Sports and Infectious Disease – Part 1 of 3

6 04 2013

exeterIf you coach a little league team, parent an active athlete or are an avid sportsperson yourself, it is important to know what health risks may be present during athletic events other than shin splints and bruised egos.

Close physical contact and a heightened chance of bleeding present a chance for disease transmission unless appropriate precautions are taken.

Athletes, trainers, coaches, parents, and teachers alike must know how to prevent the transmission of bloodborne viruses such as HIV and hepatitis B or C, or even skin-to-skin infections.

These infectious diseases, and others, pose complex problems for athletes of all ages and everyone involved in sports activities.  But following standard precautions to prevent bloodborne, skin-to-skin, and respiratory infections simplifies and safeguards sports events and ensures that everyone can participate safely.

Sports and Standard Precautions

Universal use of standard precautions is critical because many children, adolescents, and adults who are infected with viruses, such as HIV and hepatitis B or C, may not even know they have these viruses.  Estimates vary, but some predict that more than half of those infected with these viruses do not know they’re infected.

Standard precautions protect everyone, from those whose diseases have been identified, to those that have not yet been diagnosed, to those not infected.  When everyone follows standard precautions, no one who has an infection needs to be treated differently.  Essentially, standard precautions are the great equalizer; when followed, they allow everyone to fully and safely participate in sporting events.

The more serious bloodborne viruses that athletes need to be aware of are: HIV (the virus that causes AIDS), hepatitis B, and hepatitis C.  There is no recommendation that people infected with these viruses not be allowed to participate in most sports.

Although HIV and hepatitis C are not vaccine-preventable, there is a safe and effective vaccine that prevents hepatitis B infection.

Skin-to-Skin Infections

According to the NCAA Injury Surveillance System, “skin infections accounted for almost one-third of the practice time loss events” in wrestling during the 2001-2002 season.  As a result, the NCAA recommends that coaches, teachers and other sports officials be able to identify symptoms of skin infections.  Symptoms may include:

  • Crusting
  • Scaliness
  • Oozing lesions

Skin infections may include:

  • Bacterial skin infections including impetigo, erysipelas, carbuncle, staphylococcal disease, folliculitis and hidradenitis suppurativa.
  • Parasitic skin infections including pediculosis and scabies.
  • Viral skin infections including herpes simplex, chickenpox and molluscum contagiosum.
  • Fungal skin infections including ringworm.

In some cases, such as fungal infections, the skin conditions can be covered with a securely attached bandage or non-permeable patch to allow participation in the sporting event.

In addition to identification and treatment of individuals with skin infections, prevention can occur through proper routine cleaning of all equipment, including mats and shared common areas, such as locker rooms.

Respiratory Illnesses

Anyone with an infectious respiratory illness, such as flu, or whooping cough, or perhaps tuberculosis, should be prohibited from playing to prevent the spread of infections that are transmitted through respiratory routes.

Check back over the next couple of weeks for Parts 2 and 3 in this sports series. Part 2 gets into specifics on bloodborne pathogens, and Part 3 provides guidelines for sports teams to follow before, during, and after each event.

 

See PKIDs’ Infectious Disease Workshop for more information.

Photo courtesy of University of Exeter





Hep B Clinical Trial

16 01 2013

When babies are infected with hepatitis B, chances are they’ll stay infected for life. It becomes a chronic condition.

Some live long lives and their deaths are unrelated to their hep B infection.

Others develop cancer or their liver gives out. And then there are those who have minor symptoms, such as jaundice or fatigue.

You never know what or when or if something’s going to happen.

There’s no wonder drug for this disease. The available treatments are anemic at best, and few get favorable results.

My daughter, who was infected as an infant, has lived with hep B for 13 years. We’ve waited a long time for drugs that might work for her stage of the disease.

Hope has just peeked over the horizon.

NIH is running a clinical trial through a few centers in the US and Canada on children whose hep B infection is at a certain stage.

They’re using a combination of entecavir and pegylated interferon. They’re not looking for a cure, but rather hoping to slow it down. Even the best results wouldn’t remove the hep b virus from the cells. It’s integrated now, and there’s no work being done that’s close to getting it out of the cells it’s infected.

But, if the stars align and results are better than expected, it could be that those who respond to this treatment can relax, knowing hep B needn’t remain on their worry list.

That’s what we want. We all want our kids to live long, happy, healthy lives.

