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Hepatitis B Advocacy, Living with Hepatitis B

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 These challenges are typically rooted in misinformation, outdated laws or guidelines, stigma, and an overall lack of awareness.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.

Hepatitis B Advocacy, Living with Hepatitis B

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 that “for 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.

Hepatitis B Advocacy, Living with Hepatitis B

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

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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.

Living with Hepatitis B

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

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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.

Living with Hepatitis B

Do You Have to Tell Your Employer About Your Hepatitis B?

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Image courtesy of Ambro at FreeDigitalPhotos.net
Image courtesy of Ambro at FreeDigitalPhotos.net

“Do I have to tell my new employer about my hepatitis B?”

After years of cautiously completing medical forms for schools, camps and college, my daughter’s question took me by surprise. It shouldn’t have. Many jobs—even when they don’t involve direct medical care—require a physical exam and confirmation of hepatitis B immunization.

There may be a safe and effective vaccine and new treatments for hepatitis B, but ignorance and stigma remain stubbornly entrenched in many HR departments. So here is what every job applicant, employee and employer should know about hepatitis B and employment.

During the application process or job interview, can an employer ask about my health? Continue reading "Do You Have to Tell Your Employer About Your Hepatitis B?" →

Hepatitis B Advocacy, Living with Hepatitis B

July 4th: Celebrating Freedom from Discrimination Against Hepatitis B

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

The day my daughter started kindergarten, her teacher asked that she be transferred to another classroom. She thought my daughter posed a health threat to a classmate who was recovering from leukemia.

Our doctor had disclosed my daughter’s chronic hepatitis B infection on her school health form. I thought the school nurse would know my daughter posed no risk to students, who were nearly all immunized against hepatitis B and supervised by teachers trained in universal precautions.

I was wrong on many counts. The school nurse went along with the teacher’s recommendation. After heated discussions with the school principal that included providing copies of medical reports and civil rights laws, my daughter remained in the classroom and the school’s staff received training on universal precautions.

That happened 16 years ago. The Americans with Disabilities Act (ADA) had been enacted 10 years earlier and policy makers, health officials and the courts were still working out exactly how the landmark law would protect people with blood-borne infections such as HIV and hepatitis B and C.

Continue reading "July 4th: Celebrating Freedom from Discrimination Against Hepatitis B" →

Hepatitis B Advocacy, Living with Hepatitis B

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

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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" →

Uncategorized

Hep B Discrimination – Part Deux

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Francis Deng is a medical student at Washington University School of Medicine in St. Louis. He is a graduate of Harvard University, Bachelor of Arts (AB), magna cum laude, Human Development and Regenerative Biology. Mr. Deng was an instrumental leader of Team HBV – President at Harvard, and the co-chair of the National Advisory Board, Team HBV Collegiate.

I wrote previously about discrimination against health care workers and trainees who have chronic hepatitis B on KevinMD.com.  Since that time, major advances have happened. News surfaced that since 2011, the US Department of Justice (DOJ) has investigated 4 cases of Asian/Pacific Islander students who were infected and were not allowed to enroll in specific medical or dental schools, both private and public, that they were initially accepted to. Another case is still pending investigations from the Department of Health and Human Services Civil Rights Division.

In March 2013, the DOJ released a settlement noting that chronic hepatitis B infection is considered a disability, so discrimination, under specific circumstances, is prohibited under the Americans with Disabilities Act (ADA). This was groundbreaking in being the first ADA settlement ever reached on behalf of hepatitis B carriers. If you or someone you know has experienced HBV-related discrimination in the community, school, or the workplace, you are encouraged to file ADA complaints to the DOJ.

You might be thinking, I’ve never heard of such a thing, there must be so few cases where denial of admission or other discrimination has occurred based on hepatitis B status; or I know my school has students with hep B, so this really isn’t an important issue.

Here’s why the issue is important. Discrimination issues are only ever important to minority groups; I don’t mean racial minorities, I mean people who are not the majority in some way. It happens to people who don’t have a political voice or were not involved with policy making and are helpless in the face of institutional policies. When there are not explicit and systematic policies to protect such individuals, they are at the mercy of individuals who make judgments on behalf of the institution. In this situation, school administrators may be reasonable, allow students with hep B to matriculate, ensure proper precautions are made with respect to patient care, and give non-coercive guidance to students regarding career decisions. I know several schools where this is the case. Or they may be unreasonable and ignorant (willfully or unwillfully) of the CDC recommendations regarding HBV-infected health care workers. They may bar such infected students to matriculate, bar them from clinical activities even when it’s reasonably safe (i.e. they are not highly viremic or it’s a minimally invasive activity), or coerce them into going into specialties that do not involve direct patient care. Their lives are derailed and redirected needlessly.

Here’s who should care.

Pre-health students, especially 1st and 1.5 generation API Americans: If you were born outside of the US or your parents were born outside the US, particularly in a highly endemic region such as Asia, Africa, or Eastern Europe, you should know that you are at greater risk for having chronic hepatitis B infection. You may have been vaccinated as a requirement of entering school, and you may feel in excellent health, but you probably will have never been screened for hepatitis B infection or antibodies until you enter a healthcare environment. In these cases investigated by the DOJ, 3 out of 4 students were previously vaccinated but did not discover their infection until entering medical/dental training. This is because maternal screening and newborn vaccination policies have not been universally applied until recently, and screening children is not standard. There are always holes in the health care system where people fall through, whether in the US or (especially) abroad. Further, HBV immunization at birth, while effective, is not guaranteed to protect against infection. Get tested.

