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Podcast Recaps: A Global Perspective on Stigma and Discrimination Against Hepatitis B

B Heppy Recap: A Global Perspective on Stigma and Discrimination Against Hepatitis B 

Catherine Freeland is the Associate Director of Public Health Research at the Hepatitis B Foundation. As a researcher and founder of the Foundation’s Hepatitis B Discrimination Working group, Dr. Freeland shares more about the impact of discrimination and stigma as it pertains to people living with hepatitis B.  

What is the difference between stigma and discrimination? 

  • It’s important to understand stigma and discrimination are different. Stigma is a social process that is characterized by being excluded, rejected, and devalued because of the social judgement associated with a certain condition. Although the literature on the topic is limited, it has been shown that stigma related to hepatitis B has negatively impacted the quality of life for those living with hepatitis B around the globe. Discrimination is different in that it is characterized by the laws and behaviors that limit opportunities for growth. For example, denying access to education or work because someone is living with hepatitis B is a form of discrimination. Discrimination is often a result of stigma.  

What are the causes for stigma and discrimination as it pertains to hepatitis B? 

  • Lack of knowledge and understanding about hepatitis B in the community is a root cause of stigma and discrimination. Most people are unaware of what hepatitis B is and how it can be transmitted. This often results in rumors, myths and misconceptions spreading in the community and unfortunately can alienate people living with hepatitis B.  

How does stigma and discrimination against hepatitis B affect the lived experiences of people in the community? 

  • When myths and misconceptions spread about hepatitis B in the community, people with lived experience often face discrimination. A lot of people are required to undergo health screenings prior to starting employment.  If they test positive for hepatitis B, they can be denied employment and/or can be fired from their jobs in many parts of the world. It can then be difficult to find another job and support their families. For people who wish to get employment visas to work abroad, they are required to undergo health screenings. In the Philippines and the Gulf Coast (Bahrain, Kuwait, Oman, Qatar, Saudi Arabia and the United Arab Emirates countries), it is common practice to deny employment visas to people living with hepatitis B. In some countries and cultures, pre-marital screening. We have also heard cases of individuals living with hepatitis B experience more challenges in custody of their children in divorce or separation cases.  

How can we address these challenges and what is the Foundation doing to support people experiencing discrimination? 

  • It is important for people with lived experience to speak up and share their experiences of stigma and discrimination. At the Hepatitis B Foundation, we have a discrimination registry where people can fill out survey responses pertaining to any discrimination, they are facing in their home countries. The survey is free and open access. We also have a working group of experts consisting of people with lived experience and community leaders and partners. By raising awareness about discrimination, we are working towards changes in policy across the globe to reduce stigma, improve lives, and give people living with hepatitis B a voice that matters. Ultimately everyone has a role to play in addressing discrimination and it starts with education and sharing accurate information on hepatitis B and advocating against this discrimination and stigma.  

 

Listen to the full episode here! 

Hepatitis B and Injection Drug Use: Risks, Barriers to Care, and Prevention Strategies

 

 

 

 

 

 

 

 

 

Hepatitis B is a liver infection which is caused by the hepatitis B Virus (HBV). Hepatitis B is transmitted from person to person through blood, semen, or other bodily fluids. You can learn more about the ways hepatitis B is spread here. People who inject drugs (PWID) are at high risk for contracting the virus due to the sharing of needles and low  awareness and education about hepatitis B.

HBV Prevalence among PWID Communities

People who inject drugs (PWID) are at high risk for hepatitis B virus infection due to various factors, including sharing injection equipment and lack of awareness about hepatitis B transmission. Using unclean needles to inject drugs can result in the exchange of blood. This increases a person’s risk of being exposed to the virus. Hepatitis B prevalence among PWID is much higher than in the general population. Chronic HBV infection has been identified in 3.5% to 20.0% of PWID in a variety of settings, and 22.6% of PWID have evidence of past infection (Haber & Schillie, 2021). Drug injection is the most common risk for persons ages 18-40 years old with hepatitis B virus. 

