E-Newsletter July 2009 #2
Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.
We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.
We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
In this edition:
|1||Find a TACA Meeting|
Come to a TACA Meeting!
TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books and tapes that can be checked out by members at no charge.
Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.
Are you wondering what happens at a TACA meeting? Watch our video.
|2||5th annual TACA Family & Friend's campaign - Wow! $100,000 and counting!|
As TACA's founder and executive director, words cannot express my gratitude for your help with the TACA Family and Friends campaign. I know how busy you are and the fact that you took time and made the effort is greatly appreciated. Your hard work has made this 5th annual TACA Family & Friend's campaign our most successful to date, raising over 25% more than in 2008 - and all in a down economy!
Why are your extra efforts so important? For two important reasons:
While thanking you, I could not help but reflect on this campaign and its original purpose. The TACA Family and Friends campaign came about from all the families and relatives who said "how can I help."
For over nine years, I have always been reluctant to tell families that need TACA how they can help us. Families affected by autism are tremendously busy and challenged every day. Our goal is to have TACA there for you when you need us.
This campaign was also created to put a face on autism, share stories and build communities in family's back yards by reaching out and getting help for the group that supports them. TACA's mission and efforts are grass roots. Besides supporting families - awareness about autism is a crucial part of what we want to accomplish. Autism is anything but easy and educating more or your family and friends about the impact of autism is crucially needed. Maybe during the past few months more of your friends and coworkers asked about your child affected by autism, knew more about the cause and what TACA does to help. Now your community of support may be a little stronger as a result of helping TACA.
Where do the funds from the Family & Friends campaign go? They go to help families living with autism just like yours. TACA has grown from 6,500 to more than 14,000 families in the last year, and our mission is more critical than ever.
Your help - from the TOP FUNDRAISER to the family who raised $25 from neighbors means so much to TACA and to me personally. I was deeply touched as I read each of your personal stories on your web sites and saw the photos of your beautiful children and families. I am grateful for each donation made in honor of a child that is loved.
Last area of business - to thank you for your help! The acknowledgement of your efforts will be according the incentives defined in our Firstgiving page. We will be sending you a follow up email on the small way of saying thank you for your hard work.
Together we can make a difference for all the TACA families - including yours. I truly appreciate your support and wanted you to know your help is greatly appreciated.
|3||Join us for Coffee Talk!|
Come and receive some extra support or to chat all topics related to autism and meet other TACA families at these informal, monthly get-togethers.
|4||New and Updated GFCF Info!|
|GFCFSF on a Budget (updated to remove soy)
Teacher Handout (updated to remove soy and per federal law)
Enjoy! Holly Bortfeld
|5||Daily Autism Updates for Families|
All news related to autism:
For daily updates to all autism legislative issues: ChangeforAutism.orgAgeofAutism.com
|6||Health Care Reform & Autism Insurance Discrimination Update|
Updated Monday, July 27, 2009
TACA and all of us in the autism community really appreciate all of you who have worked so hard to contact Speaker Pelosi's office. Your calls, emails and faxes have been heard -- thank you!
House Speaker Nancy Pelosi has entered into a dialog with the autism community about how we can end autism insurance discrimination.
How Can You Help?
Thanks again to all who helped in this very important issue affecting our families. More information on the Senate bill is coming soon!
|ABC 13 Action News
But instead, parents, district employees, government workers and lawmakers all tell us they're being abused and the school district has done little to stop it.
Our story begins with a 7-year-old autistic boy named Gus Lapin.
"Why do you eat?" Gus' home aide asks him
He looks into space for a moment to think.
"I eat because I'm hungry!" he says excitedly, figuring out the expected answer.
That simple fact... a child eating, or in this case, not wanting to eat, is at the heart of an abuse lawsuit against the Clark County School District and special education teacher Lindsay Schoener.
"She said could you come inside because I think Gus is sick. He's been vomiting. So I went inside and indeed there was vomit in various places throughout the classroom and I asked her what happened and she said I don't know, I think he just probably doesn't feel well," remembers Courtney Lapin, Gus' mother.
Because young kids often get sick, so Courtney wasn't too worried.
That is until she got a call from the Staton Elementary school principal the next day.
