Hep B Blog

Category Archives: HBV

How To Talk To Your Doctor About Hep B in 5 Minutes

 

Going to the doctor can be an intimidating experience for anyone, but perhaps even more so when you’re living with hepatitis B. You have plenty of questions to ask and not enough time! This guide can help you focus on the important questions and become more comfortable discussing your infection with your doctor. 

  • Be Prepared: With only a limited amount of time to discuss concerns, it is essential to ask what matters most. Write down questions that you have been wondering about in order from most urgent to least. This will ensure that you get the answers that you need the most before you run out of time. We have a list of helpful questions that you can take, or they can help you create your own! You can also take a second person along to take notes and help ask follow-up questions. It may be helpful to organize your questions, previous test results, and any notes that you may have in a single folder to take along with you.

 

  • Do Your Research: Hepatitis B is a complex virus and its lack of symptoms can make it tricky to grasp what is going on inside of your body.  Familiarizing yourself with hepatitis B blood test results, liver enzyme tests, or liver function tests and being aware of test results out of normal ranges can go a long way in helping you understand your own body, and to figure out what questions you should ask. Remember to always get copies of all of your test results so you can monitor how they change over time. If something is abnormal, you can address it immediately. 

 

Be sure you are doing your research on trustworthy websites! Misinformation can be damaging, so it is extremely important to find information that is based upon scientific evidence. How do you know if the information is trustworthy? Some common tips are to look for information from trusted institutions, such as a government health department like the Centers for Disease Control and Prevention (CDC) or established organizations like the American Association for the Study of Liver Diseases (AASLD). You should avoid articles that have anonymous authors, and avoid getting information directly from a website from a company that is trying to sell you something. Academic institutions are a great place to look for information, like a local university or peer-reviewed journal articles. 

  • Review the Guidelines: There are several hepatitis B guidelines on how to prevent, treat, and manage hepatitis B. These are designed by medical experts to help doctors around the world make informed decisions about an individual’s status, and are a great source of information. While some individuals may not qualify for treatment, you can take the guidelines to your appointment and ask the doctor to explain why or why not you are a candidate for treatment at the moment. Just be sure to highlight the parts you wish to review beforehand! View the guidelines here. 

 

  • The doctor is the expert – but so are you!: Doctors can be extremely knowledgeable, but you are the one living in your own body! While hepatitis B often does not have symptoms, other factors can have an impact on your infection. One example is medication. Some medications may interact negatively with your liver, which can have an impact on the virus and result in serious consequences. If you notice any changes in your body after taking a new medication, you should alert your doctor to prevent potential liver damage. Your doctor and pharmacist should always be aware if you are living with (or have recovered from) hepatitis B so they can prescribe proper medications, but if an error occurs, it is important to speak up! 

Ensure you inform your doctor of any vitamins, supplements or herbal remedies you may be taking. Companies making these alternative therapies are not regulated so there may be no testing for quality and purity. You do not know what you’re getting from bottle to bottle or even dose to dose! Some alternative medicines can do more harm than good to your liver. 

You should always be aware of what type of doctor you are talking to as well. Some primary care doctors may be more experienced in chronic hepatitis B management than others. Gastroenterologists and hepatologists are the experts in the liver. It is recommended that individuals living with hepatitis B see a hepatologist but if this is not possible, a knowledgeable primary care doctor should be able to monitor you. If you feel that the doctor you are seeing is not experienced in managing hepatitis B, do not hesitate to ask them to review the official management guidelines with you, or to switch doctors. Your health is valuable and should be treated as such! 

When To See the Doctor Immediately

In some cases, those living with chronic hepatitis B can experience symptoms such as jaundice (yellowing of the skin or eyes), ascites (fluid in the abdomen that gives it a hard, round appearance), or severe vomiting and diarrhea. If any of these symptoms occur, it is extremely important to get to a doctor or healthcare professional as soon as possible. Severe symptoms indicate that immediate blood work is needed to prevent severe liver damage or liver failure. Remember that liver disease and liver cancer are both manageable if diagnosed early and monitored regularly, so it is important to attend regular doctor appointments, keep a clear record of your medical history, and become your own health advocate by empowering yourself with knowledge and getting involved in your care! 

CVS Caremark : Re-Add Vemlidy To Your Formulary

UPDATE: The Hepatitis B Foundation and Hep B United, 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 – a subsidiary of CVS Health and 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.

