Immunization Support Statements
Keith B. Van Zandt, M.D., Family Physician
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.
Rebecca E. Cole
Members of the Congressional Committee for Government Reform, thank you for allowing me to speak to you today.
My name is Rebecca Cole, and I am the mother of five children. I am speaking to you today because I have faced the worst nightmare any parent can possibly face. There is no experience on earth that compares to the horror and devastation of losing a child. It is shattered dreams, crushed wishes, and a future that suddenly vanishes before our eyes. It cannot be wished away, slept away, prayed away, or screamed away. It is darkness, agony, and shock. It leaves our hearts, broken, bleeding, and bursting with pain. And, it changes us forever.
My life changed forever on June 30, 1988, when I had to stand by helplessly as an infectious disease claimed the life of my oldest child, Christopher Aaron Chinnes, at the age of 12. Christopher was a beautiful little boy who had light blonde hair, and deep, brown eyes. He was full of compassion, joy, and energy. He loved baseball, and every living creature on the earth. He wanted to be a scientist or doctor. I can honestly say that my son was one of the most beautiful human beings I have ever known, and I am proud to have been his mother.
Christopher was born a very healthy child, but at the age of eight he developed asthma. It was never a problem for him, and it never kept him from doing the things he loved. But, on June 16, 1988, four years after he was diagnosed, he suffered his first and only severe asthma attack. He had to be hospitalized and was treated with all of the normally prescribed drugs, including a corticosteroid. (Anti-inflammatory drugs used in asthma, arthritis, allergies, etc.) He was released four days later with several medications to finish at home, and he was well on his way to recovery.
On June 23, exactly one week after the asthma attack, he broke out with the chickenpox. "Don’t worry, you’ll get over it," I told him. What I didn’t know was that the corticosteroid, had lowered his body’s immune response and he could not fight the disease. The chickenpox began to rampage wildly through his young body. As I drove him to the emergency room, on June 27, my four younger children watched silently in shock and horror as their brother went into seizures, went blind, turned gray, and collapsed due to hemorrhaging in his brain. That afternoon Christopher was flown from Camp Lejuene’s Naval Hospital to East Carolina University’s Medical Center, but the chickenpox was uncontrollably sweeping through him like a wildfire, and there was nothing anyone could do.
The next day Christopher suffered a cardiac arrest and slipped into a coma. As my son lay swollen beyond recognition, and hemorrhaging from every area imaginable, including out into the blisters on his skin, I learned that a vaccine existed, but was not yet licensed by the FDA. A vaccine that could have prevented the unimaginable suffering of my child, and all who knew him. On June 30, 1988, exactly one week after breaking out with chickenpox, Christopher passed away. The chickenpox virus had destroyed every organ in his body, and it cut pieces from the hearts of everyone who witnessed its devastation. Christopher wanted to be a scientist or doctor, but because of the unavailability of a vaccine, we will never know what contributions he might have made to society.
Vaccines prevent countless deaths each year. Without them the number of valuable human beings we'd lose would be staggering. Yes, sadly, some injuries and deaths occur as a result of vaccines, but unfortunately, there are risks with every single drug we use. We have not and will never reach perfection, we must remember that the benefits of our vaccines far outweigh the risks. Especially for those who are ill or immunosuppressed like Christopher was. There are innocent children and adults who come in contact with the public everyday who would die if they were exposed to the diseases we can prevent. If everyone around them is vaccinated, they are also protected. We owe it to them and to ourselves as a nation to achieve the highest level of protection possible. We must win the war against infectious disease, and vaccines are our most powerful weapons. We cannot win, however, if we do not use them. Leaving any of our population unprotected is like surrendering to a defeatable foe. We must never surrender.
Government Reform Committee
Testimony for the record
My name is Trish Parnell. I’m the director of PKIDs, a national nonprofit for parents of kids living with chronic, viral infectious diseases. Hepatitis B is one of those diseases, although it shouldn’t be. We’ve had the ability to eradicate hepatitis B with a vaccine since 1982—make it go the way of smallpox and polio.
