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Who is Ted Slavin? #virusappreciationday

“We will long remember Ted Slavin as a gallant man who loved life and who contributed greatly to our research efforts”

-Baruch S. Blumberg, Irving Millman, W. Thomas London, and other members of the Division of Clinical Research Fox Chase Cancer Center, 19851

Baruch S. Blumberg

“Who is Ted Slavin? Why haven’t I heard about him before?” crept into my mind as I was reading The Immortal Life of Henrietta Lacks. Rebecca Skloot wrote a short snippet about Ted Slavin, detailing the story of a hemophiliac who sold his antibodies and aided Dr. Baruch Blumberg in the discovery of the link between the hepatitis B virus and liver cancer, which eventually led to the first hepatitis B vaccine.2 I was surprised that I had never heard of him, and that his name was not enshrined on the walls of the Hepatitis B Foundation. I see the smiling and jovial face of Dr. Blumberg nearly every time I walk into the office, but never the image of a man who contributed so much to his efforts.

Blood Serum

Ted Slavin developed antibodies against hepatitis B after receiving infected blood transfusions to treat his hemophilia. The blood he received back in the 1950s was not screened for any diseases. His doctor helped him realize that his blood was valuable because of the copious amounts of antibodies for hepatitis B. At the time, those antibodies were a hot commodity as scientists were conducting research to learn more about hepatitis B prevention and treatment. Slavin decided to the sell his antibody-rich blood and even donated his blood to Dr. Blumberg’s research team at Fox Chase Cancer Center. He later formed Essential Biologicals, a company that collected blood from others like him. They were everyday patients who could turn their rare or unique blood into money making products, while at the same time advancing important research into diseases that were not well understood.2

As I read the brief overview of Slavin’s life, I initially perceived him as someone who was both lucky and smart: Slavin was lucky because his doctor gave him information on the value of his antibodies2; and smart because he knew how to make the best of something once considered a burden in his life.3 As I did a little more detective work, I realized Ted Slavin was not just a guy who made money off his cells, but someone who contributed to the fight against the hepatitis B virus, which I am passionate about!

My detective work led me to a deeper understanding of Mr. Slavin and his contribution to important milestones on the road to hepatitis B elimination.3,4,5,6,7 I found discussions and case studies on the ethics associated with his circumstance. Through my research journey, I learned more about him and my perception of Slavin started to change. He was, like many, struggling to make ends meet. He didn’t entirely profit off his antibodies because he donated a majority of the money he made to advance scientific research.4 At the same time, Slavin was “hopeful for a cure,” and he trusted Dr. Blumberg, his favorite researcher among the many studying hepatitis B, with his antibodies.1 To Dr. Blumberg and the researchers working with him, Ted Slavin was a brave, courageous man who helped save millions of lives.1

The story of Ted Slavin, like that of Henrietta Lacks, is not only a reminder of the importance of bioethics and the need for public health and scientific research; his story reminds us there is an invisible face behind every success. Because of Ted Slavin, there are tests to diagnose hepatitis B, ways to detect liver cancer linked to hepatitis B, and the first cancer preventative vaccine!

For more information about the hepatitis B vaccine, please visit our website here.

For helping looking for the hepatitis B vaccine, you can go  here or to the HealthMap Vaccine Finder.

 

References:

  1. Lavin, EFS. (2013). Exploring Life and Death at the Cellular Level: An Examination of How Our Cells Can Live Without Us. Quadrivium: A Journal of Multidisciplinary Scholarship, 5(1),
  2. Skloot, R. (2010). The Immortal Life of Henrietta Lacks. Crown Publishing Group.
  3. Ted Slavin’s Story and more. Retrieved from: http://tissuerights.weebly.com/ted-slavin.html
  4. Skloot, R. (2006, Apr 16). Taking the Least of You. The New York Times Magazine. Retrieved from: http://www.nytimes.com/2006/04/16/magazine/taking-the-least-of-you.html
  5. Angsana T. (2010, Nov 9). Second Story from Ted Slavin. Retrieved from: http://angsanat.blogspot.com/2010/11/second-story-from-ted-slavin.html
  6. C, Anna. (2012, Jul 26). World Hepatitis Day: The History of the Hepatitis B Vaccine. Retrieved from: http://advocatesaz.org/2012/07/26/world-hepatitis-day-the-history-of-the-hepatitis-b-vaccine/

 

A Valuable Tool Against Chronic Hepatitis B Goes Unused in Many Developing Countries

Image courtesy of tuelekza at FreeDigitalPhotos.net.
Image courtesy of tuelekza at FreeDigitalPhotos.net.

