vaccines
H1N1: What to do to keep our disabled children safe and healthy?
I try not to use rubysoup as an outlet for just my vaccine beliefs, but H1N1 has been pushed to the forefront of our lives and, ironically, for those of us raising children with disabilities it is of even higher priority. Our children have been identified as a high-risk group for H1N1 and, yet, this is not news to us. In fact, our children are a high-risk group for most viral infections, including the seasonal flu. The underlying medical conditions that most of our children face simply make them more susceptible to catching infection and to having a harder time healing once they have fallen ill. This is not the first, nor will it be the last, winter that we will be super vigilant in keeping Quincy healthy…it’s just part of what we do.
With H1N1 it’s very difficult to know how to separate the hype and hyperbole from the truth. It really doesn’t feel like anyone is being terribly truthful. The CDC clearly has an agenda, which is to achieve herd immunity to H1N1 at whatever cost necessary. The public seems unwilling to have their individual health, or the health of their children, sacrificed to achieve herd immunity…many of us want our individual health to be the priority. The media is using this as a political tool, using this singular topic to either support or rail against our current Administration. It’s interesting and frustrating to watch it all play out, particularly for someone who has spent years working on the issue of vaccine safety in an environment where few really cared. Suddenly, everyone cares, everyone is an expert and everyone has an opinion.
But the ultimate question remains: what to do? I try my best to educate people. You should know if you are a high risk group. You should know that being overweight, having underlying medical conditions or being pregnant makes you high risk. You should read the package insert on any drug or medication you are taking, including vaccines, so you understand the risks. You should see a doctor immediately if you are sick…anti-virals have shown to be somewhat effective. You should practice healthy habits, take your vitamins and exercise. You should consult with a doctor or health care provider that will respect your concerns and decisions and is committed to keeping you healthy.
Recently the American Academy of Pediatrics suggested to their membership that if pediatricians have parents who refused to vaccinate their children they should “fire” them as patients. This is an divisive, ugly, polarizing issue. You absolutely will face criticism for whatever decision you make. You should not be afraid. You should not be bullied into doing something you aren’t comfortable doing. I hope we all get through this winter in good health and if you do get sick, I wish you a speedy recovery. I hope that the winter of 2009-10 goes down in history as nothing more than a huge lesson learned about all the facets of immunization and immunization policy, about individual rights, and about informed consent.
H1N1 shot clinics at all of our Anchorage schools is cause for concern for this parent!
I am sending the following commentary to the Anchorage Daily News, but I have little hope that it will be published. I guess the upside to having your own website is that you can be sure your writing gets published somewhere. Since I’ve labored on this for two days, I figure it’s good enough for rubysoup! 
Earlier this month local news reported that the Anchorage School District would be sending home permission slips for parents to allow their children to receive the H1N1 vaccine at school. Few school districts across the nation have opted to run shot clinics in schools. This decision must raise concern among parents regardless of your position on the vaccine. The most obvious question that comes to my mind is why? Anchorage certainly has plenty of health care facilities, private practitioners and pharmacies that I am sure are all willing to provide access to the H1N1 vaccine and are the obvious choice for medical services for our children. When did the school district become such an expert on our children’s health care?
The concerns about the H1N1 vaccine are valid. If the District intends to administer the nasal spray then they will be giving your children a live virus vaccine. Some hospitals in the Chicago area have declined to have their own health care workers vaccinated with the FluMist because of the small, but very real risk, of actually spreading the virus to sick people. According to Tom Skinner, a spokesman for the CDC, “Theoretically someone who had recently received a FluMist vaccination could spread the virus to someone who was profoundly immunocompromised, such as AIDS patients”. How will a school nurse determine whether or not a person is, or is living with someone who is, immunocompromised? The package insert for FluMist does not recommend use in pregnant women because it can cause “fetal harm or can affect reproduction capacity”. What steps will the District take to assure no pregnant students accidentally receive this vaccine?
If the District does not plan to administer FluMist then they will be using an inactivated flu virus by injection. Each injection will contain 25 micrograms of mercury per dose. Is the District prepared to offer a mercury-free version of the vaccine for those parents who object to having a neurotoxin injected into their children? Are they publicizing the availability of this option? If that is not cause for enough concern, how about the fact that to-date there is no clinical trial data on the safety of either vaccine on pregnant women, children with asthma or on the interaction of this vaccine with other childhood vaccines?
Vaccines are a medical procedure. Patients medical records should be reviewed before giving a vaccine to be sure they are not susceptible to having a reaction. Both types of vaccine, for example, are grown in chicken eggs so anyone with an egg allergy should not be vaccinated. Additionally, any underlying or chronic medical condition should be known and discussed with a practitioner prior to vaccination. Will the District have access to our children’s medical records? Who is making sure that parents are given the opportunity to read and review the Vaccine Information Statement or the product inserts? Who will be recording in our children’s charts the shots they received, the manufacturer, the lot number and any adverse event that may occur? Most of the public is aware that we’ve lost our right to sue the pharmaceutical companies or the government when it comes to vaccines, but what happens if the negligence happens at the point of distribution? Will this become potential liability issue for the District?
By providing free, easy-to-access shot clinics in our schools for the H1N1 vaccine, the District is downplaying the serious, valid concerns about safety and necessity of the H1N1 vaccine. Whether or not to vaccinate yourself or your children against a flu that has proven to be relatively mild for healthy individuals is an important decision that should not be made lightly or because of convenience. The Anchorage School District has no business running shot clinics in our schools. They need to use their time, energy and expertise to educate our children and leave medical interventions in the hands of our primary care physicians.
