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Hepatitis B Advocacy, Hepatitis B Treatment, Living with Hepatitis B

Fighting For Fair Treatment Access: Improved Medication Access In The U.S.

Ensuring that people with hepatitis B have access to affordable medications is one of our top priorities. If you or someone you know is currently prescribed Vemlidy (tenofovir alafenamide), entecavir, or tenofovir, we have important news that could help make your medications more affordable.

Vemlidy will once again be covered under CVS Caremark

The Hepatitis B Foundation, along with our network of patients, providers and partners, has successfully advocated for improved access to the hepatitis B medication Vemlidy in the US! In July 2019 CVS Caremark – one of the nation’s leading pharmacy benefit managers – stopped providing coverage for Vemlidy. This decision impacted thousands of Americans who rely on this life-saving drug to manage their hepatitis B.
Thanks in part to our advocacy, the company announced last week that they will resume coverage of Vemlidy for their plan members as early as October 2019! In addition, Gilead Sciences, the manufacturer of Vemlidy, is offering increased patient assistance for patients until the coverage takes effect.
What’s next: If you or a loved one are taking Vemlidy and have a CVS Caremark prescription plan, the date that coverage will resume depends on your plan type. On October 1, 2019, Vemlidy will be processed for those under the Advanced Control Specialty Formulary. For those with a Value Formulary, Vemlidy will be covered beginning on January 1, 2020.
To offset the costs, until January 1, 2020, Gilead Sciences will provide $1,000 a month (for up to $5,000) to offset the costs of treatment. Those interested can go to Gilead’s website and apply for a co-pay card ; insurance is not needed.
Low-cost options for patients on entecavir and tenofovir
n June 2019, the Hepatitis B Foundation partnered with Rx Outreach , a nonprofit mail order pharmacy, to offer two of the most common hepatitis B medications at low cost to eligible patients.
Eligible individuals can get a 30-day supply of tenofovir for $25 or a entecavir for $45. Eligibility is based upon household income, not on insurance status or prescription drug coverage. Our partnership with Rx Outreach will help to fill a gap in access to affordable medication and help to lessen the burden of one of the many forms of discrimination that those living with hepatitis B must face.
Visit the Rx Outreach website to learn more: https://rxoutreach.org/hepb/

Hepatitis Delta (HDV)

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 Advocacy, Hepatitis B Prevention, Hepatitis B Treatment

Hepatitis B Foundation Mini-Grantees 2016

At the Hepatitis B Foundation, we have many research and programs throughout the year. With the Association of Asian Pacific Community Health Organizations (AAPCHO), we co-founded and co-chair Hep B United, a national coalition dedicated to reducing the health disparities associated with hepatitis B by increasing awareness, screening, vaccination, and linkage to care for high-risk communities across the United States. The coalition works to reduce the impact of hepatitis B through prevention and education efforts, addressing perinatal transmission, improving screening and linkage to care, contributing to national surveillance data, and advocating on a national level.

Last year, the Hepatitis B Foundation offered mini-grants for one year to Hep B United coalition partners working on hepatitis B education, screening and linkage to care activities. These grants ranged between $5,000 to $10,000 each. The mini-grants were offered to enhance the capacity of Hep B United coalition partners to conduct HBV education, testing and linkage to care in their local Asian American, Native Hawaiian and Pacific Islander (AA & NHPI) communities to advance the hepatitis B priority areas of the U.S. Department of Health and Human Services’ National Viral Hepatitis Action Plan (VHAP).

Courtesy of CPACS

The 2016-17 project year offered grants to 9 coalition partners, which included Center for Pan Asian Community Services, Inc (CPACS), Hepatitis B Initiative-Minnesota (HBI-MN), Midwest Asian Health Association (MAHA), Hepatitis B Initiative-DC (HBI-DC), Asian Services in Action (ASIA), Asian American Community Services (AACS), Asian Pacific Health Foundation (APHF), and HOPE Clinic. Together, Hep B United coalition partners screened 4,649 people, educated and reached out to 11,884 people, and distributed 13,112 handouts. Some coalition partners were featured in  newspapers, on TV with 496,189 views, and in a social media video. Mini-grantees also participated in activities such as developing key partnerships in local communities, providing linkage to care, and conducting provider training. One coalition partner also screened the “Be About It” documentary.

