Hep B Blog

Category Archives: Living with Hepatitis B

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! 

Protecting Yourself From Liver Cancer While Living with Hepatitis B

This Liver Cancer Awareness Month, we are connecting the dots between hepatitis B and liver cancer. Hepatitis B is responsible for up to 60% of all liver cancer cases worldwide. In fact, some of the highest rates of liver cancer are found in places with extremely high rates of hepatitis B, such as sub-Saharan Africa and Southeast Asia. Although liver cancer is the sixth most common cancer in the world, it is the second most common cause of cancer deaths. Liver cancer prevention should be a priority for all living with hepatitis B. Luckily, there are steps that you can take to prevent liver cancer – whether you are living with hepatitis B or not! 

The Importance of Regular Check-Ups

Did you know that a chronic hepatitis B infection can lead to liver cancer without signs of previous damage such as cirrhosis?  Many people do not realize that chronic hepatitis B is the primary global risk factor for developing liver cancer. Cirrhosis – or scarring or the liver – is often a risk factor for liver cancer, but it is not always the case for those living with hepatitis B. This is one of the reasons why it is so important for family members and sexual partners of infected individuals to get tested as well! Lack of symptoms does not mean that damage is not occurring. 

Visiting a doctor regularly is the best way to prevent liver cancer if you are living with hepatitis B. The standard recommendation for visiting your doctor is every six months however this can vary based upon the severity of your infection. The doctor will take a few blood tests, along with an ultrasound examination of the abdominal area to determine the health of the liver. Based upon these tests and other risk factors, the doctor will be able to determine if liver damage is occurring and can guide you on which steps you should take next. 

If damage is detected early enough, progression to liver cancer can be prevented through highly effective treatments that stop or slow the virus from reproducing in your liver. However, it is important to note that not everyone living with hepatitis B needs treatment. Current treatments have been proven to be most effective when there are signs of active liver damage. Hepatitis B can be managed through regular monitoring by a knowledgeable doctor and lifestyle changes that can go a long way in protecting your body. 

Early detection of liver cancer is extremely important. The average 5-year survival rate once diagnosed with liver cancer ranges from 10% -14%. However, with early detection and proper treatment, those numbers rise to over 50%! This significant difference is because if liver cancer is caught early, a doctor can link you to life-saving treatments including chemotherapy, surgical options, ablation techniques, intra-arterial therapies or a liver transplant. Regular monitoring by a knowledgeable doctor will hopefully identify the markers of liver cancer before it occurs, but if you are living with liver cancer, there are treatment options and resources available to you. 

Preventing Liver Cancer 

Educating oneself is the first step in prevention! If you have hepatitis B, be aware of the risk factors and behaviors that can increase your likelihood of liver damage and liver cancer, such as consuming alcohol and high amounts of junk food, and lack of exercise. Non-Alcoholic Fatty Liver Disease (NAFLD) can also increase your risk of cancer, so it is important to discuss NAFLD risk factors and prevention tips with your doctor. Groups such as the CDC Division of Viral Hepatitis and the American Association for the Study of Liver Diseases all provide free fact sheets, call lines, and literature by experts that can help you understand what may be occurring in your body and to make educated choices. You can also check out our Liver Cancer Connect resource for more information or for liver cancer support. 

The hepatitis B vaccine is also the first anti-cancer vaccine ever created! Remember that the vaccine is typically given in a set of 3 doses. It is extremely important to take all three in order to receive lifelong protection from hepatitis B-related liver cancer. In the U.S., there is also a 2-dose vaccine available, so you can be fully protected with fewer doses! If you are worried about the cost of the birth dose for your infant or the vaccine for yourself, many countries have free health clinics that can administer it or link you to an organization that can help. 

Another key to preventing liver cancer is to get tested for hepatitis B. If you have not received your vaccine and you think you fall into a high-risk group, talk to your doctor about getting tested. Because hepatitis B often has no symptoms, it is important to get screened even if you do not feel ill. An early diagnosis means that you can begin any needed treatment sooner and prevent irreversible damage from occurring. Like the vaccines, your local doctor or health clinic may be able to test you for free or reduced cost – just ask! Some local community groups also provide free hepatitis B testing, so be sure to look out for flyers and announcements about them in your community as well

Join Us For a Twitter Chat for Liver Cancer Awareness Month!

