Hep B Blog

Category Archives: Living with Hepatitis B

Hepatitis B Advocacy, Liver Cancer, Living with Hepatitis B

October is Liver Cancer Awareness Month

Image courtesy of Stuart Miles at FreeDigitalPhotos.net
Image courtesy of Stuart Miles at FreeDigitalPhotos.net

By Christine Kukka

In an era of hepatitis B immunization and improved health care, an alarming trend is happening — liver cancer is increasing and is now the second-leading cause of cancer deaths around the world.

This is why it’s critical that everyone living with hepatitis B should demand to be screened for liver cancer. There are three key reasons why liver cancer rates remain high:

  • Too few people are tested for hepatitis B, which is why two-thirds of Americans living with hepatitis B don’t know they’re infected.
  • Only 20 percent of doctors follow liver cancer screening guidelines and test at-risk hepatitis B patients for liver cancer. By the time liver cancer is diagnosed, it’s often too late for effective treatment.
  • And, screening guidelines themselves are inadequate and fail to use valuable blood tests that help identify liver cancer in its early, treatable stages.

Today, the majority of liver cancer cases occur in developing countries, fueled by undiagnosed and untreated hepatitis B. More than 80 percent of these cancers are found in sub-Saharan Africa and Eastern Asia where more than 20 of every 100,000 people will suffer and die from liver cancer.

But make no mistake, liver cancer happens in North America and Europe too. Because people aren’t effectively screened for hepatitis B and liver cancer, an estimated 10 percent of people with chronic hepatitis B will develop liver cancer in developed countries. Most face a bleak outlook, only 20 percent of people diagnosed with liver cancer survive beyond five years.

But you can beat these odds. In celebration of Liver Cancer Awareness Month, we need to insist that our doctors screen us for liver cancer. When diagnosed early, treatment succeeds and survival improves markedly.

Medical guidelines that recommend when and how we are tested for liver screening vary dramatically around the world, but most of them are inadequate, according to a recent report. The U.S. and European guidelines, for example, recommend an ultrasound of the liver every six months.

But an increasing number of experts, including Hepatitis B Foundation Medical Director Dr. Robert Gish, are promoting the combined use of an ultrasound plus two blood tests — for alpha fetoprotein (AFP) and des-gamma carboxyprothrombin (DCP) — to help identify liver cancer in its early, treatable stages.

Current medical guidelines recommend anyone with cirrhosis (liver scarring) should be screened every six months for liver cancer because 80 percent of people diagnosed with liver cancer also have cirrhosis. The guidelines also state that patients who have a family history of liver cancer, are coinfected with HIV or hepatitis C, or who are young males of African descent should also be tested for cancer at any age.

Many of us don’t have these risk factors, but we are still at risk. Our liver cancer incidence is much lower than if we had cirrhosis, but it’s still there and we need to be tested using the best tools available.

Age is clearly an important factor when it comes to liver cancer, especially if we have had hepatitis B for several decades, but current guidelines only provide age-specific screening recommendations in people of Asian ethnicity (men over age 40 and women over age 50).

As doctors debate whether these guidelines should be changed to promote earlier or more frequent screening, here are some questions to review with your doctor to determine if you should be screened for liver cancer:

How many years have you had hepatitis B? The longer you’re infected, the higher your risk of liver cancer. Men of African descent are found to develop liver cancer at an earlier age than other races and should be screened starting in their 20s.

What is your gender? Men are considered at higher risk of liver cancer at an earlier age because they may be more likely to smoke, drink alcohol, have more “active” hepatitis, and higher iron stores—all of which increase cancer risk. Estrogen is believed to protect pre-menopausal women against liver cancer.

Have you had a high viral load (HBV DNA) after age 30? Having a viral load exceeding 2,000 international units per milliliter (IU/mL) is associated with a higher risk of liver cancer even if you have no other signs of liver damage.

Do you have a family history of liver cancer? If an immediate family member has had liver cancer, this greatly increases your risk.

Are you overweight, or have you been diagnosed recently with type 2 diabetes? A fatty liver and/or diabetes increase your risk of liver damage and cancer dramatically when you’re also infected with hepatitis B.

