vaccine
PBS interview on H1N1 vaccines and adjuvants
I have been an advocate for vaccine safety for many years. I have been able to influence policy-level change for vaccine safety by my efforts on federal commissions. But this effort is led by all kinds of advocates and we all bring unique strengths to the table. One thing I haven’t had much experience with, mostly by choice, is working with the media. I generally defer media inquiry’s to those who are more of a public voice for our movement. Barbara Loe Fisher, Jenny McCarthy and others have done a magnificent job of raising public awareness.
As I get further into this process I find myself speaking with the press. My most recent opportunity was last week with a correspondent from PBS who works with Jim Lehrer on the News Hour. She wrote a piece focusing on a controversial concern among safety advocates…the potential inclusion of unlicensed adjuvants into vaccines. In order for a vaccine to work, it has to have a substance in it that hyperstimluatesthe immune systems. Egg-culture vaccines usually rely on aluminum to do this. The newest technology are adjuvants. Adjuvants allow for rapid manufacturing of a vaccine using little antigen. The safety profile of adjuvants has yet to be established. The FDA has yet to grant approval for the use of adjuvants in any US product. Additionally, there is some evidence to show that adjuvants were experimented with in the anthrax vaccine and some who believe this is the cause of Gulf War Syndrome. If you are interested in more on that, I suggest reading Vaccine A by Gary Matsumoto.
With the growing demand for the H1N1 vaccine and the limited supply, the concern for safety advocates has been focused on the potential use of unlicensed adjuvants in H1N1. The CDC has stated from the start of the campaign that they would not do this, but as the supply has been slow it’s been a concern. And with H1N1 being declared a national emergency, it would be easy for the government to issue an Emergency Authorization to allow the use of an unlicensed adjvant in the production of the H1N1 vaccine.
Here is the link to the article written by PBS on this topic, which includes statements from my interview with her.
http://www.pbs.org/newshour/updates/health/july-dec09/adjuvants_11-09.html
4th International Public Conference on Vaccines and NVAC webcast link
It’s a gorgeous day and it’s been a good week. The bus situation seems to be back to normal and I will be thankful for each day that goes by smoothly. Quincy has been quite healthy and happy this week and we have gotten back on a schedule that weans her off Depakote. We are just going slow and making very minor drops to the dosage and she is handling it well.
My other children have struggled with feeling lousy this week. I believe the over-hyped H1N1 scare doesn’t help. The school district and the schools have gone overboard to sound the alarm and, in my humble opinion, have scared the crap out of the kids and their parents. Any poor child who sneezes is sent home. My kids are healthy and tough, but they have been sent home from school more this week than any other time that I can remember. It’s rather absurd, but better safe than sorry I supposed.
My whole world of vaccine advocates is converging in Virginia today for the 4th International Public Conference on Vaccines being put on the agency that I volunteer for, the National Vaccine Information Center. I am sad to be missing the event this year, but I have been to DC nearly once a month since June and just couldn’t squeeze in yet another trip. But this would have been a good conference to attend and I hope to make it next year. I hear that it is incredibly energizing and uplifting to spend two days surrounded by people as passionate as I who work on the same issues. I have so many contacts and friends across the country that I work with daily on this issue that I’ve yet to meet in person. So, next year this will be a must-do for me.
I am posting a link to the webcast from my last two-day meeting in DC. It’s probably quite boring for most of you, but it does prove that 1) I actually do work when I go on these trips and 2) that this work is important and complicated. At the start of the first day I was officially sworn into my new position by the Assistant Secretary of Health and Human Services and towards the end of the second day I ranted a bit to the CDC about the safety profile of the H1N1 vaccines. So, I suppose those are the “highlights” from two very boring webcasts. If you find yourself with insomnia, you might want to view them by clicking here.
