happily. Until one day, the good guys realized that these other guys are not from amongst us, let’s kill them. There is a battle and then there is collateral damage. What I want to understand is, if the bad guys aren’t harming the good guys, then why does the body start fighting them? And what is the purpose of their existence if they are not bad guys by default? Perhaps one day someone will help answer my questions. Until then, I’ll try to focus on the inevitable fight.

 

Tackling Hepatitis B in Africa: The First Nigerian Hepatitis Summit

This is a guest blog post by Danjuma Adda, MPH, Executive Director of Chargo Care Trust, a non-profit dedicated to helping hepatitis patients in Nigeria. 

In 2016, the World Health Organization (WHO) set targets for the elimination of viral hepatitis as a public health threat by 2030 and provided a global health sector strategy (GHHS) on viral hepatitis for 2016–2021 that has since been adopted and endorsed by 194 countries. Nigeria joined the league of other nations to sign up to the GHSS and was among the few countries in Africa to develop firm goals towards the elimination of viral hepatitis. The goals were mapped out in a comprehensive framework that includes the National Viral Hepatitis Strategic Plan 2016-2020, National Policy for the Control of Viral Hepatitis, and National Guidelines for the Care and Treatment of Viral Hepatitis. An estimated 26 million Nigerians are living with viral hepatitis. A national hepatitis control program was created and a Technical Working Group for the Control of Viral Hepatitis was set up to help address the issues.

Despite these achievements, there has been very little financial assistance or investments by the national government towards the elimination of hepatitis. Gaps like low awareness fueled by myths and misconceptions, lack of available information on hepatitis, poor systems of health, high cost of diagnostic testing and out of pocket expenses for viral hepatitis treatment, low capacity of health care providers, and the proliferation of substandard treatment centres across Nigeria poses a challenge to the elimination goal of hepatitis in the country.

The First Nigerian Hepatitis Summit

To spur action towards hepatitis elimination in Nigeria, hepatitis patient groups and civil society networks organized the first ever Nigeria Hepatitis Summit in December 2018. The groups were led by Danjuma Adda, Executive Director of Chargo Care Trust. The goals of the summit were to:

1. Improve health seeking behavior among Nigerians through disease awareness and, as more people become aware of the disease, help them discover their status and encourage them to seek treatment as appropriate;

2. Increase local and domestic health financing, increase domestic, local responses, and allocate needed funds towards the elimination of the disease as more state governments establish state actions plans;

3. Increase engagement and involvement of the private sector in accelerating the elimination goal of viral hepatitis in Nigeria and;

4. Increase the capacity of health care professionals and improve health care systems to deliver quality viral hepatitis cascade of care in line with WHO and national guidelines.

The summit was held on December 3-4 in Abuja, Federal Capital Territory. Over 200 participants from diverse sectors attended including the:

* WHO’s Nigerian office

* State Directors of Public Health across Ministries of Health

* State HIV/AIDS Program Managers-Hepatitis is domiciled in the State HIV/AIDS programs at both national and state levels.

* Civil society and NGOs from 26 states in Nigeria

* Academia including the Society of Gastroenterologist and Hepatologist in Nigeria (SOGHIN)

* Private sector representatives

* Professional Medical associations

The Society of Gastroenterologist and Hepatologist (SOGHIN) led the technical faculty. SOGHIN made up 70% of the speakers. Other Speakers included: World Health Organization (WHO); World Hepatitis Alliance (WHA); Clinton Health Access Initiative (CHAI); National Primary Health Care Development Agency; Harm Reduction Association of Nigeria; and Representatives of States Ministries of Health.

Outcomes from the Summit

* Increased advocacy at state ministries of health to ensure state governments prioritize hepatitis cascade of care

* The engagement of private institutions to invest in the hepatitis cascade of care

* Efforts to enhance collaboration towards improving hepatitis cascade of care between civil society organizations and state governments

* Increased domestic financing is needed by state governments towards the elimination of viral hepatitis in Nigeria

* The World Hepatitis Alliance (WHA) UK is partnering with CSOs/Patient groups to build advocacy efforts for hepatitis C financing. To this end, WHA is supporting the development of a hepatitis C financing model for the engagement of state governments and private sector players to invest in elimination projects across Nigeria.

Looking Towards the Future

For the first time, government representatives from the state and national ministry of health, patient representatives, and civil society members came together to talk about the burden of viral hepatitis with the common goal of finding solutions to the pandemic. It was evident during the meeting that the lack of commitment and political will by the national government may cause Nigeria to miss the target goal of eliminating viral hepatitis if strong actions are not taken. Viral hepatitis must be recognized as a disease of public health importance in the country.

At the moment, the viral hepatitis cascade of care remains beyond the reach of the majority of Nigerians, fueling the spread of fake and substandard practices and the proliferation of treatment centres around the nation.

Almost everyone in Nigeria is affected by the scourge of viral hepatitis. Brothers, friends, and relatives have been lost to this disease. The conspiracy of silence across the nation and lack of strong will to address the pandemic remains a puzzle that we all need to solve.

Nigeria has what it takes in terms of financial and human resources to be the regional leader in the drive towards the elimination of viral hepatitis in Africa. What it lacks is the political will and commitment of government at all levels and the interest of private sector players to invest in the elimination of viral hepatitis in Nigeria. At the moment, other African countries are overtaking Nigeria on the path towards elimination by launching ambitious plans for their citizens.

If only we can get the attention and support of the private sector players and business moguls in Nigeria, the country will be on track towards the elimination of this disease and surpass the WHO target. If some of the countries wealthiest individuals contributed just a million dollars each to a National Hepatitis Elimination Project, Nigeria would see profound health benefits for the entire nation.

In order to attract support from partners around the world including pharmaceutical companies, the government of Nigeria must make a bold commitment and investment in addressing the challenge of viral hepatitis for its citizens.

The government of Nigeria must take the first step by making the financial commitment towards provisions for prevention, testing and treatment programs in the country by launching a pragmatic and ambitious Viral Hepatitis Elimination Project with clear targets to reach each year on prevention and treatment, including harm reduction strategies.

Vlog: Lunch & Learn Session with Jefferson APAMSA

Join Michaela Jackson for A Day in the Life of a Public Health Coordinator as she takes you behind the scenes of Hep B United Philadelphia.

In this episode, the Hepatitis B Foundation joins Hep B United Philadelphia in the City for a Lunch & Learn session with Jefferson University APAMSA students.

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