Our members took swift action. Together, we sent over 20 letters from partner organizations and gathered over 250 individual signatures for a petition encouraging CVS Caremark to provide coverage for this essential medication. 
The company announced last week that they will resume coverage of Vemlidy for their plan members as early as October 2019! Thank you to everyone who helped us to advocate for this important change. We firmly believe that all FDA-approved medications should be available for doctors to prescribe to their patients, and this change will ensure that those on CVS Caremark plans have access to this life-saving drug.
What’s Next:
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.
Until January 1st, Gilead Sciences – the creators of Vemlidy – 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.
Thank you to everyone who signed the petition, wrote a letter, or simply shared the information. Because of you, those who rely on Vemlidy now have one less barrier to accessing their needed treatment!

A few months ago, CVS Caremark – a subsidiary of CVS Health – announced their intentions to remove Vemlidy from their list of covered medications, or formulary. With over 2.2 million individuals in the United States living with chronic hepatitis B, this decision impacts thousands of Americans who rely on this life-saving drug to prevent cirrhosis and liver cancer.

CVS Caremark is the second-largest Pharmacy Benefits Manager (PBM) in the United States. As a PBM, Caremark manages prescription drug benefit plans for payers including health insurers and large employers. One of their main tasks is to negotiate drug prices with manufacturers and develop and maintain formularies on behalf of health insurers, which influence which drugs are available to patients on their prescription drug plan and determine out-of-pocket costs. Negotiations between PBMs and drug companies are common. However, they create a dangerous, unstable health and financial situation for those suffering from chronic illnesses.

When it comes to the treatment of chronic illnesses like hepatitis B, medical decisions are best made based upon knowledgeable and informed discussions between the doctor and the patient. After all, doctors have been tracking and monitoring how the virus impacts an individual for many months, if not years, and a patient is aware of how their body reacts to certain medications. CVS Caremark’s decision to remove Vemlidy from their formularies limits the ability of providers to make the best treatment choice for their individual hepatitis B patients.

Vemlidy is one of just three first-line hepatitis B treatments. First-line treatments are medications that have been proven to be highly effective with the least amount of side effects. For some individuals, this drug is the best option, as other FDA treatments can increase their risk of kidney disease and bone density loss. Hepatitis B expert and Medical Director of the Hepatitis B Foundation Robert G Gish, MD, notes two separate studies where tenofovir alafenamide (TAF) (Vemlidy) had lower amounts of bone density loss and kidney impairment than tenofovir disoproxil fumarate (entecavir), another first-line treatment. In order to properly help their patients, doctors need to have a full range of tools at their disposal. All FDA approved medications should be available for doctors to choose from.

The Hepatitis B Foundation’s Medical and Scientific Advisory Board is also concerned about the negative health impacts of Caremark’s decision. “TAF is less likely to cause adverse bone mineral density and renal dysfunctions than Tenofovir disoproxil fumarate (TDF). This is true not only for patients at risk of these complications but the overall hepatitis B patient population as demonstrated in clinical studies comparing TAF and TDF. By removing Vemlidy from the formulary plan, CVS Caremark is implementing a significant barrier to thousands of Americans who may need and/or rely on this drug to manage their hepatitis B….We are not advocating that all hepatitis B patients have to be treated with TAF. We believe that this decision should be made by the patient’s doctor with the patient.”

What Does This Mean: 

Now that Vemlidy has been removed from Caremark’s list of covered treatments, those living with chronic hepatitis B will either have to pay the full price or switch to another medication. To put this into perspective, the average retail price of Vemlidy is $1,350 USD a month. The average cash price reached $1,650 USD in July. There is no generic version of the drug. Like other hepatitis B treatments, Vemlidy must be taken daily over the course of several years to be effective; an individual paying the average retail price would have to pay approximately $16,200 a year to access their medication.

Others will be forced to change from Vemlidy to a similar treatment that is cheaper, but may be less effective with safety issues. This practice is known as non-medical switching: when insurers or PBMs make changes to a formulary primarily due to financial negotiations with manufacturers, in exchange for greater market share.

According to the Alliance for Patient Access, non-medical switching is associated with poor health outcomes. One of their recent studies found that patients who had been switched off their preferred medication experienced complications from the new medication. One in 10 reported being hospitalized for complications after the switch, approximately 40% stopped taking their medication completely, and 60% reported side effects from the new medication. These complications are extremely dangerous for individuals taking hepatitis B medication, as stopping suddenly and without consulting an expert can cause the virus to flare and increase the risk of liver disease, and liver cancer.

Taking Action

Hep B United (HBU) – a program of the Hepatitis B Foundation and a national coalition of over 40 organizations – has started a petition and will be sending a letter to CVS Caremark.

Individuals can ask CVS Caremark to reinstate Vemlidy by signing this petition! Organizations can add their names to HBU’s official letter commenting on Caremark’s decision. We hope that CVS Caremark will honor their commitment to the health of Americans and add Vemlidy back on their formularies!

