Getting the medical care we need requires advocacy, because in the U.S. the quality of our healthcare–and even how long we live–depends on our income, ethnicity, gender and where we live. That is especially true when we live with hepatitis B.
Many affected by hepatitis B are not endowed with money, privilege or political power. Most of us are immigrants and people of African and Asian descent. This infection illuminates our country’s racial divides in healthcare. Asian-Americans, for example, have liver cancer rates 13-times higher than white Americans because they were never tested for hepatitis B, diagnosed or treated until it was too late.
Many of us are gay or injecting drug users. We are often uninsured or under-insured, which leaves us unable to pay for testing or treatment.
Our doctors, who often work in healthcare systems focused more on the bottom line than patient care, see too many patients in too little time. They may not know to screen us for hepatitis B, or monitor us properly and refer us for treatment when the infection damages our livers.
Despite good intentions, we live with a broken healthcare system and like any political system it requires the actions of patients, voters and advocacy organizations to improve.
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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
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
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.
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.
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.
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.
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"→
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
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.”
Volunteers at Boston’s National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness Day
By Christine Kukka
For years, public health advocates have struggled to educate both doctors and Asian-Americans about the high risk of hepatitis B that this ethnic group faces. It’s been a slow, uphill battle marked by moderate success.
Despite the fact that one in 12 Asian-Americans and Pacific Islanders (AAPI) is chronically infected with hepatitis B, more than two-thirds of them haven’t been screened and don’t know they’re infected.
But another group of immigrants and their children—from Sub-Saharan Africa—are also at high risk of hepatitis B and have received even less attention from public health advocates and the medical community across the U.S.
Of foreign-born U.S. residents with hepatitis B, about 58 percent are AAPIs and 11 percent come from Africa. In the past 20 years, the number of immigrants–primarily from war-torn Somalia, Nigeria, Ethiopia, Ghana, Kenya, and Egypt–have increased more than 750 percent. There are now 1.6 million African immigrants in the U.S. and 10 percent are believed to be infected with chronic hepatitis B.
In the largest study of its kind, 955 African-born residents living in New York City were screened for hepatitis B between 2011 and 2013. Doctors found 74 percent had been infected with hepatitis B in the past, and 9.6 percent had current, chronic or long-term infections.
Ponni V. Perumalswami, MD, director of the Hepatitis Outreach Network (HONE) at Mount Sinai School of Medicine in New York City
“I believe African immigrants have been underserved by our healthcare system,” observed Ponni V. Perumalswami, MD, assistant professor of medicine and director of the Hepatitis Outreach Network (HONE) at Mount Sinai School of Medicine in New York City and lead researcher of the New York City study. “Similar to Asian-Americans, African immigrants are often not screened or referred to treatment. Additionally, many at-risk African immigrants are not currently engaged in health care and have struggled to access medical care in our communities.”
Healthcare providers have struggled for decades to provide the resources and culturally-competent care needed to screen, immunize and refer infected AAPIs for treatment; now they must develop new strategies to reach African immigrant communities. These communities, found in large cities such as Atlanta and New York and in small towns such as Lewiston, Maine, have a wide array of distinct cultures, healthcare practices and languages.
A young Somali refugee. Courtesy of USAID (USAID) [Public domain], via Wikimedia Commons.Like their AAPI counterparts, many African immigrants lack access to any healthcare, let alone culturally-competent medical care that is trusted and embraced. “There is clearly a healthcare disparity with respect to the large burden of hepatitis B disease in this community, however very little research has been done to identify these gaps and develop successful interventions to bridge them,” Perumalswami explained.
She is now testing a group education program—called the Hepatitis Outreach NEtwork (HONE)–that could be adapted nationwide to raise awareness about hepatitis B. HONE enlists local public health agencies, community organizations, health care providers and community leaders to reach African immigrant communities. She also recommends using patient navigators from each immigrant African ethnic group to help people get screened, immunized and into treatment. “Not every person needs a patient navigator, but they can be very effective in getting some people screened and those infected linked to care,” she said
But for many, this outreach is too little too late. “Unfortunately, it is not uncommon for me to see patients who have been silently infected for decades with advanced liver cancer or suffering from complications of liver failure when we diagnose their hepatitis B infection for the first time,” she said.
That lack of screening and treatment continues to haunt AAPI communities. Vietnamese-American men whose infections were not diagnosed until it was too late make up a large percentage of people with liver cancer in the U.S.
Courtesy of the U.S. Centers for Disease Control and Prevention.