Every parent of a child living with hepatitis B will tell you that they’d do or give anything to turn back the clock and have their child vaccinated. It’s so simple to prevent, and yet many parents are unaware of the disease and that kids can get it. When parents find out their child has this disease, the place inside them where they make plans for her perfect, happy life just shatters. It doesn’t matter what words they try to use to describe the feeling—it’s impossible to completely understand it if you haven’t experienced the same thing with your child. But, as awful as it is for them to look at their child and realize that people are afraid to be around her, that she is in for a lifetime of tests and care or possibly a life shortened by serious illness, none of those emotions compare to how they felt when told it could have been prevented. There was a vaccine to prevent infection and their child didn’t get the vaccine.
PKIDs has parents all around this country who have gone through this horror. We get calls and emails from parents in shock because their kids —of all ages—have become chronically ill with hepatitis B, which causes anything from jaundice and fatigue to cirrhosis, liver cancer, and death.
This disease is not kind to kids. Ninety percent of the babies who are infected at birth or shortly thereafter will become chronic carriers. That percentage slowly reverses as the child ages. A five-year-old has about a 50-50 chance of becoming chronic, and an adult has a ten percent chance. Kids are the ones most at risk from this disease.
According to the Centers for Disease Control and Prevention, there are between 1 million and 1.25 million folks in the U.S. who are chronically infected with this disease—forty-two percent of whom were initially infected before their 19th birthday. More than half of those infected before their 19th birthday were infected perinatally, or around the time of their birth. These figures don’t represent the millions of Americans who’ve been infected (and therefore were infectious to others), but whose immune systems were able to eventually fight off the disease.
The World Health Organization says that one-third of the world’s population, two billion people, have had or do have hepatitis B. This is a mind-boggling number. Of that number, 350 million are chronically ill with this disease. Each year in the U.S., an estimated 200,000 people have new hepatitis B infections, of whom more than 11,000 people are hospitalized, and 4,000 to 5,000 people die.
PKIDs exists because there are lots of families living with chronic, viral infectious diseases. We don’t want to see any more children infected. We want them protected through the use of safe vaccines and universal precautions. All of the reputable health organizations in the U.S., and in the world, support the hepatitis B vaccine for its safety and efficacy. CDC figures show that more than 95 percent of children and adolescents, and more than 90 percent of young, healthy adults develop adequate antibody to the recommended series of three doses and are protected against acute hepatitis B as well as the chronic consequences of HBV infection, including cirrhosis and liver cancer.
Already, more than 20 million persons have received the hepatitis B vaccine in the U.S., and more than 500 million persons have received the vaccine worldwide. The CDC’s website shows that the most common side effects from hepatitis B vaccination are pain at the injection site and mild to moderate fever. Studies show that these side effects are reported no more frequently among those vaccinated than among persons not receiving vaccine. Among children receiving both hepatitis B vaccine and diphtheria-tetanus-pertussis (DTP) vaccine, these mild side effects have been observed no more frequently than among children receiving DTP vaccine alone.
Hepatitis B is real and it’s in this country. One-third of those infected don’t know how they became infected. The majority of the 200,000 newly infected each year do not even know they’re infected, and may never know. But in the weeks or months before their bodies’ immune systems fight off the disease, if they do, they can infect others. It’s important to vaccinate the newborns and young children because they’re most at risk for chronic illness, and it’s important to vaccinate the kids in middle schools because they’re becoming teenagers, a fast-growing population for hepatitis B infection.
It isn’t necessary to have intercourse to get infected with hepatitis B; it can be transmitted by deep kissing. The mucous membranes in the mouth are thin, and if one person has bleeding in the mouth from gingivitis or other causes, the blood can mix with the saliva and be passed into the other person’s mouth where it can enter through their mucous membranes.
These are things you don’t think of unless you or someone you love is diagnosed with hepatitis B, then it becomes necessary to educate yourself about the disease. The public can’t be protected by identifying those infected. There’s no way to know who’s infected. If you haven’t been vaccinated, you could not be infected on Thursday, and become infected on Friday and not know it. The way to protect yourself and your family is to use universal precautions (assume everyone has an infectious disease and act accordingly), and get vaccinated when vaccines are available.