 

 

 

 

October is Liver Cancer Awareness Month. Each year in the United States, about 33,000 people get liver cancer and a large portion of liver cancer cases are caused by viral hepatitis. Viral hepatitis is preventable and when diagnosed and linked to care early, can be treated to prevent liver cancer from developing. The majority of people living with hepatitis B and hepatitis C are unaware of their status and often find out after serious damage has occurred. Liver cancer is one of the only cancers that continues to rise steadily each year. On Wednesday, October 23 at 3PM ET representatives from Hepatitis B Foundation, CDC’s Division of Viral Hepatitis, and NASTAD will co-host a twitter chat to discuss the link between liver cancer and viral hepatitis as well as the importance of engaging communities most affected, particularly patients, in our response.

A large part of our chat this year is centered upon the patient voice. The patient perspective is essential to our efforts to prevent liver cancer and improving the lives of those affected by it. Jacki Chen, one of the Hepatitis B Foundation’s #justB storytellers and Karen Hoyt, a hepatitis C patient advocate with the National Viral Hepatitis Roundtable,  will be joining this year’s twitter chat as featured guest to share their unique experiences.

Below are the questions to be discussed during the chat. How can you participate? Join the conversation that day and throughout the month with the hashtag #LiverChat19. Share any resources or strategies you have that raise awareness about the link between liver cancer and hepatitis as well as how to better engage communities most affected, particularly patients, in our work. We also encourage you to share any videos or photos you have of your work in your communities or activities during Liver Cancer Awareness Month!

· Q1: What are things everyone should know about liver cancer, and also the link between hepatitis and liver cancer?

· Q2: What can people do to prevent hepatitis, or for those living with hepatitis, what can be done to protect the liver and prevent liver cancer?

· Q3: What are the barriers that keep people from getting screened for hepatitis and liver cancer and how can they be addressed?

· Q4: Why are some communities more vulnerable to hepatitis and liver cancer, and how do we address the disparities?

· Q5: How do we engage communities most affected by hepatitis or liver cancer in our work? Why is this important?

· Q6: What resources are available to educate others about hepatitis B & C and liver cancer? What resources are needed?

· Q7: Who are your key partners in addressing liver cancer? Who would you like to engage more in your work? (Tag them here!)

· Q8: What is one lesson learned or piece of advice for others who want to expand their work on the link between viral hepatitis and liver cancer?

· Q9: Centering the voices of patients and liver cancer survivors is incredibly important in improving our response and ensuring their needs are being met. How do you do this in your work? How can we as a community do this better?

Co-hosts and featured partners of the chat include:

· Hepatitis B Foundation – @hepbfoundation

· NASTAD – @NASTAD

· CDC Division of Viral Hepatitis – @cdchep

· CDCNPIN will be moderating the chat – @cdcnpin

· Jacki Chen – @jacki0362

· Karen Hoyt – @hepatitisIhelpC

· Global Liver Institute- @GlobalLiver

· American Liver Foundation- @liverUSA

Confirmed participants and their handles include:

· National Viral Hepatitis Roundtable- @NVHR1

· Hep B United – @hepbunited

· Hep B United Philadelphia – @hepbunitedphila

· Liver Cancer Connect – @LiverCancerConn

· Hepatitis Delta Connect – @HepDConnect

· Hepatitis Education Project – @HepEduProject

· Minnesota Department of Health – @MNHealth

· Hep Free Hawaii – @HepFreeHawaii

· Hawaii Health – @HIgov_Health

· Hep Free NYC – @HepFreeNYC

· MD Anderson Cancer Center – @MDAndersonNews

· AAPCHO – @HepBPolicy

. HHS Viral Hepatitis – HHS_ViralHep

· Kiiza Alexander – @KiizaAlexander

· Minnesota Health Department – @MNHealth

·HHS Division of Viral Hepatitis – @HHS_ViralHep

·HHS Division of Viral Hepatitis – @HHS_ViralHep

·Rowaye Ridwan – @otunbaridwan

·Hassan Muhammad Bature – @Hasanb1980

·Lilian Mary Nabuya – @Inabunya

·Wenyue Lu – @lu_wenyue

·Dave Nkengeh – @Davy_Tazinkeng

·Hepatitis B Initiative of Washington D.C. – @HBIDC

· Shakur Xassan – @sheykoshee

· Temple University Center for Asian Health- @KnowCancer

· Asian Health Coalition -@CAHE_AHC

·Maryland Cancer Collaborative

Just getting started with Twitter? Do you wish to join the conversation but you don’t know how? Type #LiverChat19 in the search box of the Twitter application to follow the chat, and click on “Latest”. Email michaela.jackson@hepb.org to be added to the list of confirmed participants!