"According to the principal, the police were at the school and that I should come to the school to get Gus."
At that point, Courtney knew something bad had happened, but no one was telling her anything.
"I was terrified. Terrified! When you send a child to school who can't come home and tell you what happened to him that day, it adds another level to your fear. It was devastating."
Months went by and no one at the school told Courtney and her husband what happened to Gus.
In fact, details only came after the family hired a lawyer to force the District to release the police report documenting the incident.
According to the report, Gus, who was five years old at the time, didn't want to eat the turkey in his lunch.
So the teacher intervened.
She reportedly told her aides, "Bear with me. This is not going to be pleasant."
She then sat behind Gus, pulled his head backwards against her chest and ordered him to open his mouth.
"And the whole time he was protesting. He was saying no turkey, no turkey!" Courtney learned from the police report.
The crime report goes on to say Mrs. Schoener clamped on his head, pinched off his nose, and when Gus opened his mouth to breathe, she dropped the turkey in and covered his mouth so he couldn't spit it out.
"His hands and his legs were flailing about. He was gagging and choking," Courtney read in the report.
The report shows that teacher force-fed Gus until he vomited repeatedly in front of all the other children.
"It just exceeds all bounds of decency and is outrageous conduct, particularly for a School District employee," says the family's attorney, Robert Kilby.
"And in a classroom where these kids need extra care and patience and understanding, to know that there's someone in the classroom who would do this over something so small, it's shocking," Courtney says.
The classroom aides reportedly tried to stop Mrs. Schoener, to no avail.
The aides reported the incident to the principal and school police, saying they were "mortified" by the teacher's conduct, and suggesting the school "place a hidden camera in Mrs. Schoener's classroom and then people would be shocked over her behavior."
Nevada law says physical restraint may not be used on a pupil with a disability unless there's an immediate threat of physical injury to students or staff, or to protect against severe property damage.
All instances must be documented and reported to the school district and the parents.
Courtney believes that "unless someone had come forward, we wouldn't have known what happened. We never would have known."
School police submitted their report to the District Attorney for the crime of child abuse.
"The Clark County School District Police Department did request for a warrant to be issued for Ms. Schoener's arrest," Kilby explains.
But that didn't happen.
Lindsey Schoener was never prosecuted and she's still teaching special needs students at Staton Elementary.
Contact 13 has been told that her disciplinary action consisted of watching a training video.
"If that's all that was done, I probably would not think that was reasonable," says Assembly Speaker Barbara Buckley, who works for Southern Nevada Legal Aid Center.
She often represents children with special needs and feels that any school teacher who did what Schoener is accused of should be terminated.
"Child won't eat... special needs... never take it upon yourself to force food down the child's mouth! Ever!" Buckley says.
She's puzzled by the fact that it took the Lapin family so long to learn what happened to their son.
"What message is that sending to these vulnerable families?" Darcy Spears asked.
"I think it's a really bad approach. I think that what it does is it infuriates the parents and it gets them angrier and angrier and what they will do is look toward litigation," Buckley answered.
The School District wouldn't talk about the incident with Gus and how they handled it.
They say pending litigation, unresolved personnel issues and confidential student information are not appropriate interview topics for district personnel.
For now, Gus Lapin is being home-schooled... the only place his parents feel he can learn and be safe.
Abuse allegations involving special needs students have been levied at the School District for more than a decade.
Contact 13 found a previous case involving a 10-year-old special needs student where a teacher and assistant held the boy's hands behind his back and force fed him oatmeal--which they knew he was allergic to--mixed with his own vomit.
He was also strangled so he would run faster despite a physical deformity in his feet and legs, pinned to the ground, and squirted with water if he couldn't stay on task.
The District fought that case starting in 1998 and eventually settled out of court.
But to this day, dozens of violations involving special needs students are still recorded every year.
|8||Autism: It's the Environment, Not Just Doctors Diagnosing More Disease|
Environmental Health News,
Thursday, July 16, 2009
San Francisco Chronicle
California's sevenfold increase in autism cannot be explained by changes in doctors' diagnoses and most likely is due to environmental exposures, University of California scientists reported Thursday.