We flew to San Francisco yesterday for blood work and to sign forms. Lots of forms. Dr. Phil Rosenthal is running the trial and Shannon Fleck, the clinical research coordinator at UCSF Benioff Children’s Hospital, is assisting. I’ve known Phil for nearly 20 years and was delighted to see how optimistic he is about this drug combo.

This first step is to determine if my daughter is eligible for participation in the study. Her lab results have to match the criteria set for the trial.

If she is eligible, we fly back down within 30 days and her name goes into a computer, which then spits back out her placement. She’ll either be in the control group (no treatment) or the treatment group.

If she’s in the control group and the study is proving successful, she’ll be allowed compassionate use of the drugs, but that won’t be for two or three years.

That’s where we are—not even past the first hurdle.

I know people who’ve been infected with hep B in their adult years and have died from the disease. And I know people who’ve had cancer or liver transplants, or both—all because of this infection.

There are lots of ways to become infected. The easiest way to prevent infection is to get vaccinated. You, your siblings, your parents, your kids . . . ask your healthcare provider about it.

You can’t fix this with an aspirin.

By Hep B Mom





Infected Kids and Sports

23 07 2012

While soccer, softball and gymnastics are a joyful rite of passage for many young children, athletic events carry a risk for all children, given the increased chance for mishaps, accidents and blood spills.

For parents of children with viral infectious diseases, including hepatitis B, hepatitis C and HIV/AIDS, these games often present a number of stressful issues.

  • What if my child is hurt and another child is exposed to his or her blood?
  • Should I tell the coach about my child’s infectious disease if it will spur him or her to practice standard (universal) precautions?
  • What if the coach or athletic director doesn’t know or practice standard precautions?
  • Should I attend every game in case there is an accident?
  • Should my child even be playing this sport?

The American Academy of Pediatrics tackled this difficult issue in December, 1999, with a policy statement on HIV and Other BloodBorne Viral Pathogens in the Athletic Setting. (This policy was reaffirmed in 2008.) In it, the Academy made clear, “Because of the low probability of transmission of their infection to other athletes, athletes infected with HIV, hepatitis B or hepatitis C should be allowed to participate in all sports.”

That participation, however, assumes all athletes and coaches will follow standard precautions to prevent and minimize exposure to bloodborne viruses.

The Academy tackled each infectious disease individually.

HIV/AIDS: The risk of HIV infection through skin or mucous membrane exposure to infected blood or other infectious bodily fluids during sports events is very low. The Academy found the risk from damaged skin or mucous membrane exposure was one in 1,007 exposures or 0.1 percent.

Hepatitis B: While hepatitis B is more easily transmitted through exposure to infected blood than HIV, the Academy found only two documented sports transmission. A high school sumo wrestler with chronic hepatitis B was found to have transmitted the infection to a team member. Wrestling is the only sport that raised concern because herpes, impetigo and measles have been transmitted through skin-to-skin contact. However, there is no risk of bloodborne pathogens being contracted through wrestling, the Academy found.

An outbreak of hepatitis B occurred within an outdoor orienteering team in Sweden. Doctors believe the team members used a common cup of warm water to clean wounds caused by branches and thorns.

Hepatitis C: The risk of transmission is greater than for HIV but less than with hepatitis B. The Academy reported no documented cases of transmission in sports.

“There is clearly no basis for excluding any student from sports if they are infected,” said Dr. Steven J. Anderson, who was chair of the Academy’s Committee on Sports Medicine and Fitness when it drafted the Academy’s policy, “and we should also try to protect the confidentiality of each athlete.”

Dr. Anderson, a pediatrics professor at the University of Washington and a team doctor for many high school athletic teams, ballet companies and the U.S. Olympic Diving Team, suggests children should have access to any sport, except boxing, which the Academy opposes for all youths because of its physical risks.

Pediatricians can avoid reporting a student’s infection, the Academy noted, by making it clear on any participation forms that they support the Academy’s position that all students can participate in all sports and that pediatricians must respect an athlete’s right to confidentiality.

“I personally feel parents have no obligation to disclose the infectious status of their children to anyone,” said Dr. Anderson, “that includes their own physicians! While that may seem wrong, it is felt that if standard precautions are used for blood contact or contamination, the risk of contagion is adequately reduced.”

But strict compliance with standard precautions is critical for this open-embrace of all athletes, regardless of their infectious status. “As a parent, I would make sure that there is a plan in place to handle blood spills,” said Dr. Anderson, “including latex gloves, occlusive dressings, appropriate sterilizing solutions, disposal bags and event a printed protocol for coaches, athletes and officials.

