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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.

#Tri4ACure: Racing For Hepatitis B Awareness, Cure Research, and Health

Edwin Tan learned about his hepatitis B diagnosis in high school after he was banned from donating blood to the Red Cross. Unsure as to why he was not allowed to donate, Edwin asked his doctor about it a few years later. When the routine blood tests came back with irregular results, the doctor ordered an additional test for hepatitis B; the hepatitis B test came back positive.

Despite the shock of the diagnosis, Edwin did not let it hold him back! He researched the infection and discovered the importance of keeping his liver healthy. He took steps to change his diet and incorporate more exercise into his daily routine. Studies show that regular exercise can greatly reduce the risk of liver disease and liver cancer. After a friend invited him to participate in a small triathlon, Edwin decided that triathlons and racing were the perfect ways to have fun while staying healthy!  

Now, Edwin is competing in a series of six races in midwestern America to help raise  money and awareness for hepatitis B research, patient outreach, and education through the Hepatitis B Foundation! You can make a gift to support Edwin’s fundraising efforts here.

“Hepatitis B is something that doesn’t seem to have a whole lot of awareness around it, has stigma associated with it, and doesn’t seem to attract the same attention as a lot of other major diseases out there,” said Edwin. “I believe that the Hepatitis B Foundation is working to tackle all of these issues and focus on finding a cure for it. Because hepatitis B was the reason I started racing and I am interested in increasing awareness, I found it fitting to race for the Hepatitis B Foundation.”

On Saturday, June 15th, Edwin competed in the Minnetonka Triathlon in Minnetonka, Minnesota – his first of six races this summer. In just under an hour and a half he accomplished: swimming more than 100 yards, biking 15 miles, and running 3 miles!

Edwin’s next race will be on Saturday, June 22nd at Grandma’s Marathon in Duluth, Minnesota and we are looking forward to cheering him as he works hard to raise awareness and prove that those living with hepatitis B can achieve their goals

To follow updates on Edwin’s journey, you can follow the Hepatitis B Foundation or Hep B United on Facebook, Twitter and Instagram. Be sure to use the hashtag #Tri4ACure!

Know Your Rights: Legal Protections for Those Living With Hepatitis B

Despite being the world’s most common liver infection, hepatitis B remains stigmatized and those living with it can still face discrimination from various sources. Each year, the Hepatitis B Foundation answers numerous calls from around the world from people who have faced school, workplace, and travel challenges due to their hepatitis B status. These challenges are typically rooted in misinformation, outdated laws or guidelines, stigma, and an overall lack of awareness. However, there are laws and organizations who will work to protect you from such discrimination!

The Hepatitis B Foundation has added a new section to our website that focuses on the rights of people living with hepatitis B. We’ve compiled information on common barriers that those living with hepatitis B may face while applying to schools, jobs, or accessing affordable medicine. Each of the below sections provides information on discriminatory practices, what you can do if you experience discrimination, and how the Hepatitis B Foundation is working to fight discrimination.

In the United States, all forms of hepatitis B related discrimination are illegal under the Americans with Disabilities Act (ADA) and the Affordable Care Act (ACA). Both laws include provisions that protect people living with chronic conditions. Unfortunately, some forms of discrimination are still legal in certain countries, but steps can sometimes be taken to appeal to immigration policies in these areas. Local organizations can also help those living in foreign countries to navigate complex laws or policies regarding those living with hepatitis B. Many of these organizations can be found through the World Hepatitis Alliance’s member list. Join them and add your voice to eliminate hepatitis B discrimination in your country.

Specific protections, resources, and ways to combat legal discrimination can be found in the Know Your Rights section of our website! If you are faced with discrimination due to hepatitis B, it is important to know your rights and to have information to support your case. Use the information on our site to help advocate for yourself, join with others, or contact the Hepatitis B Foundation at info@hepb.org if you need additional assistance.

If I Have Hepatitis B, Why Doesn’t My Partner?

Why do some people — who were not vaccinated — never get hepatitis B from their sexual partners? The question is a common one.  As a sexually transmitted disease, it may seem obvious that your partner may contract hepatitis B from their partner, especially if you have been together for some time.

It comes down to factors, such as the type of sexual activity you engage in, the viral load (HBV DNA) of the infected partner, and who

is on the receiving end of infectious body fluids, especially blood that contains the most virus, and semen.

Having one partner infected, while the other is not, can add more

stress to an already traumatic hepatitis B diagnosis. “It was very confusing and made me question how was it possible I was the only one infected,” said a woman who tested positive while her husband tested negative.  “I thought it was possibly a mistake, maybe I was a biological anomaly, which of course I was not.”

Let’s look at the factors that affect who gets infected and who doesn’t when two people have sex.

Viral load: Semen, vaginal fluids and blood all contain the hepatitis B virus (HBV), and the higher the viral load, the more infectious a person is considered to be. However, having an undetectable viral load doesn’t mean you won’t infect someone during unsafe sex. Even if a man has an undetectable viral load, studies show his semen still contains some of the virus and can spread infection, though the risk is lower.