The scientists who authored the new study advocate a nationwide shift in autism research to focus on an array of potential factors in the environment that babies and fetuses are exposed to, including pesticides, viruses and chemicals in household products.
"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," said Irva Hertz-Picciotto, an epidemiology professor at University of California, Davis who led the study.
Throughout the nation, the numbers of autistic children have increased dramatically over the past 15 years. Autistic children have problems communicating and interacting socially; the symptoms usually are evident by the time the child is a toddler.
More than 3,000 new cases of autism were reported in California in 2006, compared with 205 in 1990. In 1990, 6.2 of every 10,000 children born in the state were diagnosed with autism by the age of five, compared with 42.5 in 10,000 born in 2001, according to the study, published in the journal Epidemiology. The numbers have continued to rise since then.
To nail down the causes, scientists must unravel a mystery: What in the environment has changed since the early 1990s that could account for such an enormous rise in the brain disorder?
For years, many medical officials have suspected that the trend is artificial -- due to changes in diagnoses or migration patterns rather than a real rise in the disorder.
But the new study concludes that those factors cannot explain most of the increase in autism.
Hertz-Picciotto and Lora Delwiche of the UC Davis Department of Public Health Sciences analyzed 17 years of state data that tracks developmental disabilities, and used birth records and Census Bureau data to calculate the rate of autism and age of diagnosis.
The results: Migration to the state had no effect. And changes in how and when doctors diagnose the disorder and when state officials report it can explain less than half of the increase.
Dr. Bernard Weiss, a professor of environmental medicine and pediatrics at the University of Rochester Medical Center who was not involved in the new research, said the autism rate reported in the study "seems astonishing." He agreed that environmental causes should be getting more attention.
The California researchers concluded that doctors are diagnosing autism at a younger age because of increased awareness. But that change is responsible for only about a 24% increase in children reported to be autistic by the age of five, according to the report.
"A shift toward younger age at diagnosis was clear but not huge," the report says.
Also, a shift in doctors diagnosing milder cases explains another 56% increase. And changes in state reporting of the disorder could account for around a 120% increase.
Combined, Hertz-Picciotto said those factors "don't get us close" to the 600% to 700% increase in diagnosed cases.
That means the rest is unexplained and likely caused by something that pregnant women or infants are exposed to, or a combination of genetic and environmental factors.
"There's genetics and there's environment. And genetics don't change in such short periods of time," Hertz-Picciotto, a researcher at UC Davis' M.I.N.D. Institute, a leading autism research facility, said in an interview Thursday.
Many researchers have theorized that a pregnant woman's exposure to chemical pollutants, particularly metals and pesticides, could be altering a developing baby's brain structure, triggering autism.
Many parent groups believe that childhood vaccines are responsible because they contained thimerosal, a mercury compound used as a preservative. But thimerosal was removed from most vaccines in 1999, and autism rates are still rising.
Dozens of chemicals in the environment are neurodevelopmental toxins, which means they alter how the brain grows. Mercury, polychlorinated biphenyls, lead, brominated flame retardants and pesticides are examples. While exposure to some -- such as PCBs -- has declined in recent decades, others -- including flame retardants used in furniture and electronics, and pyrethroid insecticides -- have increased.
Household products such as antibacterial soaps also could have ingredients that harm the brain by changing immune systems, Hertz-Picciotto said.
In addition, fetuses and infants might be exposed to a fairly new infectious microbe, such as a virus or bacterium, that could be altering the immune system or brain structure. In the 1970s, autism rates increased due to the rubella virus.
The culprits, Hertz-Picciotto said, could be "in the microbial world and in the chemical world."
"I don't think there's going to be one smoking gun in this autism problem," she said. "It's such a big world out there and we know so little at this point."
But she added, scientists expect to develop "quite a few leads in a year or so."
The UC Davis researchers have been studying autistic children's exposure to flame retardants and pesticides to see if there is a connection. The results have not yet been published.
"If we're going to stop the rise in autism in California, we need to keep these studies going and expand them to the extent possible," Hertz-Picciotto said.
Funding for studying genetic causes of autism is 10 to 20 times higher than funding for environmental causes, she said. "It's very off-balance," she said.
