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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"

Hepatitis B Positive Speakers Discuss HepB with Geraldine Doogue

Heartfelt discussion with the “Hepatitis B Positive Speakers Group”, led by Australia’s Geraldine Doogue, ABC TV and Radio. Join Yvonne, David, Trevor, Linh and “Tina”, as they discuss their personal hepatitis B experiences -living with the stigma, and discrimination you can both see and “not quite put your finger on”, and their willingness to give back, and to increase community awareness.

If you’re on the Hepatitis B Information and Support Listserve, you may recognize Yvonne, one of the list moderators who mentions the emotional support she gets from her her cyber friends. 

Thank you Hepatitis Australia for sharing this discussion! 

 

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

Re-energized in Our Mission … A Message from Joan Block of HBF

Historic ruling now officially recognizes HBV infection as a protected disability under the Americans with Disabilities Act.

What a difference two years make. In 2011 the Hepatitis B Foundation celebrated its 20th anniversary and we were ready to rest awhile on our laurels after working so hard. But instead, we rallied for new challenges and now we have a lot to celebrate in 2013! Continue reading "Re-energized in Our Mission … A Message from Joan Block of HBF"

Joan Block, Hepatitis B Foundation Co-founder, Honored for Advocacy Work

A wonderful article (reprinted below) and short video was published last weekend in Phillyburbs.com recognizing the work of Joan Block, the Executive Director and co-founder of the Hepatitis B Foundation. In commemoration of World Hepatitis Day, Joan and Dr. Anna Lok were honored by the Viral Hepatitis Action Coalition of the Centers for Disease Control Foundation, for advocacy work resulting in the protection of medical students from HBV discrimination, and ultimately having HBV recognized as a disability protected under the Americans with Disabilities Act (ADA). This amazing accomplishment is just one of the many successes Joan and the HBF have had over the last 23 years as a result of her tireless efforts and dedication to the mission to help improve the lives of those affected by hepatitis B.

Please visit Phillyburbs.com to access to view the short video where Joan talks about the Foundation’s beginnings and how the HBF has grown from a grass roots effort to the leading national nonprofit for hepatitis B. Joan Block and the HBF truly are the “voice of hepatitis B”.

Read more about the story and the mission of the Hepatitis B Foundation and be sure to visit the HBF website to learn more about hepatitis B and the work of the Foundation.

For more than two decades, the Hepatitis B Foundation has fought to find a cure for the liver disease and advocate for those who have it.

What started as a grass-roots effort of four passionate people has grown into one of the leading nonprofit research and disease advocacy organizations in the United States.

“We are the voice for hepatitis B in the United States,” said co-founder and executive director Joan Block. “There’s still a lot of work to do, but we’ve accomplished a lot in the past 23 years.”

Earlier this year, the foundation’s mission got a boost when the U.S. Department of Justice said hepatitis B patients are protected under federal disability law in a case brought by the foundation against a New Jersey medical school on behalf of two students who were denied admission because they had the disease.

The case earned Block and Dr. Anna Lok, director of clinical hepatology at the University of Michigan Health System, recognition from the Centers for Disease Control Foundation, which honored both women on World Hepatitis Day July 25.

“That award is really being given to the foundation,” said Block, who lives in Doylestown Township. “It’s not me; it’s the work of the foundation. Without the foundation, I honestly don’t know if hepatitis B would even have much on the radar screen. There are very few voices, and we are probably the primary voice at the national level.”

Hepatitis B is an infectious liver disease that can be spread by sexual contact, sharing infected needles or at birth from mother to child, according to the Centers for Disease Control and Prevention. Chronic infection can lead to liver failure and cancer.

Block, her husband, Timothy Block — a researcher and academic who more often serves as the public face of the foundation — and New Hope philanthropists Jan and Paul Witte founded the Hepatitis B Foundation 23 years ago to draw more attention to and develop a cure for the disease, which affects up to 1.4 million Americans.

The couples initially started out to help a local family dealing with the disease. But what they found was little interest from the public health sector in researching a cure. The hepatitis B vaccine has led to dramatically lower rates of infection, and the prevailing, yet incorrect, belief at the time was that the disease infected mainly gay men and intravenous drug users.

