By Alison Singer
President, Autism Science Foundation

This week, the British General Medical Council (GMC) ruled that Dr. Andrew Wakefield, who first proposed a link between the MMR vaccine and autism, acted “dishonestly and irresponsibly” when he published his research and showed a ‘callous disregard’ for the suffering of children.

The GMC decision came after the longest and most expensive hearing in its 148-year history.  The hearing focused on a small study of a dozen children by Dr. Wakefield and 12 doctors which linked the MMR vaccine with autism and bowel problems.  It was published in the highly respected medical journal The Lancet, the, in 1998. At a press conference following the publication, Wakefield said there were “sufficient anxieties for a case to be made” to give the three vaccines separately.  Numerous other studies, including one involving three million children, failed to replicate his findings.  But that didn’t prevent MMR vaccination rates from plummeting by 12% in Great Britain after Wakefield’s report. And in 2006 a 13-year-old boy died from measles. More deaths followed.

 Eventually Wakefield’s collaborators withdrew their names from the Lancet paper and the paper itself was eventually retracted. Later it was revealed that Wakefield had received funds from lawyers representing the children enrolled in his study. And now the GMC has spoken in clear and convincing terms. And let’s not forget that the hearing itself was not even about the science; it was about Wakefield’s methods. The science has been in for some time now. No study has shown a link between autism and MMR. To read the studies visit www.autismsciencefoundation.org/autismandvaccines.html

 But will this be the end of the controversy? I doubt it.

 Once you put an idea in people’s head, even in the presence of clear and convincing science, it is very hard to unscare them.  Anti vaccine autism advocates continue to see Wakefield as a hero who remains willing to take on the establishment and fight for their children.  In the meantime, Wakefield’s actions have had a lasting negative effect on children’s health in that some people are still afraid of immunizations. In some cases, the younger siblings of children with autism are being denied life saving vaccines. This population of baby siblings, already at higher risk for developing autism, is now also being placed at risk for life threatening, vaccine preventable disease, despite mountains of scientific evidence indicating no link between vaccines and autism. This is the Wakefield legacy.

By Amy Pisani

Speaking with reporters from college newspapers across the country, ECBT spokesperson and H1N1 survivor Luke Duvall, continued his advocacy work by spreading the word about the importance of college students attaining the H1N1 vaccine in the coming month.  Luke was joined on the call by Jason Rzepka Vice President, MTV Public Affairs, HHS Secretary Kathleen Sebelius and Dr. Stephen Redd from the Centers for Disease Control and Prevention.  MTV and their partner, College News Media partnered with HHS to host this important media call.

Secretary Sebelius, who met with Luke and his family during their advocacy tour in Washington, DC during National Influenza Vaccination Week reiterated the dangers and unpredictable nature of H1N1.  She stated that children between the ages of 18 to 24 have been six times more likely to be hospitalized due to H1N1 compared to all other age groups.  Teens and young adults are particularly vulnerable to the virus because they often live, work, and study in close proximity with other people and unlike older persons have not been exposed to influenza viruses similar to this one before. The Secretary reminded reporters that several years ago physicians became lax in recommending the vaccine following the holidays and the country was hit with a surge of hospitalizations in February and March (the typical peak period of seasonal flu activity).  By vaccinating the larger population more people will be protected she stated.

Luke told reporters that he has become a spokesperson for Every Child By Two to ensure that what happened to him does not happen to any other family.  At the time that Luke became ill, the vaccine was only available to people at high risk, which he wasn’t at the time.  He recalls, “I almost lost my life from not getting vaccinated.  The vaccine can save your life and I don’t want anyone else to go through what I went through.  My whole family, my county – the entire nation was devastated thanks to 60 Minutes (who aired Luke’s story in great detail)”.  “My teammates didn’t think I’d be alive for Christmas.”

