CDC
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.
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.
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.
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.
Vaccine court, autism, and vaccine safety concerns
The current ruling from the vaccine court denying families of autistic children their right to compensation made headlines this week. Most of the headlines and comments show that most people really do not understand the “vaccine court” or the ruling. I understand the vaccine court very, very well. I want to share my perspective on this controversial topic.
The Vaccine Immunization Compensation Program (VICP) is the actual name for “vaccine court”. “Vaccine court” is a term created by the media. This program was created by Congress in the mid-80’s as a response to the overwhelming number of children injured by the DPT vaccine (mine being one of these children). The pharmaceutical companies told Congress that if they were at risk of being sued in civil court by these families they would simply stop making vaccines. With the overwhelming threat of a renewed emergence of infectious disease, Congress created the VICP to provide liability protection for pharmaceutical companies as well as compensation to families whose children suffered vaccine injury.
The court is not really a court…it is a system designed in which the government is represented by a league of Department of Justice attorney’s, who are paid regularly and who have full access to expert witnesses. The judges aren’t judges at all, but Special Masters who preside over the case. Any family making a claim must have their own counsel (referred to as petitioners and not plaintiffs as in a regular court system). Their counsel and their expenses are not paid immediately, but sometimes several years after the outcome of the case is decided.
One significant difference to this Program versus the civil court is that a ruling in favor of the petitioners is determined by a preponderance of the evidence (or, as attorney’s would say it’s 50% and a feather). The families only have to show that it was more likely than not that the vaccine caused the injury. This is a much looser standard than in civil court.
So, that is the VICP 101. Congresses intent with this program was two-fold. As I mentioned earlier to provide liability protection to pharmaceutical companies. The other goal was to provide quick, generous compensation to injured children. It was not intended to be the scientific proving ground for every single vaccine event. That is what clinical trials and scientific studies are for. It is not to be a political arena that uses injured children as pawns in a game to shield the government or the manufacturers from taking responsibility for inadequate research and science.
The ruling was a sad day for many. I, like many, believe that vaccines have caused a great deal of harm. I do not know the science well enough to explain this, but I believe parents who tell me that one day their children were fine, they got vaccinated and the next day they were sick. It happened to Quincy (this has not been disputed) and it happens all the time. These families struggle to raise their children and endure immense medical costs. They need help. They do not need a big, public and political battle that protects the greedy and the corrupt.
Parents aren’t stupid. We are smart enough to know when we’ve been played. The government and the pharmaceutical companies took care of themselves and covered their asses while those with the least amount of political power, money or influence…every day folks like you and I…just got hung out to dry. This shouldn’t have been about making a scientific statement about vaccines and autism…everyone on all sides of this debate are a long, long way from being able to do that, despite what they might tell you. This should have been about deciding whether it was “more likely than not” that the vaccines caused some neurological injury to these kids. The system is so broken that they couldn’t even get to the heart of the matter.
I know so many of the players in this drama…program directors at HHS and CDC, DOJ attorneys, Special Masters. Individually most are all good people, but collectively they disappointed me last week. I also know the players for the families, the attorneys who have been working on these cases for nearly seven years without being paid and the families who so desperately need help raising their children and my heart breaks for them.
If the government and the pharmaceutical companies think this issue has been put to rest, they are sadly mistaken. Bad rulings like the ones last week only fuel the flames of distrust among the public. Families are asking for answers to the questions about whether vaccines are really keeping our communities safe or whether they are the reason why we are raising the sickest generation of children in history. Until the government is willing to conduct independent research that is not influenced or funded by the pharmaceutical companies and their deep, powerful pockets, I am afraid we will never know.
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National Vaccine Information Center (NVIC)