Join the Conversation at the 2019 Hep B United Summit; Watch Summit Sessions On Facebook Live!

 

 

The annual Hep B United Summit, organized by the Hepatitis B Foundation, convenes in Washington D.C. from Wednesday, July 24 through Thursday, July 25. The theme of the 2019 summit is Eliminating Hepatitis B: Local Change, Global Impact. National and local coalition partners, experts, stakeholders, and federal partners will meet to discuss how to increase hepatitis B testing and vaccination and improve access to care and treatment for individuals living with hepatitis B.

You can watch many of these sessions on Facebook Live. You can also follow the conversation at the Summit on Twitter with #Hepbunite19!

Facebook Live video streaming is available to all Pages and profiles on Facebook. Check out the agenda below and go to the Hep B United Facebook Page to view the live broadcast. Some breakout sessions may be broadcast from the Hepatitis B Foundation Facebook Page. Sessions will also be available following the broadcast for those who are not able to join us live.

Here are the details on the sessions that will be broadcast on Hep B United’s Facebook Live unless noted otherwise:

Day 1 – Wednesday July 24:

8:00 – 9:00 AM:  Welcome and Introductions
Tim Block, PhD, President & Co-Founder, Hepatitis B Foundation
Chari Cohen, DrPH, MPH, Co-Chair, Hep B United and Senior Vice President, Hepatitis B Foundation
Jeff Caballero, MPH, Co-Chair, Hep B United and Executive Director, Association of Asian Pacific Community Health Organizations (AAPCHO)

9:00 AM: CDC Division of Viral Hepatitis 
Carolyn Wester, MD, MPH, Director, Division of Viral Hepatitis, Centers for Disease Control and Prevention

9:30 AM: The Path to a Hepatitis B Cure
Tim Block, PhD, President and Co-Founder, Hepatitis B Foundation

10:15 AM: Local Initiatives: Eliminating Hepatitis B Across the Lifespan
Moderator: Catherine Freeland, MPH, Public Health Program Manager, Hepatitis B Foundation
Panelists:
Moon S. Chen, MPH, PhD, Professor, University of California – Davis
Liz Tang, Health Care Access Specialist, and Farma Pene, Health Care Coordinator, New York City Department of Health & Mental Hygiene
Chelsie Porter, MPH, Prevention & Outreach Program Manager, Hepatitis Education Project

11:15 AM: Integrating Systems Level Changes to Eliminate Hepatitis B
Moderator: Chari Cohen, DrPH, MPH, Senior Vice President, Hepatitis B Foundation
Panelists:        
Jeff Caballero, MPH, Executive Director, AAPCHO
Su Wang, MD, MPH, Medical Director, Center for Asian Health, Saint Barnabas Medical Center, Livingston, NJ
Richard Andrews, MD, Research Director, HOPE Clinic, Houston, TX

12:30 PM: Lunch Keynote Presentation
Center for Disease Analysis Foundation
Devin Razavi-Shearer, Hepatitis B/D Project Lead

 1:45-3:00 PM  BREAKOUT SESSIONS I

Innovative Strategies to Conduct HBV Education, Testing, and Linkage to Care
Discuss effective outreach strategies to conduct HBV education, testing, and patient navigation among high-risk communities.
Moderator: Sherry Chen, MPH, CHES, CDC Division of Viral Hepatitis

Panelists:
Paul Lee and Ohkyun Ko, Korean Community Services, New York, NY

Chooson Byambaa & Tuya Lkhaijav, Hepatitis B Initiative of Washington, DC
Alia Southworth, Asian Health Coalition, Chicago, IL

Increasing HBV Provider Education (HepBFoundation Facebook)
Join the National Task Force on Hepatitis B to discuss the development of provider education tools to manage chronic hepatitis B in the primary care setting.
Facilitators: Amy Trang, PhD, MEd, Administrator and Richard Andrews, MD, Co-Chair, National Task Force on Hepatitis B

 

3:15 PM – 4:45 PM     BREAKOUT SESSIONS II

Local, National, and Global Efforts to Increase HBV Testing and Education Among African Communities (HepBFounation Facebook)
Discuss pioneering efforts and strategies to raise awareness and promote testing in African communities, whose hepatitis B burden rivals that of Asian Americans. Learn tips for education and how your organization can begin or expand current work.
Moderator: Cynthia Jorgensen, DrPH, CDC Division of Viral Hepatitis

Panelists:
Oni Richards, African Family Health Organization, Philadelphia, PA
Chioma Nnaji, Multicultural AIDS Coalition, Boston, MA
Sierra Pellechio, CHES, Hepatitis B Foundation
Catherine Freeland, MPH, Hepatitis B Foundation

