PKIDs Report Helps Families Cope When Children Have Hepatitis

WASHINGTON D.C. – The national nonprofit agency PKIDs (Parents of Kids with Infectious Diseases) has released a report examining how viral hepatitis affects children’s health and its medical, emotional and civil rights impact on America’s families.

The report, the first ever to address hepatitis A-E in children, is designed to help parents, social workers, daycare staff, teachers and health care providers better understand these diseases that infect millions of Americans, many of them children.

Today, the Centers for Disease Control and Prevention (CDC) estimates:

• One in 20 Americans have been infected with the hepatitis B
  
• About 4 million have been infected with the hepatitis C
  
• About 85 million have been infected with the short-lived hepatitis A virus, most during childhood. (Unlike the blood-borne hepatitis B and C viruses, hepatitis A is spread through food and water contaminated with the feces of infected people.)
  

Because children with hepatitis B or C rarely have symptoms, it is not known how many children are infected nationwide. However, CDC, which provided partial funding for this report, estimates that between 20 to 30 percent of the 1.25 million Americans with chronic hepatitis B became infected during childhood.

In addition to examining how hepatitis viruses affect the liver and what the latest medical treatments are, the 530-page report also addresses critical non-medical issues that families face, including:

• How and when to disclose a viral hepatitis diagnosis to an infected child
  
• What civil rights protections are available to children with infectious diseases in schools, daycare centers and sports programs
  
• How to practice standard (formerly called universal) precautions in every day life to prevent disease transmission
  
• And how to ease children’s anxieties about doctor visits and lab tests, including dreaded “blood tests.”
  

"This report is the culmination of years of work and research,” said Trish Parnell, executive director of PKIDs. “This wonderful resource will help parents understand these complex diseases and the medical terminology and tests that accompany them. It also provides guidance in dealing with the more personal issues that families face when a child has a chronic infectious disease.”

The report includes poignant, personal accounts written by parents about the challenges they face in raising children with chronic, infectious diseases.

The report underscores the importance of having all children immunized against hepatitis B and against hepatitis A, when it is prevalent in area communities. There are currently no vaccines available to protect children or adults against hepatitis C, D or E.

“This report benefits all who help infected children deal with their diseases,” said Alan P. Brownstein, President and CEO of the American Liver Foundation. “There is easy-to-understand information about these diseases and their treatments, plus great prevention insights. We applaud PKIDs for creating such a valuable resource.”

The mission of PKIDs is to educate the public about infectious diseases and to assist families whose children live with chronic, infectious diseases such as hepatitis. “We at CDC think the information in this guide will be helpful to all parents facing these challenges,” wrote Dr. Harold S. Margolis, Acting Director of the CDC’s Division of Viral Hepatitis, in the report’s Preface.

“This report provides trustworthy and authoritative information about chronic viral hepatitis in children,” said Dr. Philip Rosenthal, Medical Director of the Pediatric Liver Transplant Program and Director of Pediatric Hepatology at the University of California, San Francisco, and one of the report's medical reviewers. “It is written so it can be easily understood. Of course, no single report can individualize therapy for any patient, but this report can aid the discussion so the options available to the child can be discussed.”

The entire report can be viewed or downloaded free-of-charge at http://www.pkids.org/pedheprep.htm and a hard copy of the report can be ordered directly from PKIDs by calling 360-695-0293. The report, including shipping and handling, is $45 per copy.

PKIDs, which supports families whose children have viral hepatitis, HIV and other chronic infectious diseases, offers a Parent Support Email List and a wide range of medical and informational resources at its website (http://www.pkids.org). PKIDs also offers a toll-free number for parents – 877-55-PKIDS (877-557-5437).

“We hope this report helps parents, healthcare providers and others in caring and advocating for children with viral hepatitis,” said Ms. Parnell. “But this report also makes clear that on the treatment end, we still have a very long way to go before finding a safe and effective treatment for children with hepatitis B and C.”