Health students: If you know of someone who has been denied enrollment based on HBV infection or experienced other types of discrimination in any kind of arena (childcare, employment, etc.), get in contact with hep B advocates. They can connect you to private or pro bono attorneys that will help you file a complaint with the DOJ. This can be confidential (name not public) and doesn’t even have to be filed by the individual. Nadine Shiroma, a community civil rights advocate, gave me most of the information I used to write this blog post. Joan Block, co-founder and executive director of the Hepatitis B Foundation, is another key resource.

School administrators: Protect your institution by implementing clear policies regarding HBV that are compliant with the ADA, and consistent with CDC recommendations for that matter. Help prospective students by making these policies public.

Student leaders: If you’re in APAMSA, serve on school policy committees, you can push your schools to make public and make clear their policies regarding hepatitis B infected students and staff involved in health care.

Hepatitis B Advocacy

Justice Department Settles with the UMDNJ Over Discrimination Against People with Hepatitis B

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Direct from the Department of Justice (see below), the first DOJ settlement of an American with Disabilities Act (ADA) case involving people with hepatitis B was announced.  The Hepatitis B Foundation is proud to have played a critical role in successfully advocating for these students who suffered from discrimination as a result of chronic hepatitis B infection.

You may recall an earlier story posted both in the HBF Spring Newsletter, 2012 and the HBF’s Hep B Blog, “Dreams on Hold – A personal story of an aspiring medical student .“ This was one of four cases that spurred the HBF into action on behalf of these students and their rights.

July 2011, a meeting was convened by the CDC, with the HBF and others, resulting in the July 2012 CDC update “Recommendations for the Management of Hepatitis B virus-Infected Health Care Providers and Students. ”These recommendations were cited in the DOJ statement and clearly contributed to the DOJ settlement on behalf of people living with chronic HBV eliminating them from being excluded or discriminated against due to health issues. Since all applicants are from the Asian American Pacific Islander (AAPI) community, which accounts for more than 50% of Americans living with chronic HBV, The DOJ assures that the Civil Rights Division is committed to ensuring discrimination does not occur in this community as a result of this disability.  On behalf of those living with HBV, the HBF applauds this decision by the DOJ. 

The Justice Department announced today that it has reached a settlement with the University of Medicine and Dentistry of New Jersey School (UMDNJ) under the Americans with Disabilities Act (ADA).   The settlement resolves complaints that the UMDNJ School of Medicine and the UMDNJ School of Osteopathic Medicine unlawfully excluded applicants because they have hepatitis B.   This is the first ADA settlement ever reached by the Justice Department on behalf of people with hepatitis B.In 2011, the two applicants in this matter applied and were accepted to the UMDNJ School of Osteopathic Medicine, and one of them was also accepted to the UMDNJ School of Medicine. The schools later revoked the acceptances when the schools learned that the applicants have hepatitis B.   The Justice Department determined that the schools had no lawful basis for excluding the applicants, especially because students at the schools are not even required to perform invasive surgical procedures, and that the exclusion of the applicants contradicts the Centers for Disease Control and Prevention’s (CDC) updated guidance on this issue.

According to the CDC’s July 2012 “Updated Recommendations for Preventing Transmission and Medical Management of Hepatitis B Virus (HBV) – Infected Health Care Workers and Students,” no transmission of Hepatitis B has been reported in the United States from primary care providers, clinicians, medical or dental students, residents, nurses, or other health care providers to patients since 1991.

“Excluding people with disabilities from higher education based on unfounded fears or incorrect scientific information is unacceptable,” said Thomas E. Perez, Assistant Attorney General for the Civil Rights Division.   “We applaud the UMDNJ for working cooperatively with the Justice Department to resolve these matters in a fair manner.”

“It is especially important that a public institution of higher learning – especially one with a mission to prepare future generations of medical professionals – strictly follow the laws Congress has enacted to protect from discrimination those people who have health issues,” said U.S. Attorney for the District of New Jersey Paul Fishman. “The remedies to which the school has agreed should ensure this does not happen again.”

Under the settlement agreement, the UMDNJ must adopt a disability rights policy that is based on the CDC’s Hepatitis B recommendations, permit the applicants to enroll in the schools, provide ADA training to their employees and provide the applicants a total of $75,000 in compensation and tuition credits.

Both of the applicants in this matter come from the Asian American Pacific Islander community. The CDC reports that Asian American Pacific Islanders (AAPIs) make up less than 5 percent of the total population in the United States, but account for more than 50 percent of Americans living with chronic Hepatitis B.   Nearly 70 percent of AAPIs living in the United States were born, or have parents who were born, in countries where hepatitis B is common. Most AAPIs with Hepatitis B contracted Hepatitis B during childbirth .   The Civil Rights Division is committed to ensuring that this community is not subjected to discrimination because of disability.

Title II of the ADA prohibits state and local government entities, like the UMDNJ, from discriminating against individuals with disabilities in programs, services, and activities. State and local governments must also make reasonable modifications in policies, practices, and procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless those modifications would result in a fundamental alteration.

More information about the Civil Rights Division and the laws it enforces is available at the website www.justice.gov/crt.  More information about the ADA and today’s agreement with UMDNJ can be accessed at the ADA website at www.ada.gov or by calling the toll-free ADA information line at 800-514-0301 or 800-514-0383 (TTY).

 

 

 

 

 

Baruch S. Blumberg Institute