For 2017-2018 mini-grants, six Hep B United coalition partners (listed below) were recently awarded mini-grants. We are excited to kick off these projects and look forward to their future endeavors and results.

·     Asian American Community Services (Columbus, OH) -AACS’ Live Healthy – Hep Free project will use the H+EAL model to increase HBV education and awareness and encourage testing by targeting high school students and their parents.

·       Asian Pacific Community in Action (Phoenix, AZ) – APCA will be organizing community town hall events in collaboration with the #justB campaign across Maricopa County to collect and share stories that promote increased awareness and proactive approaches to treatment for hepatitis B.

·       Asian Pacific Health Foundation (San Diego, CA) – APHF will be working to increase community knowledge and awareness of hepatitis B, determine gaps in knowledge, develop in-language education materials, and provide hepatitis B screening within high-risk communities throughout San Diego.

·       Asian Services in Action (Cleveland, OH) – ASIA will be using community health outreach workers to increase HBV education and screening, including outreach to AAPI businesses in Akron and Cleveland, OH.

·       Center for Pan Asian Community Services (Atlanta, GA) – CPACS’ project focuses on expanding their Atlanta-based hepatitis B coalition, increasing the number of Georgia AAPI community members who know their HBV status through community and provider education, and improving testing and linkage to care services throughout the city.

·       Philadelphia Department of Public Health (Philadelphia, PA) -The Perinatal Hepatitis B Prevention Program auxiliary project will create new education modules for prenatal and pediatric care and conduct on-site provider education sessions to improve knowledge and care for infected mothers.

The 2017-18 project period expanded its priorities to address perinatal transmission and education through storytelling efforts with the #JustB Storytelling Campaign in addition to screenings and linkage to care.   The overall success of the Hep B United mini-grants has been proven through the significant number of high-risk populations educated, screened and linked into appropriate care for hepatitis B.   We look forward to updating you further in the coming months as we continue to highlight the national work of the Hepatitis B Foundation and Hep B United partners around the U.S.

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention

First World Hepatitis Summit Focuses on Global Plan for Elimination by 2030

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The joint North and South Americas group build relationships across borders to eradicate hepatitis B.
The North and South Americas group builds relationships to eradicate viral hepatitis.

The mood was euphoric. It was a love fest, actually. Last week, more than 600 policy makers, public health experts, and representatives from non-governmental organizations and patient advocacy groups from 80 countries were invited to participate in the first World Hepatitis Summit in Scotland hosted by the World Hepatitis Alliance in partnership with the World Health Organization (WHO). The Hepatitis B Foundation was pleased to be invited and to speak during the pre-summit meeting as well.

The message was serious. Hepatitis B and C kill more people each year than HIV/AIDS and tuberculosis, and combined are the seventh-leading cause of death worldwide, yet viral hepatitis as a global health concern remains mostly invisible and under-funded. Continue reading "First World Hepatitis Summit Focuses on Global Plan for Elimination by 2030" →

Hepatitis B Treatment, Living with Hepatitis B

The Hepatitis B Patient Community Loses Its “Mom”

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Hep B List "parents" Sheree Martin and Steve Bingham at a 2005 patient conference.
Hep B List “parents” Sheree Martin and Steve Bingham at a 2005 patient conference.

The hepatitis B community recently lost its much-loved advocate, resource and “mom,” Sheree Martin. She was co-owner of the Hepatits B Information and Support List from 1998 to 2011 and comforter and consultant to thousands of people around the world who live with hepatitis B.