An inspirational reminder of the potential of disabled children
Last week marked the end of another successful school year for my children. It’s hard to believe we are already in to our summer vacation. Having my family around 24-7 and enjoying endless warm, sunny days has thrown a bit of a wrinkle into my writing schedule. I can see that I am going to have to be a bit more disciplined in carving out time to write and share.
I do not have hands-on experience with autism, although I advocate endlessly for families who have concerns regarding autism and the possible link to vaccines. It is not a world I live in, but I have many friends who are raising amazing children who have autism or are on the spectrum. A very dear friend and colleague of mine, who lives in Virginia, has been quite an inspiration to me in my work. Her son, Sam, has profound autism. She faces a daily, on-going struggle to raise Sam and develop his full potential. Technology has allowed me to form strong bonds with many people, like Vicky, but does limit my ability to interact with their families and their lives. I have never met Sam, but I know much about him.
One day Sam told his Mother that Hotel California was his favorite song. He had apparently heard it on the radio. After hearing 3-4 more times, he sat down at his piano and played a nearly flawless rendition of the entire song. Whether you are raising a child with disabilities or not, you must watch Sam’s performance…you will be moved by the genius that is within this boy who, in many ways, is locked away from the world.
Here is what Vicky sent me, including a link that will allow you to watch Sam’s moving performance.:
Click here for the Age of Autism story and clips related to Sam’s
outstanding performance before a large noisy crowd at the Autism One
conference in Chicago on Saturday, May 23rd. This was his national
debut and there were at least 500 parents and professionals in the
audience and he was a calm and composed as can be.The link also goes to an essay that I wrote about one of the songs
that Sam sang, U2’s, Sunday Bloody Sunday, a well-known political
protest song. As I expected, this song sent the crowd over the top.
The autism community - especially those of us whose children were just
fine until they got a set of vaccinations - are about as battle-weary
as can be. My essay, titled “How Long Do We Have To Sing This
Song” (a line from the song) reflects that state but it also states
that the vaccine-injured communities are still engaged and will
continue to fight for the basic human right to voluntary, informed
consent based on sound science and not ideology. As I gear up for my
next round of meetings with Federal officials to overhaul the broken
vaccine safety system, just know that Sam’s courage and songs like
Sunday Bloody Sunday are the fuel that keeps me going and renews my
commitment to make sure that the system protects the health of everyone.In case you missed the original piece that got this whole thing going
- here’s the Hotel California link that is referred to in the
introduction.Also, Sam has now been asked to play at two additional national
conferences: National Autism Association, Ft. Lauderdale, FL 11/12-15
and the 4th International National Vaccine Information Center
conference, Reston, VA 10/2-4.And, lastly, he’s been asked to host a monthly radio show on Autism
One radio - he want’s to call it “Jam With Sam”.
My thanks for Sam and Vicky for showing us that we can never underestimate the true potential that lies within our children with special needs and for reminding me why my work is important and necessary. Sam, you are a star!!
Autism: building a network for information and support
A lot of people have stumbled across my blog in the past months…the reasons that bring them here vary. Whatever the reason, I am hopeful that the information I share is helpful. One thing I have noticed is that many people who are drawn here are raising kids with autism. Today children are being diagnosed with autism at an alarming rate, 1 in 150…a level that has been described as epidemic.
Quincy is not autistic but the struggles and challenges that I face raising her are shared by anyone raising a child with disability. I am pleased that parents dealing with autism have found my site and I want to offer them as much assistance as possible in building their own support network. Since April is Autism Awareness Month it seems like the perfect time to share what I know.
