I was locked out of this account and started a new site. Please see all posts at the new address:
http://hbvparentadvocate.blogspot.com/
Saturday, September 22, 2007
Friday, September 14, 2007
Let the Advocacy Begin
When my child was diagnosed with the Hepatitis B virus after returning home from Vietnam I was shocked, then I was angry and now I am just sad this had to happen. I have had a lot of time to think about what could have/should have been done and I came to the conclusion that I can decide to deal with what is (which we are doing) and move on or I can advocate for the children still left in Vietnam who do not have a voice. Hepatitis B is a preventable disease, that is what is so sad. I don't blame my agency (although I do think they should have prevented it, their facilitator is a medical doctor....for that reason alone she should have had a vaccination program in place IMO). But families coming home to realize their children are positive is not confined to one or even two agencies. Unfortunately this disease is very prevalent in SE Asia and the risk of a baby being born to an infected mother is great. Our child tested negative and was most likely infected after the original testing, so the vaccine could have literally prevented this disease. The agencies need to step up and use part of the money we are paying (which is more than adequate for a program such as this) in fees and start protecting these children. Do I have all the answers...NO. But will I do everything in my power to find out the answers...YES.
Here is a copy of the letter (with identifying information removed) I have sent to all the agencies
Hello. My name is Tracy X, and I am writing to advocate for a Hepatitis B vaccination program to be implemented in every Vietnamese orphanage with which your agency works. Hepatitis B can be a devastating disease to adopted children and their new families. Many babies from Vietnamese orphanages are infected with this virus, but what makes it so sad is that it is a very preventable disease. The Hepatitis B vaccination is readily available and safe. Moreover, simple universal health precautions, such as not re-using needles, can go a long way in preventing the virus spreading.
Did you know a child born to a Hepatitis B antigen-positive mother that is given the Hepatitis B immunoglobulin (HBIG) shot and the first dose of the Hepatitis B vaccination within 12 hours of birth has only a 5 percent chance of developing chronic hepatitis? Yet without these shots approximately 90 percent will develop chronic hepatitis. One of the biggest predictors of whether a person will develop chronic hepatitis is the time in his life he is exposed to the virus. If exposed during infancy 90 percent will develop chronic hepatitis. That number drops to 30-50 percent if exposed as older children, and only 10 percent of adults who are exposed to the virus will become chronically infected. Therefore, the need for vaccination as early as possible is paramount in protecting all children. Due to the nature of this disease, treatment with available medication is rarely an option for those infected as infants or children, so they end up living their lives knowing they are infectious to others and are often stigmatized by society or peers. The long-term complications of this virus are cirrhosis of the liver, liver failure and liver cancer. Eighty percent of all primary liver cancers are due to this virus, with a five-year survival rate of less than 10 percent.
My child, who was adopted in from an orphanage near Hanoi, Vietnam, tested negative for the Hepatitis B Virus (HBV) at 3 months of age when the adoption physical was completed. Less than six months later it was discovered, during routine international adoption lab work here in the U.S., that my child is HBV positive with a very high viral load . The antigens that were tested for at 3 months of age (which are only present when there is active disease) are detectable within 4-6 weeks after exposure to the virus, so most likely the exposure was not by a birth-mother but at some time after that first test. I believe (although we will never know) my child was exposed sometime after this initial testing during an illness or hospitalization or by an infected caregiver. If our agency and/or the orphanage had participated in a routine Hepatitis B vaccination program, our baby would not have become infected, even if exposed to the virus. Three small shots could have saved our baby from a lifetime of blood tests, liver ultrasounds, potential liver cancer and the stigma of having this disease. That is why it is my goal to ensure this does not happen to any other children. Although it was shocking to find out our child is positive for this disease, it is our child who will live his/her life dealing with the consequences of what that entails. I would love to see every Vietnamese child living in an orphanage be vaccinated.