Do you have hepatitis B virus genotype C or core/precore viral mutations? Originating in Asia, this hepatitis B strain is associated with loss of the hepatitis B e antigen (HBeAg) later in life. That means you may have had a high viral load and liver damage for a longer period than people with genotypes who clear HBeAg at a younger age. Having core or precore mutations in your HBV also increase liver cancer risk.

Talk to your doctor, even if you haven’t had liver damage and have had a low viral load or undetectable viral load for many years, ask if it’s time for a liver cancer test. For more information about liver cancer visit the Liver Cancer Connect website and for more information about screening for liver cancer, click here.

On Tuesday, Oct. 25, representatives from Hep B United, CDC’s Division of Viral Hepatitis, and the National Alliance of State and Territorial Aids Directors (NASTAD)  will be co-hosting a twitter chat at 2 p.m. EST using the hashtag #liverchat.

Hepatitis B Diagnosis & Monitoring, Hepatitis B Prevention, Living with Hepatitis B

You’ve Lost the Hepatitis B Surface Antigen, Go Celebrate, But Keep Monitoring

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By Christine Kukka

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

After years of living with “inactive’ chronic hepatitis B—with low viral load and no signs of liver damage–some patients may finally lose the hepatitis B surface antigen (HBsAg) and even develop surface antibodies.

This event merits a celebration and a huge sigh of relief, but if you think you will never have to get another blood draw or worry about your liver, think again. We hate to be the bearer of bad news, but hepatitis B really never goes away.

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

Think herpes, mono, or chicken pox and shingles. Children infected with chickenpox get rid of the infection and the ugly blisters, but very small amounts of the chickenpox (varicella) virus remains in the spinal nerves. As we grow older and our immune systems weaken with age,  our bodies aren’t able to suppress the varicella virus any more and it reactivates, causing painful shingles.

The hepatitis B virus (HBV) behaves in the same way. When we lose HBsAg and even develop surface antibodies (anti-HBs), there are still HBV lurking in our livers. When we’re healthy, our immune systems suppress the virus and prevent any reactivation, but old age or another disease or medical condition can weaken our bodies and allow the viral infection to reactivate.

So, even after we clear HBsAg, we need to stay vigilant and continue to get our liver health monitored regularly. Here is what you need to know:

First, what are my chances of ever getting rid of HBsAg and developing the surface antibody? It can happen, especially in older adults after a long period of “inactive” hepatitis B infection.

About 1 to 3 percent of people with chronic hepatitis B lose HBsAg each year, and about half of all people with chronic infections who live up to age 75 will lose HBsAg, depending on the amount of HBV DNA in their blood.

Your chances of losing HBsAg and developing the surface antibody increase if you have a healthy lifestyle and avoid alcohol, cigarettes and obesity (fatty liver). Another report found that people with the hepatitis B strain or genotype C have higher rates of clearing HBsAg over time than those with genotype B.

Image courtesy of taoty at FreeDigitalPhotos.net
Image courtesy of taoty at FreeDigitalPhotos.net

Once you clear HBsAg, the chance of developing surface antibodies over the next two, five and 10 years are 24 percent, 58 percent and 78 percent respectively, according to a recent report in the September 2016 journal of Epidemiology and Infection.

After I clear HBsAg, how often do I need to get my liver health monitored? According to Dr. Robert Gish, medical director of the Hepatitis B Foundation and professor consultant of gastroenterology and hepatology at Stanford University, once you have cleared HBsAg, 12 months later you need to:

  • Check all of your liver enzymes and liver function
  • Get your platelet count and hepatitis B blood tests done, and
  • Have an ultrasound of your liver and spleen.

These tests become your new “baseline” that your doctor can refer too in the years ahead while monitoring your liver health.

Your baseline ultrasound should examine your liver and measure its portal vein (it should be under 12 mm) and spleen (it should be under 12 cm) to make sure it’s normal with no signs of cirrhosis or portal hypertension.

If you had cirrhosis before you cleared HBsAg: You need to be surveyed for liver cancer (with an ultrasound, alpha fetoprotein (AFP) blood test and a Des-gamma-carboxy prothrombin (DCP) test) every six months for at least five years, because cirrhosis puts you at high risk of liver cancer. Once an ultrasound finds no evidence of cirrhosis and all other tests are normal, including the cancer tests, then the testing can become less frequent and your doctor can prescribe a new monitoring schedule.