My work in the field of vaccine safety has given me the opportunity to meet amazing people devoted to finding answers to this epidemic. We are joined by our concern that vaccines might be connected to autism and, in the case of Hannah Poling, we have learned that this concern is legitimate. Their focus isn’t just about vaccines, but support, education and advocacy for families, as well. So, if you haven’t already I would encourage you to check out the websites of the following organizations:
TACA Talk About Curing Autism (Families with Autism Helping Families with Autism)
Generation Rescue (autism is reversible)
Autism Speaks (its time to listen)
Safeminds (Sensible Action for Ending Mercury-Induced Neurological Disorders
Age of Autism (Daily Web Newspaper of the Autism Epidemic)
This is a list of the connections that I have to this world. Each of these groups has a different approach to their work, but they are all connected by their passion to bring understanding and answers to the questions surrounding autism. I know there are other worthy organizations and would encourage my readers share those they find helpful. These are simply the groups that I work with, that I have contacts with and that I respect. If you are raising a child with autism I hope this adds to your own personal support network.
Chickenpox shot clinics in our schools?!?!
Okay, I really thought I would be finished expressing my concerns about the new mandate in Alaska that requires all school-aged children to have a chickenpox vaccine. Honestly, I was going to be finished. But then the cutesy little school newsletter comes home yesterday and announced that my children’s school will be hosting a free chickenpox shot clinic during school next month. Oh…My…God! So, I am once again compelled to discuss my concerns about this mandate and this strategy to meet the mandate.
I understand the schools are trying to make this as easy as possible for those who are comfortable with the vaccine and I can respect that. However, my concern is that parents really aren’t being informed as fully as they should be about the disease, the vaccine and the possible side effects. What happens if a child suffers an immediate and severe reaction to this vaccine being administered at school without their parents around? Who is going to document just what occurred and when? Why should parents feel pressured to allow medical services to be provided to their elementary aged-children when they are not present?
Let’s talk about chickenpox. I am baffled as to the sudden concern about children NOT getting the chickenpox when it used to be that parents exposed their children so they WOULD get the disease and thus create their own natural immunity to it. Chickenpox is rarely serious and mostly just inconvenient. An antiviral medication can be administered to treat chickenpox so that the disease runs a very mild course. Now, let’s talk about the vaccine. It contains the live virus, sugar, saline, gelatin, MSG, potassium, human DNA cells, EDTA, neomycin, and cow fetus serum. Animal and human tissue that we hope to Hell has been screened for any infectious disease. In the late 50’s and early 60’s some of the monkey tissue used for the production of the polio vaccine contained the SV-40 virus which is known to cause certain types of tumors and cancer. Let’s hope the screening of the tissues used today is effectively catching our most serious viruses, such as Mad Cow Disease.
If you chose to vaccinate for chickenpox I would encourage you to accompany your child to your pediatrician. Make sure they are healthy and not fighting any bugs. Read all the paperwork and witness the administering of the shot. You should spend time with your child afterwards to make sure they aren’t having some kind of reaction. If they do have a reaction, you need to document it, get your child back to your doctor and make sure they are treated immediately. You need to be sure the reaction is reported to VAERS which is the CDC database that tracks reactions to vaccines so they can be further studied.
Vaccinating for the sake of convenience troubles me. But, what troubles me even more is systems put into place that allow for drive-by or mass vaccinations of children while their parents are absent. Unfortunately, some families will pay much too high of a price for such convenience.
February 4–Public meeting of the National Vaccine Advisory Committee Vaccine Safety Work Group
If you have an interest in vaccines or vaccine safety and the direction of this very controversial topic within the Centers for Disease Control (CDC) then I strongly encourage you to participate in the National Vaccine Advisory Committee Vaccine Safety Work Group meeting next week. I have learned the tremendous value of public input into the policy making process. President Obama has stated strongly his expectation that government agencies engage in active and on-going public engagement as a tool to develop an open and transparent government. Political differences aside, you must appreciate how the encouragment of public involvement is beneficial to all of us…but only if we are willing to step up and get involved.