The reach of her kindness and wisdom cannot be under-estimated. In the early days of hepatitis B, when medical treatment was misguided and stigma ran rife, Sheree nurtured a safe, online community that provided reassurance and accurate medical information. For many, it was the first time they were able to share the confusion, loneliness and frustration of living with chronic hepatitis B with people just like them. Continue reading "The Hepatitis B Patient Community Loses Its “Mom”" →

Hepatitis B Prevention, Living with Hepatitis B

Preparing for College, Dating and Disclosing Hepatitis B

Image courtesy of jesadaphorn at FreeDigitalPhotos.net
Image courtesy of jesadaphorn at FreeDigitalPhotos.net

When my daughter, who has chronic hepatitis B, packed for her freshman year of college, I peppered her with warnings about the need for standard precautions and condoms. I suggested wording for a future conversation where she would disclose her infection and negotiate safe sex with a potential partner.

I hoped these verbal dress rehearsals would empower and protect her, especially if that potential boyfriend turned her down. I wanted her to know that any rejection would not be about her or her hepatitis B, it would be about his fears. Continue reading "Preparing for College, Dating and Disclosing 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" →

Liver Cancer, Living with Hepatitis B

It’s Time to Take On the Deadliest Cancers

congressional briefing
Congressional briefing organized by the Deadliest Cancers Coalition with the Congressional Caucus on Deadliest Cancers, Thursday, June 19, 2014, Washington, DC

Recent projections for the top cancer killers in 2030 confirmed some encouraging trends but also sounded a warning bell. Continue reading "It’s Time to Take On the Deadliest Cancers" →

Liver Cancer

Deadliest Cuts of All

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cancer-ribbons_final2

Just 8 cancers (ovary, myeloma, brain, stomach, esophagus, lung, liver, and pancreas) will cause nearly half of all cancer deaths in 2014.

Joining a deadly cancers “club” is not on anyone’s wish list. Yet Liver Cancer Connect, a dedicated program of the Hepatitis B Foundation, welcomed the opportunity to become a member of the Deadliest Cancers Coalition.

The Coalition was established in 2008 by the Pancreatic Cancer Action Network and other patient advocacy organizations and professional societies.

The group addresses policy issues related to the nation’s deadliest (recalcitrant) cancers. These are defined as the cancers that have 5-year relative survival rates below 50%.

While various types of cancers fit this definition, it is worth noting that nearly half of the 585,720 cancer deaths expected in 2014 will be caused by eight deadly cancers: ovary, myeloma, brain, stomach, esophagus, lung, liver, and pancreas.

Over the past 40 years, the overall 5-year relative survival rate for all cancers has increased from about 50% to 68%. This encouraging progress was mainly thanks to significant federal funding, through the National Institutes of Health (NIH) – the world’s premier supporter of biomedical research – and the National Cancer Institute (NCI). Those federal funds have been matched by investments from pharmaceutical companies, nongovernmental organizations, and states.

But some cancers have not even reached the 50% survival benchmark, let alone surpassed it. To improve survival and outcomes for people with these deadliest cancers, Congress passed the landmark 2012 Recalcitrant Cancer Research Act.  The law calls on NCI, which is a part of NIH, to develop scientific frameworks to help improve outcomes for people who have cancers with very low survival rates.

Unfortunately, continued budget cuts have led to a 23 percent reduction in NIH’s capacity to fund much-needed medical research, including research that can improve survival rates. And the squabbling over future budgets continues.

To stop further funding cuts, the members of the Deadliest Cancers Coalition are rallying their grassroots organizations to contact congressional representatives and urge them to safeguard federal funding for NIH, including NCI.

That some cancers have survival rates below 50% is deeply troubling. But the funding cuts that threaten cancer research are even more disturbing. In fact, they’re deadly.

Hepatitis B Advocacy, Hepatitis B Prevention

Impressions of the Congressional Briefing and HHS Viral Hepatitis Action Plan Press Release

Last Thursday, May 12th, I attended the Congressional Briefing, and the Press Conference releasing the U.S. Department of Health and Human Services (HHS) Action Plan to Prevent, Care and Treat Viral Hepatitis, in Washington D.C..  The HHS Action Plan is in response to the 2010 Institute of Medicine (IOM) report on viral hepatitis.