“The more we dug, the more we realized there was nothing out there,” Joan Block said. “It was really grass roots, just the four of us in (the Wittes’) kitchen. We had the grand mission of raising a lot of money to start a research effort. That’s really what we needed. But it was hard to raise money when people didn’t know what hepatitis B was.”

Over the years, she said, the foundation has received numerous phone calls from people who believed they were being discriminated against because they have the disease. Some of them were medical professionals.

In 2011, four students contacted the foundation over six months, all claiming they were denied admission to or kicked out of medical and dental schools after discovering they had hepatitis B. All four were Asian Americans who were infected at birth. About half of infected patients in the U.S. are of Asian descent.

“It seemed like an avalanche,” said Block, a registered nurse who taught at Abington’s nursing school.

The foundation and Lok lobbied the CDC to update hepatitis B guidelines for medical professionals and students last changed in 1991. Since that last update, there have been no reports of hepatitis B transmission from medical or dental students, according to the CDC.

The Hepatitis B Foundation also filed a lawsuit on behalf of two students denied admission to the University of Medicine and Dentistry of New Jersey. The school settled with the Department of Justice.

In an added step, the departments of justice, health and human services and education sent a joint letter to the nation’s medical and dental schools about hepatitis B, encouraging them to adopt the CDC guidelines and informing them that people with hepatitis B are protected under the Americans with Disabilities Act.

But the foundation’s advocacy work is far from over. The organization is now lobbying on behalf of servicemen and women who are fighting discharge from the military on the grounds that they’re infected with the disease.

And the foundation’s executive director continues to push for a cure.

“We still want that cure,” Joan Block said. “We’re not satisfied that it’s preventable and controllable. We still have an urgent mission. That has not changed.”

 

Hep B Discrimination – Part Deux

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.

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

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).

 

 

 

 

 

Dreams on Hold – A personal story of an aspiring medical student

The summer before starting medical school, most of my friends traveled and had fun. But I could not.

The months of June and July marked 60 days of complete horror—the lowest point in my life. First, my sister suffered 
a near-death medical complication. Then, for the first time in my life, I experienced discrimination due to an unexpected medical diagnosis.

My discrimination story started on June 20, 2011. The director of admissions at (X) Medical School notified me that
I had been accepted into their program and offered a generous scholarship to attend. Because of this scholarship and the potential to obtain in-state residence, I dropped the other medical school I had been considering, including a $2,500 enrollment deposit.

I began the grueling paperwork to matriculate to (X) Medical School. It took nearly a week to schedule doctor appointments, fill out health forms, get required blood work done, look for apartments, and apply for financial aid. The following week, I traveled across the country to finalize an apartment lease. I returned home less than 24 hours later, exhausted but having successfully signed a lease.

Then my doctor called and said, “You have hepatitis B.” The nightmare began after that call.

The next day, (X) Medical School’s Student Health Services demanded that I have further blood tests within three days; otherwise, their committee would not be able to review my file before the start of classes.

I completed all of the tests, and the results were sent to the committee within a week. I pleaded with the committee 
to keep me enrolled, and I even agreed
 to drop out of medical school if the antivirals did not work.

The response from (X) Medical School came one week before orientation started: I was deferred until next year.
 In addition, my scholarship was revoked. They demanded that I sign a contract accepting deferment with conditions, including no guarantee of readmission and I had to sign within a week of receiving this devastating news.

At that moment I had to juggle not only my new medical diagnosis, but also the fact that I had a lease that could not be cancelled or sublet, a full year without any plans, and uncertainties about my future.

The nightmare still lingers. However, 
I am slowly getting back on my feet. The antivirals are lowering my viral load. I am working in public health and reapplying to medical schools. My future is still uncertain.

Note: This story is one of the four cases that galvanized the Hepatitis B Foundation into action. At a June 2011 meeting convened by the CDC, the HBF and other national thought leaders worked with the CDC to update their 1991 hepatitis B recommendations for health care workers and students, which were just updated, July 2012. It is hoped that the newly Updated CDC Recommendations for the Management of Hepatitis B virus- Infected Health Care Providers and Students  guidelines and advocacy efforts of HBF and others will make a dent in hepatitis B based discrimination.  Please note that these newly revised guidelines strongly state that hepatitis B is not a condition that should prevent anyone from entering or practicing in health care.