Next, Luke talked about the experience of waking up from his coma. “I can remember the first time I woke up and saw myself in the mirror in rehab.  I was devastated. I thought something was wrong with the mirror.  I lost so much weight and muscle mass that I had worked so hard to gain.  I was angry because I knew there was a virus that I could have gotten vaccinated against but couldn’t get.  It really made me angry.  I wish I’d had the opportunity to get the vaccine.”

It is amazing to meet a young person with so much compassion for others. “My whole family is pro vaccine… it’s not just for yourself…it’s for everyone else.  It’s for the people that you don’t know – it’s for the pregnant women and other children that you don’t know but you could affect their life by not getting the vaccine and not even know it.”  Luke and his family suffered greatly, they witnessed the death of several children from the virus during Luke’s hospitalization and are committed to assuring that others do not suffer needlessly.

Check out this video to see Luke speak about his advocacy efforts during National Influenza Vaccination Week which took place January 10-16.

Luke Duval

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[Ed. note: this blog originally appeared on the Autism Science Foundation's blog here.]

By Alison Singer, President, Autism Science Foundation

IACC Unanimously Approves 2010 Strategic Plan for Autism Research

Autism Science Foundation President and Interagency Autism Coordinating Committee (IACC) member Alison Singer joined all her colleagues on the IACC this week in voting to approve the 2010 Strategic Plan for Autism Research.

The plan calls for upwards of $217 million to be devoted to autism research in 2010. It includes new objectives for identification of behavioral & biological markers, and calls for new studies to improve understanding of the biological pathways of genetic conditions related to autism; studies that target the underlying biological mechanisms that co-occur with autism; and studies that investigate what causes phenotypic variation across individuals who share an identified genetic variant. The new plan cites the need for more research on services and supports, as well as a greater focus on lifespan issues. The committee also added a new chapter to the plan calling for infrastructure investments that will support data sharing among researchers, encourage and enable individuals with ASD and their families to participate in research, and improve the speed with which research findings are disseminated.  The new chapter also calls for enhancing and expanding autism surveillance efforts.

The plan does not include any references or objectives that imply that vaccines cause autism, and it does not call for additional vaccine research.  “Draft materials submitted to the IACC suggesting vaccines and/or vaccine components were implicated in autism were rejected by the committee because the IACC determined that they were not based on good science,” said Singer.

By Amy Pisani

I, like the rest of you, have been in disbelief over the devastation in Haiti.  I think the only positive thing to come out of this ordeal is the overwhelming wave of support our country has been able to offer in the midst of this tragedy. It’s truly incredible that more than $300 million has been raised in such a short window of time -  much of it via text messages and phone calls.  Unfortunately though, the relief effort does not yet have the funds to tend to the majority of people in Haiti.  I came across this article on MTV.com that actually spells out some of the tangible items that donations such as yours could be offering the people of Haiti. Even if you don’t think you have much to offer in terms of dollar amount, it’s important to realize that even the smallest amount of money goes a long way. 

This one in particular struck me (for obvious reasons) as impressive: according to UNICEF, $10 will pay for a cold-box vaccine carrier that will help ensure that vaccines reach children in remote areas to protect them from communicable disease, including the many who are stuck in temporary camps.

As you can see, every dollar makes a tangible difference in these victims’ lives. There are so many organizations out there doing great things. I hope you will take a moment to check out some of them, and hopefully support them in any way you can. The New York Times has provided a list which you can check out here.

 Below are some more impressive statistics that your donation can provide, according to the Red Cross:

 » $5 provides a water container to store clean drinking water.

» $10 provides a blanket that is appropriate to the climate and culture of the disaster-affected area.

» $25 provides a family of five with a kitchen set, giving them the ability to cook and serve food (a disaster can destroy even the most basic family possessions and restoring family’s self-sufficiency is essential). This includes two cooking pots, a frying pan, bowls, plates, cups, and utensils.

» $30 provides essential hygiene materials to five people for one month (ensuring adequate hygiene after a disaster is essential in promoting the health of those affected). This includes items like a toothbrush and toothpaste, shampoo, body soap, laundry soap, toilet paper, sanitary pads, a razor and a towel.