I have been involved with viral hepatitis, specifically hepatitis B, from a patient perspective for over a decade, but my recent involvement in the political arena is new.   So, I’m still struggling with the numerous acronyms, political calendars and jargon…

It was encouraging to see members of Congress in attendance at the Congressional Briefing – hosted by U.S. Senator John Kerry (D-MA) and Rep. Mike Honda (D-CA), but it is clear that viral hepatitis needs more champions in Congress.  Congressional leaders who spoke included Rep. Honda (D-CA) , Rep. Cassidy (R-LA), Rep. Judy Chu (D-CA), Rep. Dr. Christensen (D-VI), Rep. Barbara Lee (D-CA), and Rep. Dent (R-PA).  Federal public health leaders Dr. Howard Koh, Assistant Secretary of Health, and Dr. Kevin Fenton, Director, National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention of the CDC  spoke regarding the direction and implementation of the plan.

Congressman Honda’s message was loud and clear to the audience:  “You need to be the megaphone.”  As advocates we need to educate and get our representatives on-board. The other, clear message is that the plan is a strategy with the tactics not yet clearly defined.  More importantly, there is no clear funding dedicated to the roll-out.  Rep. Bill Cassidy, a hepatologist, tells us we must be “fiscally responsible”, and yet he also said “Sometimes you have to increase the budget to reduce the deficit”.  Rep. Donna Christensen, also a doctor, states:  “We can save money and reduce the debt” with the viral hepatitis plan.  As a hepatologist and physician, these representatives understand that money spent on patient education, screening, prevention and treatment will be cost effective over time.  I wonder how many Representatives truly understand the ticking time bomb of this silent epidemic.

The representation at the press conference in D.C. was encouraging –everyone in the room with the same goals.   Dr. Susan Wang, a doctor in NYC spoke of her patient base where one in eight patients are infected with HBV.  Michael Ninburg told his personal story with his fight with hepatitis C, and the successful prevention of HBV from his chronically infected wife to their newborn son.  Michael was cured with the new HCV drugs, and his son was protected by a safe vaccine.  All good.

The HHS Action Plan for Viral Hepatitis will roll out through 2013.  Some of the goals are more attainable than others, such as delivering the first birth dose of the HBV vaccine to infants prior to discharge.  Dr. Koh describes this as the “first shot of life.” Administering prophylaxis and vaccination to infants born to HBV infected mothers is also feasible.  Other goals are loftier, less clearly defined, and will require significant funding.

Dr. Fenton, of the CDC, tells us the viral hepatitis plan will be implemented as a collaborative effort, leveraging resources between government agencies such as HHS, HRSA (Health Resources and Services Adminstration , CDC (Centers for Disease Control), and CMS (Centers for Medicare and Medicaid Services). 

Portions of the plan are dependent on the Affordable Care Act (ACA) and Health Care Reform, which are under attack.  It will be important for these programs remain intact for the plan to be successful.

We are all well aware of shrinking budgets and the need to be fiscally responsible, keeping in mind the human component.  This plan cannot be implemented without collaboration and cooperation between government and community organizations and efforts, and most importantly – funding.

That’s where we, as voting Americans, fit into the equation.  We need to get educate our Representatives and Senators by raising their awareness of viral hepatitis.  We need to tell them there is a plan to combat viral hepatitis.  We need to personalize this, tell our stories, and let them know that we do NOT want funding for viral hepatitis cut from the budget.  

Was your Representative present at the briefing?  Mine was not…

Visit your Representative during Constituent Work Week.  Write a letter, send an email, call and speak to a health staffer, or tweet your Representative, today.

Read the HHS Action Plan to Prevent and Treat Viral Hepatitis.

Baruch S. Blumberg Institute