vaccine safety
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.
Important meetings on vaccines and vaccines safety, including the H1N1 vaccine, Sept 15-16 and 17-18
I am heading out early Sunday morning for a week of meetings in DC. The National Vaccine Advisory Commission (NVAC) meeting will be Sept 15-16 in Washington, DC. Pre-registration for those who wish to attend in person closed on Thursday because the conference room was filled to capacity. Up to 500 participants are expect by phone. Because of the unusually high interest (due mostly to the H1N1 vaccine) this meeting will also be webcast. The meeting agenda and webinar information can be found on the National Vaccine Program Office (NVPO) website.
The quarterly meeting of the Advisory Commission on Childhood Vaccines (ACCV) will be held Sept 17-18 in Rockville, MD. Meeting information, including the agenda and call-in info, is supposed to be available at the Vaccine Injury Compensation Program (VCIP) website, although at last check nothing had been posted.
This will be my last meeting as a consumer representative on the ACCV and my first meeting a voting member and consumer representative for NVAC. Consequently, I will be in DC all week. Although I have good intentions of writing on rubysoup, I know the reality is that I won’t have the time. These trips are jammed pack with little to no downtime, so you probably won’t hear from me until the week of Sept. 20.
Back to the vaccine safety battle…
I was back in Washington, DC again last week focusing on my vaccine safety work. The quarterly meeting of the Advisory Commission on Childhood Vaccines (ACCV) was held on June 4-5 in Rockville, Maryland. My term on this commission was supposed to only be three years, but that mark has come and gone and my replacement has not yet been named, so as long as I am the official consumer representative I will continue my efforts.
I often refer to my work on vaccine safety as a battle and I believe that is a fair term. There are definitely very strong divisions amongst the stakeholders and although we can find common ground it’s probably fair to say our differences far outweigh our agreements. So, in the arena that I participate it is a polite battle or a negotiation, if you will. I always tell my husband that I will do this work as long as I feel like I am effective, I am making a noticeable difference in progressing the safety of vaccines, and that I am not wasting my time, my family’s time or my family’s resources. I’m sure it’s not surprising that I assess these criteria frequently.
For the past year the major focus of my work has been on the Vaccine Safety Work Group (VSWG) for the National Vaccine Advisory Commission (NVAC). This work group has been asked to write a two-part White Paper that focuses on the issue of vaccine safety. I won’t bore you with the details of our work…if you are interested in what we have done thus far you can check out our recommendations for the first half of our task on the NVAC website. But, what I do want to share is that I have spent countless hours in the past year on this project…most of this time is unpaid, volunteer work. As a work group we only make recommendations to the committee that we report to and then hope that they will accept our work, pass our recommendations, and then move them to the Assistant Secretary for Health and Human ASHH) Services. Our VSWG recommendations included language that we really labored over, and included issues that really push the Center for Disease Control (CDC) to take a serious look at the issue of vaccine safety.
On June 2 the NVAC voted unanimously to accept our recommendations. It was really exciting to see that our work held up with minimal change will be moved on as recommendations to the ASHH. It told me that I did not waste an entire year of my life, time away from my family, and even personal financial expense to do this work. Perhaps the pieces of the work that mean the most to me will not hold up beyond this process….that is a very real risk. But, it held up far enough into the process to make a difference. It becomes public record. It will become part of a correspondence with decision makers at the CDC. It will become part of the historic record. That is why I do this work. And that is why I will continue to do it for a while longer.
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!!
Why does “advocacy” feel like a polite word for “fight”?
It occurred to me this morning, on the heels of yet another issue with Quincy’s bus transportation, that being an advocate is really nothing more than being a warrior for my daughter. Problem is, it is tiring being a warrior all the time. Parents raising kids with disabilities will tell you that if you simply trust the systems to do what is best for your child, the system will inevitably fail you. I have yet to encounter a system, be it transportation, education, insurance, medical, etc… that has done the right thing for my daughter unless they were pushed to do so.
This is not to say that there aren’t good individuals within these systems that make every effort to do what is right. In fact, if it weren’t for these people, who work within and know what should be done, then my fights would be much more difficult. For effective advocacy you first have to find these people, build relationships with them, do all you can to show them you are smart and reasonable and not a crazy lunatic, and then assess when it is appropriate to seek their help and when it isn’t. If you complain too much or too often that diminishes your credibility. But, if you are too quiet and don’t speak up enough, you are labeled a pushover. You have to find the line and walk it carefully.
But, this is not a post about how to be a good advocate, but more a rant about why my life has to be so much about advocacy, or polite fighting. I don’t want to fight for proper transportation, I don’t want to fight for an appropriate transition to high school, I don’t want to fight the federal government to stop making vaccines that cause horrific collateral damage to innocent children, I don’t want to fight my insurance company to pay for durable medical equipment. I don’t want to fight at all. I want to watch my children grow and learn and be challenged. I want the world to be a safe place. I want people to respect the needs and rights of those who need help.
If I give up the fight (which I am very, very good at) then there is one less voice out there standing up for those who can’t stand up for themselves. I am not an advocate by choice, but by necessity. I did not ask for this job, it was thrust upon me when Quincy took the fall so other children could be protected from pertussis. Today, I resent my role. Tomorrow, maybe not. One thing is for sure, whether I like it or not, I will never stop fighting for my daughter. I can only hope that the battles that I win today will make the world a better place for others tomorrow.
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.
Rubysoup to be a guest blogger on Drgreene.com next week!
The downside to advocacy work is that it often takes me away from my family and my family needs me very much. Raising Quincy is too much for one person to do alone, so when I am gone a great deal of work falls on my husband’s very broad shoulders. I also suffer great anxiety when I am far from home. If she became ill or had a serious problem I am too far to simply hop a quick flight home. It’s no wonder I am afflicted with chronic “hotel insomnia”. I simply cannot sleep or relax when I am away from my family, no matter how nice the accommodations may be.
The upside is the amazing people I have had the opportunity to work and develop relationships with. These are inspiring, dedicated professionals from all walks of life and all sides of the issue of vaccine safety that I have come to admire and respect. My network is vast and I am quite humbled by those who consider me a peer.
As a participant of the Salt Lake City writing group for the National Vaccine Program Office earlier this month I was lucky enough to meet Dr. Alan Greene. Dr. Greene is an wonderful, caring pediatrician from California who has developed some amazing tools that allow him to be more available to his patients. He has published books and created a website full of great tips and information for parents. Dr. Greene invited me to be his guest blogger for a week to share my perspectives on disability awareness and sensitivity. My posts will run every day during the week of March 9-13 on his website drgreene.com. Some of the posts will be familiar to faithful rubysoup readers, but I did take the time to rework them in hopes of making them more relevant to a broader audience. And I have learned that going back and editing my writing is a definite must…everyone needs an editor!
So, I encourage you to check out Dr. Greene’s website next week and let me know what you think. I am excited about this new opportunity and the chance to speak to a larger, more diverse audience. I look forward to your comments and feedback!!
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.
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National Vaccine Information Center (NVIC)
