May 18, 1999
House of Representatives
Government Reform
Criminal Justice, Drug Policy and Human Resources

Effectiveness of Hepatitis B Vaccine
Testimony of Karen/PKIDs

Karen is a member of the Advisory Board of PKIDs, an organization for parents of children with chronic, viral infectious diseases. Her eight-year-old son was diagnosed with hepatitis B five years ago and she would like to relate her family's experience with this virus to the Subcommittee members in order to increase their understanding of how devastating hepatitis B is. She is offering her comments in the hope that by promoting vaccination against this disease, other families will be spared the pain that hers is experiencing.

Chairman Mica, Congresswoman Mink, and members of the Subcommittee:
I'm here today to talk about my family. I won't add to the list of statistics related to immunization issues. I'd like to personalize them, to bring them to a level that you can relate to from the heart rather than from a business, political or clinical standpoint. My husband and I have three young children. One of us became infected with hepatitis B and is now a carrier. The face of this virus is one of our twins.

Although he has no apparent symptoms yet, biopsies at ages 3 and 4 confirmed that he had worsening cirrhosis. He did not respond to a 7-month course of interferon, a form of chemotherapy, and no other treatment has been available for him. He has had cirrhosis long enough that he must be monitored frequently for liver failure and cancer.

Fear
There is a four-letter "F' word from which we try to shield our children. It's something they shouldn't know anything about at such a young age. The word is Fear. Fear of social repercussions. Fear of financial ruin, Fear of sickness, death and loss. Social Issues You may have noticed that I have not provided our family name. I can't. The first thing hep B families learn, usually after rejection by friends or family, is to go to extreme lengths to protect their children's privacy. We cannot risk exposing our children's plight on programs like 20/20 to help inform others of the dangers of this disease. We desperately want to reach out for comfort when we learn our child has an incurable illness, but we can't. Local hospitals offer support groups for parents of children with cancer, but not for hepatitis.

We therefore formed a nonprofit group, PKIDs, or Parents of Kids with Infectious Diseases. PKIDs is determined to not only help families with infected children, but also to educate the public about chronic, viral infectious diseases including hepatitis B. My role as a member of the PKIDs Advisory Board enables me to accomplish my personal goal of ensuring that other families are prepared to deal with the complicated issues related to living with an infectious disease.

Emotional Issues
Parents feel an overwhelming need to warn childcare workers, teachers, Sunday School caretakers, babysitters, playmates and their parents that extra care needs to be taken if our child scrapes his knee, bites or is bitten, or has a bloody nose. We want to tell everyone to get the shots, yet we agonize over the negative consequences of "telling" . . . will our child be treated fairly, will he be ostracized on the playground, will we ever find a babysitter? Will he have any friends, or will our child be singled out as the kid to avoid? Will information given to the school nurse in confidence wind up as the topic of conversation at a PTA meeting? There are discrimination and disability laws that guarantee my child a public education, but there are no laws to protect my child's heart.

My husband and I attended a school training meeting with a group of parents. During casual conversation, a mom mentioned that she'd heard that there was a child with hep B in our school district. She went on to tell the other concerned parents that she had visited the school superintendent in an effort to identify the child so that she could better protect her son by isolating the children. We sat paralyzed in silence, waiting for glances to turn in our direction (they didn't!), and all I could think was, get your kid the shots if you want to protect him. We supervise our child's play, we coach his soccer games, we are there as much as possible in order to protect other people's children. But it's obviously impossible to continue this vigilance as the children grow older. When a neighbor tried to put a bandage on our child's bleeding cut I pushed her away. She thinks I'm over protective. She has no idea I was protecting her. No one else should have to live with this virus. It's preventable.

Financial Issues
We worry about our ability to provide the best care for our child. His interferon treatment cost well over $20,000 and only a portion was covered by insurance. We are self-employed and watched our health insurance premiums triple. Those> premiums now exceed our mortgage payment. We can't change carriers because we fear he could become sick or need a transplant during the "pre-existing condition exemption period" with a new policy. If no cure or control is found in the very near future, he will most likely need a liver transplant. We have been warned that transplant and post-transplant care could ruin us financially, and it is only a temporary solution for him. The virus would eventually attack the new liver as well. We wonder whether we will be able to afford to put our children through college, whether we will ever be able to afford retirement.

Closing
I call this virus IT. Capital I, capital T. Those of you familiar with Stephen King's monster will understand why. IT invades our lives, our thoughts, and our spiritual beliefs, no matter what defenses we erect. I watch my happy children playing and IT reminds me that we will soon have to tell my son that he has a serious illness. Whenever he doesn't feel well, I wonder, "Is this ITT' How long will IT allow him to play the sports he loves? How will IT affect his school performance? The quality and length of my son's life are huge unknowns, but statistics make it difficult to be optimistic. You can all look at your young children and fantasize about their senior proms and weddings. I cannot.

My son is a leader. He is clever, creative, charming. He is very protective of our other children and they look up to him. I fear the effect IT will have on his brothers, worry about how they will deal with his illness, or worse. I fear that I will watch my child die, the worst possible thing that can happen to a parent. No other family should ever have to experience this pain. Three shots can prevent IT.

Hepatitis B is transmitted primarily through blood and sexual contact with infected persons. My child can infect yours by sharing toothbrushes at camp, biting, leaving blood residues on hard surfaces (the virus lives for several days), sports such as wrestling where sores make contacts and so on. There are young, asymptomatic carriers who have not yet been diagnosed. Infected children and young adults will be socializing with and dating your children. I beg you to educate yourselves about the hepatitis virus and disease progression as well. Only then will you be able to make a truly informed decision regarding school immunizations and how to best protect our children.

Thank you for listening.

Karen Advisory Board