Government Reform Committee
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. One of our twins is the face of this virus. 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.
There is a four-letter "F" word which we try to shield our children from. 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.
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 child's privacy. We cannot risk exposing our children's plight on news programs such as 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 non-profit group, PKIDs, or Parents of Kids with Infectious Diseases. PKIDs is determined not only to help families with infected children, but also to educate the public about chronic viruses including hepatitis. My work with PKIDs 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.
Parents feel an overwhelming need to warn day care workers, teachers, Sunday school teachers, 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 children be singled out as the kids 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 parent meeting. During casual conversation, a mom mentioned that she had visited the school superintendent because she'd heard there was a child in the district with hep B. She asked him 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 overprotective. She has no idea I was protecting her. No one else should have to live with this virus. It's preventable.
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 wonder how we will ever afford college or retirement. If no cure or control is found for hepatitis B in the very near future, our son will most likely need a liver transplant. We have been warned that transplant and post—transplant care could ruin us financially; and worse, it is only a temporary solution for him. The virus would eventually attack the new liver as well.
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, 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 IT"? How long will IT allow him to play the sports he loves? How will IT affect his school performance? Hepatitis 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 (he's losing his baby teeth), biting, leaving blood residues on hard surfaces (the virus lives for a week, and he has frequent nosebleeds as a result of the virus), and through sports such as wrestling (where sores make contact).
There are infected kids out there with no symptoms who have not yet been diagnosed. Infected children and young adults will be socializing with and dating your children. It is clear to me that those who oppose immunizing our school children are well informed about things such as vaccine composition and side effects. 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 of PKIDs
Government Reform Committee
On Jan. 29, 1992 my family celebrated the greatest gift that one could receive, the birth of our son Jonathon. On Feb. 23, 1998 we mourned the unimaginable, Jonathon's death. He was only six years old.
What caused his death was, and is, preventable. A vaccine is available that could have saved his life. His death was caused by CHICKEN POX!!! Unfortunately, the varicella, or chicken pox, vaccine is the only one he didn't receive. As loving and protective parents we made sure that our children wore bike helmets when riding their bikes, didn't talk to people we or they didn't know, took swimming lessons, and kept their required immunizations current.
I have learned that currently there is between $400-500 million dollars spent on varicella-related insurance costs and lost wages, that there are over 10,000 hospitalizations every year and that there are only approximately 100 REPORTED deaths a year caused from chicken pox. I am sure that the number of reported cases would be much greater if all cases were reported to the C.D.C.
To those parents and families whose children have had adverse effects from vaccines, you have my heartfelt sympathy. But, you see, for me and my family, kissing Jon good night, giving him hugs, seeing him smile, watching him grow, and telling him that we love him are things that we no longer get to enjoy or have the pleasure to do ever again with him.
Please, I urge you all not to think that chicken pox is a harmless childhood disease, IT IS NOT. The pain that our families go through everyday is a pain that will NEVER GO AWAY!! Please get all the information that you can, review the research and statistics, and you will understand what I know now...this vaccine is very important. It can save lives.
In my home state of Florida, because of Jonathon and what happened to my family, the varicella vaccine will now be a requirement for the 2001/2002 school year. It can, and should be done in other states, because if one person can be spared the pain of getting chicken pox then the benefits will far outweigh the risks. Please remember, now my family has to cope with the death of our son, a death that could have been prevented by a vaccine we didn't know was available.
My name is Nancy Collins. I am the mother of a four-year-old girl who is a chronic carrier of the hepatitis B virus. As you can see from her picture, she does not look at all sick. However, her hepatitis caused her to have advanced cirrhosis by the time she was two. She was treated with interferon for over a year with little response. We have encountered all the same obstacles, problems and heartaches that other families living with hepatitis have experienced. However, what I would like to talk about today is not my daughter's illness, but how she can put other children at risk.