By Christine Kukka

A critical tool that stops the spread of nearly half of all new chronic hepatitis B infections is still unavailable in many developing countries – the hepatitis B vaccine birth dose.

When the hepatitis B vaccine is immediately administered to a baby born to a hepatitis B-infected mother, it stops the terrible spread of hepatitis B to a new generation.

But this vaccine remains unavailable and financially out-of-reach for many parents in rural areas of Africa, Asia and other regions.

“In Ghana, even if parents know where to find the vaccine, the cost sometimes deters them from accessing it,” said Theobald Owusu-Ansah of the Hepatitis B Foundation of Ghana.   “And when midwives help mothers deliver their babies in their homes, they do not have the vaccine with them because it must be refrigerated.”

While a global childhood immunization program, sponsored by the global vaccine alliance GAVI, has saved millions of lives, the hepatitis B birth dose remains a critical, missing piece of its otherwise successful global immunization strategy.

Image courtesy of africa at FreeDigitalPhotos.net.
Image courtesy of africa at FreeDigitalPhotos.net.

To effectively prevent mother-to-child (perinatal) transmission of hepatitis B, the single-dose hepatitis B vaccine must be administered within 12 to 24* hours of birth. In about 90 percent of cases, this vaccine effectively prevents infection, unless the mother’s viral load is extremely high.**

Today, GAVI funds and promotes the pentavalent vaccine, which prevents five diseases including hepatitis B, for nearly all children in developing countries. But here’s the catch, the earliest the first dose of the pentavalent vaccine can be administered is six weeks of age because it contains the diphtheria vaccine. This is far too late to prevent perinatal hepatitis B infection.

GAVI’s pentavalent vaccine makes economic and medical sense. One vaccine that prevents several diseases lowers manufacturing and shipping costs and requires fewer injections. Indeed, widespread immunization with GAVI’s pentavalent vaccine in 73 developing countries has prevented 7 million deaths, but it doesn’t prevent chronic hepatitis B acquired at birth.

The World Health Organization (WHO) has made eradication of hepatitis B by 2030 a major goal, but it is unattainable unless perinatal infection is prevented.

Without GAVI’s financing or promotion of the hepatitis B birth dose, many developing countries have done little to promote the birth dose, despite their high rates of hepatitis B. According to the WHO, in 2015, 8.4 million babies were born in African countries that did not provide the birth dose of the hepatitis B vaccine.

In addition to a lack of political will on the part of GAVI and these countries, there are other barriers to distributing the hepatitis B birth vaccine. As Owusu-Ansah explained, about one-third of births in his native Ghana  and about 45 percent of all births in Africa take place without a healthcare worker or midwife present.

Volunteers from the Rann India Foundation teach villagers about hepatitis B testing and prevention in India.
Volunteers from the Rann India Foundation teach villagers about hepatitis B testing and prevention in India.

Suren Surender, founder and president of the Rann Bhoomi Foundation, which educates rural villagers in India about hepatitis B prevention, added that even when healthcare workers are present at childbirths, “there is a lack of knowledge about birth dose administration and there is also a lack of community awareness about the benefits of getting the birth dose.”

Having a global leader like GAVI lend financial and strategic support for the hepatitis B birth vaccine would go far to chip away at these high perinatal infection rates in rural regions. In 2013, GAVI and the global vaccine alliance explored funding the hepatitis B birth dose as part of its Vaccine Investment Strategy (VIS),  but officials decided not to fund it.

According to a GAVI spokeswoman, the key deterrent was implementation — getting the refrigerated vaccine birth dose to rural areas within hours of a child’s birth – rather than cost.

“Many births in GAVI-supported countries do occur outside health facilities,” she noted. “Indeed, coverage of hepatitis B birth dose in many countries delivering this intervention is low. Ultimately, the Vaccine Investment Strategy analysis and consultations recommended that (GAVI) should focus its limited resources on other high-impact vaccines at the time.”

However, research suggests the hepatitis B vaccine may be effective for several days or weeks in warm climates without refrigeration, which could increase their use in rural regions if there was more financial and political support.

