Hep B Blog

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.

What You Need to Know About Fatty Liver Disease and Liver Cancer

Join the Hepatitis B Foundation, Monday, April 22 at 1 pm EST, 10 am PST, for the final webinar of the 3-Part Liver Cancer Webinar Series, “Liver Cancer and Fatty Liver Disease: What You Need to Know”, presented by liver disease expert, Kenneth Rothstein, MD.

There is an upsurge in fatty liver disease in the U.S. and around the world as a result of poor diet, consumption of alcohol, and sedentary lifestyle. Fatty Liver Disease occurs when fat makes up more than 5% -10% of the weight of your liver, which can be a result of either alcoholic, or non-alcoholic fatty liver disease (NAFLD). This accumulation of fat can cause inflammation and permanent scarring of the liver, which may lead to serious complications including liver failure, and liver cancer. Learn about fatty liver, which is largely preventable.

Liver cancer is the third leading cause of cancer-related deaths and the seventh most common cancer worldwide. Learn how to prevent liver cancer, along with screening, surveillance and treatments for liver cancer.

Dr. Rothstein is the Associate professor in the Department of Medicine, and chief of the Division of Gastroenterology and Hepatology at Drexel University College of Medicine. He also serves as medical director of Abdominal Transplantation at Hahnemann University Hospital. 
Dr. Rothstein is a leading expert in the field of hepatology, with over 20 years of experience. He specializes in the treatment of liver disease and liver transplantation, particularly treating the complications of cirrhosis, including liver cancer. He is also a recognized expert on new treatments for hepatitis B and C.

“Fatty Liver Disease and Liver Cancer: What You Need to Know” webinar details:

Presented by: Dr. Kenneth Rothstein
Date: Monday, April 22, 2013
Time: 1 pm EST, 10 am PST
Click here to register

Did you miss the previous webinars of the series? Feel free to download them and listen at your leisure:

Download the March 6th Webinar and listen to Hepatitis B and Liver Cancer: What You Need to Know, by Dr. Robert Gish.
Download Now

Download the March Webinar and watch the video, Hepatitis C and Liver Cancer: What you Need to Know, by Dr. LaBrecque.
Download video

For additional accurate, easy-to-understand information on liver cancer, visit the Hepatitis B Foundation’s dedicated website, www.LiverCancerConnect.org.

 

Viral Hepatitis Action Alert!

*ACTION ALERT*

HAP – Hepatitis Appropriations Partnership

 Urge Your Members of Congress to Support Viral Hepatitis Funding

In Their Appropriations Programmatic Requests

 

 

With the passage of the continuing resolution (CR) for FY2013 at the FY2012 levels (before the sequester) and no Prevention and Public Health Fund allocations, we do not know the total, final funding level for FY2013 at the Centers for Disease Control and Prevention (CDC) Division of Viral Hepatitis (DVH) or the future of the $10 million they received in FY2012 for a testing initiative. The President’s FY2014 budget has not yet been released. We need your help in raising awareness among Members of Congress about the viral hepatitis epidemics and asking their support for increased funding for viral hepatitis activities at the federal level.  Viral hepatitis advocates are urging for a total funding at the Division of Viral Hepatitis of $35 million, an increase of $5.3 above the total FY2012 level.

In the next week and a half, all Senators and Representatives will write their “programmatic appropriations request letters,” which ask members of the Appropriations Subcommittees (who put together the federal funding legislation) to include funding for their priorities. The more Members of Congress that include a request for hepatitis funding in their letters, the greater the likelihood the Appropriators will include additional funding in FY2014.

As you know, viral hepatitis impacts over 5.3 million people nationwide. With a lack of a comprehensive surveillance system, these estimates are likely only the tip of the iceberg and 75% of those infected do not know their status. Even with these daunting figures, there are only $19.7 million in federal funding dedicated to fund viral hepatitis activities nationwide at the CDC in the CR for FY2013, before sequester.  Members of Congress need to know that viral hepatitis is a concern in their district, that their constituents are being affected and that this is an issue they need to care about. We need you to tell your story and ask your elected representatives to take action by April 12.

Additionally, the CDC released FY2012 Grant Funding Profiles by state, here. When you click on your state and “Generate Report,” your state’s viral hepatitis funding is included in the report.

Step-by-step instructions on what to do are below:

1.   Determine what Members of Congress to contact.  You should contact your personal Member of the House of Representatives and two Senators.  You should also contact other House Members in areas where your organization is located or provides services.  To determine who your Representative is please go to www.house.gov and type in your zip code(s); to determine who your Senators are go to www.senate.gov and select your state from the drop down menu.

2.   Call the Members’ Offices to get the name and correct spelling of their health staff person.  Email the staff using the draft email text below.  House staff emails are First.Last@mail.house.gov (john.smith@mail.house.gov) Senate staff emails are First_Last@Last name of Senator.Senate.gov (john_smith@doe.senate.gov)

Sample email:
Your Name
State and Zip code

Dear (Name of Health Staffer):

My name is ____________ and I live in City/State. I am writing to urge Representative/Senator________________ to include funding for viral hepatitis in his/her Fiscal Year 2012 programmatic appropriations request letter.  [Include brief details on the impact of viral hepatitis on yourself or describe your organization].

There are over 5.3 million Americans impacted by viral hepatitis but, in FY2012, the only dedicated federal funding stream provided a mere $29.7 million through CDC.  This is insufficient to provide the most basic public health services such as education, counseling, testing, or medical management for people living with or at risk of viral hepatitis.

I urge Representative/Senator ___________ to support a total funding level of $35 million for the Division of Viral Hepatitis in FY2014 to effectively combat these epidemics.  I will be following up with you in the near future to discuss this request.  In the meantime, feel free to contact me with questions.

Thank you again for consideration of my request.

Your Name

3.   Follow-up with the staff you have emailed with a phone call to confirm they received the request and to determine when they may have an answer from their bosses as to whether or not they will include a hepatitis funding request in their Appropriation programmatic request letter.  If asked, make it clear to the staff that this is a program request and NOT a project request (i.e. money for a district specific project like a bridge, hospital or university).  You may need to follow-up again around the time the staff says they will have an answer from their chain of command.

4.   If you need assistance or want to talk through the process please email or call Oscar Mairena at (202) 434-8058 or omairena@NASTAD.org. If the staff member requests “report language” or “program language,” please contact Oscar and he will provide that for you. Please also share positive responses with the Hepatitis Appropriations Partnership by contacting Oscar.

Oscar Mairena
Manager, Viral Hepatitis/Policy and Legislative Affairs
National Alliance of State & Territorial AIDS Directors (NASTAD)
444 North Capitol Street NW, Suite 339
Washington, DC  20001
Phone: (202) 434.8058      Fax: (202) 434.8092
omairena@NASTAD.org     www.NASTAD.org
“Bridging Science, Policy and Public Health”