Barriers to Care for PWID Communities

Access to treatment can be a significant barrier for PWID, who may face stigma and discrimination in healthcare settings. To find out if someone has hepatitis B it is recommended that a triple panel hepatitis B test be run (which includes HBsAg, HBcAb and HBsAb). These tests will help identify people with hepatitis B, a previous exposure to hepatitis B and those who have protection against hepatitis B infection (through vaccination). For those with hepatitis B, treatment options for hepatitis B consist of antiviral medications that can help to control the virus and reduce the risk of serious liver damage, cirrhosis, and liver cancer. Treatment is taken daily for life generally. PWID lack access to these treatments due to the stigma attached with substance use and addiction. Some of these stigmas include being associated with dangerous, unpredictable, and lacking self-control (NIH, 2019). In a recent study, 88% of individuals from PWID have experienced some type of stigma from the healthcare system (NIH, 2019).  Some of these stigmas included being poorly treated in healthcare facilities while interacting with nurses, security guards, and other medical providers. Due to these biases, people often refuse to seek health care services to avoid mistreatment. Stigma is the top barrier for PWID communities worldwide (Biancarelli et al, 2019). Even though the cost of treatment may be a barrier for some people, there are resources to find affordable options. Learn more about accessing medication here

Prevention Strategies

One effective prevention strategy to combat the spread of hepatitis B among PWID is to use clean injection equipment, like needles, works, and syringes. This will reduce the likelihood of transmission. New services have been introduced in cities like Philadelphia to decrease the rate of sharing needles. Prevention Point Philadelphia for example is a nonprofit public health organization that works to provide comprehensive harm reduction services to Philadelphia and surrounding areas. The syringe service program specifically allows used syringes to be exchanged for clean ones. With these services, the need to share needles can decline, which then can help decrease the risk of hepatitis B and other infectious diseases being spread in the community. Needle and syringe programs also provide other social and health services, such as counseling,  hepatitis testing, and referral to drug treatment for example.

Another way to prevent hepatitis B in PWID is through education and outreach efforts to help raise awareness about the risks of transmission and how to reduce those risks. This will also encourage safer injection practices to reduce the risk of transmission through blood contact. Other recommendations for prevention of hepatitis B among people who inject drugs is to offer vaccinations for PWID communities. The hepatitis B vaccine is safe and effective and recommended for all adults in the US between the ages of 18-59 and above 59 with risk factors. Testing is another great way to help the community- to identify infection and encourage prevention through vaccination ultimately preventing liver cancer in the long run. Offering people who inject drugs incentives to increase uptake and complete the vaccination schedule is also a way to prevent hepatitis B in PWID (WHO, 2023).  The United States has set a goal to decrease the number of cases of hepatitis B in the PWID community. The National Progress Report goal is to reduce the rate of new hepatitis B virus infections among people who inject drugs by more than 25% by 2025 (CDC, 2020). 

 

To learn more about the resources provided by Prevention Point, click here.

 

References:

World Health Organization. (2022, June 24). Hepatitis B. World Health Organization. Retrieved March 15, 2023, from https://www.who.int/news-room/fact-sheets/detail/hepatitis-b

World Health Organization. (2015, March). Guidelines for the prevention, care and treatment of persons with chronic hepatitis B infection. World Health Organization. Retrieved March 15, 2023, from https://www.who.int/publications/i/item/9789241549059

Centers for Disease Control and Prevention. (2020, August 11). NP report 2025 goal: Reduced HBV rate among PWID. Centers for Disease Control and Prevention. Retrieved March 15, 2023, from https://www.cdc.gov/hepatitis/policy/NPR/2020/NationalProgressReport-HepB-ReduceInfectionsPWID.htm

Biancarelli DL, Biello KB, Childs E, Drainoni M, Salhaney P, Edeza A, Mimiaga MJ, Saitz R, Bazzi AR. Strategies used by people who inject drugs to avoid stigma in healthcare settings. Drug Alcohol Depend. 2019 May 1;198:80-86. doi: 10.1016/j.drugalcdep.2019.01.037. Epub 2019 Mar 8. PMID: 30884432; PMCID: PMC6521691.