Essentially, if a man tests positive for the hepatitis B surface antigen (HBsAg), he must consider himself infectious.

The role of gender: In heterosexual relationships, uninfected women are at higher risk of getting infected by a male partner infected with hepatitis B, rather than the reverse. Women are on the receiving end of semen, which greatly increases their risk of becoming infected unless a condom is used.

When a woman is infected with hepatitis B, an uninfected man is at risk through direct contact with her vaginal secretions, but that contact is lower-risk than a woman’s direct exposure to infectious semen during intercourse.

However, an infected woman who is menstruating is more likely to spread hepatitis B because blood can contain higher levels of HBV than vaginal secretions. That is why gloves and dental dams are recommended to provide a barrier against exposure.

The type of sexual activity: Certain sexual activities are far more efficient at spreading hepatitis B than others. Oral sex appears to have a lower rate of hepatitis B transmission than vaginal sex. Anal sex carries a very high risk of transmission because of tears in the skin that can occur during penetration, which improves transmission of HBV.

Fingering carries a lesser risk, unless the infected woman is menstruating or a person has bruises or cuts on their hands that allow entry of hepatitis B virus from the body fluid into the bloodstream.  In such cases, gloves are recommended.

The “uninfected” partner could already have been infected and cleared hepatitis B: When a person is first diagnosed with hepatitis B, doctors often test his or her partner for only the hepatitis B surface antigen (HBsAg), which indicates a current hepatitis B infection. If they are negative for HBsAg, they are immediately vaccinated. However, this does not mean that they were never infected.

If the partner isn’t also tested for the hepatitis B surface antibody (anti-HBs or HBsAb), then no one knows if the individual was already protected, either due to recovery from a past hepatitis B infection or because they had already been vaccinated.

Hepatitis B is not called the “silent” infection for nothing — many people who get hepatitis B never have any symptoms and never realize they were infected. As a result, a wife, husband, partner or lover who tested negative for HBsAg, may actually have been

infected in the past and cleared the infection and now has protective hepatitis B surface antibodies to forever safeguard them from infection. If they’re immediately vaccinated and retested after the three-dose vaccination, they will test positive for surface antibodies, without ever knowing that their antibodies resulted from a past infection, not immunization.

Bottom line, if one of you have been diagnosed and the other is not infected, it is unusual but not uncommon. Get tested using the 3-panel blood test (HBsAg, HBsAb, and HBcAb) and immediately vaccinated if the uninfected partner tests negative for the hepatitis B surface antibody (HBsAb).

Take a quiz to find out how much you know about hepatitis B transmission: click here.

Behind the Scenes of A Viral Hepatitis Elimination Plan in Pennsylvania

In Pennsylvania, the Hepatitis B Foundation is collaborating with various stakeholders to launch a State Viral Hepatitis Elimination Plan! Join us as we document our process from start to finish!

In this video, Michaela Jackson, MS recounts the Hepatitis B Foundation’s attendance to the first ever State Viral Hepatitis Elimination Stakeholder Planning Meeting! The meeting, which was hosted by the Pennsylvania Department of Health, brought awareness and education to the state’s lawmakers!

Hepatitis B Foundation: Now Part of the NORD Rare Disease Community!

We’re pleased to announce that the Hepatitis B Foundation (HBF) is now a member of NORD, the National Organization for Rare Disorders, representing our program, Hepatitis Delta Connect. NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. We will join 280 other patient organization members, all committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

Although globally, hepatitis delta is estimated to affect 15-20 million people, in the U.S. it is classified as a rare disease, as it is estimated to affect less than 200,000 people. The complicated nature of the virus and limited prioritization contribute to the gap in awareness, resources, testing practices and adequate treatments for hepatitis B and delta coinfection. Joining NORD will help amplify our voice, raise awareness about hepatitis delta in people living with chronic hepatitis B, provider and pharmaceutical communities and contribute to health policy efforts.

Hepatitis Delta Connect has previously been active with NORD through participating in rare disease Twitter chats and presenting a poster at the NORD Rare Action Summit in October 2018. We’re very excited to be a part of the coalition, and to be spreading awareness about hepatitis delta!

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

#Tri4ACure: From Hepatitis B Diagnosis to Advocating for a Cure

 

 

 

 

 

 

 

 

 

Meet Edwin Tan – a 29-year-old mechanical design engineer from Minneapolis, Minnesota! In 2014, Edwin was diagnosed with hepatitis B. Like many others living with hepatitis B, his diagnosis was a shock. Before his diagnosis, all he knew was that he was banned from giving blood to the Red Cross, but no one had explained the reason why. A routine blood test provided no explanations either, so his doctor decided to test for hepatitis B. The test revealed that Edwin was living with chronic hepatitis B.

After his diagnosis, 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. Although he loved craft beer, he knew that drinking could be extremely dangerous to those with liver infections, so he willingly gave up all alcohol. Edwin’s dedication to a more active lifestyle led him to challenge himself by competing in local races and triathlons.

