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Forcing vaccinations won’t fix the problem…it simply makes it worse.

The biggest hospital in Alaska has announced that all their nurses must have the flu vaccine before December 31 or they will be fired.  This is troubling.  Obviously the administration at Providence is concerned about the uptake rates of immunizations with their staff.  I can understand that.  But this is the most backwoods, strong-armed tactic I can think of to try to fix this problem.  If you don’t do what we say is best for you then you will be fired…we don’t care about your concerns.  Good luck with that. 

If the hospital is concerned about immunization rates of their staff they then need to get on-board with the groundswell of public concern about the safety of these vaccines.  Rates will not improve until people renew their confidence in the CDC and the safety of vaccines.  The problem is much more complex than something that can be fixed by force.  No one should have to chose between their employment and their very valid concerns for the own health.  People are smart and they have the right to make their own choices when it comes to their personal health.  We have the right to question treatment options.  No one has the right to threaten us in order to force medical decisions upon us.

When will the medical establish and the government realize that in order to keep our communities safe and to maintain on overall high rate of vaccination they MUST make our vaccines safer?  They must listen to the concerns of the public and focus their science on these concerns.  There is no better way to fuel the fire of mistrust of the public than to threaten.  For the sake of every single nurse who works for Providence I hope reason will prevail.  Otherwise good people will lose their jobs or good people will gamble with their health…it’s a lose-lose for anyone who has even the slightest concern about the efficacy and safety of the flu vaccine.

Tags: flu shot, flu vaccine, forced vaccination, vaccines

“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.

Tags: immunization, safety, vaccine, vaccines

The hardship and reward of vaccine safety advocacy

It takes me 12 hours of travel time to get to Washington DC and the same to get back home.  Twenty-four hours of travel to attend 12 hours of meetings.  Don’t get me wrong…it’s worth the effort.  There is simply nothing more powerful than a personal connection when you are working to make significant change on national vaccine policy.  To put a face to Quincy’s story and to engage in intelligent and productive discussions about vaccine safety is invaluable.  But, I liken the effort to childbirth.  Anyone who has had more than one child knows what I mean.  The only reason women go through childbirth more than once is because the joy of having children somehow miraculously replaces the reality of the pain of childbirth.  Basically, we forget…just long enough to find ourselves back in a situation we swore to anyone within earshot we would never, ever do again.  When I am in DC I have the opportunity to work with all kinds of amazing, influential people.  Attorneys who are preparing to argue before the Supreme Court, people who have advocated so effectively on behalf of those who have been injured that they have had movies made about them, Judges who make rulings than can change lives forever, scientists who science I find dubious but nonetheless must grudgingly respect for their own devotion to their side of this issue.  As I sit and talk and work with so many fascinating people I have these moments that seem surreal.  Seriously, I am a jeans and t-shirt soccer Mom from Wasilla who spends more time plowing my driveway with an ATV than I do riding the Metro or wearing a suit.  It’s funny to watch myself navigate this other world that is so distant from my reality.  I am like two completely different people and I know that my worlds will never, ever collide.  No one in my hometown or State really knows what I do and no one in DC will ever venture to Wasilla to see my life.  It’s a funny place to be, but one that I enjoy.  I am so humbled to have the chance to work on the issues that I so strongly believe in.  My input is listened to, considered and ever so often incorporated into the fabric of policy.  It makes what happened to Quincy have purpose…that her daily struggles are not in vain.  We are all handed challenges in life and it’s what we do with them that molds who we are.  I am so angry at what happened to Quincy, but I have to channel my anger into productive change to make sure this will never happen to another family, another child.  So, every few months I drag my butt onto those very long flights, ask my incredible husband to shoulder the ridiculous burden of handling the entire family on his own for a few days, and go back to fight the good fight.  There is not a shadow of a doubt in my mind that it is worth it.

Rubysoup goes to Washington

I usually try to post an entry on Monday or Tuesday of each week.  However, I am in Washington, DC this week doing advocacy work on vaccines and vaccine safety.   My schedule is very, very busy and I will not have time to write until I return.  So, I apologize for the delay and will have a new piece for you to read by the end of the week.  Thanks for your patience.

Vaccines and public concerns

My daughter, Quincy, was injured by a vaccine.  She was a perfectly healthy, happy child and within six hours of her 2-month DPT she began seizing uncontrollably.  The result of that singular incident changed her life and our lives forever.  Because of this, I have devoted myself to holding the government and the pharmaceutical companies responsible for safer vaccines…vaccines that do a better job of protecting our communities from communicable, infectious disease while at the same time not harming our otherwise healthy children.  Until there is a commitment to providing vaccines with as close to 100% effectiveness with zero risk  as possible I will continue my work.  We, as parents, have every right to demand that the bar be raised much higher when it comes to many, many vaccines we are being told to give to our children.  Today I serve as a consumer representative to the Advisory Commission on Childhood Vaccines (ACCV) and as a vaccine safety expert and a consumer representative on the Vaccine Safety Work Group (VSWG) of the National Vaccine Advisory Commission.  Both positions allow me a voice heard by decision makers at Health and Human Services.  It is a difficult task, as my views as a consumer represenatative are generally balanced by multiple representatives from health care, the pharmaceutical industry, and government and my story is not one that is popular.  But, I firmly believe that change will occur and I hope I will continue to be given the opportunity to shape that change.  Although I will not use my blog to persuade your opinion about vaccines in one way or the other, I will use this forum as a way to inform people of the opportunities available to give their own input into the process.  There are many divisions within the government that are working on the issue of vaccine safety and they all, at one point or another, will request public input.  I truly believe in this process and in the importance of people voicing their concerns.  Next week I will again make the very long journey to DC to attend the quarterly meeting of the ACCV.  This meeting is open to the public and allows opportunity for public input.  Specific meeting information, including directions or the toll-free teleconference number, can be found by clicking on my ACCV link.  Additionally, the VSWG will hold a series of public meetings in November, December and January that will seek public input into the Immunization Safety Office 5-year Scientific Agenda.  If you have an interest in participating please find information at the HHS-National Vaccine Program Office website (found by clicking this link).  And, finally, my role is to represent the consumers, people just like you who are raising children and struggling with your own questions about vaccines and their safety.  Feel free to contact me directly to provide input or ask questions and I will be sure that your concerns are heard and your questions are answered to the best of my ability.