Aside from being HBV positive, Hannah is ADHD (Attention Deficit Hyperactivity Disorder) and somewhat developmentally delayed, both of which present behavior problems. She attends a preschool for the developmentally delayed where her specific issues can be addressed. For example, when she is unable to complete a task or is frustrated by another child, she has temper tantrums and when angry she bites and scratches. She also forces herself to vomit when she is very upset. She has the disgusting habit of picking her nose, causing nosebleeds. Hannah also refuses to be toilet trained and sometimes accidents happen. As you can see, there are many occasions when my daughter's bodily fluids are "exposed". And keep in mind, all of these instances are in addition to the cuts, scrapes, scuffles, etc. that happen in ordinary day-to-day life.
When Hannah was being placed in school, some of my friends suggested she might be learning negative behaviors from other children, and wondered whether I was sure I wanted that to happen. Well, I told them, my daughter is the one other mothers don't want their kids to be with. Sometimes I feel she is everyone's worst nightmare. My husband and I pray that by the time she is old enough to go to public school these behaviors will be under control. She is presently classified as a preschooler with a disability. However, when she reaches public school, she will be mainstreamed into regular classes with special ed pullouts if necessary. The teachers and aides at school are wonderful about watching Hannah's activities and using universal precautions; and of course at home we are always "on guard". But as she gets older, she will be involved in other activities such as sports, scouts and camping, where the chance of contact increases.
My family has been vaccinated and it is generally the rule of thumb in our area to vaccinate all newborns. But, needless to say, there will be times when other children with whom she is playing are exposed to her virus. Many people feel the HBV vaccination is not needed until children are older and possibly becoming sexually active. By then, it could be too late.
We are very open about our daughter's virus so almost everyone she comes in contact with knows to be very careful and watchful. But there are many children whose infection is kept secret or who carry the disease and are not yet diagnosed. Those children can put others at risk. Parents of healthy children need to know their children are at risk in the presence of Hannah and others like her. They can protect their children by having them vaccinated.
My name is Maureen and I am here today to speak on behalf of my youngest daughter, her illness and how it affects our family. My husband and I have two beautiful children, a healthy, rambunctious, four-year-old big sister and our twenty-one months old infected with the hepatitis B virus.
Dealing with the Hepatitis B virus is very taxing for all family members. When we initially learned of our little one's diagnosis, we were devastated. She was only ten months old. How could our beautiful little baby have this terrible, life-threatening virus? At thirteen months old our little darling experienced her first hospital procedure. She endured a liver biopsy so we could learn the extent of her liver damage. Because the virus is ravaging her liver, treatment was highly recommended. Since she is a baby, our only option was interferon, a form of chemotherapy. My husband and I injected our daughter three times per week for six months. Can you imagine what it's like to inject your own baby? She had no idea why we were doing this to her. There were also the biweekly blood draws for three months, with our daughter "donating" up to nine vials of blood per visit. Although the blood draws are down to only once every three months, I still dread the visits and shudder as I recall myself and two other technicians holding down my poor, screaming baby.
Now that the interferon treatments are over, we wait. We wait to see if she will respond to the treatments. It could take over a year before we will know if all of the pain and suffering were worth it. When I first learned of her status, I was confident that it was only a temporary condition. We had heard that some people clear the virus on their own, but later learned that only a very small percentage of young children are so lucky. Now, eleven months later, I am finally coming to the conclusion that hepatitis B is likely to remain a part of our family for many years to come. I spend many a sleepless night worrying about potential symptoms. Was the color of her stools too light, does she appear jaundiced, was she especially fatigued, or did she appear to be experiencing muscle pain? When we travel, our pediatric gastroenterologist provides us with the names of other pediatric GI's in the area to which we are traveling, because of course, there is always the concern of an emergency.
Unlike many other families, we have chosen to be somewhat open regarding our baby’s status. We hope that one day we do not regret this decision. Although most have been supportive, we have seen some people respond hesitantly to our daughter. Even family members have expressed concerns that "perhaps they shouldn't hold the baby because they have not been immunized". There is a lesson even in that statement, and the lesson is that you and your family should be vaccinated against the hepatitis B virus. Our daughter is a known entity.
Those in contact with her may choose to become vaccinated, practice universal precautions, or sadly, choose not to associate with her. But beware, there are many others out there like our child. Most carriers of chronic infectious diseases choose not to disclose their status, or they may not be aware that they are carriers. They could be the boy or girl next door. Why take the chance?