Haber, P., & Schillie, S. (2021, August 18). Pinkbook: Hepatitis B. Centers for Disease Control and Prevention. Retrieved March 24, 2023, from https://www.cdc.gov/vaccines/pubs/pinkbook/hepb.html 

Centers for Disease Control and Prevention. (2023, March 17). QuickStats: Age-adjusted drug overdose death rates, by state – National Vital Statistics System, United States, 2021. Centers for Disease Control and Prevention. Retrieved March 19, 2023, from https://www.cdc.gov/mmwr/volumes/72/wr/mm7211a7.htm?s_cid=mm7211a7_e&ACSTrackingID=USCDC_921-DM101471&ACSTrackingLabel=This+Week+in+MMWR+-+Vol.+72%2C+March+17%2C+2023&deliveryName=USCDC_921-DM101471

Board of Health, Department of Public Health. (2022, October 26). Health Department releases data on 2021 overdose deaths in Philadelphia: Department of Public Health. City of Philadelphia. Retrieved March 20, 2023, from https://www.phila.gov/2022-10-26-health-department-releases-data-on-2021-overdose-deaths-in-philadelphia/

Zero Discrimination Day

Every year, UNAIDS marks March 1st as Zero Discrimination Day. This year, Zero Discrimination Day highlights “the urgent need to take action to end the inequalities surrounding income, sex, age, health status, occupation, disability, sexual orientation, drug use, gender identity, race, class, ethnicity and religion that continue to persist around the world”.

Although hepatitis B affects about 300 million people worldwide, hepatitis B related discrimination still is pervasive. In fact, the Hepatitis B Foundation has been documenting these inequalities through our Discrimination Registry. Since May of 2021, we have documented over 250 cases of hepatitis B related discrimination from all over the globe. Of these cases, 213 individuals experienced discrimination personally and 151 knew of people who were discriminated against. Within these reports, people have described instances where they have been denied employment or lost employment due to their hepatitis B status or had been denied educational opportunities or immigration to another country. The top 10 countries where people have reported hepatitis B related discrimination are the Philippines, Nigeria, India, Pakistan, United States, Ghana, Uganda, Ethiopia, Bangladesh, and Sierra Leone. The Hepatitis B Foundation is aware that discrimination is happening around the world and encourages people to report any discrimination on the registry here.

Notably, the United States is in the top 10 countries where people have reported hepatitis B discrimination. Most of the reporting within the United States comes from individuals in the military living with hepatitis B. Currently, the military in the United States and many countries unethically prohibits individuals with hepatitis B to serve due to outdated guidelines. Now, since most individuals within the military setting should be vaccinated against hepatitis B and with the accessibility of hepatitis B antiviral therapy which can control the virus, the risk of transmission is extremely low. These guidelines should be updated to reflect national policies in the United States that prohibit discrimination. In the broader setting of the U.S. outside of the military, it is illegal to discriminate against people living with hepatitis B. The Americans with Disabilities Act (ADA) prevents employers, institutions, and other organizations from discriminating against an individual based on their hepatitis B status. The Hepatitis B Foundation hopes to one day end hepatitis B related discrimination not only in the United States, but also globally.

