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.

wha 1

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.

wha 2

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





EV-D68

7 10 2014

We were writing an update on EV-D68 when this email arrived from CDC. We think the points are important for parents to know, so we’re going to share this with you and will provide future updates as warranted.

As parents, we’re all concerned about this virus which isn’t really new, but has captured the nation’s attention. If you have questions, please ask them in the comments and we’ll get answers for you.

[This information is current as of 23 October, 2014 and has been slightly edited for length (believe it or not). The bold text includes the latest updates]:

The United States is currently experiencing a nationwide outbreak of enterovirus D68 (EV-D68) associated with severe respiratory illness.

From mid-August to October 23, 2014, CDC or state public health laboratories have confirmed a total of 973* people in 47 states and the District of Columbia with respiratory illness caused by EV-D68.** This indicates that at least one case has been detected in each of those states but does not indicate how widespread infections are in each state.

In the United States, people are more likely to get infected with enteroviruses in the summer and fall. We are currently in the middle of the enterovirus season. EV-D68 infections are likely to decline later in fall.

For the week of October 8-12, 34 states reported to CDC that EV-D68-like illness activity is low or declining; 8 still have elevated activity, and only 1 has increasing activity.

Many state health departments are currently investigating reported increases in cases of severe respiratory illness in children. This increase could be caused by many different viruses that are common during this time of year. EV-D68 appears to be the predominant type of enterovirus this year and is likely contributing to the increases in severe respiratory illnesses.

Due to increasing knowledge about the nationwide EV-D68 outbreak, there has been a very large increase in the number of specimens tested from patients with severe respiratory illness. Awareness of these initial results is also contributing to increased recognition of new cases.

CDC is prioritizing testing of specimens from children with severe respiratory illness. There are likely many children affected with milder forms of illness.

Of the more than 1,700 specimens tested by the CDC lab, about half have tested positive for EV-D68. About one third have tested positive for an enterovirus or rhinovirus other than EV-D68. Almost all of the CDC-confirmed cases this year of EV-D68 infection have been among children. Many of the children had asthma or a history of wheezing.

CDC has developed, and started using on October 14, a new, faster lab test for detecting EV-D68, allowing CDC to rapidly process in about seven to 10 days the more than 1,000 remaining specimens received since mid-September. As a result, the number of confirmed EV-D68 cases will likely increase substantially in the coming days. These increases will not reflect changes in real time or mean the situation is getting worse.

As a result, confirmed cases increased today and will likely continue to increase in coming days. This does not mean the situation is getting worse.

Faster testing will help to better show the trends of this outbreak since August and to monitor changes occurring in real time.

EV-D68 has been detected in specimens from eight*** patients who died and had samples submitted for testing.

CDC is reporting the test results to state health departments as we obtain them. State and local officials have the authority to determine the cause of death, the appropriate information to release, and the time to release it. CDC will defer to states to provide this information.

So far, state and local officials have reported that two of these deaths were caused by EV-D68.

CDC will post updated data to the website every Thursday.

CDC understands that Americans may be concerned about these severe respiratory illnesses and the new reports of neurological illness. Severe illness is always a concern to us, especially when infants and children are affected. We will share information as soon as we have it, and post updates on our website (http://www.cdc.gov/non-polio-enterovirus/outbreaks/EV-D68-outbreaks.html).

Clinicians should consider EV-D68 as a possible cause of severe respiratory illness, particularly in children, and report unusual increases in the number of patients with severe respiratory illness to their health department.

The general public can help protect themselves from respiratory illnesses by washing hands with soap and water, avoiding close contact with sick people, and disinfecting frequently touched surfaces. Anyone with respiratory illness should contact their doctor if they are having difficulty breathing, or if their symptoms are getting worse.

*Total confirmed case count includes results from State Public Health Laboratories that can do testing to determine type of enterovirus.
**The primary reason for current increases in cases is that a backlog of specimens is being processed from several states that are investigating clusters of people with severe respiratory illness. It can take a while to test specimens and obtain lab results because the testing is complex and slow, and can only be done by CDC and a small number of state public health laboratories. These increases will not necessarily reflect changes in real time, or mean that the situation is getting worse.
***Investigations are ongoing; CDC will review and update available data every Wednesday.

 

BACKGROUND

Enteroviruses are very common viruses; there are more than 100 types.