» $60 provides tools for a family of five to build a temporary shelter: two tarps, a rope, hoe, machete, tin snips, handsaw, roofing nails, shovel, long nails, tie wire, claw hammer.

» $100 provides a cooking set, hygiene pack, blankets, and water containers for one family of five following a disaster.

» $500 provides a family tent for a family of five.

 And from UNICEF:

» Tent: For a little over $200, this tent can be used to provide life-saving shelter or to support a clinic or a school in time of crisis.

» School-in-a-Box ($200): UNICEF’s innovative “School-in-a-Box” sets up a temporary school for at least 40 children during times of emergency. Kits provide the chance for children to continue their education during the most extreme crises.

» Vaccine carrier ($10): Cold-box vaccine carriers help ensure that vaccines reach children in remote areas who need them.

» Collapsible water containers ($2 per container): Each container holds 10 liters amount of water and is especially useful for kids carrying water for long distances to ensure that all their water doesn’t spill en route from their water supply. It is also very useful for storing clean, safe water for everyday use.

» Water purification tablets (60 cents for 50 tablets): Each tablet is able to turn 4-5 liters of dirty water into water suitable for drinking. Every day, 4,000 children worldwide die because they do not have access to clean water, according to UNICEF.

» High energy/protein biscuits ($1 per pack): These contain minerals and vitamins and have been developed for malnourished children during emergencies.

» Therapeutic Nut Spread: $77.63 feeds 10 children for one month — therapeutic nut spread is a high protein, peanut-based paste, supplied in a ready-to-use packet. No water is needed for mixing, which means that help can be provided to malnourished children in any situation.

» Therapeutic Milk ($24.75/ 12 liters): A milk-based powder for treatment of severe child malnutrition, this successful formula includes added vegetable fats, carbohydrates, vitamins and minerals and boosts the chances of child survival.

» Blanket ($3): Blankets protection from the elements and provide comfort in the more dire of circumstances.

» Oral rehydration salts (7 cents for one package): This solution, containing sugar and salt, treats children suffering from dehydration caused by diarrhea. Approximately 3,500 children die each day from dehydration caused by acute diarrhea, according to UNICEF.

» Soccer ball ($5): Play brings children together and helps restore a sense of normalcy in times of crisis or emergency.

By Amy Pisani

Definitely take a minute to read this excellent piece in Forbes magazine from Robert Nelson, the father of an autistic child and a venture capitalist. Recently, Forbes has been running excellent articles on vaccines (check out their recent piece  “Stars vs. Science”), but this one hits it out of the park. It is truly scary what the consequences of vaccine exemptions look like. Nelson articulates it very well in this article, describing the anti-vaccine movement’s attempts to “scare people on blogs with false data and junk science, even though the risk from vaccines is a millionfold less than the risk from the diseases they prevent.” 

One of the moms I work with through ECBT, Brendalee Flint, whose daughter Julieanna almost died from Hib disease (you can read her story here), relies on the majority of her neighbors to vaccinate their kids because Julieanna suffers from a rare immune disorder which leaves her vulnerable to disease. It’s statistics like this one that keep her up at night worrying: “Because of their efforts, rubella, whooping cough, measles and meningitis are all on the rise in a country that spends 16% of its GDP on health care. In 2004 there were 26,000 reported cases of whooping cough in the U.S., up from only 1,000 in 1976.” 

Please share this article with your friends and family. It’s so important that people realize not only do vaccines save individual lives, they help keep entire communities healthy and disease-free.

By Amy Pisani

[Update: We just received the exciting news that Luke will be appearing on Morning Joe on MSNBC tomorrow morning. Be sure to tune in between 8:20 and 9 AM ET to watch Luke discuss with Joe Scarborough and Mika Brzezinski his battle with the H1N1 virus, and what he’s doing to make sure fewer kids go through the same ordeal.]