“It’s particularly troubling as we have a highly effective vaccine to
prevent hepatitis B and highly effective treatments to decrease the risk of liver cancer and liver disease progression,” Perumalswami commented.
In an effort to raise awareness about hepatitis B and C and HIV in the African immigrant community, a coalition of organizations, including the Hepatitis B Foundation and Hep B United, and local and national groups are supporting National African Immigrant and Refugee HIV/AIDS and Hepatitis Awareness Day (NAIRHAA Day) on Sept. 9.
A Twitter chat exploring ways to raise awareness among African immigrants in the U.S. is scheduled for 2 p.m. (EST) Tuesday, Sept. 13. Use hashtag #AIHHchat
For more information about NAIRHAA, including webinar training for healthcare providers and public health officials, please explore the following:
A street scene in Ghana. Photo by Ebenezer Akakpo.
By Christine Kukka
The HIV/AIDS epidemic, ebola and malaria have infected and killed millions in Sub-Saharan Africa , but another infection, more silent and insidious, has also destroyed millions of African lives yet has received little attention from the global community—hepatitis B.
A recent article in The Lancet medical journal estimates that between 5 and 20 percent of the 1 billion Africans in this region have been infected with hepatitis B and 5 percent are chronically infected.
The region lacks the healthcare workers and resources to educate, screen and immunize people for hepatitis B, and there are few medical centers or drugs available to treat those infected. In a cruel twist of fate, many people find out about their hepatitis B when they attempt to donate blood.
A road in northern Ghana. Photo by Ebenezer Akakpo.
“It was on one fateful day in 2007, during my second year in college, when I decided to donate blood to help save the lives of pregnant mothers who undergo complications during deliveries,” wrote one young man who now works with the Hepatitis Foundation of Ghana. “Everything was OK, until the lab technician called out my name and told me they cannot let me complete the processes because my blood was ‘incompatible.’ He later handed me a fact sheet on hepatitis and requested that I read it thoroughly,” he recalled. “I felt so confused and didn’t know what to do. I thought I would be referred to see a physician for counseling but no, nothing. Not knowing what to do, I decided to educate myself.”
He went online and read several articles about hepatitis B. He learned the importance of avoiding alcohol and smokin and eating healthy foods. “In 2009, I took another test that revealed I was in the chronic stage of the infection,” he recalled. “Even the health professionals at that facility couldn’t explain what that really meant. I was confused and didn’t know if I was going to die or not.”
A year later, he had another test that showed the infection was not currently causing any liver damage. “I live in a community and country where the level of awareness about hepatitis is very low,” he explained. “The majority of the people are ignorant about the situation. I have lost some family members as a result of the disease.”
His research led him to the foundation in Ghana. “I no longer feel left alone. I now feel I have someone whom I could call upon for any information or seek clarification concerning my situation. Not only me, but for my community too,” he wrote.
The foundation, established by Theobald Owusu-Ansah, is attempting to educate people about hepatitis B to stop an infection that is killing thousands in Ghana. In Africa, hepatitis B is commonly spread during childbirth, through re-used syringes due to scarce medical resources and sexually. A lack of knowledge about hepatitis B and how it is spread, especially among healthcare workers and midwives, has also helped spread the disease.
Owusu-Ansah established the foundation in 2007 after four of his family members died from hepatitis B. He realized he had to take action to educate people about this deadly infection and get better treatment for people living with hepatitis B. Here is his story about a young woman diagnosed while attending nursing school.
Theobald Owusu-Ansah, president of the Hepatitis Foundation of Ghana
“Initially, someone had put her on some herbal preparations and told her they would cure her ailment after she was first diagnosed with hepatitis B,” he recalled. Owusu-Ansah spent hours educating her about hepatitis B and she went for tests, which revealed she had liver damage. She was referred to a physician who prescribed the antiviral tenofovir (Viread) and recommended regular monitoring. After several months of treatment, her liver was healthy and her viral load was undetectable.
Years passed, she married and became pregnant. Osusu-Ansah reminded her that her babies would be protected against hepatitis B if they immediately received the first dose of the hepatitis B vaccine and HBIG within 12 hours of birth.
But things went wrong. She had stopped taking tenofovir. Her midwife gave her an herbal remedy for hepatitis B and told her the vaccine would be enough to protect the baby. It wasn’t, the baby became infected. The mother was devastated.
“Her story is not so different from many others’ experiences in some parts of Ghana,” he explained. “The unavailability of HBIG and the vaccine is challenging, and even when they are available, very few can afford them.”