“If standard precautions are not followed, I would recommend that the coaches or instructors are queried as to their familiarity with the precautions,” he added. “If they are not familiar with or following procedures, a higher up source needs to be consulted, such as a league office or school administrator.”

Parents should also contact the school or athletic league’s physician so he or she can also act as an advocate to ensure the coaches comply with the department or organization’s safety procedures.

But the Academy’s policy may not lessen the stress some parents feel when their very young children approach a soccer field for the first time. “When children are young, parents should educate their children about the dangers of blood contact,” said Dr. Anderson. “Despite the trauma that can accompany free play, I don’t hear of too many cases where two or more bleeding children mix their blood. I would also hope that an adult would be present when children are playing and would be consulted if there were an injury.”

Dr. Anderson feels it is not necessary to disclose a child’s infectious status to a coach. “Given the low risk of infecting other children, and the high risk of being shunned or ostracized. However, I think a responsible parent would be adamant about standard precautions being in place and followed. I supposed an astute coach might make inferences if a particular parent was a zealot about blood contamination. I would read that as a message that their child was infected and that they wanted their child to participate without creating a risk for others.”

Even when a child has an HIV infection, disclosure is not a requirement, explained Dr. Anderson, stating his personal opinion. “However, if a coach is educated about the risks, the necessary precautions and can be trusted to maintain confidentiality, disclosure may be appropriate. Unfortunately, most youth sports coaches are parent volunteers, non-professionals and are unlikely to have a long-term relationship with the athlete. In such cases, I recommend that standard precautions be followed.”

Dr. Anderson contends active contact sports, such as football, are also not off limits to athletes with infectious viral hepatitis. “However, students with infectious hepatitis A (spread through close physical contact with contaminated food, water or skin) or with liver or spleen enlargement should be restricted from contact or collision sports until the liver or spleen has returned to normal size,” he added, “and the person is no longer contagious.”

One mother whose son has hepatitis B commented, “I used to worry about my son infecting other children, but eventually I decided to make sports decisions based on what my kids risked catching from others.”

This post originates from PKIDs’ website.

Image courtesy of Rugby Pioneers





Telling Our Kids They’re Infected With Hepatitis or HIV

16 01 2012

If hearing your child is infected with HIV or hepatitis B or C is the worst that can happen to a parent, telling your child about the infection runs a close second.

When should a parent disclose? How should they tell them? What will a child ask? Will they ever forgive the parents who infected them? Are silence and secrecy justified to protect a child from a painful diagnosis?

Two pioneers who have peered into the disclosure cauldron are Lori W. Wiener, coordinator of the Pediatric HIV Psycho-Social Support and Research Program at the National Institutes of Health, and Heidi Haiken, coordinator of Social Work at the Francois Xavier Bagnoud Center in Newark, N.J., an innovative program that works with parents and children with HIV.

For more than 10 years, Haiken and Wiener have worked with hundreds of families infected with and affected by HIV on the emotional and social issues related to the disease. Wiener, who has a PhD, has researched and written about the impact of disclosure on family members.

Their combined experiences have produced two cardinal rules for parents of children infected with chronic, viral infectious diseases:

  1. Never lie. You don’t have to name the disease if children are very young, but never, never lie. The damage to the parent-child relationship will surpass any short-lived benefits gained by deceit.
  2. Disclose as early as you can, especially once kids start asking questions. The longer you wait, the harder it gets and the greater your chance of undermining your child’s trust in you.

“We even tell parents who come to the center that if they don’t tell the kids by the time they reach sexual maturity, we will,” Haiken said. “But of course it’s much, much healthier to have this information come from the parents.”

Both women acknowledge that disclosing is very traumatic for parents. “For some parents, it’s just devastating,” said Haiken. “They feel guilt because they infected the child because of their past sexual behavior or drug use. They feel guilt that the child has to suffer. Even for parents of children who contracted it from transfusions or are adopted, disclosure is extremely difficult.”

Wiener, who has written several research papers on this topic, found the longer parents withheld the diagnosis, the more embedded the lies became and the harder it became to disclose the truth. “Parents often fear that once they disclose new and different information, that their child will no longer trust them,” she said. “Following disclosure, many of these children feel embarrassed that other people in their family have been aware of the diagnosis before they had been informed. Once disclosure takes place, these issues and feelings can be successfully dealt with in individual and group counseling sessions with parents and children.”