RANN Foundation – Raising Hepatitis B Awareness in India

This post is written by guest blogger Surender, who founded the RANN Foundation – a non-profit organization in India dedicated to educating women and children in a variety of topics – including hepatitis! 

India has one-fifth of the world’s population and carries a large proportion of the global burden of hepatitis B. India harbors 10 to 15 percent of the entire pool of hepatitis B carriers in the world, estimated to be 40 million HBV carriers. About 15 to 25 percent of HBsAg [the hepatitis B surface antigen] carriers are likely to suffer from cirrhosis and liver cancer and may die prematurely. Infections that occur during infancy and childhood have the greatest risk of becoming chronic. Of the 26 million infants born every year in India, approximately one million run the lifetime risk of developing chronic hepatitis B.

RANN Foundation focuses on developing the potential of women and girls to drive long-lasting equitable changes deeply focusing on SDGs mainly 3.3 aims to combat Viral Hepatitis by 2030.

We believe that the best way to unlock human potential is through the power of creative collaboration. That’s why we build partnerships between businesses, NGOs, governments, and individuals everywhere to work faster, leaner, and better; to find solutions that last; and to transform lives and communities from what they are today to what they can be, tomorrow.

My Story:

I was a Human Resource Executive in leading thermal power generation company in India. It was 2010 when during a blood donation camp, I got to know that I have Hepatitis B infection. I had never heard about hepatitis b before this incident. It was a shocking moment for me because I had never gone through any blood transfusion. I discussed with family and prepared all of them for screening of hepatitis B. The results were shocking to all of us as three members had infection of Hepatitis B in my family. It was mother to child transmission. I decided to leave my job, which was the only source of earning for me/family, & started education about the diseases in most vulnerable slums & villages in India. Being a survivor, it was my duty to protect future generations. I started my organization RANN Foundation which aims for awareness and prevention of viral hepatitis in India.

The social stigma surrounding Hepatitis B

I never hide my hepatitis B positive status. In fact, on every occasion, I share my story, but anyone who is living with hepatitis B cannot reveal his/her status due to discrimination in family & society. Discrimination and marginalization of people living with the chronic infection is a major concern that majorly impacts the lives of patients in India. Misconceptions and stigma attached to the disease often leads to marginalization and discrimination against patients. My fight against the disease focuses on multiple fronts – prevention of hepatitis B through vaccination camps of dropout children, conducting education programs on viral hepatitis in schools & urban slums, and providing psychosocial support to patients. Around 1.5 lakh deaths annually and almost 60 million Indians affected, Viral Hepatitis continues to be a serious public health concern. Most of the mortality due to viral hepatitis is attributed to hepatitis B and C, which are also known as silent killers as more than 80% of the infected aren’t aware of their infection.

Project NOhepDelhi: A School Awareness Program

Under Project NOhep Delhi a school awareness program is initiated by RANN Foundation in collaboration with Delhi Commission for Protection of Child Rights (Govt of Delhi) to educate students and teachers about viral hepatitis. The role of students in creating awareness and causing behavioral changes among the general population could go a long way in preventing the spread of viral Hepatitis.

The effort aimed at increasing students’ awareness and knowledge of hepatitis transmission and prevention should, therefore, be of special interest, especially among adolescents and young adults.

At this stage, most detrimental lifelong lifestyles and behaviors are adopted like substance use, alcoholism, etc. which are also a predisposing factor for the contraction of hepatitis infection and other infections. The school is a place where viral hepatitis information can get to adolescents and the teachers are potent instruments for giving out this information. Hence, the need to assess the knowledge of teachers & students about viral hepatitis.

Training of the Students: Senior girls are in the process of taking sessions on viral hepatitis to educate their juniors and other people living nearby their home. Girls were excited while giving their names for the training and showed dedication throughout the program.

Achievements

Project HASI:- RANN in collaboration with Cognizance (IIT- Roorkee) has taken the initiative to educate and empower the rural and urban-rural women of Uttarakhand. We launched the project in October 2018. So far, we have impacted and supported over 4,000 beneficiaries directly and over 1500 indirectly through our community trainers in Haryana & Uttarakhand.