This is such an easy and doable plan. If every child who is estimated to be less than 12 hours old at the time of relinquishment or abandonment were given the HBIG shot and the three Hepatitis B vaccinations, most would never become infected. If all children entering the orphanage and those there now were to receive the Hepatitis B vaccination series, they would be protected for life from contracting this disease. According to the Hepatitis B Foundation, it is safe to vaccinate children (although it will not prevent the disease) even if they are already infected with the virus, so routine prescreening would not be needed. It is my hope that someday in the near future all referral medical reports will include not only testing for the hepatitis B antigen, but also a titer proving the child did in fact receive the vaccination and has developed an immunity to the virus.
I have several questions I would like to ask you…
1. Do you already have a Hepatitis B vaccination in place in your orphanages? If not, would you be willing to implement one?
2. If you do not already have a program, what barriers do you or your Vietnamese representatives anticipate to starting such a program?
3. How many of your children have been negative at referral for the Hepatitis B antigen but tested positive in the United States?
4. Do you currently have any teaching/education for the staff/caregivers on the use of universal precautions, how this disease is transmitted and how to prevent transmission through blood to blood contact?
I appreciate your time, and I will be contacting you by phone if I do not hear back from you via e-mail. I think this is such an important issue. I want everyone to know Hepatitis B is easily preventable and no child should have to needlessly be infected by this virus. It is my sincere hope that no other adoptive parents have to find out their child is positive, but more importantly I hope vaccination in orphanages becomes the standard practice by all agencies thereby preventing this disease for all of our children.
Here are some of the concerns I have heard so far:
*cost
(which I do not accept, we paid our agency $15,000 when we accepted our referral)....according to the Hepatitis B Foundation the 3 series shot (in the US) ranges from $75-165. Even if the drug company was unwilling to provide the vaccine at a discounted rate, my fee more than pays for the vaccine even at the higher rate). There would of course be other costs, training, storage, transportation etc, but the cost still is not prohibitive considering the fees families are already paying.
*Lack of training of staff
*Lack of willingness to follow sterile technique when giving injections (ie re-using needles) and unwillingness to use universal precautions
*storage difficulties-According to paper found at http://www.childrensvaccines.org/ (an organization that advocates immunizations for the children of the WORLD), the Hepatitis B vaccine can last for up to 4 years if stored at 2-8 degrees Celsius (approx 36-46 degrees Fahrenheit--it is damaged with freezing and should not be used), but a study conducted in China found that the vaccine stored at room temp. for up to 3 months was as effective as one stored at the recommended 2-8 degrees Celsius. The paper also states that the vaccine is one of the most heat tolerant and most manufacturers now use a visual system that allows workers identify easily if the vaccine has been damaged by heat and is safe to use.
They also feel a pilot program is needed to prove a program such as this is effective.
-so far the only agency that has contacted me that already has a vaccination program established is Holt International. I have asked several questions about implementation and the contact there said she would get back to me after talking to the Vietnam rep. She did say they work with the local hospitals/clinics to immunize the children.
The biggest concern I have that was pointed out was the importance of not trying to implement anything to soon and fail. I was told once something like this fails in Vietnam they basically say "we already tried that, it didn't work" and won't revisit the idea. Again, I do not have all the answers, I am not a doctor and I have no experience with setting up vaccination programs. I am not an expert on Vietnam or the orphanages, that is why I think it's imperative the agencies get involved in this endeavor. They are already established, have contacts in the area and hopefully have the desire to protect the health of the children.
I was also given a link to an article from June 2007 regarding the safety of Hep. B vaccinations in Vietnam. Several batches were believed to be tainted after 2 children died and an investigation was underway. I agree that is tragic and I am glad they stopped the use of those batches, but I do not believe that's a big enough reason to say "it's better to wait and vaccinate in the US". Even if you didn't feel comfortable using vaccine produced in Vietnam, use a US manufacturer and have it shipped to Vietnam (which would increase the cost, but again we are paying tens of thousands of dollars EACH to these agencies. I realize they have other projects that money is ear marked for, but this is also important). These children are at highest risk while they are in the country, this is when they NEED to be vaccinated....the earlier the better!