Haiken and other social workers at the center work hard to help parents work through their guilt, or at least face it without flinching, before they disclose.

“I tell them you didn’t mean for this to happen, it’s clear you never wanted to hurt your child, look at all the wonderful things you’ve done for your child,” said Haiken. “After a while they get there, they see it, but it’s still very difficult. No parent ever wants to infect her child. It’s something they felt they had no control over.”

In terms of disclosure, parents who are themselves living with HIV have additional challenges to face. They fear disclosing their own life-threatening disease to their children. But generally, says Wiener, by the time children reach ages 6 to 10, they realize the consequence and finality of death. It is useless to shield children this age from the knowledge that their parents have a serious or terminal illness.

The disclosure process, timetable and style are often dictated by the parents’ health. Can they focus on their kids and execute disclosure, or are their own health problems overwhelming? Are they getting the support and time they need or are their own medications, insurance forms and other factors too overwhelming?

“Foster or adoptive parents have the luxury of not having to worry about their own illnesses, so the emotional and financial stress on the entire family may not be as intense,” noted Haiken.

The journey to disclosure begins early, says Wiener. “The child and parent should first have a sense of trust—that is the highest priority.” Disclosure occurs little by little in age-appropriate ways as soon as a child can communicate. Just like talking about adoption, it’s always on the table, though not all the details or medical terms may be exposed just yet.

Ideally, when the parent discloses the conversation should go something like this, suggests Wiener.

“Do you remember when I told you that you had a germ in your blood? That’s why we have blood work done every year. (And) Do you remember I told you that you got the germ from blood? Well, that germ is a virus that is called HIV or hepatitis….”

“You see, the disclosure dialogue is a constant building process,” she said. “If the child asks why the parent didn’t tell them earlier, the parent needs to be able to say, ‘I never lied to you, I told you what was wrong, I just hadn’t told you name of the virus.”

It may take a child weeks, months or years to absorb the diagnosis. “Try to be where the child is at when they ask questions,” wrote Wiener. “Let the child know that no matter how difficult the subject matter, he or she can always ask questions or share feelings. Be careful, however, not to provide more information than the child wants or is prepared for. They may not be ready for a virology discussion.

“You never want to be in the position of telling a 12 year-old about his or her disease that you have never even referred to before,” she added. “That is my main concern in the disclosure process. We’ve interviewed a lot of children who have been disclosed to. Most felt they had been told at the right age and by the right person except those whose parents had a doctor tell them. Those were the only kids who remained upset about the disclosure process.”

At NIH, counselors work intensely with parents of HIV-infected children to prepare them for the disclosure discussion. Social workers even have parents write out what they will tell their children and then play the part of the child in role-play situations. Generally, parents should be prepared to answer the following questions, depending on the child’s age and development. (Some questions apply if the parent is infected also.)

Why did this happen to you?

Where did you get it from?

Are you going to die?

Am I the reason you got sick?

Who else in the family has it?

Why do I have it?

Why don’t (siblings) have it?

Am I going to die?

Will this hurt?

Who else knows I have this?

Who can I tell?

What will happen to me and (siblings)?

Can I get married?

Can I have children?

Here are some general guidelines Wiener has identified for parents to consider as they prepare for the disclosure discussion.

Where do you want to make the disclosure and who should be part of the discussion?  

“You don’t want to have a ton of people there, just those whom the child trusts and feels most comfortable with,” cautioned Wiener. “Try to anticipate the child’s response based on his or her emotional age and maturity. Be careful never to disclose when you’re angry, or during an argument. Have the discussion in a safe, comfortable environment.”

What is the most important message you want your child to walk away with from this discussion?  

Possibilities include: Nothing is going to change… I am just now giving you the name of the virus… We will always be there for you… I will never lie to you… Nothing you did caused this disease.

How exactly will you disclose the actual diagnosis?  

“We have parents write out how they’d like it to happen, and they always start out with, ‘Do you remember?’ Weave in pertinent aspects of the child’s life and pick up the threads of your past discussions about infections,” suggested Wiener. “Rehearse the questions and answers, including ‘How did I get it? Can I get married? Can I have kids? Who else knows about it?’”

If the diagnosis is to be kept secret, who else can the child talk to?  

“If parents tell a child not to tell anyone, the first thing a child will do is go tell someone,” said Wiener. “They’ll feel resentful if they have no one to talk to. Parents need to find others in the community for the child to talk to. If there isn’t anyone nearby and the child wants to tell his or her best friend, I would tell them to talk with me, the parent, first. I would explain that not everyone is as educated as we are, and it’s important that we make a plan and educate the friend about this infection first. After all, we don’t want anyone to treat us badly.”