NOhep With Max India Foundation :- We have successfully conducted immunization camps with Max India Foundation catering to 800 children and have provided with hepatitis B vaccinations.

Project NOhep Delhi :- RANN in collaboration with Delhi Commission for Protection of Child Rights (Govt. of Delhi) has taken the initiative to educate and empower the urban slums women & students of govt schools of New Delhi. We have started project Nohep Delhi in 17 govt schools – appox 35 thousand children) & 3 major slums to conduct awareness program on viral hepatitis. An intensive campaign for awareness generation will be held using different methodS such as health awareness camp, meeting, events, street plays, one to one communication, big events and sensitization with various groups of the society

#Tri4ACure: Racing For Hepatitis B Awareness & Cure Research

On September 8th, 2019, Edwin Tan participated in one of the toughest and most exhausting triathlons in the world: the Ironman. The Ironman consists of a 2.4-mile swim, a 112-mile bicycle ride, and a marathon 26.22-mile run raced in that order. It was Edwin’s first time racing in an Ironman, and although it took him over 13 hours – on a cold, rainy day – to finish, he did not give up! 

The completion of the Ironman race marks the end of Edwin’s #Tri4aCure journey, which officially began in June 2019. Since the beginning of the summer, Edwin has competed in 6 races – over 336 miles – to raise money and awareness for hepatitis B research, patient outreach, and education; we are extremely proud of his accomplishments! 

Edwin Tan – a 29-year-old mechanical design engineer from Minneapolis, Minnesota – was diagnosed with hepatitis B in 2014. Like many others, Edwin’s diagnosis came as a surprise. After he learned his hepatitis B status, Edwin decided to learn all that he could about the infection. Through his research, he found that one of the best ways to keep his liver healthy was through small lifestyle changes. Edwin began to pursue healthier life choices by increasing the amount of exercise he was getting and paying closer attention to his diet. 

Edwin’s decision to compete in an Ironman was driven by his hepatitis B journey. Researching the topic made him aware of the lack of education and extreme stigma surrounding the illness. The Ironman was a testament to the strength, endurance, & determination that those living with hepatitis B display each day.  “The theme of this race for me was perseverance, which I felt was fitting for my hepatitis B story, “ said Edwin. “Completing an Ironman, which is regarded as one of the most difficult one-day athletic events, serves as a good example that we each can accomplish anything we want as long as we believe in ourselves.” 

In addition to being one of the Foundation’s supporters, Edwin is also a #justB storyteller! His video is just as inspirational and motivating as his #Tri4ACure journey. “I’m going to prove what I can achieve even while living with hepatitis B,” said Edwin in reference to competing in an Ironman. 

The Hepatitis B Foundation is thrilled to have been a part of such a positive, encouraging adventure. Although the races may be over, you can still contribute to Edwin’s efforts to raise awareness and funds for a cure for hepatitis B right here

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/

Printable Hepatitis Delta Fact Sheets for At-Risk Populations (Available in 5 Languages!)

 

Hepatitis delta is estimated to affect 15-20 million people globally who are also living with hepatitis B. Hepatitis delta’s geographic distribution is not uniform, and does not always follow regions of highest hepatitis B prevalence. Although more recent data is sparse, regions of higher coinfection are thought to be in Mongolia, Eastern Europe (particularly Romania, Russia, Georgia, Turkey), Pakistan, the Middle East and the Amazonian River Basin. The American Association for the Study of Liver Diseases (AASLD) recommends that hepatitis B patients from these areas be tested for hepatitis delta. If you are a community member or community health worker or physician, please utilize our printable fact sheets to help raise awareness about hepatitis B and delta!

Fact sheets are available in 5 languages, including English, Mongolian, Romanian, Russian and Spanish!

English for Patients    English for Providers

Mongolian for Patients   Mongolian for Providers

Romanian for Patients   Romanian for Providers

Russian for Patients   Russian for Providers

Spanish for Patients   Spanish for Providers

For more information on hepatitis B and delta coinfection, visit www.hepdconnect.org or contact us at connect@hepdconnect.org.

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!

My Hepatitis B Viral Load is Low (Or Undetectable), Am I Still Infected with Hepatitis Delta?