In Ghana, and many other regions of Africa, the only vaccines available for free are combination (pentavalent) vaccines that contain vaccines for hepatitis B, diphtheria and other diseases. While economical, these combination vaccines cannot be administered until a baby is at least six weeks old, which is too late to prevent mother-to-child infection.
To break the infection cycle, a single dose (monovalent) hepatitis B vaccine must be administered within 12 hours of birth.
“I believe something can be done about this,” said Owusu-Ansah. “With government support, we need to expand our education campaigns to cover rural areas and take the message of hope to their doorsteps.”
For more information about the Hepatitis Foundation of Ghana, visit its website or email theobald2003@yahoo.com.
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net.
By Christine Kukka
Are you dreading taking your kids for their back-to-school vaccinations or wondering if vaccines do more harm than good? Let me tell you about my neighborhood.
Three years ago, a neighbor’s children came down with whooping cough (pertussis). It turns out, the parents didn’t believe in vaccinating their kids. All three children were infected as was their elderly grandmother and two other children down the street.
This family’s refusal to get vaccinated against this highly-infectious respiratory disease threatened the health of the neighborhood. Two doors away, a family had a new baby and the infant’s brother played with the infected children. Babies can’t be vaccinated against pertussis until they’re six months old.
Half of all babies who contract pertussis are hospitalized because they can’t clear the heavy mucus from their lungs. Of those hospitalized, 23 percent get pneumonia and 1 percent die. Before the pertussis vaccine became available, about 9,000 children died from the infection every year. Luckily, the baby wasn’t infected in this micro-epidemic.
Here’s another example why vaccines are worth the discomfort of a shot. My daughter, born in China, didn’t have access to immunizations, including the birth dose of the hepatitis B vaccine. As a result, she is chronically infected with hepatitis B. Had she been born in a country that immunizes children, she wouldn’t face the 15 to 25 percent risk of dying from liver disease that she faces today.
Immunizations are safe and effective, and they protect our families and our communities, which is why every child should be immunized before they start school this fall. So why doesn’t everyone protect their children?
Image courtesy of arztsamui at FreeDigitalPhotos.net.
Scientist and astrophysicist Neal deGrasse Tyson has a theory about why some people don’t believe science—even when it’s confirmed by objective, clinical data. Examples include conservatives who disavow global warming and, Tyson pointed out, college-educated Americans who don’t vaccinate their children.
In the U.S., it is college-educated parents who make up a large percentage of people who opt out of vaccination. Despite clear, scientific evidence, they believe vaccines pose a higher risk to their children than the diseases they prevent. These parents assume that because so many others immunize their children, these diseases have “gone away” and they don’t have to. It’s a dangerous and arrogant assumption.
Reliance on this “herd immunity” approach, which banks on enough people being immunized so the overall disease risk remains low, doesn’t work. Infectious diseases really never go away, and they come back with a vengeance when a growing number of community members stop vaccinating their children.
The pertussis strain that infected the U.S. and my neighborhood two years ago was a particularly bad one. Researchers believe the vaccine wasn’t 100 percent able to prevent that strain. Viruses mutate and things like this happen. But when it does, having a sizeable portion of a community not immunized acts as an accelerant to an epidemic.
There are already children and adults in every community who can’t be vaccinated (even when they want to be) because of health problems, or they have weak immune systems that do not respond well to immunization, such as the elderly. Herd immunity helps these people with weak immune systems, but it loses its effectiveness when a growing number of people opt out of immunizations and endanger public health.
There is real science confirming the safety and value of immunizations:
Before the measles vaccine became available, there were 500,000 measles cases every year in the U.S. and 500 deaths. By 2000, the country had eradicated the infection. However, in 2014 as more parents opted out of immunizations, the country experienced 667 measles cases in 27 states including an outbreak at Disneyland. Most who caught measles were not immunized.
Now let’s look at hepatitis B. According to the CDC, new cases of the deadly liver infection hepatitis B have declined 82 percent since 1991, when universal childhood immunizations became available. Before that, an estimated one in 20 Americans got hepatitis B.
Immunizations have been the medical miracle of the last century. Millions of lives have been saved. In observation of National Immunization Awareness Month this August, make sure your school- or college-bound children are up-to-date with their immunizations. And while you’re at it, check your own immunization record. No one is immune.
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.
Hep B United Summit members meet with California lawmakers in Washington DC.
By Christine Kukka
In late July, during World Hepatitis Day 2016, the fourth annual Hep B United Summit convened in Washington D.C. and dozens of advocates met with federal officials and brainstormed strategies to increase screening, immunization and linking people to care to eliminate hepatitis B across the country.
