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Hepatitis B Discrimination Registry

 

Despite almost 300 million people living globally with 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 These challenges are typically rooted in misinformation, outdated laws or guidelines, stigma, and an overall lack of awareness.

The Hepatitis B Foundation has been a longtime advocate of people living with hepatitis B. In fact, our advocacy successfully made hepatitis B a protected condition under the Americans with Disabilities Act (ADA) in the United States. We also support programs to fight discrimination faced by people living with hepatitis B when applying to schools, jobs, or accessing affordable medicine.

We also compiled a report called “Health Insurance Costs Impacting Shoppers Living with Hepatitis B (2020) to help people living with hepatitis B in the U.S. make informed decisions when choosing a health insurance plan. It can also be shared with policymakers to inform them of potentially discriminatory benefit plan designs in various states.

Most recently, Hepatitis B Foundation is excited to announce the launch of our discrimination registry! The purpose of this registry is to document and track discrimination related to hepatitis B.  Hepatitis B discrimination is described as unjust, unfair, or prejudicial treatment of persons on the basis of their hepatitis B status. In other words, being treated differently because of one’s hepatitis B infection. For someone with hepatitis B, this can mean exclusion, denying benefits, denied employment, education, training, goods or services, or having significant burdens imposed on an individual due to their infection status.

How to Share Your Experience

Use the registry link here and fill out the questions accordingly.

  1.  In the first section, we ask about your demographics which you can always select prefer not to answer for any of the questions.
  2. In the second section, we ask about your hepatitis B discrimination experience. In the third section, we offer additional support.
  3.  If you are located in the United States and are experiencing discrimination due to your hepatitis B status we can assist you to file a claim with the Department of Justice.

Other Discrimination Resources

Check out our Know Your Rights page. This page will help guide you through steps if you are experiencing discrimination in various institutional settings.

We have sections for:

  1. U.S. Schools and Education
  2. U.S. Employment
  3. U.S. Military
  4. U.S. Access to Medication
  5. Immigrant and International Issues

If you have any questions or concerns please email discrimination@hepb.org

Author: Evangeline Wang

Contact Information: info@hepb.org

Hepatitis B and Stigma

 

Hepatitis B and Stigma

World Kindness Day is just around the corner on November 13th. On World Kindness Day, we celebrate kindness and spread it around the world. Let’s celebrate this day by treating people living with hepatitis B with kindness, compassion, and respect.

Unfortunately, hepatitis B is often highly stigmatized – and the people living with it can feel ostracized. Why is there so much stigma surrounding hepatitis B? A study found that among Asians, the majority thought hepatitis B was a genetic disease which is why the family might feel stigmatized if a family member is living with it.1 Due to cultural values, interdependence, collectivism, and family centeredness, persons of Asian descent might think that having hepatitis B is a reflection on the family.1 This attitude could lead to people not wanting to get tested for hepatitis B because they worry about bringing stigma to the family.1 Another study found that among African communities, individuals were confused about the differences between hepatitis B, HIV, malaria, and other infectious diseases.2 This misattribution and confusion could lead to a person living with hepatitis B being perceived as an outsider to society and can cause stigma or discrimination.2

The studies demonstrate that the lack of education and information surrounding hepatitis B contributes to the stigma that individuals living with hepatitis B face. There is a lot of ignorance, myths, and misconceptions about hepatitis B. Let’s debunk some of these notions!

Hepatitis B cannot be spread through casual contact, only through blood-to-blood contact or sexual transmission. This means you can hug, kiss, and share a meal with your friends and family without worrying about contracting hepatitis B. In Asian communities, it is especially important to emphasize that family members living with an individual who has hepatitis B, can share meals with each other. And there is a safe and effective vaccine to protect loved ones – so transmission can be prevented!

Sometimes people do not want to discuss their hepatitis B status because of its association with intravenous drug use. People who inject drugs experience more discrimination because of the stigma surrounding addiction. On the flip side, individuals who do not inject drugs but are living with hepatitis B, might not want to discuss their status for fear that other people will stigmatize or label them as drug users. Additionally, people might assume individuals living with hepatitis B engage in risky sexual behavior which can further stigmatize them. This stigmatization only harms people living with hepatitis B because they cannot talk about their status openly, which would help destigmatize the disease.

Even extending past World Kindness Day, we encourage you to be kind to people living with hepatitis B. And if you are living with hepatitis B, please be kind to yourself! Continue to educate yourselves on hepatitis B to help lessen the stigma and discrimination surrounding it.

Below is a brief list of resources for people living with hepatitis B or individuals living with people living with hepatitis B.