One of the few things that eases my mind with regard to our daughter’s status is the fact that we live in a state which mandates the vaccination of all school age children for Hepatitis B. I would never want anyone to suffer the anguish of having his or her child infected when a vaccine is readily available to prevent infection.
She is young now so we do not know what challenges await her and our family. She is sweet and outgoing by nature. Although today she appears relatively asymptomatic, she suffers from unusual fatigue for a child her age. Down the road, what will this virus do to the quality of her life? Will adults and peers shun her? Can she possibly look forward to her first loving relationship without apprehension? Will she know true love and the love of children? How can she possibly survive this unscathed? And of course worst of all, will she survive this virus or will it take her life?
Sometimes when I discuss her medical situation with others, they remark "Well she can always have a liver transplant!" It sounds so simple…but it's not. First there's getting to that stage. There are the dreaded symptoms and desperate treatments. There is the search for a suitable, available liver. And there is the terrible suffering associated with a liver transplant, including minimal pain medications because the liver cannot tolerate them. Next comes surviving the transplant itself, and then living with the transplant and the immuno-suppressants and modified lifestyle required to survive. There is also a very real concern that the new liver will also be consumed with the virus.
Please realize the importance of considering all sides of the vaccination issue by listening to the voices of families who are victims, victims living daily with a chronic infectious disease. Remember infectious diseases have no prejudices. They infect people of all ethnic backgrounds, religion and social status. Why not eliminate the risk of contracting an infectious disease such as Hepatitis B by getting your family vaccinated? Save your family the devastation of hearing these words "I'm sorry, but your baby has hepatitis B"…Thank you for your time.
Cindy, a PKIDs mom, wrote this after her hepatitis B+ daughter underwent a biopsy. She prefers not to use her family name, as a way to keep her daughter’s identity private.
Tell Me Again
A little girl, drowsy with sleep
Is awakened at dawn, still dreamy-eyed, but cheerful
Tenderly tucked into the family car
For a journey she doesn’t know where
She’s trusting the grownups in charge
The hospital looms large, massive, its concrete body resting, bloated by its Occupants
Inside, hushed activity, "good luck today", side looks
(She’s Hep B is whispered)
We tread gingerly to our room
She’s trusting the grownups in charge
Then they attack:
Blood draw! Needles! Oops, try again, and again, and again
Tears, cries, from the once cheerful little girl
Hugs, blankies, bubbles from the grownups in charge
The IV Line!
Where’s the vein? Too small, can’t find it, move the needle around, poke again, and again, and again
The littls girl screams, cries in pain
Then in rage
The grownups in charge tighten, brace for her anger
Tell me again!
We can’t prevent this?
While she screams in my ear, cries on my blouse, enraged at ME
They succeed, the line is in
A little girl with a board attached to her arm wipes her tears
Sniffles, sighs, hiccups
The biopsy is next
The doc waits, experienced from a lot of Hep B patients
Fearful, the little girl squirms, decides to ACT
Pushes her crib into the room
Looks at her mom, questionably
Climbs into her lap, dutifully
Falls limp with sedation—out, gone
Tell me again
We stopped vaccinating?
So more can experience this?
She’s not trusting grownups in charge
I am Christine of Maine. I am a parent of a child with chronic Hepatitis B.
My daughter was adopted from China at age 4 months nearly six years ago. She had tested negative for Hepatitis B in China. My pediatrician, practicing in Portland, Maine, at the time had little experience with adopted children and minimal experience with any children with active hepatitis, like many pediatricians in this country. She assumed the test in China was correct and had planned to test my daughter when she was 2 years old.
When my daughter was 18 months, I asked the doctor to test my daughter, I had begun to hear of children testing positive here in the United States, despite a negative test in China. My daughter, much to our shock, tested positive.
We immediately had all of our family members tested for hepatitis B. Her two sisters and father tested negative. I tested positive. Before we adopted our daughter, I had faithfully donated blood three to four times per year and had never been told of any hepatitis. Through my normal caring and household contact with her, I had contracted the virus. I joined the 5 percent of Americans who have been infected with Hepatitis B.