Ending hepatitis B related discrimination globally will require incredible effort from multiple partners like governments, organizations, community advocates, and people living with hepatitis B. The first step is demonstrating that discrimination is a serious issue around the world that impacts one’s life in a variety of ways, both economically and psychologically. The discrimination registry that we launched in 2021 will help us document discrimination around the world and help us determine areas of focus. We want to publish and share what we find from this registry so academic partners, policy leaders, advocates and health professionals can be made aware of the current situation and challenges people living with hepatitis B face. We hope to maintain this registry so we can assist people experiencing hepatitis B related discrimination. And we want to create a global movement to enact change, advocating for ending policy and practice that allows for discrimination, and instituting policies that protect people with hepatitis B worldwide. But we need your help – people living with hepatitis B, and people who have faced discrimination, are the most important partners in this effort! We need you as partners, to maintain the registry and fight hepatitis B related discrimination, and ensure the fight for equality continues. We are currently fundraising to keep the Discrimination Registry going and expand on these plans to help fight discrimination globally.

This fight against discrimination will take some time! Change does not happen overnight. Improving awareness, growing an advocacy movement, engaging leaders and decision makers, and especially changing policy, can take years – but we must continue our work together. The Hepatitis B Foundation has long been dedicated to assisting in discrimination related causes. In fact, the Hepatitis B Foundation played a key role in a landmark settlement by the U.S. Department of Justice that established protection for people with hepatitis B under the Americans with Disabilities Act (ADA). That effort took three years to see policy change once we took up the fight, but it was worth it to have protections in place for people with hepatitis B. Learn more in our Know Your Rights section.

On Zero Discrimination Day, March 1st, and moving forward, please continue to use your voice to speak out against discrimination. If you need assistance please fill out the Discrimination Registry to document your experience and the Hepatitis B Foundation will try its best to assist you and navigate you through it.

#StigmaStops: Can We End Hepatitis B Discrimination

Around the world, millions of people with chronic hepatitis B face wrenching discrimination that limits their dreams, education, careers, income and personal relationships.

Discrimination is unethical, unnecessary and a violation of human rights. Hepatitis B is simply not transmitted through casual contact. The stigma that persists is based on ignorance and it impacts millions around the world daily. The United Nations created Zero Discrimination Day to highlight the negative impact of discrimination and promote tolerance, compassion and peace. Many hepatitis activist organizations, including the Hepatitis B Foundation, used this commemorative day to draw attention to global hepatitis B discrimination. Even though Zero Discrimination Day was on March 1, we still need to recognize the importance of stopping hepatitis B discrimination.

Every day is zero discrimination day, and ending discrimination starts with each of us working in any way we can in our communities to end this stigma.

No one is to blame for hepatitis B, and people who have hepatitis B deserve the same opportunities to live fulfilling lives – at work, at home and in the community.  . There is a safe and effective vaccine that prevents hepatitis B infection. When people are protected, there is no reason to fear that healthcare workers or hotel maids will spread this infection. Even without vaccination hepatitis B transmission can be avoided with simple prevention measures. Hepatitis B is not transmitted casually.

People who have hepatitis B are part of our global community. They are our mothers, brothers, doctors, teachers, spouses and friends. To learn about how the fear of discrimination affects people who have hepatitis B, check out some of our #justB patient stories. Jin’s story tells us how a vibrant young woman handles her fear, and Carolyn’s story shows us the devastating consequences of hiding a hepatitis B diagnosis.

It is morally reprehensible that given the tools and knowledge we have that discrimination against people who have hepatitis B should continue today. So we ask you to help us end this discrimination.

One way you can fight hepatitis B discrimination is by joining the World Health Alliance in their #StigmaStops awareness campaign. It is a year-long campaign that highlights the stigma and discrimination associated with hepatitis around the world. #StigmaStops provides people living with hepatitis a platform to strengthen their voice and speak about the stigma and its impact as well as dispel myths and misconceptions of hepatitis B. Another way to help is to talk about hepatitis B – with your colleagues, friends and family members. The more we talk openly about hepatitis B, the less it will be stigmatized. And feel free to share our #justB videos – they can be a great conversation starter!

Read our previous blogs about employment discrimination and more stories about hepatitis B discrimination.