If you’ve had elevated liver enzymes (called ALT or SGPT) in the past, (higher than 19 in women and 30 in men), you need to continue to get tested every six months until you’ve had two consecutive healthy ALT readings. If your ALT remains elevated, make sure you are not drinking alcohol and do not have fatty liver disease. Talk to your doctor about a new monitoring schedule.

Tell all of your current and future doctors you’ve had hepatitis B, and beware of immune-suppressing drugs used to treat various cancers and rheumatoid arthritis. Our immune systems, which are working to keep the residual HBV in our bodies in check, can also take a hit from medications that deliberately suppress our immune systems in order to fight cancer, psoriasis or rheumatoid arthritis.

According to medical guidelines, all oncologists and other specialists who use these powerful drugs are supposed to test all  their patients for hepatitis B and carefully monitor anyone who had hepatitis B in the past, which is indicated by a positive test for the hepatitis B core antibody (anti-HBc).

Even if you’ve cleared HBsAg, doctors may pre-emptively treat you with antivirals during and after your treatment for cancer, immune disorders such as arthritis or psoriasis, and hepatitis C and monitor your HBsAg and viral load regularly to make sure your hepatitis B does not reactivate.

These screening guidelines exist, but no one is perfect and your oncologist may not know you’ve been infected, may forget to screen you for hepatitis B, or may not understand the testing. So, tell everyone if you have an active or resolved hepatitis B infection. The last thing you want is to be battling both cancer and a reactivated hepatitis B infection simultaneously.

While hepatitis B never really goes away, once you clear HBsAg your risk of liver damage and liver cancer diminish tremendously. It’s worth a celebration, but you need to continue to be monitored as you age.

Hepatitis B Prevention, Living with Hepatitis B

How Much Do You Really Know About Sex and Hepatitis B? Take This Quiz and Find Out

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Image courtesy of Vichaya Kiatying-Angsulee at FreeDigitalPhotos.net.
Image courtesy of Vichaya Kiatying-Angsulee at FreeDigitalPhotos.net.

By Christine Kukka

It’s Sexual Health Awareness month and a great time to test your knowledge about how hepatitis B is — and isn’t — spread sexually.

We know hepatitis B is easily transmitted through sex. It’s a resilient virus, can live for up to a week on a dry surface and it’s 50- to 100-times more infectious than HIV.  In fact, sexual contact is the most common way hepatitis B is spread in the United States. So let’s see how much you know:

I’m in my 20s and can safely assume everyone has been vaccinated against hepatitis B, so I don’t have to disclose my infection.   True or False?

False. New hepatitis B cases have indeed been steadily declining since the vaccine was introduced in the 1980s, but not everyone has been vaccinated. Here’s proof. As a result of the heroin epidemic sweeping through rural America, new hepatitis B infections have risen for the first time in decades among 20- and 30-year-olds who were not lucky enough to be immunized during childhood.

Oral sex doesn’t transmit hepatitis B.   True or False?

It’s complicated. There are no confirmed reports of hepatitis B infection resulting from oral sex, but there’s still a risk for infection. If you have a high viral load (HBV DNA), you may still be putting partners at risk of infection if they have bleeding gums, mouth sores, or anything that increases the likelihood of infectious fluids entering their bodies. Bottom line, oral sex has a lower risk of spreading hepatitis B than other sexual practices, but some risk remains. And don’t forget, other sexually-transmitted infections such as  chlamydia, gonorrhea and syphilis are spread through oral sex. Using a condom or dental dam reduces infection risk.

Image courtesy of photostock at FreeDigitalPhotos.net.
Image courtesy of photostock at FreeDigitalPhotos.net.

An uninfected woman is at higher risk of catching hepatitis B from an infected male partner, than an uninfected man who has sex with an infected woman.   True or False?

True.  It’s not gender but sexual activity that usually defines the infection risk, but in this case an  uninfected woman is at very high risk of infection if she has unprotected sex and is on the receiving end of hepatitis B-infected semen.

I’m positive for the hepatitis B surface antigen (HBsAg), but my viral load is undetectable. I don’t have to worry about disclosing or spreading hepatitis B.    True or False?