H1N1 and other fears: the complexity of making serious medical decision for our disabled children
Vaccines are my thing…I think most of my readers know this by now. It is what brought me into the world of disability. God (if there is one) gave me a healthy, perfect daughter. It was a man-made whole cell pertussis vaccine that took her from me and led me down the path I walk today. It was my choice as Quincy’s mother to vaccinate her…to do what I thought was best. It turned out to be a bad decision. I no longer take any decision regarding my children’s health lightly. I have learned the hard way that if there is a risk, and there is always a risk, then that risk can become reality in an instant.
Today we face the amped up threat of H1N1 influenza. We have the CDC and the federal government using intense pressure to have us vaccinate ourselves and our children. There are many theories out there about all this. Here are some facts to ponder: The federal government has spent nearly $2 billion dollars to purchase vaccines from pharmaceutical companies. The vaccines began clinical trials two short weeks ago…when they are offered to the public they will be virtually untested and will have a questionable safety profile. Insurance companies have joined with the federal government in the vaccination campaign. Insurance companies do not make money when they have to pay claims for doctor visits, medication and hospital bills. The H1N1 virus is mild at this point in time, but it does take a stronger hold on those with underlying medical conditions.
So, as parents of children who are medically fragile we must face this threat and make our own decisions. Do we use a vaccine that hasn’t been thoroughly tested? Quincy was given a vaccine that had been on the market for almost two decades and still suffered tragic consequences. Do we refuse the vaccine and risk our children getting ill? Who do we believe?
My advice is this…do your homework and educate yourself as much as you can. One thing you can do is watch what is occurring in the southern hemisphere where it is winter (the flu virus thrives in cold weather, which is why it was mostly dormant in the summer) and see what is being reported. In the age of the Internet it is quite simple to read newspapers from all over the world. Watch the trends in your community. Talk to a doctor or health care professional that you trust. Many health care professionals are voicing concerns about using an untested vaccine and you may be surprised at their advice. Purchase lots of hand soap, Purell and Kleenex and teach your children the importance of washing their hands and avoiding the germs of others as much as possible..
Parents shoulder the burden of their children’s health care decisions and it is an enormous responsibility. You must understand that we do the best we can. You have to forgive yourself if your choice leads to a result that you didn’t expect. We don’t always win. Quincy is living proof of that.
Raising children with disabilities and how it can affect a marriage
Summer is such a busy time for my family as it is for all families with children. I’m sure my readers have noticed I have slowed a bit in my postings on my blog. I really hadn’t intended to change the pace of my writing, but can’t believe how quickly time slips by. I was checking the date of my last entry and was stunned to see how much time had already passed.
Making me even busier than usual is the fact that my husband is out of town for more than a week. This is the longest we have ever been apart in twenty years of marriage. Not only do I miss his company, I do find my task of keeping three children alive, healthy and happy that much more challenging as a “single parent”.
Rob and I just marked our 20th anniversary and it seems like a good time to reflect on how raising a disabled child can affect a marriage. When you get married and decide to have children, the image in your head is never the reality, even if you have a healthy baby. Babies are demanding and exhausting. We are inundated with photos of perfectly fit celebrity moms traveling the world with their children and we learn quickly that is far from reality. Without nannies, personal trainers, and assistants raising children is a full-time job that usually requires putting your personal health, fitness and sanity on the shelf for quite some time.
For those of us who are raising children with disabilities, the strain of being a good parent to our other children, a good wife to our spouses and a parent who can handle the daily stress of raising a child with exceptional medical challenges can be immense. I have seen many marriages fail under these circumstances. I did not know when I married my husband what kind of a father he would be…we were young and idealistic and hadn’t faced a single challenge in our lives. There was no way to even begin to predict what kind of partner he would be when faced with the circumstance of watching his firstborn, healthy daughter fall completely apart medically immediately following her first vaccination.
We struggled with guilt, exhaustion, denial, fear, grief. We had to readjust our hopes and dreams, I had to give up a career I loved, my husband had to make career decisions based on what was best for the family instead of what was most personally fulfilling, and our personal fitness and well-being became a distant concern. We had to learn to develop a supportive and loving relationship with each other despite the difficulties that we faced. We had to decide together that this would not take us apart but would make us stronger. In twenty years we have had some dark days, to be sure, and even now we make sure we take time to take care of each other as well as our children.
I do not presume to have the answers to how to hold it together when you face such a tremendous crisis in a marriage. We muddle along the best we can. But, if I do have any advice to share it is this…raising a child with disabilities is hard. It’s messy and scary. Do not let high-profile, successful moms raising children with disabilities, like Jenny McCarthy or Sarah Palin, make you think that it is realistic to have it all. There is a trade-off with every decision they have made. Do the best you can and be proud of who you are. Just as we see our children to be beautiful and smart and delightful we must view ourselves the same way.
Twenty years with my husband is a gift that I will not take for granted because for us this is just the start!
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.
Continued vaccine concerns: Gardasil
I just returned from my Vaccine Safety Work Group meeting in Washington, D.C…to D.C. and back in three days is just plain exhausting, but it was worthwhile.
It seems timely that tonight on the CBS Evening news my friend, Barbara Loe Fisher, is interviewed for a piece on the latest concern in the vaccine world…Gardasil. If you have adolescent children, boys or girls, you should watch this segment. You can find a link to the story at:
http://www.cbsnews.com/stories/2009/02/06/eveningnews/main4781658.shtml
I encourage anyone who is concerned about the HPV vaccine to read and learn all you can about HPV, its link to cervical cancer, methods of preventing the transmission of HPV and the efficacy of the vaccines. I also encourage you discuss your concerns with your doctor. Do not allow the administration of a vaccine to your child that you are not comfortable with…make sure you know the risks and benefits and are making informed decisions.
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.
“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.
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National Vaccine Information Center (NVIC)