I was lucky, because I was older and in reasonably good health, I suffered flu-like symptoms and high fever for three to four days _ all the time chalking it up to some odd flu—and then my body overcome the virus and produced the antibodies needed to successfully combat it. Today, I am healthy and immune to Hepatitis B.
My daughter is not so lucky. She probably contracted it from her birthmother. Unlike Taiwan, which has come close to eradicating Hepatitis B transmission between mother and child by immediately vaccinating newborns, my daughter received no medical vaccinations at her birth. The Hepatitis B screen conducted on her in China was faulty from the start. She would not have shown true indications of hepatitis until at least six months after her birth. She was tested at 3 months.
I wish I could tell you that all has been easy since her diagnosis five years ago, but it has not. The good news is she continues to be symptomatic, her liver so far has not been harmed by the virus. Her body at the moment has a tenuous peace accord with the virus. I hope and pray that by the time she is in her 20s or 30s, at a time when chronic hepatitis often becomes active and damages the liver, that a cure is found.
But today, my daughter is an average 6 year-old who loves gymnastics and dancing and art and who works alongside dozens of children in her school each day. There is little chance she will ever transmit the virus to a classmate or playmate. As you know, you must be closely exposed to a carrier to contract the virus. The chances of that increase dramatically if you are a parent or caregiver. And the chances that she could transmit the disease is higher in Maine than in other states. Maine does not require Hepatitis B vaccinations at any age.
Maine has about 1.2 million residents, according to the U.S. Centers for Disease Control and Prevention, that is the same number of U.S. citizens who are chronic hepatitis B carriers.
In the past five years, at private day care centers and in public school, my daughter has faced isolation and violations of her civil rights under the Americans with Disabilities Act and federal privacy statutes.
One day care center wanted her to use a separate toilet and then dismissed her after she reportedly had bitten a child, despite the fact no one saw her do it. In public school, a teacher made plans to move her to another classroom because she thought my daughter posed a health risk to a boy who was receiving chemotherapy. All of these decisions were made out of ignorance, and without authoritative medical advice.
The good news is, with education and dialogue, the day care center eventually realized it had made a terrible mistake. It now requires all its children to receive all available vaccines, including the Hepatitis B vaccine, so no child will ever be treated differently because they have a virus that can be prevented by vaccine.
The school, which had not implemented ADA regulations into its internal policies, also realized its errors and implemented new policies that incorporate what the ADA requires. It has also reviewed right-to-privacy statutes with teachers.
That’s the good news. But none of this would have happened had there been universal application of the Hepatitis B vaccine.
If indeed this vaccine is ever found to be unsafe, then appropriate action must be taken. But to date, I know of no valid scientific findings that have substantiated the claims that the vaccine posed medically unacceptable risks.
What I want most to tell you is that Hepatitis B is present in Maine, in Minnesota, in California and every place else in this country. It is present in children, in infant and in adults of all races and incomes.
Vaccination not only protects children and adults from this life-threatening disease, it prevents discrimination against people who have an infectious disease that can easily be prevented.
I ask you respectfully to do all that you can to ensure that no other child or adult is ever infected by this disease that kills about 5,000 Americans each year and 1 million people worldwide.
I thank you for your time.
I would like to tell you about my mother and all mothers like her who suffered through the loss of a child from an infectious disease. Raising a family in the hills of Kentucky, where most people were too poor to pay for the little, if any, medical help available, my mother struggled to keep her family healthy. When one of her babies became seriously ill, my mother and her parents did everything they could to try and help her Despite their efforts, my mother watched her child, Patsy Lynn, die from whooping cough. While making arrangements for Patsy's funeral my mother learned that another one of her children was gravely ill. Both children were buried on the same day, in the same casket, in the same grave next to my mother's church.
After the death of two children, my family was able to relocate to the Cincinnati area where medical attention was more readily available. We all had our vaccines as my mother was determined not to lose another child to unseen viruses and she insisted on washing and boiling everything that we touched. I lived through the effect the loss had upon my mother's life. The fear of disease was so real then, but many of us today forget what it was like to live in a time when diseases like measles, polio and smallpox were so much more common and deadly.