Weiss agreed, saying that "excessive emphasis has been placed on genetics as a cause. "The advances in molecular genetics have tended to obscure the principle that genes are always acting in and on a particular environment. This article, I think, will restore some balance to our thinking," he said.
Some issues related to whether the increase is merely a reporting artifact remain unresolved. There could be other, unknown issues involving diagnosis and reporting, scientists say.
The surge in autism is similar to the rise in childhood asthma, which has reached epidemic proportions for unexplained reasons. Medical officials originally thought that, too, might be due to increased reporting of the disease, but now they acknowledge that many more children are asthmatic than in the past. Experts suspect that environmental pollutants or immune changes could be responsible.
Autism has serious effects, not just on an individual child's health but on education, health care and the economy.
"Autism incidence in California shows no sign yet of plateauing," Hertz-Picciotto and Delwiche said in their study.
|10||Fresno nonprofit cancels $500k in bonuses|
|By Barbara Anderson / The Fresno Bee
In a bid to quell rising public anger, a Fresno nonprofit that serves the disabled on Thursday told 350 employees to return $500,000 in taxpayer-funded bonuses.
Directors of the Central Valley Regional Center on June 20 decided to distribute a budget surplus to workers. The bonuses, based on salary and seniority, averaged $1,400.
The payouts were an effort to compensate for possible furloughs and layoffs, and for an anticipated increase in health-care premiums for employees in 2010, the directors said.
But the move drew criticism Tuesday from a top lawmaker and advocates for the disabled because they came as social service agencies face deep budget cuts. While the agency said services did not suffer because of bonuses, many critics said the money should have been spent on disabled people instead.
On Thursday, directors issued a statement announcing that the bonuses had been rescinded.
The agency receives funds from the state to provide services for children and adults with developmental disabilities. This year, it helped about 14,700 people.
Robert Riddick, the agency's executive director, said employees were told Thursday that they would have to return the bonuses, which he called "one-time salary adjustments." He said the workers took the news well.
"I think they recognize the difficulty of these economic times," Riddick said. "They've been willing to do their part in the past, when we had to leave positions unfilled and all do a little more work. They're willing to do their part again now and return the money."
Details of how employees will pay back the bonuses still had to be worked out, Riddick said.
"We will be working with our employees to repay," he said. He described Thursday's decision as a response to community concern.
Many employees already have spent the money, said Kerry Friedman, who identified himself as the domestic partner of a center employee who received a bonus. He declined to give the amount she received but said most of the bonuses were less than $1,000.
Friedman said his partner spent her bonus on "just bills -- your necessary bills."
Employees expect furloughs and layoffs in coming months, Friedman said. The bonuses "were a little glimmer of light for these hard-working people," he said.
Matthew Varpness, who identified himself as the husband of regional center case worker Rebecca Varpness, said the Visalia family had spent her bonus of about $1,000 to pay off debts.
"There's no way to get it back," he said.
One group that criticized the bonuses expressed support for the center's decision Thursday.
"We're very happy the board of directors for the regional center has changed their decision," said Ron Killingsworth, Central Valley spokesman for the California Disabilities Services Association, a group of organizations that provide services to the developmentally disabled.
Killingsworth said he felt badly for the employees who must pay back the money. The employees are "caught in the middle at this point," Killingsworth said. "I feel for them."
Lynne Arnold of Exeter said she likes the regional-center case worker who is assigned to her 11-year-old autistic son. "It's a really ugly situation."
But services are being cut for children, Arnold said. The center could not pay for her son to go to summer camp this year because of the state finances, she said.
Parents have been understanding about the state budget crisis, she said. But the employee bonuses were "like a slap in the face."
Senate Majority Leader Dean Florez, D-Shafter, had requested the agency explain its actions. Florez said the bonuses raised "a whole host of ethical and programmatic questions.
Riddick responded in a Thursday letter to Florez that he wanted to assure the senator that the "Board exercised due diligence before reaching their decision" to distribute the one-time salary adjustment to the staff.
The board would not have taken the action if there were not adequate funds through June 30 to meet the needs of the people the agency serves, he wrote.
