World Hepatitis Summit 2015

9 09 2015

Imagine that you have a unicycle, and this unicycle is your favorite mode of transportation.

You have a handful of friends around the country who also own and ride unicycles, but where you live, you’re the only one-wheeler to be seen.

Now imagine you go to a meeting in a far off land that brings hundreds of people from 80+ countries together to discuss—unicycles.

It’s comforting and uplifting to be among your tribe, isn’t it!

That’s what happened to me when I attended the World Hepatitis Summit in Glasgow, Scotland, last week.

Granted, I’m always talking to parents about hepatitis. Many of our families have children living with a chronic, viral hepatitis infection. Some parents have lost their child to such an infection. Treatment, treatment side effects, prevention, testing—these are all frequent topics at PKIDs.

But, to be with so many people representing organizations around the world hard at work on issues surrounding hepatitis, well, that’s why it felt like a homecoming.

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Our hosts, the World Hepatitis Alliance (WHA) and the World Health Organization (WHO), did a bang-up job on this first summit. They and their partners, the Glasgow Caledonian University, Health Protection Scotland, and the Scottish government, made us feel welcome and provided a well-run meeting.

For five days, volunteers were everywhere, eager to help and always smiling. Seriously, they smiled the entire time. And word has it, most of them were out of bed by three o’clock each morning so they could be in place, ready to serve when we arrived.

Let me just say, there’s only one cranky person in all of Glasgow. He drives a white cab and hangs out at the SECC in front of the river Clyde. Every other Glaswegian treats you like a favorite cousin come to visit for a spell.

And the WHA members! A nurse from Wales and a physician from Egypt talked collaboration over lunch on Thursday, an attendee from Botswana gave funding tips to a few Americans as they all lounged around waiting for a passageway door to be unlocked, and the man from Pakistan impressed everyone with his sparkly evening attire at the Kelvingrove Art Gallery and Museum dinner.

Three vignettes from the thousands of interactions that happened at the World Hepatitis Summit this year. All of the members were eager and ready to band together in the fight against hepatitis.

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So what did we accomplish at this week-long event? We found out we’re not alone—that we’re actually part of a strong global network fighting to reduce and, one day, eliminate hepatitis B and C infections.

We found our voice, and by closing our many fists into one, we found that we are mighty.

Join WHA. You’re not alone!

 

by Trish Parnell





Hepatitis A, B, C, D, and E

28 07 2015

It’s World Hepatitis Day.

We want to use this day to remind moms and dads that hepatitis is around and some of it can be prevented by vaccination.

Hepatitis C is a bloodborne virus that attacks the liver. It is not vaccine-preventable. If babies are infected it’s usually from their hepatitis C+ mothers or, and this is unlikely these days, from a blood transfusion. It’s unlikely because the screening process of donated blood is pretty darn thorough. But, germs have slipped through that screening process.

Teens and young adults may become infected, primarily through sharing of needles, sex with an HCV+ person, or sharing personal items such as razors or toothbrushes that may be contaminated with HCV.

There are effective treatments that work on a good portion of hepatitis C-infected children. But not on all infected children. Work is ongoing in this area.

Hepatitis C is frequently a chronic infection, meaning that if treatment is not effective, you will be infected for your lifetime.

Hepatitis A is vaccine-preventable. Normally, it’s passed person-to-person through the fecal-oral route, which is when something you eat or drink has been contaminated with hepatitis A+ poop. If you haven’t been vaccinated, chances are you will become infected.

This virus makes you feel lousy and can, rarely, do serious damage to the body. It does not become a chronic infection. It infects you and then goes away, like a cold virus.

Hepatitis B is vaccine-preventable. It’s transmitted in a lot of ways—mom to newborn, sharing needles or personal items, sex with an infected person, even household (nonsexual) contact. If a mom is aware of her infection prior to giving birth, shots can be given to the baby within 12 hours of birth that are effective at stopping tranmission of the virus from mom to baby. However, when babies are infected, almost half of them in the US will become chronically infected. In developing countries, that figure shoots up to 90 percent.

Today, despite the vaccine, approximately 1,000 babies become chronically infected with hepatitis B each year in the US. Many of the moms-to-be who are infected are unaware of their infection. Every pregnant woman should be tested for hepatitis B so that action can be taken at birth to prevent infection of the newborn.

Hepatitis D is an odd virus. You have to be infected with hepatitis B before you can get hepatitis D. It’s vaccine-preventable in that, if you get immunized against hepatitis B, you won’t be able to get hepatitis D.

Hepatitis E is similar to hepatitis A in the way it is transmitted—the fecal-oral route. It’s rarely a chronic infection. For most people, they get it, get sick, and get over it. It can however be dangerous for pregnant women, with a 10% – 30% fatality rate for this group. It’s not often found in the US but can be easily picked up in some other parts of the world.