Luke Duvall, a sophomore football player in Arkansas, became an overnight television star this past fall when CBS’ 60 minutes began following his story.  Unfortunately, although Luke had recently won the state record for weightlifting, it would be his harrowing fight against the deadly H1N1 virus that would touch the hearts of the nation as he became the feature story in October.  His parents Chad and Belinda gave the news channel full access to their ordeal the in hopes that they could prevent the illness from hurting, or killing others across the nation and the world. As the world prepared to unveil what would be one of the largest vaccination campaigns in recent history, parents everywhere worried that their children would be next.  Vaccine developers jumped into action developing a vaccine to ward against the virus.

Luke recovered from the virus, returning back to school in January after a lengthy rehabilitation process.  This spring, Luke plans to play his best season of baseball ever.  First, as a newly appointed spokesperson for Every Child By Two, he will take part in a series of events to encourage families to protect themselves against vaccine preventable diseases.  Now for Luke’s personal story in his own words…

[Ed. Note: Luke's story is available on the Vaccinate Your Baby web site here, and below.]

BEATING THE ODDS

By Luke Duvall
December 9, 2009

Friday, October 2nd, 2009 Atkins vs. Mountain View, five days until emergency med flight. It was the first cool night of the season. I remember thinking when the game got started “Wow, I can’t wait to get back in the car where the heater is”. That probably explains how I felt. I was coming down with a virus called H1N1, or swine flu, that would put me on a vent, make me susceptible to pneumonia, and almost take my life. I had no idea that exhaustion was the first signs of having this flu because it had only been in America for about a year. Because of this, I didn’t know much about it. I thought I was just having a bad night and was going to have to try to play through it, but later it came to be known that I had no business playing that game.

Saturday, October 3rd, four days until med flight. I woke up feeling like ten pounds of trash in a 3 pound sack. I felt horrible. This isn’t uncommon for the day after a game considering I play both ways and special teams.  I knew that it was a little different kind of tired, but none-the-less I forced myself to get up and go work for my grandpa. My grandpa being the slave driver he is didn’t cut me any slack all day. He kept pushing me and pushing me to keep up with him and then, as if  it wasn’t bad enough already, convinced me to go out on a double date with him that night. I shouldn’t have been out doing any of that in the condition I was in. I survived work and the date by telling myself that I was ok and that I just had a little headache and nothing was the matter. Boy was I wrong.

Sunday, October 4th three days until med flight. The day it finally got me. I couldn’t hide it anymore, I was sick and I knew it. My temperature was 104.3 and I felt horrible. Tylenol wasn’t kicking it, and  its kind of funny that I thought it would now looking back and  seeing what I actually needed to fight off the fever. I tried everything, cold baths and wet rags, but nothing helped. I couldn’t eat anything and didn’t even want to drink anything. I have had the normal flu before and I knew that this was different.

Monday, October 5th two days from evac. My temperature was now 104.5 and a restless night didn’t help the problem any. Now my family was beginning to realize that something really is wrong with this situation. My dad calls the clinic and schedules an appointment for 2:30. I remain in the same state up to my appointment. I enter the clinic and they take me back to a room where my doctor comes in to check me. He decides that I have the flu and that I have had it long enough that there is nothing they can do for me except give me diarrhea and nausea medicine. He missed the ticking time bomb that I call my left lung. At this time, it was slowly filling up with mucus as we later found out. I’m sent home with a dinky med and a lot of frustration because I can tell things are still not right.