Combating HBV-Related Stigma and Discrimination
Discuss the impact of HBV-related stigma and development of policies to combat institutional discrimination.
Moderator: Maureen Kamischke, Hepatitis B Foundation

Panelists:
Vrushabh Shah, MPH, NASTAD
Nadine Shiroma, Alexa Canizzo,, Hepatitis B Foundation

 

 Day 2 – Thursday July 25

8:30 AMNational Action Plan to Eliminate Hepatitis B
Carol Jimenez, Deputy Director for Strategic Initiatives,  Office of Infectious Disease and HIV/AIDS Policy, U.S. Department of Health and Human Services

9:00 AM: Global Efforts to Eliminate Hepatitis B
Su Wang, MD, MPH, President-Elect, World Hepatitis Alliance

  9:30 AM: Patients Driving Change: #justB Storytelling Campaign
Moderator: Rhea Racho, MPAff, Public Policy & Program Manager, Hepatitis B Foundation
#justB Storytellers Panel: Cuc Kim Vu, Peter Vo, Bright A., Xuan Phan, and Jacki Chen

11:00 AM: Improving Access to Hepatitis B Treatment
Panelists:
Michaela Jackson, MS, Public Health & Outreach Program Coordinator, Hepatitis B Foundation              
Alyssa Gallipani, PharmD, BCACP, Ambulatory Care Specialist and Clinical Assistant Professor of Pharmacy Practice, RWJ Barnabas Health & Fairleigh Dickinson University
Carl Schmid, MBA, Deputy Executive, Director, The AIDS Institute

 12:15 PM:

EliminatingTuberculosis in Asian American Communities
Nickolas Deluca, PhD, Branch Chief, Communications, Education, and Behavioral Studies, Division of TB Elimination, Centers for Disease Control and Prevention

 1:00 PM:  HBU Coalition Strategies
Facilitator: Amy Trang, PhD, Administrator, National Task Force on Hepatitis B

Not able to join the sessions with Facebook Live? Follow the conversation on Twitter using the #Hepbunite19 hashtag. Follow the events, retweet and engage with event attendees and help us raise hepatitis B awareness in the U.S. and around the globe. We’ll also be posting on twitter during our Advocacy Day, Tuesday, July 23rd.

World Hepatitis Day is July 28th, and this Summit is an opportunity to share with the world what we’re doing to help those living with hepatitis B in our communities. Other popular hashtags for World Hepatitis Day, and to raise hepatitis B awareness, include: #NOhep, #KnowHepB, #WorldHepatitisDay, #WorldHepDay, #WHD2019, #FindTheMissingMillions #hepatitis, #hepatitisB, #HBV, #hepB, #justB. Connect with, follow and engage with fellow partners and advocates on twitter to keep the hep B conversation going during the Hep B United Summit, World Hepatitis Day events, and beyond.

Check out: @AAPCHOpolicy, @aidsadvocacy, @alex_daleks, @aphfsd, @APPEALhealth, @AVACNow, @bentheactivator, @CAHE_AHC, @catherineafree, @CDAFound, @cdchep, @CDC_TB, @ChoosonB, @hepBaware, @HBIDC, @HepBFoundation, @HepBpolicy, @HepBUnited, @HepBUnitedPhila, @hepdconnect, @HepEduProject, @HepFreeHawaii, @hepfreeNYC, @HHS_ViralHep, @HOPECHC, @iwgroup, @jacki0362, @jeffaapcho, @KCSNY, @kmoraras, @Liz98223514, @nirahjohnson, @NYU_CSAAH, @ponnivp, @randrews98, @RheaRacho, @swang8 @tuugiil73

Missing from the list? Contact the Foundation at info@hepb.org to be added.

We’re having a World Hepatitis Day exhibit on Capitol Hill in the Rayburn Building Foyer,  Friday, July 26th from 10 am to 3 pm. We’ll be asking legislators and partners how they plan to “Find the Missing Millions” living with hepatitis B.

Visit the Hep B United and Hepatitis B Foundation websites for more information about hepatitis B and related programs.

Join us for a Hepatitis Awareness Month Twitter Chat!

Join Hepatitis B Foundation, NASTAD and CDC’s Division of Viral Hepatitis for a Twitter HepChat at 2 p.m. (ET) Thursday, June 13th. The chat will highlight Hepatitis Awareness Month outreach events and allow partner organizations to share their successes, challenges and lessons learned from their efforts. Keep us posted with your events throughout the month with the hashtag #Hepaware19 and remember to join the Twitter Chat conversation with the hashtag #HepChat19.

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