That’s about it for hepatitis in the US. To prevent a hepatitis infection (and lots of other infections), wash your hands throughout the day, put barriers between yourself and another person’s blood or body fluid, and use the available vaccines. The trick is to do these things with everyone. It’s impossible to tell who is infected with what, most of the time, so the safest course of action is to assume everyone is infected with something and then act accordingly.

Got any tips? Hope you share them will us in the comments.

By Trish Parnell

Image courtesy of Johns Hopkins





A Thoughtful Choice

17 04 2014

I remember lining up at school in the ‘60s to get vaccinated against smallpox and a few other diseases for which there were vaccines.

I also remember the years when my brothers and I took turns at getting measles, mumps and other diseases for which there were no vaccines.

In the end, we three were fortunate—no permanent harm from our maladies.

Fast-forward 30 years. My daughter was four months old when she was diagnosed with hepatitis B. She had not been vaccinated and subsequently developed a chronic infection.

It all sounds mundane when read as words on a screen. But in those early years, the heartache and anger I felt at having my daughter’s life so affected by something that was preventable . . . well, it was almost more than I could bear.

But again, we were fortunate. After years of infection, her body turned around and got control of the disease. Although we have bloodwork done every year to keep an eye on things, she has a good chance of living the rest of her life free of complications from this infection.

Over the years, I’ve met other parents whose children were affected by vaccine-preventable diseases. Some, like Kelly and Shannon, chose not to vaccinate their kids and ended up with horrible consequences. Kelly’s son Matthew was hospitalized for Hib and they came within a breath of losing him. Shannon did lose her daughter Abigale to pneumococcal disease, and almost lost her son. He recovered and was released from the hospital, at which time they had a funeral for their daughter.

Because of my job, I talk to and hear from many families with similar stories. Some children have died, some remain permanently affected, and some have managed to recover.

Also because of my job, I hear from parents who believe vaccines are not safe, and that natural infections are the safer choice. I understand and have experienced the emotions we as parents feel when something happens to our children. In a way, I was lucky. I knew exactly what caused my daughter’s problems. A simple test provided a definite diagnosis.

If we can’t identify the cause of our children’s pain or suffering, we feel like we can’t fix it and we can’t rest until we know the truth. When the cause can’t be found, we latch onto if onlys. What could we have done differently to keep our kids safe? If only we hadn’t taken her to grandpa’s when she didn’t feel good. If only we hadn’t vaccinated him on that particular day. If only. The problem is, the if onlys are guesses and no more reliable routes to the facts than playing Eenie Meenie Miney Mo.

The deeper I go into the world of infections and disease prevention, the more obvious it is to me that the only way to find the facts is to follow the science. Now granted, one study will pop up that refutes another, but I’ve learned that when multiple, replicable studies all reach the same conclusion, then I can safely say I’ve found the facts.

In our family, we vaccinate because for us, it is the thoughtful choice.

By Trish Parnell

Originally posted on Parents Who Protect





Sports and Infectious Diseases – Part 2 of 3

10 04 2013

bloodborneWhat risk does an athlete with a bloodborne pathogen pose?

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.  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: The risk of HIV infection via skin or mucous membrane exposure to blood or other infectious bodily fluids during sports participation is very low . . . such transmission appears to require, in addition to a portal of entry, prolonged exposure to large quantities of blood.  Transmission through intact skin has not been documented: no HIV infections occurred after 2,712 such exposures in 1 large prospective study.  Transmission of HIV in sports has not been documented.  One unsubstantiated report describes possible transmission during a collision between professional soccer players.

Hepatitis B: HBV [hepatitis B virus] is more easily transmitted via exposure to infected blood than is HIV . . . the risk of infection [is] greater if the blood [is] positive for HBV e antigen . . . transmission of infection by contamination of mucous membranes or broken skin with infected blood has been documented, but the magnitude of risk has not been quantified.

Although transmission of HBV is apparently rare in sports, 2 reports document such transmission.  An asymptomatic high school sumo wrestler who had a chronic infection transmitted HBV to other members of his team.  An epidemic of HBV infection occurred through unknown means among Swedish athletes participating in track finding (orienteering).  The epidemiologists concluded that the most likely route of infection was the use of water contaminated with infected blood to clean wounds caused by branches and thorns.

An effective way of preventing HBV transmission in the athletic setting is through immunization of athletes.  The American Academy of Pediatrics (AAP) recommends that all children and adolescents be immunized.  Clinicians and the staff of athletic programs should aggressively promote immunization.

Hepatitis C: Although the transmission risks of HCV infection are not completely understood, the risk of infection from percutaneous [through the skin] exposure to infected blood is estimated to be 10 times greater than that of HIV but lower than that of HBV.  Transmission via contamination of mucous membranes or broken skin also probably has a risk intermediate between that for blood infected with HIV and HBV.

