HHS
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.
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)