False.  As long as you test positive for the surface antigen, you still have the hepatitis B virus in your blood and body fluids. Yes, the risk is lower because you’re HBV DNA-undetectable, but you still need to practice safe sex and disclose your hepatitis B to your prospective sexual partners.

Anal sex is more effective at transmitting hepatitis B than vaginal sex.   True or False?

True.  Any sexual activity that might cause abrasions, cuts, or other trauma is especially risky. To minimize risk, experts recommend use of a condom.

Kissing can transmit hepatitis B.    True or False?

False. Spreading hepatitis B through kissing is highly unlikely, however, deep kissing that involves the exchange of large amounts of saliva might result in infection if there are cuts or abrasions in the mouth of the infected person, especially if they have a high viral load.

Blood has more hepatitis B virus in it than semen or vaginal fluids.  True or False?

True.  Blood has the highest volume of virus. Semen and vaginal fluids have intermediate levels, and urine and feces have the lowest level.

 

Hepatitis B Advocacy, Hepatitis B Prevention, Living with Hepatitis B

Hepatitis B Foundation: Answering Questions and Dispelling Fears One Call or Email at a Time

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Maureen Kamischke, Hepatitis B Foundation's social media and outreach manager.
Maureen Kamischke, Hepatitis B Foundation’s social media and outreach manager.

Hepatitis B is a complex infection, it can impact our health, lifestyle choices and threaten relationships. Sometimes, we need to ask for help.

One of the most personal and valuable services the Hepatitis B Foundation provides is answering individuals’ emails and phone calls about hepatitis B. These queries, which can come from all over the world, often involve discrimination, disclosure and how to interpret lab tests that baffle inexperienced doctors and nurses.

One of the people at the foundation who answers these emails and calls is Maureen Kamischke, the foundation’s social media and outreach manager. Kamischke, whose daughter had hepatitis B, knows first-hand the difficulty of finding healthcare providers with expertise in hepatitis B treatment. She has grappled with decisions about disclosing her child’s infection at school and to friends. Today, she continues to advise her daughter (now an adult) about her liver health, and she also answers the dozens of emails and calls that reach the foundation each week.

Maureen Kamischke's daughter Maren.
Maureen Kamischke’s daughter Maren.

Today, guided by decades of personal and professional hepatitis B experience, Kamischke helps others navigate the challenging world of hepatitis B. “My goals are to disseminate accurate information, provide hope and information that will empower people living with hepatitis B to make simple lifestyle changes that will help them feel like they have some control over their lives,” she explained. “I understand that the disease will shape them, but I want them to understand it should not define or limit them. “ Continue reading "Hepatitis B Foundation: Answering Questions and Dispelling Fears One Call or Email at a Time" →

Hepatitis B Treatment, Liver Cancer, Living with Hepatitis B

Do You Forget Your Daily Hepatitis B Antiviral? Why We “Forget” Our Meds, and How to Improve Compliance

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Image courtesy of foto76 at FreeDigitalPhotos.net
Image courtesy of foto76 at FreeDigitalPhotos.net

By Christine Kukka

Your daily antiviral pill can save your life when you have liver damage from chronic hepatitis B. Entecavir or tenofovir (Viread) quickly reduce the amount of virus in your liver and the damage it causes.

All you have to do is take it. Every day. But 20 to 30 percent of prescriptions are never filled, and about 50 to 70 percent of us don’t take our medications as prescribed. When we stop taking our daily antiviral, hepatitis B can reactivate and threaten our health.

In one study, researchers provided 100 hepatitis B patients with an entecavir pill dispenser that monitored whether or not they took their daily pill over a 16-week period. They found about 70 percent of patients took their antiviral pill as prescribed more than 80 percent of the time — which means these patients were “medication compliant.”

Those who missed taking their antivirals more than 20 percent of the time–and were “noncompliant”–tended to be younger and had indifferent attitudes about whether or not the antiviral was really needed or would work.

Image courtesy of Carlos Porto at FreeDigitalPhotos.net
Image courtesy of Carlos Porto at FreeDigitalPhotos.net

According to experts, whether we are “medication compliant” or not depends on how much trust we have in our doctors. If we like our healthcare provider and feel comfortable asking questions, we’re much more likely to take our medication on time. And, if our friends and family support and encourage us, we’re even more inclined to take our medication as prescribed.