“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 students should have access to any sport, except boxing, which the Academy opposes for all youths because of its physical risks.

“I personally feel parents have no obligation to disclose the infectious status of their children to anyone,” said Dr. Anderson.  Strict compliance with standard precautions is critical for this open-embrace of all athletes, regardless of their infectious status.  Coaches and teachers must have a plan in place to handle blood spills, said Dr. Anderson, including latex [or non-permeable] gloves, occlusive dressings, appropriate sterilizing solutions, disposal bags and even a printed protocol for coaches, athletes and officials.

The following is an excerpt of a sample school policy, used by numerous public school districts and in compliance with ADA that addresses HIV infection:

“The privilege of participating in physical education classes, programs, competitive sports and recess is not conditional on a person’s HIV status.  School authorities will make reasonable accommodations to allow students living with HIV infection to participate in school-sponsored physical activities.

“All employees must consistently adhere to infection control guidelines in locker rooms and all play and athletic settings.  Rulebooks will reflect these guidelines.  First aid kits and standard precautions equipment must be on hand at every athletic event.

“All physical education teachers and athletic program staff will complete an approved first aid and injury prevention course that includes implementation of infection control guidelines.  Student orientation about safety on the playing field will include guidelines for avoiding HIV infection.”

In addition to the Academy, several sports and other health organizations have also weighed in on this issue.  According to the NCAA, National Football League (NFL) and World Health Organization, athletes with HIV should be permitted to participate in all competitive sports at all levels.

These organizations all endorse immunization against hepatitis B for all athletes.

The National Athletic Trainers’ Association (NATA) echoes Dr. Anderson’s suggestion that coaches, trainers, athletic directors, school officials and others take the lead in educating themselves, their teams, parents and their communities about the importance of effective disease prevention.

Trainers and coaches, they suggest, should provide the following information in age-appropriate terms to all participants before or during any competition :

  • The risk of transmission or infection during competition.
  • The risk of transmission or infection generally.
  • The availability of HIV testing (for teens and adults).
  • The availability of hepatitis B vaccination and testing (for parents, teens and adults).

“Athletic trainers who have educational program responsibility should extend educational efforts to include those, such as the athletes’ families and communities, who are directly or indirectly affected by the presence of bloodborne pathogens in athletic competitions,” the NATA stated in a position paper.

See PKIDs’ Infectious Disease Workshop for more information.

Photo courtesy of Lolie Smith





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





Why Vaccinate? I Never Get Sick!

5 11 2012

No matter your age, if you’re sitting in a moving vehicle you’re required to wear a seatbelt or to be in a size-appropriate car seat.

Most states require that anyone riding a bicycle or a motorcycle wear a helmet. And again, it doesn’t matter what age you are.

Kids going to public schools are required to be immunized against several diseases for school entry. How many immunizations they’re required to get depends on the state they live in, and the school they attend.

I suppose I could think up a few public health scenarios that would require adults to be immunized against a particular disease. But as a rule, unless our jobs require it, we adults are exempt from this particular requirement.

There are lots of protections in place for kids, as there should be. For instance, if I don’t feed my daughters, or provide adequate shelter for them, they’ll be taken away from me and placed in a foster home, where they’ll get the care they need. We need that oversight in place, so that no kids fall through the cracks. The heartbreak is that there are still kids falling through the cracks, but we do know that the oversights in place keep that number from being astronomical.

Most adults don’t need that kind of micromanagement when it comes to their health. But, they do need information. Before I became involved with PKIDs, I wasn’t even aware that there were vaccines for adults, other than the flu vaccine.

Now I know.

I don’t have time to get sick. I get vaccinated for me. I also wash my hands, try to get enough sleep, make myself eat green vegetables, and generally do whatever I need to do to keep myself healthy. But because I’ve met and talked with so many families affected by preventable diseases and I know how awful those infections can be, one of my motivations for getting vaccinated is so that I don’t accidentally infect someone else.

For example, it’s the infected adults and teens around babies who infect them with whooping cough, and it’s the infected birth moms who infect their newborns with hepatitis B. Babies infected with whooping cough can end up hospitalized, or worse. And babies infected with hepatitis B usually stay infected for life. This can lead to liver cancer or transplantation—if they’re lucky.

If you’re one of those people who never gets sick and figures you don’t need to be vaccinated—well, who knows, you might be right. But not getting sick is not the same as not being infected. You can and do pass on those germs to little babies who haven’t gotten all of their vaccinations yet, and others whose immune systems are not robust, for one reason or another.

So, you know where I’m going with this. Take just a few minutes the next time you’re at the pharmacy or your doctor’s office and ask what vaccinations you need. Do it for you, but also do it for the vulnerable in your life.

By Trish Parnell





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