Tuesday, October 6th , 1 day from evac. I continue the same routine, cold showers and wet rags with Tylenol to try to fight off MSSA pneumonia. That day I begin spitting up blood. The news hadn’t yet started putting bloody mucus as a sign of H1N1, but because of my case they started listing it as a symptom. After the bloody mucus began I knew I was dying. It wasn’t a fast dying, but I knew it was coming. My dad calls a family friend who is an RN to came to check me out. She looks at me and says to call an ambulance. I thought that was an obvious thing to do because I was panting like a dog saying call 911 please get me an ambulance and get me to a hospital NOW. At the hospital we find out  my immune system is shot and my lungs are packed concrete tight with bloody mucus. Now we KNOW that something isn’t just kind of wrong, it is VERY wrong.  Later, at Arkansas Children’s Hospital we also found out that my bone marrow was  dying, my kidneys were shot, and my liver was shutting down.

This night at Saint Mary’s is the worst night of my life. I enter into the ER and then  I’m admitted to a room in the ICU. In the ICU my care consisted of oxygen and a pat on the back. They do nothing for me. I see a nurse and doctor once all night. Around midnight that night my dad pleaded with the nurses to give me some medicine to make me sleep or calm down because I am very restless. Finally, a nurse came in and shot me up with Ativan. About an hour later I begin hallucinating.  Later, my dad finds out that Ativan given at a fast rate to a minor can make them hallucinate. So instead of sleeping for the next 4 hours I see and hear crazy things. I never did go to sleep.

Tuesday October 7th , 4 hours until take off. My parents are notified that if they intend for me to survive I  need to immediately go to Arkansas Children’s Hospital. They also tell them I’m not stable enough to ride in an ambulance to Little Rock. This creates a problem. It looked like the story was going to end sadly and very bad on my part, but God had other plans for me. There just so happened to be an Arkansas Children’s helicopter coming to Saint Mary’s within the hour to pick up another patient. Also, it just so happened that CBS’s 60 Minutes wanted a H1N1 case that involved a healthy athlete that was hospitalized by this flu. They had come to ACH looking for just such a case a few days earlier, but didn’t find it and went on their way. A man by the name of Tom Bonner, who later became a good family friend, was the PR man for the Children’s Hospital.  He caught wind I was the exact case 60 Minutes wanted, but I needed to be air lifted , or I would die. This was significant to him because I was the chance to get the hospital national recognition. If they could get me to the hospital, they could put me and the hospital on T.V. He made a phone call to Saint Mary’s hospital and asked to speak with my dad and Tom said, “Chad, this is Tom Bonner with Arkansas Children’s Hospital. We would like to air lift your child to our facilities and film him as he exit’s the helicopter for a 60 minutes episode. Do I have your consent?”  And I believe my dad’s exact response was “I don’t care what you do as long as you stay out of the way.” Tom responded, “Thank you, the Angle One helicopter should  be there in a few minutes, see you soon”

Not long after that, the Angle One team arrives at Saint Mary’s. My dad said that when they arrived everyone just stopped and stared as they walked down the hall. They were in complete control of  the situation and the hospital. The only thing that could have made it any cooler was if they had played Clint Eastwood background music when they arrived. He said that when the air medics asked for something that the Saint Mary’s nurses didn’t just go get it, but they ran and brought back two, no questions asked. That’s exactly what I needed because I was still dying, but now, much faster. All the Angle One team came and stood around my bed and told me exactly what was going to happen in a calm voice. This part gets a little fuzzy for me, but I remember thinking, “Wow, these guys are cool!”, and they were. They told me they were going to put me to sleep and then stick a tube down my throat and fly me to ACH. I remember thinking, “Awww man, I’m not going to get to see the flight, dang,” They also told me that it was going to feel like falling asleep and then waking up the next day. I didn’t believe that part, but they knew exactly what they were talking about. They intubated me, and moments later I took my first crash. My blood pressure bombed out, and they had to cram me full of fluids to keep me stable. This was a tune that we sung far to often. After I stabilized, they loaded me up and we were off.