It is estimated that 10 to 15 million enterovirus infections occur in the United States each year. Tens of thousands of people are hospitalized each year for illnesses caused by enteroviruses.

Different enteroviruses can cause different illnesses, such as respiratory, febrile rash, and neurologic [e.g., aseptic meningitis (swelling of the tissue covering the brain and spinal cord) and encephalitis (swelling of the brain)].

In general, the spread of enteroviruses is often quite unpredictable. A mix of enteroviruses circulates every year, and different types of enteroviruses can be common in different years.

In the United States, people are more likely to get infected with enteroviruses in the summer and fall.

 

Enterovirus D68

EV-D68 was first recognized in California in 1962. Small numbers of EV-D68 have been reported regularly to CDC since 1987. However, this year the number of people with confirmed EV-D68 infections is much greater than that reported in previous years.

The strains of EV-D68 circulating this year are not new.

CDC, working with state health departments, has identified at least three separate strains of EV-D68 that are causing infections in the United States this year; the most prominent strain is related to the strains of EV-D68 that were detected in the United States in 2012 and 2013.

There is no evidence that unaccompanied children brought EV-D68 to the United States; we are not aware of any of these children testing positive for the virus.

It is common for multiple strains of the same enterovirus type to be co-circulating in the same year.

Respiratory illnesses can be caused by many different viruses and have similar symptoms. Not all respiratory illnesses occurring now are due to EV-D68.

EV-D68 has been previously referred to as human enterovirus 68 (or HEV-68) and human rhinovirus 87 (or HRV-87). They are all the same virus. The D stands for enterovirus species D.

 

SYMPTOMS

EV-D68 infections can cause mild to severe respiratory illness, or no symptoms at all.

Mild symptoms may include fever, runny nose, sneezing, cough, and body and muscle aches.

Severe symptoms may include wheezing and difficulty breathing.
Anyone with respiratory illness should contact their doctor if they are having difficulty breathing, or if their symptoms are getting worse.

Enteroviruses are known to be one of the causes of acute neurologic disease in children. They most commonly cause aseptic meningitis, less commonly encephalitis, and rarely, acute myelitis and paralysis.

CDC is aware of two published reports of children with neurologic illnesses confirmed as EV-D68 infection from cerebrospinal fluid (CSF) testing.

 

PEOPLE AT RISK

In general, infants, children, and teenagers are most likely to get infected with enteroviruses and become sick. That’s because they do not yet have immunity (protection) from previous exposures to these viruses. We believe this is also true for EV-D68. Adults can get infected with enteroviruses, but they are more likely to have no symptoms or mild symptoms.

Children with asthma may have a higher risk for severe respiratory illness caused by EV-D68 infection.

 

TRANSMISSION

Since EV-D68 causes respiratory illness, the virus can be found in an infected person’s respiratory secretions, such as saliva, nasal mucus, or sputum.

The virus likely spreads from person to person when an infected person coughs, sneezes, or touches a surface that is then touched by others.

Diagnosis

EV-D68 can only be diagnosed by doing specific lab tests on specimens from a person’s nose and throat.

Many hospitals and some doctor’s offices can test sick patients to see if they have enterovirus infection. However, most cannot do specific testing to determine the type of enterovirus, like EV-D68. CDC and some state health departments can do this sort of testing.

CDC recommends that clinicians only consider EV-D68 testing for patients with severe respiratory illness and when the cause is unclear.

 

TREATMENT

There is no specific treatment for people with respiratory illness caused by EV-D68 infection.

For mild respiratory illness, you can help relieve symptoms by taking over-the-counter medications for pain and fever. Aspirin should not be given to children.

Some people with severe respiratory illness caused by EV-D68 may need to be hospitalized and receive intensive supportive therapy.

There are no antiviral medications are currently available for people who become infected with EV-D68.

 

PREVENTION

You can help protect yourself from getting and spreading EV-D68 by following these steps:

  • Wash hands often with soap and water for 20 seconds
  • Avoid touching eyes, nose and mouth with unwashed hands
  • Avoid close contact such as kissing, hugging, and sharing cups or eating utensils with people who are sick, or when you are sick
  • Cover your coughs and sneezes with a tissue or shirt sleeve, not your hands
  • Clean and disinfect frequently touched surfaces, such as toys and doorknobs, especially if someone is sick
  • Stay home when you are sick
  • There are no vaccines for preventing EV-D68 infections.

