Hep B Blog

Hepatitis Delta: Flying Under the Radar in the U.S.

As of 2019, the Centers for Disease Control and Prevention (CDC) requires over 100 diseases, infections and conditions – including hepatitis A, B and C – to be reported by state and local health departments. Physicians who diagnose these conditions, and diagnostic laboratories, are required to report confirmed and/or suspected cases to health departments, who then notify the CDC. This requirement allows the government to monitor disease patterns and track outbreaks to contain the spread of disease and protect the public. While all other forms of viral hepatitis are federally ‘reportable’, hepatitis delta cases are not required to be reported. Hepatitis delta is the most severe form of viral hepatitis, and spreads similarly to hepatitis B; through blood and sexual fluids, making it a public health threat, particularly for the 2.2 million people who already have hepatitis B in the U.S.

Hepatitis delta can only be contracted along with hepatitis B or after someone is already infected with hepatitis B. Acute cases can cause liver damage and even liver failure, and in chronic cases, can accelerate the rate of liver disease progression, as there are no effective treatments available. Although estimated to affect 5-10% of hepatitis B patients, hepatitis delta is severely underdiagnosed, leaving the true disease burden largely unknown in the U.S. and worldwide.

In conjunction with awareness efforts, adding hepatitis delta as a reportable disease could reveal a more accurate prevalence landscape of hepatitis B and delta coinfection and allow for more effective prevention efforts. The CDC asserts that “reporting of cases of infectious diseases and related conditions has been and remains a vital step in controlling and preventing the spread of communicable diseases,1” yet hepatitis delta has still been left out of the list of nationally reportable diseases. While notifying CDC is only voluntary2, 23 states have designated hepatitis delta infections as reportable to local and state health departments, allowing for surveillance of outbreaks, particularly relevant to the current nationwide opioid crisis.

Worchester, Massachusetts, which is currently experiencing a hepatitis A outbreak, also saw one of the worst hepatitis delta outbreaks in the country in the mid 1980’s. The infection was seen among drug users and their sexual partners, sickened 135 people, and killed 15. In those infected with hepatitis B, delta coinfection was present in 54% of drug users and 33% of their sexual partners3
. Interestingly, in Massachusetts, only labs (and not clinicians) are required to report hepatitis delta cases. The reporting requirement allowed the state to be alerted of a spike in cases and respond accordingly – a luxury many other states may not have if neither labs nor clinicians are required to report in their state.

Some states are even scaling back their surveillance; in 2016, New York State removed hepatitis delta from their list of reportable diseases, citing just 21 cases in a two-year period and a health code that asserts a “providers obligation” to “report unusual manifestations of novel strains of hepatitis.”4. Although hepatitis delta is more common outside the U.S., there is evidence to suggest persistent and even growing prevalence. A 2016 prevalence map presented by Eiger BioPharmaceuticals revealed New York City as a “hot-spot” for hepatitis delta cases5. Although more recent prevalence studies are sparse, and often include only small sample sizes, several have noted increases in hepatitis delta coinfection among certain groups. One study in Baltimore, published in 2010, compared blood samples from drug users in the 1980’s to samples obtained from 2005-2006 – and found a 21% increase in hepatitis delta coinfection among people already chronically infected with hepatitis B6. A 2015 study analyzed the blood records of 2,100 hepatitis B positive veterans – nearly 4% were coinfected7. A larger study, analyzing chart records of 500 chronic hepatitis B patients in California found that 8% of patients had a delta coinfection8. Another 2018 publication utilized data from 2011-2016 from the National Health and Nutrition Examination Survey (NHANES) and estimated there to be over 350,000 Americans with past or current hepatitis delta9.

While the true burden of hepatitis delta in the U.S. is debated, one study that analyzed diagnosis codes for over 170 million people showed 10,000 coinfected patients newly diagnosed in 2016 alone4. The American Association for the Study of Liver Diseases (AASLD) recommends delta testing in high-risk groups, but countless journals and leading hepatologists have called for universal testing of hepatitis B patients for hepatitis delta9,10,11  which could reveal thousands of unknown infections. Low awareness, testing, and the lack of inclusion on the notifiable diseases list contribute to the unclear picture of prevalence in the U.S. Inconsistent reporting across states creates holes in data collection and opportunities for missed outbreaks and subsequent treatment and prevention efforts. Adding hepatitis delta to the list of reportable diseases nationally could be the key to understanding who this ‘hidden epidemic’ is affecting, and where, and allow for effective surveillance to prevent future infections.

For more information about Hepatitis Delta Connect or hepatitis delta, visit www.hepdconnect.org or email connect@hepdconnect.org.

References:

1. Centers for Disease Control and Prevention. (1990, June 22). Mandatory Reporting of Infectious Diseases by Clinicians. Morbidity and Mortality Weekly Reports. Retrieved from https://www.cdc.gov/mmwr/preview/mmwrhtml/00001665.htm.

2. Centers for Disease Control and Prevention. (2018). National notifiable diseases surveillance system (NNDS): Data collection and reporting. Retrieved from https://wwwn.cdc.gov/nndss/data-collection.html

3. Lettau, L. A., McCarthy, J. G., Smith, M. H., Hauler, S. C., Morse, L. J., Ukena, T., et al. (1987). Outbreak of severe hepatitis due to delta and hepatitis B viruses in parenteral drug abusers and their contacts. N Engl J Med, 317(20), 1256-1262.