I remember the time that I was not allowed to play with a friend because her mother had been sent to the "TB hospital" and I vividly remember the Sunday that we spent standing in the long lines to receive our sugar cubes laced with the polio vaccine. During the early sixties, I remember being put to bed in a dark room when it was thought I might have the measles. Most of all, I'll never forget that several of my teachers wore braces because of the effects of polio.
My mother tried her best to prevent us from succumbing to any disease which may shorten our lives, so I'm thankful that when she died of cancer in 1982 she did not know that I had somehow contracted the hepatitis B virus.
In June 1995, I was diagnosed with hepatitis B about a week before my 25th Wedding Anniversary. A doctor told my husband that I had a sexually transmitted disease and that he should be tested and vaccinated. What the doctor failed to tell us at the time was that this hepatitis could be spread in many other ways. I had complete trust in my husband and, thank God he had faith and trust in me, so this suggestion of sexually promiscuity did not harm our marriage.
Within the week we were informed that my husband tested negative, as did my children, who have all been vaccinated since this ordeal began. Incidentally, none of them had any adverse reaction to the vaccination. Shortly after my diagnosis with hepatitis B, an employee of the Cincinnati Public School informed me that it was believed that a student that I had worked with had hepatitis B. This employee and the child's nurse had been vaccinated. I was furious, because no one had bothered to tell me and I worked closely with the child as an interpreter. I had even gone to gym class— a place where children are frequently hurt— with this student. However, I have since been informed that this child did not have hepatitis and had only been vaccinated for protection since the student was in a high-risk group.
This story caused a great deal of pain for the student's family and I deeply regret that they were hurt in any way by my checking out this rumor. I was eventually told by a representative of the Cincinnati School's Occupational Safety Department that I probably contracted hepatitis from a dentist, since this is thought to be one of the easiest places to pick up the virus. I never pursued this possibility any further, because my doctor told me in June 1995 that I already had cirrhosis of the liver, which meant I probably had the virus for years.
I have tried for years to find out where I got the virus. Could it have been from my mother who died of liver cancer? Did I get it in grade school, or from dental work, surgeries? Did I get it in one of the hospitals or clinics where I have worked as an interpreter? Did I get if from a child who ran into me on the playground, or from the little girl who bit me while I was working in the Cincinnati Public Schools? Recent immigration has brought about an increase in the number foreign students in our school systems and the incidence of hepatitis is much higher in other countries. Is that how I contracted it? I am part of the 40% of hepatitis B patients who will never know how they got this chronic, potentially terminal virus.
The only thing I can be sure of is that I did not get hepatitis B from sexual contact, drug use or tattoos. However, I have now arrived at a place of peace in my life by accepting the fact that I will never know the path of transmission— and I no longer search for that answer.
Now I focus on how the virus can be stopped from spreading. Hopefully some day our schools will be as worried about hepatitis as they are worried about head lice and chicken pox. They require testing for TB but no one asked me if I had hepatitis and I was never tested. Now ask yourself how easy it would be for your children to contact the disease while playing basketball, soccer, baseball or track. What about the fights in the school lunch lines, or the little girls and boys who trade pierced earrings, perhaps while unknowingly having hepatitis B? I don't mean to frighten everyone with the ease of contracting hepatitis B, but the statistics show that it is easier to spread than AIDS, as others will no doubt testify to.
In closing, I want to make one additional point. I know that by being here today I have added another brick to my wall of isolation because of fear some have of contracting my disease. I also know many people will not believe that I have had only one intimate partner— but my husband does— and that is all that matters!
Oh yes, one more thing: The best thing my doctor did tell me was that I needed to get my kids vaccinated and I did. So you can not even image my joy when I received (or rather my son received) his blood donor card from Hoxworths Blood Center thanking him for his donation and telling him his blood type. Why am I so happy? This means he does not have this terrible disease of hepatitis B and I have succeeded in protecting him. So all I am asking of this committee is to help me protect your children in the same way I have protected my own. Though vaccination.