Children with asthma are at risk for severe symptoms from EV-D68 and other respiratory illnesses. They should follow CDC’s guidance to maintain control of their illness during this time:

  • Discuss and update your asthma action plan with your primary care provider.
  • Take your prescribed asthma medications as directed, especially long term control medication(s).
  • Be sure to keep your reliever medication with you.
  • Get a flu vaccine when available.
  • If you develop new or worsening asthma symptoms, follow the steps of your asthma action plan. If your symptoms do not go away, call your doctor right away.
  • Parents should make sure the child’s caregiver and/or teacher is aware of his/her condition, and that they know how to help if the child experiences any symptoms related to asthma.

 

WHAT IS CDC DOING

CDC continues to collect information from states and assess the situation to better understand  EV-D68 and the illness caused by this virus and how widespread EV-D68 infections may be within states and the populations affected.

CDC is helping states with diagnostic and molecular typing for EV-D68.

We are working with state and local health departments and clinical and state laboratories to enhance their capacity to identify and investigate outbreaks, and perform diagnostic and molecular typing tests to improve detection of enteroviruses and enhance surveillance.

CDC has developed, and started using on October 14, a new, faster lab test for detecting EV-D68 in specimens from people in the United States with respiratory illness. CDC will provide protocols to state public health labs and explore options for providing test kits.

CDC’s new lab test is a “real-time” reverse transcription polymerase chain reaction, or rRT-PCR, and it identifies all strains of EV-D68 that we have been seeing this summer and fall. The new test has fewer and shorter steps than the test that CDC and some states were using previously during this EV-D68 outbreak. This will allow CDC to test and report results for new specimens within a few days of receiving them.

The previous test, which CDC used for about nine years,  is very sensitive and can be used to detect and identify almost all enteroviruses; however, it requires multiple, labor-intensive processing steps and cannot be easily scaled up to support testing of large numbers of specimens in real time that is needed for the current EV-D68 outbreak.

We are providing information to healthcare professionals, policymakers, general public, and partners in numerous formats, including Morbidity and Mortality Weekly Reports (MMWRs), health alerts, websites, social media, podcasts, infographics, and presentations.

CDC has obtained one complete genomic sequence and six partial genomic sequences from viruses, representing the three known strains of EV-D68 that are causing infection at this time.

Comparison of these sequences to sequences from previous years shows they are genetically related to strains of EV-D68 that were detected in previous years in the United States, Europe, and Asia.

CDC has submitted the sequences to GenBank to make them available to the scientific community for further testing and analysis.

 

GUIDANCE FOR CLINICIANS

Clinicians should:

  • consider EV-D68 as a possible cause of acute, unexplained severe respiratory illness, even if the patient does not have fever.
  • report suspected clusters of severe respiratory illness to local and state health departments. EV-D68 is not nationally notifiable, but state and local health departments may have additional guidance on reporting.
  • consider laboratory testing of respiratory specimens for enteroviruses when the cause of respiratory illness in severely ill patients is unclear.
  • consider testing to confirm the presence of EV-D68. State health departments can be approached for diagnostic and molecular typing for enteroviruses.
  • contact your state or local health department before sending specimens for diagnostic and molecular typing.
  • follow standard, contact, and droplet infection control measures

The antiviral drugs pleconaril, pocapavir, and vapendavir, have significant activity against a wide range of enteroviruses and rhinoviruses. CDC has tested these drugs for activity against currently circulating strains of enterovirus D68 (EV-D68), and none of them has activity against EV-D68 at clinically relevant concentrations.

 

SURVEILLANCE

U.S. healthcare professionals are not required to report known or suspected cases of EV-D68 infection to health departments because it is not a nationally notifiable disease in the United States. Also, CDC does not have a surveillance system that specifically collects information on EV-D68 infections.

No data is currently available regarding the overall burden of morbidity or mortality from EV-D68 in the United States. Any data CDC receives about EV-D68 infections or outbreaks are voluntarily provided by labs to CDC’s National Enterovirus Surveillance System (NESS). NESS collects limited data, focusing on circulating types of enteroviruses and parechoviruses.