Time to End the Military’s Ban on Enlistees with Hepatitis B

Image courtesy of vectorolie at FreeDigitalPhotos.net.
Image courtesy of vectorolie at FreeDigitalPhotos.net.

By Christine Kukka

One of the most glaring civil rights abuses facing people with hepatitis B in the United States today is the military’s continued refusal to allow anyone with chronic hepatitis B to enlist.

This prohibition continues, despite the fact that all military personnel are vaccinated against hepatitis B, and scientific data shows hepatitis B is not spread through casual contact.

“Our brave servicemen and women deserve nothing less than the best, yet many qualified individuals are being prevented from serving in specific roles and/or being promoted within the military’s ranks. That’s simply wrong,” said U.S. Rep. Barbara Lee, D-Calif., in a letter challenging the military’s Uniform Code of Military Justice prohibits people with hepatitis B and C and HIV from enlisting in the Navy, Army, Air Force, Coast Guard, Marine Corps and National Oceanic and Atmospheric Administration.

This outdated and scientifically-baseless Department of Defense policy damages the civil liberties of many Americans.

  • Asian and Pacific Islander Americans, African and Middle Eastern immigrants and other ethnic groups are disproportionately impacted by hepatitis B. For example, Asian-Americans make up less than 5 percent of the total U.S. population but account for more than 50 percent of the 2 million people living with hepatitis B cases in the U.S.
  • Immigrants and their children are also disproportionately affected by hepatitis B, due to the lack of vaccinations in their countries of origin. As a result, they are barred from military service, which offers a path to citizenship.

What is especially heart-breaking are the young men and women who work hard to get into prestigious military academies, only to be dismissed when it’s discovered they have hepatitis B.

military-662872_1920This military code historically barred people with serious medical conditions because they were considered unfit to serve, suspected to incur high healthcare costs and could pose an infection risk to fellow soldiers.

The code prohibits enlistees with the, “Presence of … current acute or chronic hepatitis carrier state, hepatitis in the preceding six months or persistence of symptoms after six months, or objective evidence of impairment of liver function.”

But most people with chronic hepatitis B who want to enlist are healthy, have no liver damage, do not pose an infection risk to others, and are capable of performing the same duties required of their fellow recruits. Clearly, military policy has not caught up with current science.

This discriminatory policy is difficult to challenge, despite the best efforts of advocates including Rep. Lee and U.S. Rep. Ileana Ros-Lehtinen (R–FL).

The Americans with Disabilities Act, which prohibits discrimination against people with disabilities and chronic diseases such as HIV and hepatitis B and C, unfortunately has no jurisdiction over the Department of Defense.

Although the Department of Justice and CDC have issued clear, science-based guidelines that find hepatitis B-infected healthcare providers to pose no infection threat to patients or coworkers, the military continues to practice its discriminatory policies, which rob the military of talented and motivated recruits.

It is time to change these outdated and discriminatory policies. There are many good men and women waiting, willing and able.

Changing Jobs? How to Find the Best Employer Health Plan When You Have Hepatitis B

getting-a-job-200x300
Image courtesy of stockimages at FreeDigitalPhotos.net

By Christine Kukka

You’ve just landed a new job with a better paycheck, but how do you make sure your new health plan covers the tests, doctor visits and medications needed for your or a family member’s hepatitis B?

Many people with chronic medical conditions find switching health plans can affect the quality of their medical care and requires a careful calculation of what their out-of-pocket healthcare costs may be in the year ahead.  There’s a lot to consider and doing your homework is essential to finding the best employer insurance plan for your health and your wallet. Two key questions to ask are:

Can I keep the same family doctor and/or liver specialist?  You don’t want to lose the expertise and personal rapport you may have developed with a provider. And, hepatitis B specialists are few and far between in many regions. Find out what doctors and specialists the new plan covers. Some plans offer several options, so find out which one covers your doctor. If the new plan doesn’t include your liver specialist, are you willing to pay extra to stay with him or her? For more information about health insurance terms and shopping for a plan, click here.