So far I have gotten replies from 5 of the 25 inquires I sent out. One was very positive about the program and stated cost was not a factor-they would be willing to pay for the vaccine if a program could be implemented, then there was HOLT who already has a program and the other two-1 of which was very negative about the feasibility of a program working and the other stating cost was a prohibitive factor (I spoke to the 5th agency by phone ... which is how I started out my initial contact....and that person did not not know much about the program). My own agency has yet to respond to my e-mail.....
Here is a copy of the letter (with identifying information removed) I have sent to all the agencies
Hello. My name is Tracy X, and I am writing to advocate for a Hepatitis B vaccination program to be implemented in every Vietnamese orphanage with which your agency works. Hepatitis B can be a devastating disease to adopted children and their new families. Many babies from Vietnamese orphanages are infected with this virus, but what makes it so sad is that it is a very preventable disease. The Hepatitis B vaccination is readily available and safe. Moreover, simple universal health precautions, such as not re-using needles, can go a long way in preventing the virus spreading.
Did you know a child born to a Hepatitis B antigen-positive mother that is given the Hepatitis B immunoglobulin (HBIG) shot and the first dose of the Hepatitis B vaccination within 12 hours of birth has only a 5 percent chance of developing chronic hepatitis? Yet without these shots approximately 90 percent will develop chronic hepatitis. One of the biggest predictors of whether a person will develop chronic hepatitis is the time in his life he is exposed to the virus. If exposed during infancy 90 percent will develop chronic hepatitis. That number drops to 30-50 percent if exposed as older children, and only 10 percent of adults who are exposed to the virus will become chronically infected. Therefore, the need for vaccination as early as possible is paramount in protecting all children. Due to the nature of this disease, treatment with available medication is rarely an option for those infected as infants or children, so they end up living their lives knowing they are infectious to others and are often stigmatized by society or peers. The long-term complications of this virus are cirrhosis of the liver, liver failure and liver cancer. Eighty percent of all primary liver cancers are due to this virus, with a five-year survival rate of less than 10 percent.
My child, who was adopted in from an orphanage near Hanoi, Vietnam, tested negative for the Hepatitis B Virus (HBV) at 3 months of age when the adoption physical was completed. Less than six months later it was discovered, during routine international adoption lab work here in the U.S., that my child is HBV positive with a very high viral load . The antigens that were tested for at 3 months of age (which are only present when there is active disease) are detectable within 4-6 weeks after exposure to the virus, so most likely the exposure was not by a birth-mother but at some time after that first test. I believe (although we will never know) my child was exposed sometime after this initial testing during an illness or hospitalization or by an infected caregiver. If our agency and/or the orphanage had participated in a routine Hepatitis B vaccination program, our baby would not have become infected, even if exposed to the virus. Three small shots could have saved our baby from a lifetime of blood tests, liver ultrasounds, potential liver cancer and the stigma of having this disease. That is why it is my goal to ensure this does not happen to any other children. Although it was shocking to find out our child is positive for this disease, it is our child who will live his/her life dealing with the consequences of what that entails. I would love to see every Vietnamese child living in an orphanage be vaccinated.
This is such an easy and doable plan. If every child who is estimated to be less than 12 hours old at the time of relinquishment or abandonment were given the HBIG shot and the three Hepatitis B vaccinations, most would never become infected. If all children entering the orphanage and those there now were to receive the Hepatitis B vaccination series, they would be protected for life from contracting this disease. According to the Hepatitis B Foundation, it is safe to vaccinate children (although it will not prevent the disease) even if they are already infected with the virus, so routine prescreening would not be needed. It is my hope that someday in the near future all referral medical reports will include not only testing for the hepatitis B antigen, but also a titer proving the child did in fact receive the vaccination and has developed an immunity to the virus.