For people who have been diagnosed with chronic hepatitis B and delta coinfection, a low or undetectable hepatitis B viral load does not usually indicate that they’ve cleared both infections. This is because, in cases of coinfection, hepatitis delta usually becomes the dominant virus, and suppresses hepatitis B, slowing or even stopping its replication entirely. If someone is still positive for the hepatitis B surface antigen (HBsAg), the hepatitis delta virus can still replicate (often with copies in the millions) and cause potential liver damage  1For this reason, the test to measure hepatitis delta activity, the HDV RNA test, is important in disease monitoring and management  2,3. Available since 2013, the HDV RNA test can be acquired internationally through the Centers for Disease Control and Prevention (CDC), and from several labs in the US. 

For those suspected of having acute hepatitis B and delta coinfection, HBsAg testing should follow 6 months after initial diagnosis. If HBsAg is negative (non-reactive), both infections are likely to have cleared. It’s important to remember that people who contract hepatitis B and delta during one exposure are likely to clear both viruses.  If HBsAg is positive (reactive) after 6 months, both infections are likely chronic (life-long). Those who are known to have a chronic hepatitis B infection and then become infected with hepatitis delta later on, they are likely to develop chronic coinfections 

Following diagnosis with hepatitis B, with or without delta coinfection, it is important to have close, household contacts and sexual partners screened, and to follow simple prevention measures and practice safe sex using condoms.  

Both hepatitis B and delta are prevented with the safe and effective hepatitis B vaccine series.  

For more information on hepatitis B and delta coinfection, visit www.hepdconnect.org or contact us at connect@hepdconnect.org 

References: 

  1. Huang, C. R., & Lo, S. J. (2014). Hepatitis D virus infection, replication and cross-talk with the hepatitisB virus. World journal of gastroenterology20(40), 14589–14597. 
  2. YurdaydınC, Tabak F, Idilman R; Viral Hepatitis Guidelines Study Group. Diagnosis, management and treatment of hepatitis delta virus infection: Turkey 2017 Clinical Practice Guidelines. Turk J Gastroenterol 2017; 28(Suppl 2); S84-S89. Available at: https://www.turkjgastroenterol.org/sayilar/304/buyuk/S84-S89.pdf 
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We’re Here to Help: New Resource to Improve Medication Access in the U.S.

Are you a hepatitis B patient living in the United States? Are you taking entecavir or tenofovir disoproxil fumarate (TDF) to help manage your hepatitis B infection? Thanks to the Hepatitis B Foundation’s new strategic partnership with Rx Outreach – America’s largest fully licensed, non-profit, mail order pharmacy and Patient Assistance Program – you may be able to receive your medication for less than 5% of the average retail price!

Each year, we answer thousands of national and international phone calls, emails, and social media messages from people who have been impacted by hepatitis B. Over the past year, we have seen a significant increase in calls regarding access to medication. The majority of those calls have been from people living in the United States. The ability to access medications is more than just having them available at a local pharmacy – it is about the price as well.

In the United States, life-saving generic treatments can cost more than $830 a month on average. As treatments are typically taken for several years after a person begins, paying such high monthly out-of-pocket costs simply isn’t an option for most people. That’s why we partnered with Rx Outreach to increase patient accessibility to life-saving hepatitis B medications.

We believe that affordable treatments should be low-cost and widely available to everyone who needs them. Hepatitis B antiviral treatments need to be taken daily in order to be effective, and a lack of affordable options force some individuals who are living with chronic hepatitis B to avoid diagnosis and treatment, to stop taking medication or to only take it sporadically, which increases their risk of developing cirrhosis or liver cancer. Our new partnership can help eliminate the need for such potentially harmful actions by providing the same medication at a much lower cost than retail pharmacies, pharmaceutical companies, and insurance plans can offer.

Rx Outreach provides a 30-day supply of entecavir and TDF – two of the most effective, common, and preferred treatments – through the mail. Interested individuals can enroll in the program with 3 simple steps. If you need to transfer your prescription from another pharmacy, you can do that too!

Eligibility Requirements:

Eligibility is based upon household income, not on insurance status or prescription drug coverage. To be eligible for Rx Outreach’s pricing, please review the chart below or you can check your eligibility here. If it appears that you do not qualify but you believe that you should, you can also call Rx Outreach and a representative will assist you.

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. It offers more than 1,000 medication strengths at affordable prices. Since 2010, Rx Outreach has saved people in need more than $662 million on their prescription medication.