NVAC
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.
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National Vaccine Information Center (NVIC)