“The trust I have in my doctor is a big factor,” said a member of the Hepatitis B Support List. “It is important to find a doctor who understands hepatitis B and is willing to work with me in terms of explaining what the options are and what the best approach is in managing my condition.”

“I know antivirals won’t cure me,” another email list member wrote, “but I’m committed to staying healthy and productive as long as God permits.” Continue reading "Do You Forget Your Daily Hepatitis B Antiviral? Why We “Forget” Our Meds, and How to Improve Compliance" →

Liver Cancer, Living with Hepatitis B

Aflatoxin Alert: Moldy Nuts and Corn Increases Your Liver Cancer Risk 60-Times If You Have Hepatitis B

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Image courtesy of YaiSirichai at FreeDigitalPhotos.net
Image courtesy of YaiSirichai at FreeDigitalPhotos.net

By Christine Kukka

One of the biggest health threats to people living with chronic hepatitis B is a toxic, nearly invisible mold called aflatoxin found in corn, peanuts, peanut butter, almonds, Brazil nuts, walnuts and pistachios.

People with hepatitis B who eat food with high levels of aflatoxins face a liver cancer risk that is 60-times above average.

In addition to nuts and grains like quinoa, aflatoxin can be found in figs, milk and cheese, soybeans, dried spices and cottonseed. It is less common in rice, as long as rice is hulled, which removes aflatoxin mold. Continue reading "Aflatoxin Alert: Moldy Nuts and Corn Increases Your Liver Cancer Risk 60-Times If You Have Hepatitis B" →

Hepatitis B Advocacy, Living with Hepatitis B

World Hepatitis Day: Because 4,000 Deaths a Day Is 4,000 Too Many


save-7-million-lives-2-212x300By Christine Kukka

The World Health Organization has designated July 28 as World Hepatitis Day, a day to work for global change to eliminate viral hepatitis and the suffering, death and discrimination that accompanies hepatitis B and C by 2030.

From Asia to North America, on this day people around the world raise awareness about viral hepatitis and advocate for better access to treatment and prevention programs and more effective government action. Why? Because 4,000 deaths a day from viral hepatitis is 4,000 deaths too many.

This action is critical, because for too long global leaders have made hepatitis a low priority. Viral hepatitis is a silent disease that causes no symptoms until it’s too late, and many believed the hepatitis B vaccine would simply make the infection go away.

Instead, global health organizations focused on other diseases such as HIV/AIDS, tuberculosis and malaria. HIV especially benefited from unprecedented efforts and donated resources to enable diagnosis and prevention of transmission and to provide treatment at low cost.

Today, we need the same effort and resources to eradicate viral hepatitis, which kill an estimated 1.4 million each year – more people  die from hepatitis annually than from HIV/AIDS and tuberculosis combined.
no-hep-for-all-2-212x300For example, between 5 to 20 percent of the 1 billion people living in Sub-Saharan Africa have chronic hepatitis B Despite this prevalence, there are no widespread screening, education or prevention programs in Africa. The majority of people lucky enough to get screened and diagnosed for hepatitis B are often blood donors, because there are no public health clinics that provide screening for viral hepatitis.

In Asia and Africa, even when pregnant women are diagnosed with hepatitis B, their newborns are often not given that critical, first vaccine dose within 12 hours of birth that would break the mother-to-child hepatitis B infection cycle. The birth dose of the hepatitis B vaccine is either too costly or simply unavailable. Perinatal infection, though preventable, continues to be a major source of chronic infection worldwide. Continue reading "World Hepatitis Day: Because 4,000 Deaths a Day Is 4,000 Too Many" →

Hepatitis B Advocacy, Living with Hepatitis B

Join the Conversation at the Hep B United Summit; Watch the Summit On Periscope!

hepbunited-btnThe annual Hep B United Summit, organized by the Hepatitis B Foundation, convenes in Washington D.C. from Wednesday, July 27 through Friday, July 29. 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 important sessions LIVE on Periscope. You can also follow the conversation at the Summit on Twitter with #Hepbunite!

