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The TRUTH, not fear, about required school immunizations
I know I haven’t written in over a week and I probably shouldn’t come out with an entry that is a little cranky, but as we gear up for the start of school I find myself increasingly annoyed with the volume of ads being generated by our state health department and local school districts about whether or not your child will be allowed to attend school next week if they do not have their (chickenpox) vaccine. That is simply untrue. What bugs me the most is that no one seems to think it important to tell parents they do have the option of filing a religious or medical exemption for chickenpox or any other vaccine. You can request this paperwork from your school nurse or your local health agency or you can find it online at in the Alaska School and Child Care Facility Immunization Manual in Appendix C. I must admit that it took me a while to find these forms on the State’s website…they seem to have them buried.
I understand the push to have children vaccinated, although I will never understand the pressure to vaccinate against diseases that are treatable. To me that is vaccinating for the sake of convenience and not public health. I am sure there are those who disagree and I understand their position…I just don’t think they are right. I believe that parents should have access to all available information in order to make informed decisions about their children’s health. That means ads should not be running that tell parents that their children will be barred from school next week if they do not have their shots. That is nothing more than a cheap scare tactic and it is insulting.
I hope all of my readers will make informed decisions about vaccines and their children’s healthcare. I do not expect everyone to agree with the choices that I make. My intention is only to provide additional important information on this topic. What I would hate is for one single parent in Alaska or anywhere to race out and get shots for their children because they are afraid. Shame on federal, state and local officials who subscribe to the risk communication strategy of fear!! And, it makes you wonder why such a hardline approach? Maybe they are afraid of informed parents asking tough questions about the efficacy and safety of all these vaccines they are pushing on our children. I say, keep asking questions, demanding answers and making federal and state health officials uncomfortable. After all, we are the ones who will have to live with the consequences of our decisions, not them.
Internet issues
I am out of town and having issues with internet access. I apologize for not gettingany posts up this week. I will put up new entries (they are already written) as soon as I have better internet access. Thanks for being patient.
Seizure medication: unfortunate side effects and ineffective control
I mentioned a while ago that we were starting Quincy on a new seizure medication. Her seizure control wasn’t as good as we’d liked and she doesn’t have much room left to move on her Keppra or her Depakote. So, we began the slow process of introducing a new medication. Unfortunately, this didn’t work as we had hoped. Initially the seizure control improved, although in our experience that is a pretty typical initial result for any new medication, but as we continued to increase her to a therapeutic level she began experiencing frustrating side effects. She began sleeping far too much, she completely lost her appetite and began refusing to eat, and we battled constant constipation. I believe the constipation was more a result of her being too lethargic for her body to even function properly.
So, we are now in the slow process of weaning her off this medication. It will take seven weeks to safely take her off this drug. We are three weeks into the process and we finally have our Quincy back. She is alert and happy, has a healthy appetite and her body is functioning regularly. So, looks like we made a good decision.
The only scary part is that as we wean her down and keep her other meds at their current level, we risk an increase in seizures. So far we haven’t had much trouble with this but we have to keep our fingers crossed.
I am off to Salt Lake City for two more days of vaccine safety meetings with the Center for Disease Control. I apologize for not writing more…I have been travelling quite a bit lately for this important work and when I’m home it seems I only have time to catch up with my family and my sleep before heading out again. Hopefully by mid-March my life will slow down a little.
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.
Peer mentors and adaptive ski programs…a cool idea!
We spent another fun weekend skiing with Quincy. We also got a better camera, so hopefully I can post higher quality pictures…I realize a new camera alone isn’t enough for good photos, but it’s a start.
One thing I was struck by this weekend as we were skiing and hanging out at the Challenge Alaska Ski School was that the majority of the clients are adults, but there is always a handful of younger kids skiing, too. It is really cool to see young people on the mountain!
The way it works at Challenge is you purchase a lesson (which includes a lift ticket and gear) for either a half or a full day. The lesson is a one-on-one situation with an instructor. Most instructors are PSIA certified, but not all, so it’s usually important to try to request an instructor with more experience and training. The client and instructor will then hit the mountain together. With clients who have severe disabilities it isn’t uncommon to also have a shadow instructor who helps with chairlift loading and whatever else may come up.
It is a really cool system and it offers a great deal of support and instruction to clients of all ability levels. The one thing I was struck by last weekend is the absence of young volunteers. I would love to see younger volunteers trained as shadows to accompany the younger clients. I mean, our kids are first kids and they like to hang out with their own peer group. I’m sure it’s a little awkward for a teenage to spend the day on the mountain with a 40-year old adult instructor. The instructors are great and they do their best to make it fun, but think how cool it would be for kids to ski with kids their own age? What a fun experience that would be!
I am a huge supporter of peer mentor programs. I don’t see them very often, but when I do I see amazing results. There is so much to be learned from our children by their peer mentors. And interaction with peers provides the opportunity for our kids to take part in activities with people who understand them better than their adult caregivers do. Peer mentor programs require time, money and comittment but I believe they are absolutely worth every effort.
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.
Purchasing durable medical equipment
You wouldn’t believe how much medical equipment we have purchased over the years for Quincy. Therapy equipment, wheelchairs, standers, balls, bolsters, bathing equipment, etc… And many, many wheelchairs…too many to count No matter how great a product sounds you can count on two things…one, it will be incredibly overpriced and two, it will fall short of your expectations. My current problem is Quincy’s wheelchair. It is a fine piece of equipment but maintaining it is another story. It has taken five months, FIVE MONTHS, of badgering the supply company and their wheelchair technician to grow and adjust it properly and the work is still not complete. By the time the tech is finished with her work the chair will need to be grown again! What is the deal with this process of buying medical equipment? First, the prices are insane and it’s frustrating to think that at several stages in the process many people are making money off of our children’s disabilities. I expect people to help me and charge a fair price, but I am sickened by what insurance companies are billed and what is charged for simple equipment. I have a bill in front of me right now for a $175 right footplate for Quincy’s chair (that’s the little metal thing she rests her right foot on), a $175 left footplate, a $156 wheel and almost $170 in labor. That’s a $700 bill to change out the footplates and fix a wheel with a bad bearing. Insane! And, this isn’t the final billing. No wonder my insurance rates are so high. One thing I’ve started doing is finding dealers who are willing to work with me directly. Adaptivemall.com is one of those great places. They have knowledgeable staff and are extremely helpful. I now use them for any purchase that isn’t terribly complicated, such as bath and bed supplies and therapy equipment. They have also been great when purchasing lightweight, travel wheelchairs. The only downside is that you have to handle your own insurance and that can be a hassle, but I’ve found it’s a hassle even when others are working with the insurance company. Sometimes I’d rather just be the one to handle the claim and do the required follow-up. When it’s a product that is too complicated to order on my own, like a wheelchair, then I will go ahead and use a local medical equipment suppliers. I guess the upside is that they handle the insurance and are available for follow-up maintenance and adjustment, but most places still leave much to be desired. If you talk with any person raising a child with disabilities they will tell you that some of the biggest challenges we face is finding good companies for our business, be it medical equipment dealers, respite and care provider services or even doctors. If you know of someone in any of these fields that is worth your business, tell everyone you know! That’s what I do!!
First post
Today I have begun my newest challenge…venturing into the world of blogging. Thankfully, my brother has a blog and has been able to help me get this set up. However, even as I write I have no idea whether or not this is going to show up anywhere. So, I will put down some text, click on another button or two and see what happens. Here goes nothin…
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National Vaccine Information Center (NVIC)