For a large image and details of EV-D68-like illness activity in states, see http://www.cdc.gov/non-polio-enterovirus/outbreaks/EV-D68-activity.html.

MORE INFORMATION

CDC Enterovirus D68 in the United States, 2014 website: http://www.cdc.gov/non-polio-enterovirus/outbreaks/EV-D68-outbreaks.html

CDC Enterovirus D68 general website: http://www.cdc.gov/non-polio-enterovirus/about/EV-D68.html

CDC Enterovirus D68 for Health Care Professionals website: http://www.cdc.gov/non-polio-enterovirus/hcp/EV-D68-hcp.html

CDC Activity of Enterovirus D68-like Illness in States website: http://www.cdc.gov/non-polio-enterovirus/outbreaks/EV-D68-activity.html  

CDC What Parents Need to Know about Enterovirus D68 webpage: http://www.cdc.gov/features/evd68/

Enterovirus D68 in the United States: Epidemiology, Diagnosis & Treatment, COCA Call, September 16, 2014 (http://www.bt.cdc.gov/coca/calls/2014/callinfo_091614.asp)

Severe Respiratory Illness Associated with Enterovirus D68 – Multiple States, 2014, Health Alert Network, September 12, 2014 (http://emergency.cdc.gov/han/han00369.asp)

Severe Respiratory Illness Associated with Enterovirus D68 – Missouri and Illinois, 2014, MMWR, September 8, 2014 (http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6336a4.htm?s_cid=mm6336a4_w)

Clusters of Acute Respiratory Illness Associated with Human Enterovirus 68 — Asia, Europe, and United States, 2008–2010, MMWR, September 30, 2011 (http://www.cdc.gov/mmwR/preview/mmwrhtml/mm6038a1.htm)





Ryan is Hepatitis C+

14 03 2011

(Guest post from Nora, Ryan’s mom.)

courtesy sugar daze

As a little girl, I dreamed of being a wife and mother with a home filled with children. 

When I realized that “prince charming” wasn’t showing, I knew I could still be a mom.  When I set out on the journey alone, I thought it would take forever, however I was a lucky one.  I signed with an adoption agency in June of 2002, and my son was born in August 2002. 

When the agency told me they had a birthmother looking for a single mom, I questioned why? In speaking to the birthmom she said “she had grown up in a household where her parents fought a lot, so her thought was if there was one parent she was ok with that.”  Anyway, it worked out great for me. 

 The agency told me the mother was a drug user and had hepatitis B and C.  I thought “OK so what does that mean?”

I was able to get the birthmom’s medical records as well as my son’s records, once he was born, and have then reviewed.  At birth, my son’s blood was non-reactive to hepatitis C and of course he was given the vaccine for hepatitis B.  OK, non-reactive that’s good right?  Well it really doesn’t mean anything except that the virus is not active as of right now, and we would have to wait until he was 15 months old to run further blood work. 

 When I was asked if I still wanted to adopt him, I thought they were crazy, well of course.  He was my son, it was meant for me to be his mom and my blessing from above.  We plugged along with him over the first year having some issues, having to be withdrawn from the drugs he was born addicted to, having a bout of meningitis, bladder infections, a lot of virus issues etc.  Then the dreaded 15 month time frame was here. 

Ok we went and had the blood work and I just knew in my heart that since I had been told that there was less than a 1% chance that he would have hepatitis C that we would be doing this just to get the all clear.  I remember it was right before Thanksgiving and I was going into the mall to shop when my cell phone rang.  It was Ryan’s pediatrician who was a friend that I had worked with over the years.  I couldn’t believe what I was hearing, his blood work was positive for hepatitis C.  What, say that again?  You have to be wrong, right? 

No, he wasn’t wrong.  He told me to enjoy the holiday and he would see me right after.  Enjoy the holiday, are you kidding me, how would I ever enjoy anything again? 

You see for me the first 15 months of my son’s life was spent dealing with the other issues, and not ever really thinking that we would have to deal with HCV.  I didn’t really know a lot about it and my first thought was “Oh my God, I am going to have to watch my child suffer.” 

Well over the next week I began researching and reading everything I could on hepatitis.  By the time Ryan got in to see the GI specialist, I knew we had to run a genotype screening and viral load blood work.  I was in an attack mode and wanted my baby fixed.  Well I wish it was that easy.  The GI physician here at our local Childrens’ Hospital told me that there was not much info on children dealing with this disease and he would follow Ryan with blood work and ultrasounds every six months, and at age 3 we would treat him. 