What is Periscope? Periscope broadcasts live video worldwide, in real time, so you can watch it from your computer (via web link) or a mobile device (via Periscope app). The app is free and available for your phone (iPhone and Android) and iPad or Tablet.

Wondering how to use Periscope to watch the Hep B United Summit in real time? There are two options:

  • If you’re using a PC, keep an eye out for a tweet from Hep B United and/or the Hepatitis B Foundation Twitter handles (@hepbunited or @hepbfoundation) that will contain a link to take you directly to the stream.
  • If you’re on the go, you can download the Periscope app for free from the App store or Google Play. You can either login using Twitter or directly with your phone number. Create your Periscope username and then follow hepbunited and hepbfoundation. We’ll be sure to follow you back! Here’s a great Periscope tutorial from Traffic Generation Café to get you started. You can also click on the link from your twitter app.

Here are the details on the sessions that will be broadcast on Periscope:

State of Hepatitis B
1:45-2:15 p.m. Wednesday: Brian McMahon, MD, will provide an update on the state of hepatitis B globally, via a GoToMeeting connection.

Click and watch later here. 

Hep B United and Know Hepatitis B Campaign Accomplishments
2:15-3 p.m. Wednesday:  Cynthia Jorgensen, DrPH, of the CDC’s Division of Viral Hepatitis will provide an update on Hep B United and the Know Hepatitis B campaign accomplishments of the past year.

Click and watch here.

HHS Town Hall on Hepatitis B
9:30 a.m. Thursday:  There will be a town hall conference with U.S. Department of Health and Human Services (HHS), live from HHS.

Click and watch here.

Breakout Session 1:

Developing New Hepatitis B Partnerships and Increasing Awareness
10:45-12:00 p.m. Friday: Contribute and learn about expanding outreach to new sectors (businesses, other at-risk communities, providers, etc.) and hepatitis B education strategies including social and ethnic media engagement. (Facilitators: Thaddeus Pham and Arcadi Kolchak)

Click and watch here.

Leveraging Data and Evaluating Impact
10:45-12:00 p.m. Friday: Discuss and collaborate on hepatitis B data collection and publication strategies, working with IRBs, and leveraging data to evaluate and promote coalition/organization impact. (Facilitators: Moon Chen and Chari Cohen)

Click and watch here.

Breakout Session 2:

Building and Sustaining Local Hepatitis B Coalitions
1:15-2:30 p.m. Friday: Develop strategies to sustain local hepatitis B coalitions and learn about engaging staff and local leadership. (Faciliators: Alex Shirreffs and Mohammad Abdul-Kadir)

Click and watch here.

Navigating Patients and Linkage to Care Strategies
1:15-2:30 p.m. Friday: Contribute to and learn about patient navigation strategies, including overcoming language barriers and working with community health workers and physician champions. (Facilitators: Nirah Johnson and Jane Pan)

Click and watch here.

 Not able to join the sessions with Periscope? Follow the conversation on Twitter using the #Hepbunite hashtag. Follow the events, RT and engage with event attendees and help us raise hepatitis B awareness in the U.S. and around the globe.

World Hepatitis Day is July 28th, and this Summit is a terrific 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 HBV awareness, include: #NOhep, #KnowHepB, #WorldHepDay, #WHD2016, #hepatitis, #hepatitisB, #HBV, and #hepB

Connect with, follow and engage with some of fellow partners on twitter to keep the HBV conversation going during the HBU Summit and World Hepatitis Day events, and beyond. Check out: @AAPCHOtweets, @AAHC_HOPEclinic, @AAHI_Info, @AAPInews, @apcaaz, @APIAHF, @ASIAOHIO, @CBWCHC, @CCACCInc, @cdchep, @cpacs, @HBIDC, @HepBFoundation, @HepBpolicy, @HepBProject, @HepBUnitedPhila, @HepFreeHawaii, @HHS_ViralHep, @ImmunizeAction, @LaoCenterMN, @MinorityHealth, @njhepb, @nemssf, @NVHR1, @nycHepB, @NYU_CSAAH, @sfhepbfree, @supportichs, @WhiteHouseAAPI,

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

Don’t forget to join the World Hepatitis Alliance Thunderclap and register your World Hepatitis Day events.

nohep logo

Still have questions? Email us at info@hepb.org and we’ll help you get started!