  1. Transmission of hepatitis B – how hepatitis B can be transmitted
  2. Online Support Groups
  3. Factsheet – When Someone in the Family has Hepatitis B
  4. Know Your Rights – for anyone experiencing discrimination because of their hepatitis B status

References

  1. Kim, M. J., Lee, H., Kiang, P., Watanabe, P., Torres, M. I., Halon, P., Shi, L., & Church, D. R. (2015). Debunking the myth: low knowledge levels of HBV infection among Asian American college students. Asia-Pacific journal of oncology nursing, 2(1), 8–16. https://doi.org/10.4103/2347-5625.152399
  2. Mokaya, J., McNaughton, A. L., Burbridge, L., Maponga, T., O’Hara, G., Andersson, M., Seeley, J., & Matthews, P. C. (2018). A blind spot? Confronting the stigma of hepatitis B virus (HBV) infection – A systematic review. Wellcome open research, 3, 29. https://doi.org/10.12688/wellcomeopenres.14273.2

Author: Evangeline Wang, Program Coordinator

Contact Information: info@hepb.org

Hepatitis B and Discrimination of Health Care Students

Hepatitis B and Discrimination of Health Care Students

Hepatitis B virus (HBV) infection affects more than 290 million persons globally and up to 2.2 million persons in the United States. Living with hepatitis B can mean living with stigma and facing discrimination. Stigma related to hepatitis B is often caused by low awareness​ from the general public and health care providers. Low awareness can lead to fear and misconceptions about the disease. Discriminatory practices that affect health care students with hepatitis B infection may include unjustified denial of school admission or enrollment, restriction of clinical training, or dismissal from an academic program. Given substantial progress in hepatitis B research and treatment in recent decades, it is important to address discriminatory policies that affect health care students.

Kate Moraras, Deputy Director of Public Health at the Hepatitis B Foundation led a research project which found that 36 accredited health care programs in Pennsylvania (43%) had policies which appear to be discriminatory against students living with hepatitis B. These policies included requiring proof of hepatitis B immunity for enrollment or program completion. Failure to produce proof could result in revocation of program admission or not being allowed to enter clinical rotations. This is problematic because the Americans with Disabilities Act (ADA) protects individuals living with hepatitis B. The Department of Justice (DOJ) states that there is no lawful basis for excluding persons living with hepatitis B from health profession schools. Not only does the DOJ protect individuals living with hepatitis B, but the Centers for Disease Control and Prevention (CDC)  states that health care students with hepatitis B pose no risk to patients and should not be limited in their health care education. The CDC recommends that health care students should not be arbitrarily excluded or restricted from activities that could impede practice or studies. They additionally recommend hepatitis B testing only for healthcare providers at increased risk of infection or conducting invasive, exposure-prone procedures and most health care students are not participating in these invasive procedures. If you want to know what to do if you are facing discrimination visit the Know Your Rights section of our website.

 Resources

Please join Hep Free Hawai’i, ACLU Hawai’i, the National Task Force on Hepatitis B: Focus on AAPIs, Hep B United, and Hepatitis B Foundation on October 15th at 6PM ET to address hepatitis B discrimination among health care students. Dr. Chari Cohen, Senior Vice President of the Hepatitis B Foundation and Taylor Mangan, University of California President’s Public Service Law Fellow at ACLU Hawai’i will discuss hepatitis B related institutional discrimination against health care students, current protections and recommendations in place to protect health care students from discrimination. Register here.

The Hepatitis B Foundation’s website has an entire page focused on the rights of individuals living with hepatitis B. Check it out each section:

Reference

 

Moraras, K., Block, J., Shiroma, N., Cannizzo, A., & Cohen, C. (2020). Protecting the Rights of Health Care Students Living With Hepatitis B Under the Americans With Disabilities Act. Public Health Reports, 135(1_suppl), 13S-18S. https://doi.org/10.1177/0033354920921252

Author: Evangeline Wang, Program Coordinator, Hepatitis B Foundation

Contact Information: info@hepb.org

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.

#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"

Know Your Rights: What College Students with Hep B Need to Know About Health Forms and Disclosure

Image courtesy of stockimages at FreeDigitalPhotos.net.
Image courtesy of stockimages at FreeDigitalPhotos.net.

This summer, students living with hepatitis B face a task that can be as stressful as SATs, entrance exams or writing college essays – completing their colleges’ health forms.

Some colleges and graduate schools require no medical information while others expect you to document in detail your allergies, immunizations, medical history and even undergo TB testing.

The good news is colleges want to make sure all students are vaccinated against hepatitis B, the bad news is the requirement can force students to disclose their hepatitis B infection. Here are some important things parents and students should know when filling out college health forms.

No school can deny you admission or treat you differently because you have hepatitis B. The Americans with Disabilities Act (ADA) prohibits discrimination based on disabilities, and that includes hepatitis B.

Continue reading "Know Your Rights: What College Students with Hep B Need to Know About Health Forms and Disclosure"

U.S. Residents Only: Reporting Discriminatory Behavior Due to Chronic HBV Infection

Unknown-1An important message from the U.S. Department of Justice (DOJ) which pertains only to U.S. Residents:

If you or someone you know is dismissed or barred from a program due to chronic hepatitis B infection, report the incident to the Department of Justice, whether the complaint is against a State or local agency, a school or any private entity that serves the public.

As a friend, advocate or colleague, you have the right to file a complaint to report discriminatory behavior.  Fill in and submit the Americans with Disabilities Act (ADA) Complaint Form (www.ada.gov/t2cmpfrm.htm).

Kindly return the form to the following address:
U.S. Department of Justice
Civil Rights Division
950 Pennsylvania Avenue, NW
Disability Rights – NYAV
Washington, D.C. 20530

Or you may print and send the report via fax to the following number: (202) 307-1197.

Please note: you must be a U.S. resident in order to file a complaint with the U.S. Department of Justice