4. The City of New York. (2016). Hepatitis D and E and other suspected infectious viral hepatitides reporting. Retrieved from http://rules.cityofnewyork.us/tags/reportable-diseases.

5. Martins, E and Glenn, J. Prevalence of Hepatitis Delta Virus (HDV) Infection in the United States: Results from an ICD-10 Review. Poster Sa1486 DDW May 2017.

6. Lauren M. Kucirka, Homayoon Farzadegan, Jordan J. Feld, Shruti H. Mehta, Mark Winters, Jeffrey S. Glenn, Gregory D. Kirk, Dorry L. Segev, Kenrad E. Nelson, Morgan Marks, Theo Heller, Elizabeth T. Golub, Prevalence, Correlates, and Viral Dynamics of Hepatitis Delta among Injection Drug Users, The Journal of Infectious Diseases, Volume 202, Issue 6, 15 September 2010, Pages 845–852.

7. Kushner, T., Serper, M., & Kaplan, D. E. (2015). Delta hepatitis within the veterans affairs medical system in the United States: Prevalence, risk factors, and outcomes.

8. Gish, Robert & Yi, Debbie & Kane, Steve & Clark, Margaret & Mangahas, Michael & Baqai, Sumbella & A Winters, Mark & Proudfoot, James & Glenn, Jeffrey. (2013). Coinfection with Hepatitis B and D: Epidemiology, Prevalence and Disease in Patients in Northern California. Journal of gastroenterology and hepatology. 28. 10.1111/jgh.12217

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 thatfor 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.

National Public Health Week 2019: Let’s Create a Healthier World by Ending Hepatitis B

This week is National Public Health Week in the United States but this year’s theme – Creating the Healthiest Nation: For Science. For Action. For Health –  can be applied globally. Over 292 million people around the world are currently living with chronic hepatitis B, yet only 10% of patients are aware of their infection. In order to create the healthiest world possible, public health needs to address all threats to the public’s health – including those we don’t see.

How can we create a healthier world by eliminating hepatitis B?

  • Increase provider knowledge of hepatitis B – In the U.S. and around the globe, hepatitis B is often overshadowed by other infectious diseases, including HIV and hepatitis C. Because of this, there is a lot of confusion and misinformation about who should be tested and how to proceed if a person tests positive for the hepatitis B surface antigen. Educating healthcare providers about hepatitis B testing, management, and treatment, and helping providers understand the importance of helping high-risk patients know their hepatitis B status, is an important strategy. As early treatment and regular monitoring can prevent liver damage and lower a person’s risk of liver cancer, improved provider knowledge can help hepatitis B patients live long, healthy lives! Hep B United and the Centers for Disease Control and Prevention’s (CDC) Know Hepatitis B campaign has multiple resources for professionals, and the Hepatitis B Foundation lists international clinical guidelines for testing and treating patients.

 

  • Improve Vaccination Rates – One way to eliminate hepatitis B is to eliminate transmission. As the infection is most commonly passed from mother-to-child during birth, it is important for countries to adopt the universal hepatitis B vaccine birth dose – a policy that is widely credited with reducing this form of transmission even if the mother tests positive for hepatitis B! Under the universal birth dose policy, newborns receive their first dose of the hepatitis B vaccine within their first 24 hours of life. However, in the U.S., if the mother tests positive for hepatitis B, the child will receive the first dose of the vaccine and one shot of hepatitis B immune globulin (HBIG). According to the CDC and the Immunization Action Coalition, up to 95% of chronic infections caused by mother-to-child transmission can be prevented through this method!

 

While it is important to vaccinate newborns and infants, adults must be vaccinated too. In the United States, only about 25% – 30% of adults have completed all three doses of the vaccine. Completing the vaccine series is extremely important, as it takes all three doses, according to schedule, in order to receive long-lasting protection. As the infection can be spread through unprotected sex, sharing items such as toothbrushes and razors, or unsterile needles that could be used in tattoo parlors or medical settings, increasing the vaccination rate among this population is important in order to prevent transmission.

 

  • Encourage People to Get Tested – Hepatitis B can increase a person’s chances of cirrhosis and liver cancer, but when paired with other health conditions such as diabetes or hepatitis C, the risk for liver damage becomes even greater. As hepatitis B often has no symptoms, a person who is living with multiple health conditions may not realize that they need to be taking additional precautions to stay healthy. In addition, a recent study has shown that a large number of cancer patients have had past or present hepatitis B infections that were previously undiagnosed. Testing can help improve health outcomes for patients, as they can take the necessary precautions to prevent damage and doctors can make educated treatment decisions that would not negatively impact the hepatitis virus or cause it to reactivate.

 

To many patients, hepatitis B is not only a physical issue; it also has an emotional toll. From attempting to navigate the healthcare system to facing workplace discrimination, hepatitis B patients all over the world can face stress and mental distress. Cultural myths and stigma can negatively impact how infected individuals and their families interact with their communities and even each other. Addressing these issues is a major part of eliminating the infection once and for all. So, for science, for action, and for health, we must all work together to advocate for patients, protect our communities, and end hepatitis worldwide!

To hear real patients describe their struggles with hepatitis B, you can view our #justB story campaign.  

Want to help raise hepatitis B awareness during National Public Health Week? Join us on social media by using the hashtags #NPHW or #NationalPublicHealthWeek on Twitter and follow along as we participate in the American Public Health Association’s twitter chat on Wednesday, April 3rd at 2 pm!