Through salary savings, the center finished the year without a deficit in its operating budget, he said. The center has 17 vacant positions and has not hired to fill them since January 2008, except for four administrative support positions, he said.
The agency is one of 21 regional centers in the state that receive money from the state Department of Developmental Services. Central Valley Regional Center had a $177 million budget in the 2007-08 fiscal year. About $30 million paid for operations -- salaries, rent, supplies, Riddick has said.
With the state issuing IOUs until a state budget is approved for this year, regional centers are scrambling to line up loans from banks, said Nancy Lungren, a spokesman for the Department of Developmental Services.
Riddick said he is pursuing a bank loan of credit "in order to meet our obligations and pay for client services until the budget is signed.
In his letter to Florez, he said the money paid to the staff will go back into the agency's operations budget for the 2008-09 fiscal year and, if not spent, will be returned to the state. Riddick asked that any money refunded to the state be earmarked for programs and services in the Department of Developmental Services.
Florez said he's not sure that's possible any more. In a written statement, he said that he "has made inquiries to see if that is still possible, as it would have been if CVRC had returned the funds before the fiscal year ended."
|11||Budget Cuts Bring Fears of Locked Hospital Wards & Homelessness for Developmentally Disabled in San Diego County|
|East County Magazine
July 2, 2009 (San Diego)--Local nonprofit organizations serving people with autism, cerebral palsy and other developmental disabilities will drastically cut back on services, or be forced to close their doors if the state follows through on plans to further cut funding, according to a new survey.
Elaine Lewis, executive director of Developmental Service Continuum, which operates 10 homes and provides support services for children and adults with developmental disabilities, says proposed cuts may mean making hard decisions about reducing services.
“An additional 7 percent reduction will have a significant impact on the level of services we now provide; our ability to endure and thrive is really going to be impacted. And keep in mind that we serve people in a home-based setting, state facilities can cost up to 17 times more.”
Other agency executives expressed similar concerns: Mark Berger of Partnerships With Industry, which helps individuals with developmental disabilities find employment, is afraid his clients won’t get jobs, and they’ll spend more and more time collecting social security instead of being taxpaying citizens.
“If kids with autism lose their services, they tend to regress in their abilities,” explained Tracey Franks, whose 10-year-old son is a Community Coaching Center client. “I certainly don’t want my son to go back to negative patterns of behavior that we’ve worked so hard to extinguish. Because of this program, we can go to the store, to a restaurant, and that certainly wasn’t the case several years ago. This allows him to be a part of the community; we just can’t lose this.”
• 97% of those responding were negatively impacted by last year’s 3 % reduction in funding.
• 75% said they would continue to provide services for the next 12 months with a 3 % reduction in reimbursement rates.
• 66% said they could not continue to provide services with an additional 7% reduction in reimbursement rates. Some organizations stated they could survive just two-three months; others cited plans to reorganize and work to fund raise the shortfall.
• 73% of organizations providing day programs said their clients would have no other place to go to receive services if they close; 3% may be homeless as a result of the loss of the program.
• 41% of organizations providing supported living services so that clients are able to stay in their own homes said their clients would have no other place to go to receive services if they close; 12% may be homeless as a result of the loss of the program.
• Approximately 4,600 people with developmental disabilities will be impacted by cuts in services.
• 922 people will lose their jobs if organizations close or reduce services.
|12||Autism patients' treatment is denied illegally, group says|
|Consumer Watchdog asks a judge to order the state Department of Managed Health Care to require insurers to cover prescribed treatments, including a high-cost therapy that insurers have disqualified.
By Lisa Girion, LA Times
State regulators are violating mental health and other laws by allowing health insurers to deny effective treatment for children with autism, consumer advocates contend.
In a lawsuit, Consumer Watchdog, a Santa Monica group that monitors insurance practices, is asking a judge to order the Department of Managed Health Care to require insurers to provide autistic members with the services their physicians have ordered.
Without court action, the suit says, "California's thousands of autistic children and their families will continue to suffer."
The department said it was "holding health plans accountable to provide a range of healthcare services for those with autism" and was handling consumer complaints according to the law.
Insurers also insist that they are following the law and reimbursing policyholders for most autism care. The dispute centers on certain kinds of expensive therapy and whether a 1999 law requires insurers to pay for them.