I have several questions I would like to ask you…
1. Do you already have a Hepatitis B vaccination in place in your orphanages? If not, would you be willing to implement one?
2. If you do not already have a program, what barriers do you or your Vietnamese representatives anticipate to starting such a program?
3. How many of your children have been negative at referral for the Hepatitis B antigen but tested positive in the United States?
4. Do you currently have any teaching/education for the staff/caregivers on the use of universal precautions, how this disease is transmitted and how to prevent transmission through blood to blood contact?
I appreciate your time, and I will be contacting you by phone if I do not hear back from you via e-mail. I think this is such an important issue. I want everyone to know Hepatitis B is easily preventable and no child should have to needlessly be infected by this virus. It is my sincere hope that no other adoptive parents have to find out their child is positive, but more importantly I hope vaccination in orphanages becomes the standard practice by all agencies thereby preventing this disease for all of our children.
Here are some of the concerns I have heard so far:
*cost
(which I do not accept, we paid our agency $15,000 when we accepted our referral)....according to the Hepatitis B Foundation the 3 series shot (in the US) ranges from $75-165. Even if the drug company was unwilling to provide the vaccine at a discounted rate, my fee more than pays for the vaccine even at the higher rate). There would of course be other costs, training, storage, transportation etc, but the cost still is not prohibitive considering the fees families are already paying.
*Lack of training of staff
*Lack of willingness to follow sterile technique when giving injections (ie re-using needles) and unwillingness to use universal precautions
*storage difficulties-According to paper found at http://www.childrensvaccines.org/ (an organization that advocates immunizations for the children of the WORLD), the Hepatitis B vaccine can last for up to 4 years if stored at 2-8 degrees Celsius (approx 36-46 degrees Fahrenheit--it is damaged with freezing and should not be used), but a study conducted in China found that the vaccine stored at room temp. for up to 3 months was as effective as one stored at the recommended 2-8 degrees Celsius. The paper also states that the vaccine is one of the most heat tolerant and most manufacturers now use a visual system that allows workers identify easily if the vaccine has been damaged by heat and is safe to use.
They also feel a pilot program is needed to prove a program such as this is effective.
-so far the only agency that has contacted me that already has a vaccination program established is Holt International. I have asked several questions about implementation and the contact there said she would get back to me after talking to the Vietnam rep. She did say they work with the local hospitals/clinics to immunize the children.
The biggest concern I have that was pointed out was the importance of not trying to implement anything to soon and fail. I was told once something like this fails in Vietnam they basically say "we already tried that, it didn't work" and won't revisit the idea. Again, I do not have all the answers, I am not a doctor and I have no experience with setting up vaccination programs. I am not an expert on Vietnam or the orphanages, that is why I think it's imperative the agencies get involved in this endeavor. They are already established, have contacts in the area and hopefully have the desire to protect the health of the children.
I was also given a link to an article from June 2007 regarding the safety of Hep. B vaccinations in Vietnam. Several batches were believed to be tainted after 2 children died and an investigation was underway. I agree that is tragic and I am glad they stopped the use of those batches, but I do not believe that's a big enough reason to say "it's better to wait and vaccinate in the US". Even if you didn't feel comfortable using vaccine produced in Vietnam, use a US manufacturer and have it shipped to Vietnam (which would increase the cost, but again we are paying tens of thousands of dollars EACH to these agencies. I realize they have other projects that money is ear marked for, but this is also important). These children are at highest risk while they are in the country, this is when they NEED to be vaccinated....the earlier the better!
So far I have gotten replies from 5 of the 25 inquires I sent out. One was very positive about the program and stated cost was not a factor-they would be willing to pay for the vaccine if a program could be implemented, then there was HOLT who already has a program and the other two-1 of which was very negative about the feasibility of a program working and the other stating cost was a prohibitive factor (I spoke to the 5th agency by phone ... which is how I started out my initial contact....and that person did not not know much about the program). My own agency has yet to respond to my e-mail.....
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