Give child a journal or diary or a way to express their feelings about the infection.  

Encourage the child to use art or writing to express feelings. “If HIV had a face, what would it look like? Or start a discussion with, ‘If I had a million dollars, I would get rid of this virus. What would you do with a million dollars?’ Keep those discussions going,” Wiener suggested.

“It is usually not until days or weeks after disclosure that the child has the courage to ask more questions,” she added. However, after finally making the disclosure, some parents feel so relieved and so exhausted from the ordeal that they may not have the emotional energy to talk about it again. This blocks open communication at a time when sharing concerns about the disease and its impact on the family is most important.

Red flags to look for in a child following disclosure.  

These include difficulty sleeping, changes in appetite, withdrawal, ticks, new fears, mood changes, difficulty concentrating or hoarding things.

If you see any such problems, talk to your child and if necessary, seek help from a social worker or psychotherapist. Remember, disclosure is not a one-time event and a child needs constant reassurance that they did not cause the disease.

Don’t forget siblings in the disclosure process.

Whether or not a sibling is told depends on age, said Wiener. “If the sibling is close in age, I don’t make it a choice, the sibling must be told. But, I do give them a choice of whether the infected child tells the sibling or if the parents tell the sibling. You need to give the child a sense of control. Living with secrets in the home does not promote a healthy emotional climate. I try to minimize the amount of secrets or lying that’s going on. However, if there’s a medical procedure or if they’re on interferon which makes them grouchy, it’s important that siblings know why.”

Even after disclosure is made, the full reality of the diagnosis may not come about for years. “It may not be until someone dies, or they get sick for the first time or they can’t go to a party and drink like everyone else that the reality really sinks in,” said Wiener. “At that point, it becomes an emotional reality, not just an intellectual reality.”

Wiener finds most parents do feel relief after making disclosure. The burden of secrecy is lifted, and children who already intuitively know something is wrong often feel better after they are told of their diagnosis. Siblings, especially if they are older, are also relieved when the veil of secrecy is lifted.

“The demands of keeping the family secret is a heavy burden for a young sibling and may threaten healthy development,” Wiener wrote in a study of siblings of HIV-infected children. “As inquisitive peers begin asking siblings why their brother or sister is sick, it becomes increasingly difficult not to tell the secret. One 9-year-old girl describes: ‘I want to tell people. Right when I almost say it, I remember in my head I’m not allowed to.’”

Resentment of the special treatment given to the sick sibling may cause the healthy sibling to feel less loved, Wiener explained, particularly if no explanation for the preferential treatment is provided.

Heidi Haiken, who has worked with more than 400 HIV-infected kids, has found disclosure to be beneficial to parents and kids alike. “By and large, the kids do well and are glad they’ve been told,” she said.

But disclosure is just a step in the journey. Parents must be prepared to ask, probe and continue the dialogue about health safety, standard precautions, medical treatments, good nutrition and the fundamentals of safer sex with their infected children.

“In our program, we start teaching safer sex at age 10 to 13,” said Haiken. “We give out condoms, talk about masturbation and how to keep yourself and your partner safe. We don’t deny they’re sexual beings, we focus on how to be safe with it, how drugs and alcohol can make you do things that aren’t safe.”

That safer sex discussion is just one more elaboration on the discussion that began when parents tell their infected toddlers never to touch anyone’s “boo-boos.”

Most parents of infected children and teens don’t have a Heidi Haiken or Lori Wiener in their hometowns. And, they can’t count on local schools to teach standard precautions or to delve into the nitty gritty of safer sex procedures. Most parents must be open and honest as they continue these discussions, no matter how painful or awkward, throughout their children’s lives.

By PKIDs staff





Annie’s Dad

17 10 2011

(This testimony was given on behalf of PKIDs to a U.S. House of Representatives’ committee a few years ago. It is so compelling—and, unfortunately, still relevant—that we wanted to share it with you now.)

My name is Dr. Keith Van Zandt, and as a practicing family physician, I appreciate the opportunity to address this committee regarding hepatitis B vaccines. I have degrees from Princeton and Wake Forest Universities, and completed residency training in family medicine here in Washington at Andrews AFB.

Today, however, I am here as a dad. I have five children, two of whom my wife Dede and I adopted from Romania. Our youngest, Adrianna, was nearly four years old when we adopted her from the orphanage, and was found to have chronic active hepatitis B when we performed blood work prior to bringing her home.