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

Hepatitis B Treatment, Living with Hepatitis B

Closing a Healthcare Gap: Medicare Finally Covers Hepatitis B Testing in At-risk Seniors

Image courtesy of stockimages at FreeDigitalPhotos.net
Image courtesy of stockimages at FreeDigitalPhotos.net

By Christine Kukka

Medicare insurance pays for seniors to get vaccinated against hepatitis B, but it doesn’t cover testing to find out if they’re infected and need life-saving treatment. The federal government is now poised to close this glaring healthcare gap that prevents at-risk seniors from getting screened for hepatitis B.

Last week, the Centers for Medicaid and Medicare Services proposed to cover hepatitis B testing in seniors age 65 and older who may be at risk of the liver infection.

Currently, the majority of the estimated 2 million Americans with chronic hepatitis B are over age 50, and the longer they are infected, the higher their risk of liver damage and cancer. This preventive screening saves lives and is cost-effective, because treatment with antivirals quickly and effectively reduce liver damage.

Until the Hepatitis B Foundation, Hep B United, the Association of Asian Pacific Community Health Organizations and the National Viral Hepatitis Roundtable asked the federal government to cover screening,  seniors who wanted to be tested for hepatitis B had to pay for the test themselves. Because hepatitis B is a “silent” infection, causing few symptoms until cirrhosis or cancer develop, nearly two-thirds of Americans living with hepatitis B have never been tested, identified or referred to life-saving treatment.

The highest rate of liver cancer in this country is in Vietnamese-American men, many of whom were never tested for hepatitis B. By the time they are diagnosed, it is often too late. Here’s two more examples of the high cost of this healthcare gap:

  • The Charles B. Wang Community Health Center in New York City serves a large Asian-American population. When the clinic screened all of its patients for hepatitis B, it found 7.8 percent of patients age 65 and older were chronically infected and 45 percent had been infected in the past.
  • Another New York City study of African immigrants, which included all ages, found 9.6 percent of them were chronically infected.

Today, the most vulnerable Americans are infected at a rate 10-times the national average, yet until now the government didn’t cover the cost of screening them. Medicare did cover testing if there were signs of liver damage from other medical tests, but in the case of late-stage hepatitis B infections, a diagnosis often comes too late for treatment.

Screening seniors for hepatitis B has a life-saving ripple effect across generations. When hepatitis B is diagnosed in a grandparent, there is an opportunity to educate, test and vaccinate their children and grandchildren who are also at risk.

Under the new guidelines, which also apply to disabled people covered by Medicare Part B, Medicare will reimburse primary care providers when they screen people at risk of hepatitis B, including:

  • People born in regions with high hepatitis B rates, including Asia, Africa, the Middle East, the Caribbean, Eastern Europe, and some areas of South and Central America.
  • Second-generation residents who were not vaccinated at birth and whose parents come from high-risk regions, such as sub-Saharan Africa and central and Southeast Asia
  • HIV-positive persons, injecting drug users, men who have sex with men, and
  • Family and household members of people with chronic hepatitis B.

This expanded coverage will go far to screen seniors, but gaps remain.

Under the proposed guidelines, only primary care providers can order testing, but many specialists including oncologists, rheumatologists and gastroenterologists see patients at risk for hepatitis B. The expanded coverage should include them and also pharmacists.

Additionally, both providers and the public need to know more about hepatitis B. Today, the majority of people infected with hepatitis B don’t know they’re infected. Patients often don’t share their true stories of activities that may put them at risk of hepatitis B, especially if it includes sexual abuse or injecting drug use, and doctors often don’t have the time or the skills to elicit this vital information. Along with expanded coverage should come public education to provide a common language for these difficult conversations.

Lastly, while providers are screening more Asian-Americans for hepatitis B, many of those at-risk remain undiagnosed, including first- and second-generation African immigrants.

This expanded Medicare coverage is long over-due, but we have a long way to go.

To read the proposed, expanded coverage for hepatitis B testing,  please click here.

To submit a comment about the proposed coverage, click here .