HBV Employee Screening By Suppliers of Your Favorite Apple Gadgets -Tip of the Iceberg, But Commendable

Apple recently revealed a list of its suppliers of the iphone, ipad and other gadgets, and the labor, health and health and environmental violations against some of the offenders. Most of these violations were out of Taiwan and China.  Included in the list of violations was the screening of employees for hepatitis B. What will this disclosure mean to those living with hepatitis B in China and around the world?  Apple has responded to each of the violations that were uncovered and says it will end relationships with repeat offenders. Will this stop discrimination against those living with HBV? Probably not, but it may stir-the-pot, encouraging other corporations to do the same.  Apple has star power, and the ability to make waves due to their success and reputation.  However, it is likely that foreign suppliers will circumvent the system and continue screening its employees or prospective employees for hepatitis B.

The question is how a job making gadgets, or components for gadgets, for Apple or any other company could possibly pose a reasonable risk of HBV exposure to any factory employee?  Hepatitis B is not transmitted casually. It is not transmitted by sneezing, coughing, shaking hands, sharing a meal, or working side-by-side with someone on the factory floor or sharing an office with someone who has hepatitis B.  HBV is transmitted through  blood and infected body fluids through blood to blood contact, unprotected sex, unsterilized needles and from an HBV infected mother to her newborn during delivery.

Every day the Hepatitis B Foundation responds to inquiries from people around the globe. Due to the stigma associated with HBV, chronic carriers may be denied employment due only to their HBsAg positive status.  There are special circumstances where exposure prone procedures may put others at risk due to an HBV infection. This would be limited to health care positions that involve invasive procedures such as gynecologic, cardio-thoracic or surgical procedures that might put a patient at risk. These risk-prone occupations do not include – other health care positions, jobs in the food industry, the retail industry, being in an office, in a factory, on cruise line, or any number of ordinary jobs. A positive HBsAg test should not prohibit employment, or entering and working in another country.

There will always be discrimination in our world. Even with laws that protect employees in the U.S. there are ways to circumvent the system and quietly discriminate. In many countries where HBV is prevalent, discrimination is blatant.  And of course HBV screening is merely the tip of the iceberg with the violations and deplorable working conditions in countries like China. Eyes wide-open can be a little disconcerting for those of us with our favorite gadgets. Apple’s disclosure of these violations is commendable and a start in the right direction.  Hopefully other companies will step-up and follow their lead.

Hepatitis B Carriers Need Not Apply: Discrimination in China

Please take look at this video on HBV discrimination in China.  This isn’t a new story for China, rather an ongoing problem. Despite the high numbers of HBV infected persons living in China, discrimination is rampant.  One in ten Chinese carry the hepatitis B virus. The range of HBV discrimination in China is vast.  Life changing opportunities are lost due to rejection: rejection from school, lost employment opportunities, and even lost love, all due to HBV carrier status.  Even simple, every-day routines like meals with friends and family are impacted. Many of those infected are expected to eat separately, or carry their own bowl and chopsticks.  This is due to widespread ignorance on how HBV is transmitted.

An HBF friend told me Lei Chuang, the student in the video who was rejected from a top post-graduate University program due to his HBV status, is a very popular.  Evidently he is a very visible and admired anti-HBV discrimination activist in China.  Lei Chuang suspended his post-graduate studies in order to campaign against HBV discrimination. One of his on-going projects is an invitation to dine with the Chinese Premier. Every day he sends one letter to the Premier – 151 letters and counting. That takes a lot of courage.

Lu Jun is the director of the Beijing Yirenping Center.  He has been actively fighting discrimination in China, along with providing education, outreach and patient counseling.  His organization works tirelessly to defend the rights of those living with HBV by providing legal support for anti-discrimination lawsuits. He was also pivotal in creating the Chinese HBV internet forum, www.hbvhbv.com, creating a critical link between nearly half a million Chinese subscribers. (Keep in my that social media outlets such as facebook, twitter and Youtube are blocked in China.) Lu Jun is also a friend of the Hepatitis B Foundation, and joined us for our patient conference in June of 2008.

Having witnessed HBV discrimination in China, first-hand, I can tell you that I admire these men, and all others willing to take a stand and actively fight discrimination in their country. Not everyone is able to find their voice in this fight, so the sacrifice of these individuals is to be commended. However, whether outwardly speaking out or quietly behind the scenes, it is imparative that we all do our part to help raise HBV awareness.