Assuming most folks won’t be in Washington, DC on Wednesday here is the necessary contact information for our meeting:
February 4 — Public Meeting of the NVAC Vaccine Safety Working Group
On February 4, 2008, the NVAC Vaccine Safety Working Group will hold a half-day public meeting in Washington, DC from 8:00am to 12:30pm EST to discuss the outcomes of the three public engagement sessions (Birmingham, Alabama; Ashland, Oregon; and Indianapolis, Indiana) and written comments received by HHS is response to our Request for Information. If you are interested in attending this meeting and have not registered, please do so by contacting Ms. Kirsten Vannice, at kirsten.vannice@hhs.gov. Interested individuals can also sign up for public comment, on a first come first serve basis as time allows. If you are interested in providing public comments, please indicate an interest in doing so in your registration email. If you cannot attend but would like to listen to the meeting, you can do so by calling 888.469.2187, participant passcode 2973732. The meeting will also be webcast. The link for the webcast will be posted here before the meeting. Following this meeting, NVAC’s Vaccine Safety Working Group will develop and issue its initial review focused on gaps identified in the draft ISO scientific agenda. This review will be available on this website prior to the Stakeholder Meeting in mid-March.
Additional information about the continuing work of the VSWG can be found at the NVAC website found at this link: http://www.hhs.gov/nvpo/nvac/PublicEngagement.html Also, in my capacity on these commissions my job is to represent the views of those concerned about vaccines and vaccine safety. Feel free to contact me and I will make every effort that I can to make sure your voice heard. I can be reached at tawnyb@gci.net.
“Vaccines get new scrutiny” article–U.S. News & World Report
At this point, most of my readers know that I am an active advocate for vaccine safety and that I work with the Department of Health and Human Services on this issue. To know me is to understand that I am passionate about this topic. I believe much can be done to improve the current system we have in place for vaccines…to improve their efficacy and their safety for our children.
The U.S. News and World Report just published an online article (I believe it maybe be published be in the February 2009 issue) on the current scrutiny of vaccines which can be read at http://health.usnews.com/articles/health/childrens-health/2008/12/11/vaccines-get-new-scrutiny.html. I was interviewed for this article and cited, ever so briefly, at the end. Overall, I would say it is a fair article about vaccines and public concerns…it is certainly better coverage that most mainstream media have given to this topic. If vaccines are of interest to you I would encourage you to take a little time to read the article.
Whooping cough (DPT) vaccine injury
If you have taken the time to read the “author information” section of this website you know that Quincy’s developmental and physical injuries are a result of a vaccine injury…specifically her 2-month DPT shot. This is not the conjecture of a crazy mom…her medical records support this, her pediatric neurologist supports this and the Federal Vaccine Court has conceded this. Quincy is one of those children that most parents do not want to know about…a child who was legitimately and severely injured by the very vaccine that was supposed to protect her from illness and injury. I have much to say on this topic but will share it in bits and pieces as I write this blog. I have learned a great deal of vaccines, much more than I ever cared to know, because of Quincy’s experience. I am active on the federal level working on Commissions and Work Groups that are supposed to deal with the issue of vaccines, vaccine safety and the public mistrust of vaccines. My writings do not reflect the positions of any of the federal agencies that I work with. And, I fear, much of our final work will probably not reflect many of my concerns but that is also for another day. What today is about is to explain why I do the work that I do and why I am sharing so much of my personal experiences with the world in my writing. It is because what happened to Quincy should not be lost…it has to mean something. Her injuries and the challenges she faces in life must be shared to give other parents the opportunity to ask more questions, to learn about the risks and about what can happen when you gamble with the odds and lose. And, if you don’t think you are rolling the dice every time you have your child vaccinated, then you are naive. Maybe I can prevent one more family from losing their perfectly healthy, perfectly beautiful child to such horrific injury. I value education and, in terms of formal education, I have more than most. But what I have learned raising my daughter and from the people who have come into my life because of her is something no textbook or college course could have ever taught me. Quincy is a gift. If you are lucky enough to have the privilege to meet Quincy and to connect with her then your life will be forever changed. She is the strongest, most couragous person I know and she inspires all who take the time know her. The lessons learned from Quincy must be shared and I will do my best to do just that.
Categories
National Vaccine Information Center (NVIC)