WHAT, I wanted something done now.  Of course I realized in my mind that that was not the protocol and that I had to trust the doctors.  That was hard for me, I wanted to be in control over what happened with my son, not this horrible disease that could be eating away at his liver.  How would I allow it to go on for another 2 years before we did anything?  Of course, now I realize the harshness of the treatment, but at that time I just wanted it not to be true.  I prayed that I would be strong for my son and be able to gain as much knowledge as I could about this monster living within his blood and liver.  

(Ryan is finally in treatment.)





Sabina Gets Active Against HCV

10 03 2011

(Guest post in a series from Sabina, our 15-year-old friend living with hepatitis C.)

Dear Readers,
 
Yesterday, I had my fourth interferon shot! And I didn’t feel any pain.

Yes, I was anxious but when I actually got the shot it was easy. So far, I’m lucky that I have not had any symptoms after the shot.

Sometimes I get headaches, nausea, and tired from the ribavirin pills. But I still feel upbeat and I’m really glad that so far I can do the sports I love to do.

Courtesy: Meredith James Johnstone

Last Tuesday, I started dance classes for the first time and I’m having great loads of fun. This Friday I have tryouts for volleyball. I’m excited for that. I don’t know if I can keep up both sports but I’m going to try.

Beyond sports, I feel like I’ve been able to do most activities and work at school. I haven’t missed any time, although I’ve been pretty tired. I’ve been going to bed early, like around 8 instead of 11.  That’s a big difference but I’m tired and I get to the point where I can’t keep my eyes open any more. This makes it harder to get my homework finished, but if I work on managing my time I can get everything done.

My parents say that if I get too tired I will have to let some activities go. I realize I shouldn’t overwork myself. But it feels good to be active and to have goals set for myself. 

One question I have for my readers is this—are there any other kids out there who are like me and going through this or thinking about getting treated? What are your views? What are the obstacles you are running into? And are you having any serious symptoms? I would love to hear from other people.





HCV+ Teen Tells It

24 02 2011

My name is Sabina, I live in San Diego, and I’m 15 years old. I have had hepatitis C (HCV) for about 13 years now and I have just recently decided to get rid of it and started treatment.

On MLK day I’m happy to say that I celebrated my first full week of being on the treatment. And let me tell you it wasn’t as bad as I thought it would be.

I started the treatment on January 10, 2011, and now I take two drugs. Every Monday I have to give myself a shot at night. When I was about to get my first shot, I was so nervous and scared. I thought the needle was going to be inches big but it wasn’t. The needle was an inch if not half an inch big. And it didn’t hurt one bit. But still I’m scared for every Monday to come.

Every morning I take pills after breakfast, and in the evening I take another dose after dinner. And so far I haven’t gotten any serious symptoms. Though everyday I get headaches in the evening that really hurt, but as I was doing some research I found out that it’s better that you don’t take medicine to try to make it better. Instead you should eat and drink lots of water, and it really does help.

From talking to people that have gone through the process before, some tips I learned were carrying a water bottle around with you is smart so you can always have water to drink, to not overreact if something happens because its happens to everyone, and to make sure you tell your parents everything from itchiness to headaches to how you’re feeling.

Something that I’m always concerned about is forgetting to take my pills every morning and evening. But you don’t need to worry about that. You should know that if you forget to take your pills in the morning you should never take 4 that night at once. All of that medicine at once can put a dent into your body.

Another thing that I’m worried about is my sports. But I was told from the doctor that after a few months I should be ready to go back to my everyday activities and sports. I’m a volleyball player and club season is coming up, and the doctor says I should be healthy enough to play. Great news, huh? So if you are a sports person don’t stress about not playing.





Ryan and HCV

7 02 2011

Ryan’s mom Nora talks about Ryan and his daily struggles with the difficulties in treating hepatitis C infection.

Listen now!

Right-click here to download podcast (7.5 mins/3mb)





Canker Sores

3 01 2011

Dr. Mary Beth, PKIDs’ advice nurse, explains the difference between canker sores and oral herpes, and what you can do to relieve the pain.

Listen now!

Right-click here to download podcast (5min/2.5mb)