In 2018, GAVI will reconsider potential support for the hepatitis B birth dose when it develops a new Vaccine Investment Strategy, with a decision expected in late 2018.

GAVI’s support for the birth vaccine is needed immediately. Only GAVI has the resources and political clout to help countries realign their immunization policies to allow the next generation of children born to hepatitis B-infected parents to live without liver disease.

*North American medical guidelines recommend the first hepatitis B vaccine dose be administered within 12 hours of birth, while WHO recommends the vaccine be given within 24 hours of birth.

**The addition of a dose of HBIG (hepatitis B antibodies) along with the vaccine raises the prevention rate a few percentage points. However, the vaccine alone is highly effective.

The Hepatitis B Community Cringes As Vaccine Skeptics Take the Stage in Washington

Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net
Image courtesy of Tuomas_Lehtinen at FreeDigitalPhotos.net

By Christine Kukka

In a profound blow to science, public health and the hepatitis B community, President-elect Donald Trump is reportedly asking Robert F. Kennedy Jr. — who believes that vaccines cause autism — to chair a national commission on vaccines.

Countless studies show vaccines are safe and effective and do not cause autism. The hepatitis B vaccine alone has contributed to an 82 percent drop in this deadly liver disease in the U.S. since 1991. Before universal childhood immunizations became available, one in 20 Americans had been infected with hepatitis B. Sadly, that spectacular success has not quieted vaccine skeptics.

It is heart-breaking to hear that an anti-vaccine activist may gain a public forum to promote his scientifically-unfounded opinions. If the hepatitis B vaccine had been available to my daughter and millions of others around the world at birth, there would be fewer people with chronic hepatitis B, fewer deaths from liver disease and cancer and far less anguish, fear and stigma. Vaccines safely and effectively prevent disease, and all of us who have been touched by hepatitis B can attest to their life-saving value.

Let’s review the indisputable scientific facts about vaccines, and why this controversy has resurfaced.

In 1998, the well-respected medical journal Lancet published a paper by researcher Andrew Wakefield and 12 of his colleagues linking a standard measles, mumps and rubella (MMR) vaccine and its preservative  thimerosal to autism. Despite its tiny sample size (just 12 children) and its speculative conclusions, the study was publicized and bolstered the anti-vaccine movement.

The study proved to be a fraud. Editors of the Lancet later retracted the report, and additional investigations into the study found some of children in the study did even have autism. But the damage was done and hepatitis B vaccine makers and others scrambled to remove thimerasol from their vaccines to counter the undocumented claims that it posed a threat to children. A thimerasol-free, hepatitis B vaccine became available in  late 1999.

Image courtesy of meepoohfoto at FreeDigitalPhotos.net.
Image courtesy of meepoohfoto at FreeDigitalPhotos.net.

But parents in the U.S. increasingly chose not to vaccinate their children, even after the disappearance of thimerasol. They didn’t like all the shots their babies were given, and vaccines became victims of their own success. They were so effective that parents began to believe their children were no longer at risk of these vaccine-preventable diseases and did not need immunization.

Before the measles vaccine became available, there were 500,000 cases of measles annually in the U.S. and 500 deaths. By 2000, due to universal immunization, measles had been eradicated. Then the anti-vaccine movement took hold and more and more parents chose not to vaccinate their children. In 2014, the U.S. experienced 667 cases of measles in 27 states, including an outbreak at Disneyland. This is what happens when parents stop vaccinating their children.

What is so piercing and terrible is that millions of us would be free of hepatitis B if only we had been vaccinated at birth or during childhood.

To arouse suspicion about vaccines that save millions of people every day is unforgivable. My daughter has hepatitis B today because this vaccine was not available when she was born. To plant false seeds of doubt about a life-saving vaccine undermines all we have worked for in our effort to eradicate hepatitis B in the next 30 years.

“A conspiracy theory such as the one about the autism vaccine is like an untreated wound,” wrote Michael Specter recently in The New Yorker. “It has festered for years, and yesterday Trump and Kennedy guaranteed that it can only deepen—causing tremendous destruction and needless pain.”

For factual information about vaccine safety, schedules, and why babies are given so many vaccines, click here.

A Hero Takes the Fight Against Hepatitis B to Rural Ghana

A street scene in Ghana. Photo by Ebenezer Akakpo.
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.
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
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.

Is Your Family Getting Together for the Holidays? Time to Discover Your Medical History

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

When we have chronic hepatitis B, knowing our family medical history can give us an inside edge to fight this infection.