My dad recalls the flight as being great, but our situation as being critical. He knew he would never fly in an $8 million medically decked out Black Hawk ever again, so he took a little time to look around. I, of course, don’t remember a thing. I did wake up many times through the flight and through the time I was in a coma, but I don’t remember a thing because they gave me some nice amnesia medicine. The flight took approximately 20 minutes, and when we landed there they were, just like Tom had said. Tom Bonner and a camera crew were waiting on me. The med team ran with me and my dad to the PICU, or Pediatric Intensive Care Unit, where they would fight and battle to save my life and eventually succeed. My mom had already arrived at the hospital, since she had to drive. I had hardly entered the door before I had IV’s and all kinds of tubes running into me. My dad remembers counting 11 IV’s running into me at once. I was almost as connected as a person can get. The next step is the final step, ECMO, which thank God I never had to have. Later in the day, I decided that almost dying once wasn’t enough so I thought I should try it again. My blood pressure started dropping again and once more I was crammed full of fluids to keep me alive.

The next few days of PICU were about all the same. I would either slightly improve or stay the same. I was taking baby steps. The steps forward ended exactly 1 week from my arrival and I took a leap backwards. I crashed again for the third and final time. This one was really bad. They called in all the family because they were sure I was a goner. My mom couldn’t handle it so she ran into a small conference room and fell on her face, not in rememberance of me and my life, but to plead to God for my life. As she cried and prayed that I would improve, my dad was going back and forth from my room to the conference room and would tell her my condition. One time when I was almost stable he entered her room and said, “Don’t stop honey, your moving heaven and earth don’t quit,” and she didn’t. She stayed in that room until I was better and never moved, she didn’t look up, she didn’t move around, she just prayed.

From that point forward I steadily improved. My lungs were getting better and my blood pressure stayed normal. I never had another fall out or back step. After being intubated and in a coma for 12 days I woke up. Not because they let me wake up, but because I just woke up. When I came to, I wasn’t scared and I didn’t fight. I was confused, but I knew something was ok about the situation. They untied my hands so I could move, I was so happy. I didn’t try to pull out the tube in my throat, which is a miracle in its self. They normally keep a person tied and sedated because they will almost always pull our their tube since it is so uncomfortable. It does a lot of damage to the throat and can cause reconstructive surgery. I may have been doped up, but I was still smart enough to know that if I had to withstand this tube to remain awake then I would. I also knew the tube was keeping me alive so I was ok with not pulling it out. I withstood the tube for five days and the doctors and nurses had never seen anybody awake on the tube for that long because no one could control their self enough. I was extubated on the 24th of October. That was one of the happiest days of my life. Of course, I had cameras in my face, but I didn’t care.

I stood for the first time the next day on Saturday. It was harder than any sprint, workout, or football game I have ever experienced. I moved to rehab on the 28th to relearn how to live. The saying goes that PICU saves your life, Rehab gives it back. Rehab was the hardest thing I had ever done in my life, because I was conscience for all of it. How long Rehab lasted was all up to me and nobody else. I was coming off of drugs, still fighting pneumonia, battling depression, dealing with extreme homesickness, and on top of that having therapy and relearning to eat and drink. After going through that I know I can do anything. I was sent home Tuesday, November 10th at 11:00 a.m. after my month long battle. I was now 36 pounds lighter, much weaker, and very fragile. I can only think of one thing more exciting that coming home and that was being extubated. The whole town, and the whole Nation as a matter of fact was thrilled I was home. People kept up with my story like I was their own son. I don’t see myself as a celebrity or a hero. I see myself as an example, an example of what prayer and faith can do for a person and how God can bring a person through. I am back to gaining weight and exercising everyday. My aim is to be the best pitcher in our baseball conference this year or even in the state maybe. People say I’m crazy, but I know its possible, that would be the least of what God has done for me.

I really hope everyone gets the H1N1 vaccination. What I have been through has changed my life forever. Except by the grace of God I would not have survived.  While I was at ACH there were many kids that had H1N1 who didn’t make it. I can’t help but think how different things could have been for me and for them if we had all been vaccinated.  Since leaving ACH  my whole family and I have gotten the vaccine.  Don’t wait. Get the shot!