How do you make sure the new plan covers your drugs and lab tests? And how do you find this out without disclosing your hepatitis B? First, you cannot be denied coverage — or a job — because of your hepatitis B. The Affordable Care Act prohibits employers from denying anyone coverage because of a pre-existing health condition. However, you need to do your homework and look carefully at the deductibles, copays and coinsurance a plan offers.

When you are offered the job, or when you go for your benefits interview with the HR rep after accepting the job, ask for a copy of their health insurance plan and read it over carefully. It may be available online.  Ideally, you want coverage that covers the most and costs the least after you add up your monthly premiums (the amount you pay each month toward insurance coverage) and the copays (the portion you pay for drugs, lab tests, and doctor visits.)

If you or your family’s medical costs are high, you may find that selecting a plan with a high monthly premium may be the most affordable because your copays for tests and medications will be low.

To find out what costs you can expect (knowing you can’t predict every future medical event), try this exercise. Find out how much you paid during the past year for both premiums and out-of-pocket copays for drugs, lab tests, and doctor visits.

Now look at your new plan’s options. Assuming you have the same prescriptions, lab tests and doctor visits, how much would you pay under the new plan? If you have a choice of plans, apply the same test to each. Which plan is the least expensive when both copays and premiums are added up?

Look at a plan’s prescription pricing carefully. While health plans can’t openly refuse to insure people with costly, pre-existing conditions, some inflate the amount you pay for the two leading hepatitis B antiviral drugs (Viread and generic entecavir) to deliberately discourage people with chronic hepatitis B from choosing their health plans.

Every insurance plan has a drug formula overview in its description, which you have access to. It assigns a price “tier” to each drug. A low-cost generic antibiotic may be a Tier 1 and cost you only a $5 copay while a new, brand-name drug is assigned a pricier Tier 4 or 5 ranking and could be extremely expensive.

Look up any medications you are currently taking, or may take in the near future. For example, if your doctor has warned you that an antiviral may be in your future if your liver enzyme tests continue to rise, you will want to review your plan’s pricing for entecavir or tenofovir. If the health plan charges a high monthly copay for a generic antiviral such as entecavir, you may be able to file a complaint. Email the Hepatitis B Foundation at info@hepb.org for more information.

Reviewing health insurance coverage details isn’t easy, but it’s important to make sure your new health plan will be the best for you and your family.

What do you do if there is a one- or two-month lag before your new coverage begins? When you leave a job, you may be able to keep your old job’s health insurance coverage for several months. This is called COBRA continuation coverage. Under COBRA, you usually have to pay the entire monthly premium yourself, plus a small administrative fee. This may be costly, but if it provides good coverage and if you’re due for your annual physical, lab tests and ultrasound, or if you need to continue antivirals, it may be a good option.

Another option is the Health Insurance Marketplace . Also known as “Obamacare,” this helps uninsured people find and apply for quality, affordable health coverage, and low and middle-income people may qualify for lower costs based on their household size and income. Losing your health insurance because you’re changing jobs may qualify as a “life changing event” that allows you to apply. For more information on marketplace health plans and hepatitis B, please click here.

Another option is short-term or temporary health insurance coverage. For more information click here.

“How Did You Get Hepatitis B?” Why We Should Answer

Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net
Image courtesy of Serge Bertasius Photography at FreeDigitalPhotos.net

By Christine Kukka

Telling someone you have hepatitis B is almost always followed by the question, “how did you get it?”

The question can feel like an invasion of privacy or an indictment. Behind the question lurks a desire for reassurance that hepatitis B won’t happen to them, but of course it can. And that’s why we should answer and tell our story.

On a global scale, the story of hepatitis B is the story of humanity. How we and our forebears became infected results from centuries of human migrations, the transatlantic slave trade, political upheaval, poverty, re-used medical devices and ineffective public health policies. Continue reading "“How Did You Get Hepatitis B?” Why We Should Answer"