And this is my mother's legacy to me: protect your children the best you can.
Barbra Anne Malapelli Haun
Claudia, a PKIDs mom
I am the mother of a 6-year-old boy who is infected with the hepatitis B virus (HBV). I would like to tell you my experiences so that you can better understand what is means to raise a child who has this chronic infectious disease.
Like many children his age, my son has begun to have "best friends" and to actively seek compatible children to be his friends. Children need to have playmates to develop into productive citizens and caring human beings. He has a nice group of boys (and a couple of girls) that he pals around with. HBV is spread when bodily fluids from an infected person come into contact with bodily fluids of another person. The risk of my son exposing one of his friends to the virus during daily play is very small—he doesn't scrape his knee every day. But, active kids do get cuts and bruises. A scraped knee has the potential to transmit the virus to another child who also has an open cut. Because my state requires HBV vaccination before entering daycare or public school, I do not have to worry that my son's friends could ever contract an extremely serious disease simply by playing with my him for an afternoon.
I experienced first-hand lack of universal vaccination can isolate infected children. When my son was a toddler, he played occasionally with another toddler. After a while, I told the parent about my son's HBV status. I had assumed that the parent would have questions, and perhaps want to speak to my son's hepatologist for advice and direction. I did not know the child's vaccination status and, as it turned out that the child, who was not attending daycare, was not vaccinated. The result of my disclosure? My son's playmate disappeared, with only the parent's apology, "I'm sorry, your son is such a nice kid, but..."
Because of this, when another parent pressed us to let her take our son (then about 3 years old) to the playground with her daughter, we did not tell her of our son's HBV. We were afraid, even though we knew the girl was vaccinated, that our son would once again be ostracized. Unfortunately, our son fell, cutting his lip, and bled profusely. We of course told the parent immediately and subsequent blood tests showed that she is immune. But our fears that our son would be rejected caused a situation that we deeply regret. We never again let our son be supervised by a parent who was unaware of his status during his preschool years.
As he got older, we taught our son never to touch another person's blood and never to let another person touch his blood. He has been responsible for his own band aids since he was 4 years old. We go to all his soccer games, not only to cheer him on, but also "just in case something happens.". I carry an assortment of band aids in my purse. We carry a homemade first-aid kit with latex gloves and a variety of bandages in our car.
This level of vigilance becomes impossible as a child gets older. He now goes on unsupervised play dates because that is completely normal for 6-year-olds. When he goes to another child's house, I worry that he will scrape his knee or elbow. I have told the parents of some of his current playmates about his HBV. Even though adults who become infected with HBV are very likely to fight off the disease, I do not want my child to spread this disease to anyone. But every time I have to tell someone about his disease, I know that there is a good chance that that person will reject my son, and want to isolate him.
My son is very tall for his age. His level of physical activity is amazing. His rosy cheeks and shining eyes make him appear to be completely healthy. No one would even dream that he has a chronic disease. Since children with HBV do not usually have obvious symptoms for many years, they can go many years without being diagnosed. Without universal vaccination, undiagnosed, seemingly healthy children will be able to spread the disease to their playmates.
Children who become infected with HBV are very likely to become lifelong carriers. Chronic HBV is associated with increased risks for cirrhosis and liver cancer. I do not want my son to spread this disease to any other child. I do not want any other parent to live with the fears of—ostracism, of inadvertent infection, of how the disease will progress in their child—that I live with daily. Only with universal vaccination can we be sure that children with HBV cannot spread this disease to their pals.
We must define the issue correctly. We should track and investigate alleged adverse side effects of the vaccine. If problems with vaccine formulations are revealed, then the vaccines need to be modified. But, we must also track and investigate the risks of spreading the disease within a population of non-vaccinated children, especially because HBV often goes undetected in young children. Eliminating the requirement of vaccination does not solve any problems, it just causes new ones.
Important disclaimer: The information on pkids.org is for educational purposes only and should not be considered to be medical advice. It is not meant to replace the advice of the physician who cares for your child. All medical advice and information should be considered to be incomplete without a physical exam, which is not possible without a visit to your doctor.
disease from spreading.
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