 

Living with Hepatitis B

Changing Jobs? How to Find the Best Employer Health Plan When You Have Hepatitis B

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getting-a-job-200x300
Image courtesy of stockimages at FreeDigitalPhotos.net

By Christine Kukka

You’ve just landed a new job with a better paycheck, but how do you make sure your new health plan covers the tests, doctor visits and medications needed for your or a family member’s hepatitis B?

Many people with chronic medical conditions find switching health plans can affect the quality of their medical care and requires a careful calculation of what their out-of-pocket healthcare costs may be in the year ahead.  There’s a lot to consider and doing your homework is essential to finding the best employer insurance plan for your health and your wallet. Two key questions to ask are:

Can I keep the same family doctor and/or liver specialist?  You don’t want to lose the expertise and personal rapport you may have developed with a provider. And, hepatitis B specialists are few and far between in many regions. Find out what doctors and specialists the new plan covers. Some plans offer several options, so find out which one covers your doctor. If the new plan doesn’t include your liver specialist, are you willing to pay extra to stay with him or her? For more information about health insurance terms and shopping for a plan, click here.

How do you make sure the new plan covers your drugs and lab tests? And how do you find this out without disclosing your hepatitis B? First, you cannot be denied coverage — or a job — because of your hepatitis B. The Affordable Care Act prohibits employers from denying anyone coverage because of a pre-existing health condition. However, you need to do your homework and look carefully at the deductibles, copays and coinsurance a plan offers.

When you are offered the job, or when you go for your benefits interview with the HR rep after accepting the job, ask for a copy of their health insurance plan and read it over carefully. It may be available online.  Ideally, you want coverage that covers the most and costs the least after you add up your monthly premiums (the amount you pay each month toward insurance coverage) and the copays (the portion you pay for drugs, lab tests, and doctor visits.)

If you or your family’s medical costs are high, you may find that selecting a plan with a high monthly premium may be the most affordable because your copays for tests and medications will be low.

To find out what costs you can expect (knowing you can’t predict every future medical event), try this exercise. Find out how much you paid during the past year for both premiums and out-of-pocket copays for drugs, lab tests, and doctor visits.

Now look at your new plan’s options. Assuming you have the same prescriptions, lab tests and doctor visits, how much would you pay under the new plan? If you have a choice of plans, apply the same test to each. Which plan is the least expensive when both copays and premiums are added up?

Look at a plan’s prescription pricing carefully. While health plans can’t openly refuse to insure people with costly, pre-existing conditions, some inflate the amount you pay for the two leading hepatitis B antiviral drugs (Viread and generic entecavir) to deliberately discourage people with chronic hepatitis B from choosing their health plans.

Every insurance plan has a drug formula overview in its description, which you have access to. It assigns a price “tier” to each drug. A low-cost generic antibiotic may be a Tier 1 and cost you only a $5 copay while a new, brand-name drug is assigned a pricier Tier 4 or 5 ranking and could be extremely expensive.

Look up any medications you are currently taking, or may take in the near future. For example, if your doctor has warned you that an antiviral may be in your future if your liver enzyme tests continue to rise, you will want to review your plan’s pricing for entecavir or tenofovir. If the health plan charges a high monthly copay for a generic antiviral such as entecavir, you may be able to file a complaint. Email the Hepatitis B Foundation at info@hepb.org for more information.

Reviewing health insurance coverage details isn’t easy, but it’s important to make sure your new health plan will be the best for you and your family.

What do you do if there is a one- or two-month lag before your new coverage begins? When you leave a job, you may be able to keep your old job’s health insurance coverage for several months. This is called COBRA continuation coverage. Under COBRA, you usually have to pay the entire monthly premium yourself, plus a small administrative fee. This may be costly, but if it provides good coverage and if you’re due for your annual physical, lab tests and ultrasound, or if you need to continue antivirals, it may be a good option.

Another option is the Health Insurance Marketplace . Also known as “Obamacare,” this helps uninsured people find and apply for quality, affordable health coverage, and low and middle-income people may qualify for lower costs based on their household size and income. Losing your health insurance because you’re changing jobs may qualify as a “life changing event” that allows you to apply. For more information on marketplace health plans and hepatitis B, please click here.

Another option is short-term or temporary health insurance coverage. For more information click here.

Baruch S. Blumberg Institute