Edwin’s journey led him to realize that there is a lack of awareness about hepatitis B. He noticed that the stigmas facing those living with hepatitis B could take a physical and mental toll on an individual and impact how they viewed themselves. Edwin’s observations inspired him to reach out to the Hepatitis B Foundation to raise money and awareness for hepatitis B research, patient outreach, and education. Since his passion for racing was discovered due to his commitment to health after his diagnosis, it seemed appropriate for him to use his love of sports to fundraise for hepatitis B awareness and research! He hopes that his athletic achievements help others living with hepatitis B to realize that they are more than their infection.

Now, Edwin is training for a series of six races—triathlons, a marathon and an ironman – and we’ll be with him every step of the way! You can make a gift to support Edwin’s fundraising efforts here.

“I want to be a positive example against the stigma associated with Hep B and the shame that some people may feel for having it. 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.”

To follow updates on Edwin’s journey, you can follow the Hepatitis B Foundation or Hep B United on Facebook. Be sure to use the hashtag #Tri4ACure!

New Report: Increasing Hepatitis B Awareness and Prevention in the Nail Salon Workforce

North American Occupational Health and Safety Week (May 5-11) is a time to raise awareness about the importance of injury and illness prevention in the workplace! This week, we’re focusing on health and safety within the nail salon industry, specifically the risk for hepatitis B transmission and opportunities to increase awareness and education about hepatitis B among nail salon workers.

In the U.S., the nail salon workforce is comprised mostly of Vietnamese Americans, with many being immigrants. Refugee and immigrant communities are often susceptible to worker exploitation (including labor trafficking) and encounter cultural and linguistic barriers that may leave them vulnerable to occupational health and safety risks, including hepatitis B transmission.

During routine work, nail technicians may be exposed to a client’s blood or other bodily fluids. It is important for nail salon workers to take precautionary measures to protect themselves and their clients to prevent the potential spread of the hepatitis B virus. More importantly, the nail salon industry (including salon owners and state health departments or boards that regulate nail salons) should implement policies that support greater education, awareness, and prevention of hepatitis B transmission among its workforce.

In October of 2011, the American College of Gastroenterology urged the need for increased surveillance and information on disinfection and infectious disease prevention, particularly for hepatitis B and C in nail salons. Since then, no major research or analysis has been conducted to better understand hepatitis B transmission or the policies that protect nail salon workers. In a new report released by the Hepatitis B Foundation, “The Impact of Nail Salon Industry Policies and Regulations on Hepatitis B Awareness and Prevention,” we seek to further understand the nail salon industry landscape through analyzing state policies that govern nail salons and identify strategies to support increased hepatitis B education, awareness, and prevention.

The nail salon industry is regulated at the state level by a regulatory Board of Cosmetology that oversees and ensures nail technicians and nail salons comply with all rules and regulations. In this report, we analyze the nail salon workforce and industry regulations and provide recommendations that can address specific concerns. We conducted phone interviews with health clinics, public health workers, and other relevant stakeholders to better understand the challenges this population encounters when accessing hepatitis B education and care. In addition, we conducted a policy analysis of each state’s Board of Cosmetology to assess their effectiveness in protecting workers from exposure to bloodborne pathogens, specifically hepatitis B. In our analysis, we found that several states may not adequately protect workers from workplace hazards that may increase their risk of hepatitis B exposure. With sanitation and disinfection requirements that greatly vary between states, low compliance can leave workers susceptible to the transmission of bloodborne pathogens, including the hepatitis B virus.

We offered the following recommendations to provide industry changes and community initiatives that can help protect workers or link them to care:

  • Build partnerships between community organizations and nail salons to increase hepatitis B education, testing, and vaccination among nail salon workers
  • Integrate hepatitis B education into the nail technician licensing curriculum
  • Implement continuing education (CE) requirements around hepatitis B prevention and uphold sanitation requirements
  • Provide multilingual course training materials and written licensing exams
  • Adopt a sanitation rating system

Additionally, through our analysis, we found that four states have policies that discriminate against nail salon workers affected by hepatitis B by barring them from working in nail salons. Even with federal legal protections from the Americans with Disabilities Act, the continued discrimination in this industry presents a clear need to increase hepatitis B knowledge and awareness. Further state-level advocacy will be needed to address discriminatory policies. We must hold states accountable and advocate for policies and regulations that protect individuals affected by hepatitis B and prevent transmission of hepatitis B in the nail salon workplace.


Be sure to check out our full report for a detailed analysis of current state regulations and policies to assess their impact on educating and protecting nail salon workers and preventing hepatitis B transmission in the workplace.

Whether you work in a nail salon or visit one for a manicure or pedicure, be knowledgeable about the steps you can take to protect yourself. For further information about nail salon hazards and a complete guide to protecting your health and preventing injury in the workplace, check out OSHA’s guide here.

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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