Flu vaccine concerns

Today my local newspaper, the Anchorage Daily News, ran a photo of a man in a truck in a snowstorm sticking a bare arm out his window and what I assume is a nurse wearing a winter jacket giving him a flu shot.  I am so bothered by drive-by flu shot operations.  You must understand that I know a great deal about vaccines and the safety issues surrounding them.  I am considered by the Center for Disease Control (CDC) to be an expert on this issue and am currently serving as the consumer voice on two separate Commissions that deal with vaccine safety.  I tell you this to qualify myself as someone who can speak on this subject.  I know how the flu vaccine is developed and understand that the CDC’s initial tests show that the flu vaccine developed for this season should be more effective than last years.  That’s great.  But, what I don’t understand is the casualness with which so many people administer and receive this vaccine.  Before you ever receive any vaccine you should discuss important things with your doctor.  You need to tell your doctor if you aren’t feeling well or have a chronic condition, what other medications are taking, and whether or not you think you’ve ever suffered a reaction to a vaccine in the past.  You should ask about the availability of preservative-free flu shots if you have concerns about mercury (thimerosal), which is still present in all flu vaccines.  Mercury-free flu vaccines are available upon request.  They may cost a little more, but if it eases your concerns it should be worth the additional expense.  I have my own personal feelings about the efficacy and necessity for the flu vaccine, but the only point I want to make today is if you are going to get a flu shot, go to your practitioner and have it administered properly.  My general rule is if someone is going to poke a needle into my skin and inject a foreign substance into my body, you better believe I want to know who they are, what their qualifications are, how sterile the environment is, and to be given the opportunity to discuss whether or not this is the best procedure for my body at that particular time.  And most important of all…I expect to be informed of the RISKS.  I find it hard to believe that all that information is being provided at drive-by and quickie flu shot locations.  Knowledge is power.  Ask questions and be informed.  And, if you doctor is uncomfortable with you doing that then get a different doctor, a better doctor.  In this day and age it’s foolish to place blind faith and trust in anyone, even our doctors.  They should be partners with us for our care, or the care of our children, and that partnership should be based on open, honest communication about any concerns that you may have.  And that absolutely includes vaccines.

Defining developmental disability

One question I am frequently asked is “What does Quincy have?” or “What is her diagnosis”?  The question is a simply one, but the answer is not.  Anyone raising a child with developmental and physical disabilities quickly learns that our children rarely fall into any one well-defined category.  Some children are born with their disabilitiessuch a Downs Syndrome.  Those parents are often prepared prior to birth asto what they can expect.  Many of us are raising children that have suffered some form of a traumatic brain injury (known as TBI in my world) and this makes defining their condition difficult.  Generally, we tell people Quincy has cerebral palsy (CP) because for many this gives them some idea of her limitations.  But, she’s really never been diagnosed that way.  Her body suffered injury from a vaccine and that is rare and relatively undefined.  She cannot walk or talk.  She is strong and flexible and has good tone, but she doesn’t have the ability to use her limbs much.  She has limited head control and some ability to grasp.  She has an excellent swallow reflex which is unusual for a child with her level of disability and we are lucky that she can eat soft-solids and does not need to be fed through a G-tube.  Most people don’t think she has much cognitive awareness and this is often the assumption with children who are non-verbal.  But anyone who thinks that Quincy cannot use her arms or her body in a purposeful way has never tried to feed her when she is not hungry, or tried to comb the back of her hair when it’s tangled.  She can very purposely block the hairbrush with her arm, she can purposely keep her jaw shut when she does not want to eat and she can purposely stick her leg out when she wants to block someone from walking past her (or to trip up one of her siblings).  So, my daughter is complicated.  I know that she processes and understands far more of the activities and conversations around her than most people believe.  In fact, many times people seem to act as if she isn’t in the room and may begin discussing things that are not appropriate to discuss in front of a thirteen-year old and need to be reminded of this.  We are very adamant with her teachers and caregivers to act appropriately around her.  I really hate it when people talk about her as if she is not there or she is so blank that she cannot understand.  I have seen firsthand how Quincy will simply shut-down with people that she does not like or trust and know very well how sensitive she is.  It is a painful lesson to learn that the world seems to have little patience or use for children who are fragile and have special needs.   I believe someday my Quincy will learn to talk and boy, when she does a lot of people are going to get an earful from this child!  There are new technological advances everyday that offer hope to those who are “locked” inside themselves, which is exactly what Rob and I know to be true with Quincy.  I truly hope that in her lifetime she will be able to utilize this technology to share her thoughts with the world.  Until then, I will serve as her voice, the best that I can, to try to teach others what they can learn from exceptional children like Quincy.

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.

Tags: DPT, vaccine, vaccine injury, whooping cough