She had contracted this from her mother, who died when Annie was nine months old, from the effects of her liver disease as well as tuberculosis. We have been very fortunate to have had some excellent medical care for Annie, but her first year with us was an endless procession of liver biopsies, blood draws and over 150 painful interferon injections I gave to my new daughter at home. Interferon is a form of chemotherapy for hepatitis B that has many side effects and only a 25 to 40% success rate.

We know first-hand the pain and family disruption this completely preventable disease can bring.

You have already heard testimony from some of the world’s leading experts on hepatitis B and its vaccine, and I can add little new information to that. As a family doctor, though, I see patients every day whose lives have been significantly improved by the immunizations we now have available. My forebears in family medicine struggled in the pre-vaccination era with the ravages of horrible diseases that are now of only historical interest.

Preventive immunizations have so changed our world that I am afraid that we no longer remember how horrible some of these diseases were. My family and I have made multiple trips to Romania to work in the orphanages, and unfortunately I have seen the effects of many of these diseases there.

I am certainly aware of the potential for adverse reactions to our current vaccines, but we must maintain the perspective that these reactions are extremely rare. My partners and I in Winston-Salem care for over 40,000 patients, and I can honestly say that in over 20 years of practice we have never seen a serious adverse reaction to any vaccine. I believe that the vast majority of family physicians around the country can say the same. Certainly, I do not wish to minimize the suffering and losses of families who have experienced these problems, but we must remember that immunizations remain the most powerful and cost-effective means of preventing disease in the modern era.

Personally, it still sickens me to know that the disease my daughter has was completely preventable if hepatitis B vaccines had been available to Annie and her mother.

Whereas 90% of adults who contract hepatitis B get better, 90% of children under the age of one go on to have chronic disease, and 15 to 20% of them die prematurely of cirrhosis or liver cancer.

I know first-hand the gut-wrenching feeling of being told your child has a chronic disease that could shorter their life. I know first-hand the worry parents feel when their hepatitis B child falls on the playground, and you don’t know if her bleeding knee or bloody nose will infect her playmates or teachers. I know first-hand the concern for my other children’s health, with a 1 in 20 chance of household spread of hepatitis, and the thankfulness I feel that they have had the availability of successful vaccines. I know first-hand the pain a parent feels for their child as they undergo painful shots and procedures for their chronic disease with no guarantee of cure.

I am not the world’s leading expert on hepatitis B or the hep B vaccine, but I am an expert on delivering the best medical care I can to my patients in Winston-Salem, NC. I am also not the world’s leading expert on parenting children with chronic diseases, but I am the world’s best expert on parenting my five children.

I know professionally that immunizations in general have hugely improved the lives of those patients who have entrusted their medical care to me. I know personally that had the hepatitis B vaccine been available to my daughter, her life and mine would have been drastically different. I am also thankful that my other children have been spared Annie’s suffering by being successfully vaccinated.

Anecdotes of vaccine reactions are very moving, but they are no substitute for good science. Please allow me to continue to provide the best medical care I can with the best system of vaccinations in the world, and allow me to keep my own family safe.

Thank you very much for your time.

Keith Van Zandt, M.D.





HB FOUNDATION!

25 10 2010

We love the Hepatitis B Foundation and all the folks connected to the organization.  Here’s why: The Hepatitis B Foundation (HBF) has been working for years to find a cure for those infected with HBV and to improve their quality of life. 

To help reach their goals, Joan and Tim Block and their partners at HBF established the Institute for Hepatitis and Virus Research a few years ago. It’s a stunning achievement that continues to give hope to all families affected by HBV. 

The website provides many resources, such as an up-to-date listing of hepatitis B drugs, making it easy for parents and professionals to see what’s been approved by the FDA and what’s happening in clinical trials.

And, a few years ago, HBF received funding from the National Library of Medicine to provide a tutorial on searching for information on the Internet.  It’s a painless way to get an introduction to Medline, PubMed and other sites. Every parent we know wants to find out as much as possible about the virus that’s infected their child.

HBF holds three one-day patient workshops every year, each in a different city.  Workshop goals include increasing liver cancer screenings, informing patients about treatment options, and providing support to those affected by hepatitis b.

The foundation provides copious amounts of information on hepatitis B in English, as well as helpful “chapters” in other languages. 

If you or someone in your life is affected by hepatitis B, you should bookmark this website.  It might come in handy one day.