Asian-American and Pacific Islanders (AAPI) and African immigrant
Members of the Hep B United 2016 Summit in Washington DC.
communities are among those hardest hit. Crafting a culturally- and liguistically-adept approach on small or non-existent budgets to educate and screen these diverse populations remains a challenge for Hep B United’s more than 30 community coalitions in 15 states and Washington D.C.
On the upside, the coalition’s organizations have educated 4 million Americans and screened about 40,000. However, large swaths of the country lack outreach efforts to prevent the spread of hepatitis B. For a map and list of Hep B United Summit member organizations, click here.
The coalition’s ongoing hepatitis B prevention efforts mirror HIV and hepatitis C campaigns that have sought to increase education, screening, and linkage to care. But in many respects, Hep B advocates face more challenges:
Because there is a safe and effective vaccine that prevents hepatitis B, many state and federal health officials assume the infection will go away on its own and government resources for screening and prevention have been minimal.
Many immigrant populations affected by hepatitis B have unique languages and cultures, which requires careful, individual approaches to each community.
Federal healthcare programs often under-funded or inhibit effective prevention work. For example, Medicare currently does not cover the cost of life-saving hepatitis B tests in seniors, many of whom are in high-risk groups because of their ethnicity or personal history. The federal government has proposed to cover screening, but only if it’s ordered in a primary care office. Some of the most effective screening in high-risk communities often occurs at community-based settings or emergency rooms, far from a primary care office. Summit participants are orchestrating letter-writing to endorse the federal government’s proposed decision to cover hepatitis B screening under Medicare and to convince Medicare officials to broaden coverage of hepatitis B screening.
Summit also participants met with federal officials from the U.S. Department of Health and Human Services, Centers for Disease Prevention and Control (CDC) and the Department of Justice to push for more effective policies and increased funding to fight the world’s most common serious liver infection. One afternoon was spent visiting Congressional representatives to boost lawmakers’ awareness of the terrible toll hepatitis B takes on their constituencies.
“If community organizations can learn from each other and develop effective ways to educate people about hepatitis B and to get them screened and referred to medical care in the early stages of their infection, we can succeed in preventing new cases, save health care dollars and, most importantly, save lives,” said Jeffrey Caballero, AAPCHO executive director and Hep B United co-chair.
The following four hepatitis B advocates were honored at the summit for their work to eradicate hepatitis B:
Alex Shirreffs, Philadelphia’s Viral Hepatitis Prevention Coordinator
Alex Shirreffs, MPH, Viral Hepatitis Prevention Coordinator with the Philadelphia Department of Health. She was recognized for her collaboration with Hep B United Philadelphia to screen area AAPI communities. Her work ensures that hepatitis B remains a public health priority, and she serves as a critical liaison between Hep B United and other Adult Viral Hepatitis Prevention Coordinators nationwide.
Mohammed Abdul-Kadir, coordinator of Hepatitis B Coalition of Washington
Mohammed Abdul-Kadir, MPH, MSIS, coordinator of the Hepatitis B Coalition of Washington, (now part of International Community Health Services in Seattle), is recognized for his commitment to eradicating hepatitis B in Washington’s AAPI communities by bringing together stakeholders from across the state and providing free screening, education and linkage to care for thousands of individuals.
Hepatitis B civil rights advocate Nadine Shiroma
Nadine Shiroma, a national hepatitis B civil rights advocate from Seattle, has worked tirelessly with the Hepatitis B Foundation to eliminate hepatitis B-related discrimination in the United States. She is recognized for advocacy on behalf of hepatitis B-infected health care students, which resulted in hepatitis B being added as a protected condition under the Americans with Disabilities Act (ADA). The fight now has been taken to the U.S. Department of Defense, which currently bars infected applicants and discharges military personnel diagnosed with hepatitis B.
Moon Chen, director of the Asian American Network for Cancer Awareness, Research and Training.
Moon Chen, Ph.D., director of the Asian American Network for Cancer Awareness, Research and Training in Sacramento, Calif., is recognized for making hepatitis B a priority for academic and public health research, and for continuing to research and identify effective hepatitis B prevention, screening and referral-to-care intervention models that can be replicated nationwide.
For more information about joining Hep B United, click here.
By Christine Kukka
![A young Somali refugee. Courtesy of USAID (USAID) [Public domain], via Wikimedia Commons.](https://www.hepb.org/blog/wp-content/uploads/2016/08/512px-Little_Somali_girl-2-256x300.jpg)