Autism impairs communication and socialization and is often accompanied by repetitive, injurious behavior.
Insurers have long declined to pay for a variety of behavior-modification therapies, such as applied behavior analysis, because of the expense -- as much as $70,000 a year per child.
More than 37,000 children with the most severe cases receive services, such as applied behavior analysis, through the state. Because the state's limited budget for such children is rationed according to the neediest, thousands more suffer debilitating problems but are ineligible for state aid.
Applied behavior analysis involves a trained therapist working individually with a child for up to 40 hours a week. The therapist teaches skills, such as feeding oneself, by breaking them down into small steps and drilling them with positive reinforcement.
The battle over autism treatment is at least a decade old. In 1999, in response to widespread outrage over insurers' refusal to cover such needs, the state Legislature adopted the Mental Health Parity Act.
The law requires insurers to cover care for mental and behavioral problems at the same level as they do for physical illnesses.
Still, insurers continued to avoid paying for applied behavior analysis -- one of the most expensive autism therapies -- by denying requests on the grounds that it hadn't been proved effective.
Families complained to the Department of Managed Health Care, which submitted the disputes to independent medical review panels. These panels, composed of physicians working anonymously, review paperwork and issue individual, binding decisions.
Over the last two years, as the medical literature on the effectiveness of applied behavior analysis advanced, these independent review panels have decided every case in favor of the families seeking treatment. As a result, insurers, including Kaiser Permanente, were required to pay for the treatment.
Last year, however, Kaiser and other insurers, in letters and presentations to the department, urged it to change the way it handled such disputes and suggested that they no longer be sent first to the independent review panels.
The insurers began denying the treatment, saying it was educational -- not a covered medical service. And they suggested that the department, in deciding disputes, should first determine whether applied behavior analysis was a covered medical service. If not, then it should uphold the denials and stop sending the disputes to independent medical panels.
In March, the department issued a memo that adopted much of what the insurers had sought. The memo said the department would route autism treatment requests first to its coverage-dispute division.
In a statement, the department said it has told insurers they may not exclude any treatments "that have been determined to be healthcare services."
But the suit, filed Tuesday in Los Angeles County Superior Court, says the department's new policy has resulted in a reversal of outcomes. Insurers now are winning and families are losing. The decisions are binding and leave families to pay for the treatment themselves or have their children go without.
"Californians, including those stricken with autism and their parents and caregivers, expect regulators to enforce the law, not to side with insurance companies seeking to boost their profits by denying patients the care they need," said Harvey Rosenfield, founder of the nonprofit Consumer Watchdog and author of the landmark automobile insurance reform initiative Proposition 103.
|13||Democrats balk at president’s budget plan on autism, cancer|
|By Walter Alarkon, TheHill.com
Powerful Democratic appropriators are opposing President Obama’s proposed funding boost for autism and cancer programs, claiming it would inject politics into scientific research.
House Appropriations Committee Chairman David Obey (D-Wis.), Rep. Rosa DeLauro (D-Conn.) and Sen. Tom Harkin (D-Iowa) are questioning Obama’s proposal to increase National Institutes of Health (NIH) funding for cancer by 5 percent and autism research by 16 percent, arguing that it goes against Congress’s traditional approach to science. Historically, lawmakers have avoided setting aside money to research cures for specific diseases in an attempt to leave those decisions to scientists.
The appropriators’ worry is that politicians will start picking what diseases to fund without regard to the evidence.
Obama’s budget calls for boosting total NIH funding by 1.5 percent — an increase of $443 million — to nearly $31 billion.
Obama has proposed increasing cancer research funding by $268 million, to approximately $6 billion. The president is seeking to boost funding for autism research by $19 million, to $141 million.
Harkin wondered whether so much money should go into two diseases alone.
“I’ve fought as hard as anyone for more money for cancer research, but there are other devastating diseases, too,” he said during a Senate Appropriations subcommittee hearing on NIH funding last month.
Obey said that the result of determining funding levels for research of one disease over another will lead to “political chaos in an area that ought to be determined by science.”