Hepatitis B is an infection that often runs in families, and knowing how our parents or grandparents handled this liver disease can give us insider information about our own genetic prospects with hepatitis B.

Experts estimate that more than half of us worldwide became infected at birth. Our mothers may have been infected with hepatitis B and immunization, which can prevent infection if administered within 12 hours of birth, was not available to us as newborns, nor to our mothers or grandmothers. Continue reading "Is Your Family Getting Together for the Holidays? Time to Discover Your Medical History"

Shop Carefully for the Best Insurance Plan When You Have Hepatitis B

Image courtesy of digitalart at FreeDigitalPhotos.net
Image courtesy of digitalart at FreeDigitalPhotos.net

With the cost of health care and prescription drugs soaring, it’s important to choose health insurance carefully when you take hepatitis B medications and need frequent check-ups and lab tests.

In the next two months, Medicare recipients, people who get insurance through their jobs and consumers buying coverage through the Affordable Care Act (Obamacare) will be selecting insurance plans during open enrollment.

If you take antivirals or interferon and have frequent lab tests and doctor visits, it’s important that you select the plan that:

  • Has your specialist or primary care doctor and lab in its network,
  • And offers the lowest copay for the drugs you need.

Continue reading "Shop Carefully for the Best Insurance Plan When You Have Hepatitis B"

Get Tested for Liver Cancer, Your Life May Depend on It

Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net
Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

October is Liver Cancer Awareness Month. It may be a sleeper of a event when compared to other health campaigns, but for us who live with viral hepatitis, it’s an uncomfortable but critical reminder of the importance of monitoring our liver health to prevent cancer.

Viral hepatitis, especially B and C, are viral infections that can cause liver cancer  (also called hepatocellular carcinoma or HCC.) Researchers are still studying why some people are more prone to liver cancer, but we who live with chronic hepatitis B or C have a 25 to 40 percent lifetime risk of developing liver cancer. The infection, which hijacks our liver cells to manufacture more virus, causes inflammation, scarring and even cancer as the liver cells grow out of control.

The longer we are infected with viral hepatitis, the higher our risk of developing liver cancer. While liver cancer often occurs in people with cirrhosis (severe liver scarring), some of us develop cancer without cirrhosis. Continue reading "Get Tested for Liver Cancer, Your Life May Depend on It"

Preparing for College, Dating and Disclosing Hepatitis B

Image courtesy of jesadaphorn at FreeDigitalPhotos.net
Image courtesy of jesadaphorn at FreeDigitalPhotos.net

When my daughter, who has chronic hepatitis B, packed for her freshman year of college, I peppered her with warnings about the need for standard precautions and condoms. I suggested wording for a future conversation where she would disclose her infection and negotiate safe sex with a potential partner.

I hoped these verbal dress rehearsals would empower and protect her, especially if that potential boyfriend turned her down. I wanted her to know that any rejection would not be about her or her hepatitis B, it would be about his fears. Continue reading "Preparing for College, Dating and Disclosing Hepatitis B"

World Hepatitis Day: Preventing Hepatitis B in New York City

Screen Shot 2015-07-19 at 10.22.51 AMBy Vivian Huang, MD MPH,
Hepatitis B Program Director
at the Charles B Wang Community Health Center, NYC

World Hepatitis Day is commemorated on July 28 every year.  The date was selected to honor the birthday of the Nobel Laureate Professor Baruch Blumberg, who discovered the hepatitis B virus. Continue reading "World Hepatitis Day: Preventing Hepatitis B in New York City"

Know Your Rights: What College Students with Hep B Need to Know About Health Forms and Disclosure

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

This summer, students living with hepatitis B face a task that can be as stressful as SATs, entrance exams or writing college essays – completing their colleges’ health forms.

Some colleges and graduate schools require no medical information while others expect you to document in detail your allergies, immunizations, medical history and even undergo TB testing.

The good news is colleges want to make sure all students are vaccinated against hepatitis B, the bad news is the requirement can force students to disclose their hepatitis B infection. Here are some important things parents and students should know when filling out college health forms.

No school can deny you admission or treat you differently because you have hepatitis B. The Americans with Disabilities Act (ADA) prohibits discrimination based on disabilities, and that includes hepatitis B.

Continue reading "Know Your Rights: What College Students with Hep B Need to Know About Health Forms and Disclosure"