“I think virtually all of us are more comfortable with the final decisions being made on the basis of what peer-reviewed process leads us to the best scientific judgments, as opposed to doing a political balancing act,” Obey said during a hearing on Obama’s budget request Tuesday.
Health and Human Services Secretary Kathleen Sebelius said the administration is attempting a “balancing act” of respecting science while trying to find cures for autism and cancer. She said that Obama “fully supports letting science guide the research,” but she also noted that the president has a personal experience involving cancer: His mother died at the age of 52 after a bout with ovarian cancer.
“I do know that the president personally feels very strongly about the opportunity to cure cancer in his lifetime and has talked about that for years, based, I think in large part, on his personal experience,” Sebelius said.
DeLauro said Tuesday that lawmakers share Obama’s goal of eliminating cancer, noting that she too is a cancer survivor. But the lawmaker said she preferred to avoid the “earmarking of autism and cancer.”
Obey said that appropriators, regardless of party, have “steadfastly insisted that allocations to research on diseases be handled by scientists rather than politicians.”
“And so we have always resisted efforts to direct a specific amount of funding at a specific disease,” he added.
But advocates for cancer treatment said the administration has the right focus, even if it is bucking tradition.
The American Cancer Society (ACS) noted that cancer will kill more than 565,000 Americans and cost $200 billion this year.
“By investing in cancer research, Congress has the power to support promising scientific initiatives that can lead to breakthroughs in prevention, early detection and treatment that will save lives and reduce healthcare costs,” said David Pugach, associate director of federal relations for ACS’s Cancer Action Network, the group’s advocacy arm.
Political fights over scientific research spending are not new. In 2003, then-Rep. Pat Toomey (R-Pa.) sponsored an amendment seeking to cut money for studies on sexual behavior. Toomey’s amendment barely failed in the GOP-controlled House.
A spokesman for the Health and Human Services Department (HHS) noted that all diseases benefited earlier this year from the $10 billion investment in the NIH in the stimulus package. NIH research for diseases other than autism and cancer will also increase next year under the president’s proposal, by $154 million.
“We understand the committee’s interest in avoiding disease-specific funding requests,” said Bill Hall, the HHS spokesman. “By the same token, and consistent with his campaign promises, the president feels very strongly about the opportunity to combat cancer and to expand support for children, families and communities affected by autism spectrum disorders.”
|14||Autism Families Shut Out at IACC|
|Age of Autism
By Katie Wright
Alex wanted to wear a tie for the first time in his life. He was also wearing special new slacks and a blazer. Alex is a handsome young man severely affected by autism. He and his mother Elizabeth, traveled all the way from CALIFORNIA to make their pre-approved comments at the public session of IACC.
Elizabeth and other Moms in attendance had to submit pre-approved questions to IACC in order to be allowed to make comments. OK, why the need to “pre-approve” comments? Are IACC meetings in danger of being crashed by strangers? Is this really such a hot ticket? Why can’t parents just sign up and be told what time to be there? Why is IACC censoring public comment? Who is IACC charged with serving? Uninformed bureaucrats who do not really care about our kids or is IACC there is serve the autism community?
Elizabeth had explained to Alex that they were going to talk at an important meeting and Alex even rehearsed speaking into a microphone. Because no seriously affected autistic person can sit in silence for the 6 hour duration of the meeting, Elizabeth and Alex had to take many walking breaks. They knew it would be their turn to speak at 3:30. 3:30 was also the published public comment time on the IACC agenda website.
As any Mom reading this knows, tremendous effort is required to time everything just right in a formal situation. Bathroom breaks, snacks, water and walking breaks were all carefully orchestrated in order to be at the IACC podium, ready to go at precisely 3:30. Elizabeth and Alex did their part.
Apparently, Tom and some others were in a rush to wrap it up. I suppose they had more important things to do. Rather than sticking to the schedule (a fairly important issue anyone who knows anything about autism should understand) Tom decided to announce time for public comment at 2. Of course all the Moms and their severely affected sons were not in the conference room then, so Tom and Della, IACC’s assistant, decided to end the meeting 2 hours early. Things are going so great with the autism- why continue the meeting? What could there possibly be to talk about? Shortly thereafter Elizabeth, Alex and other ASD family members walked into a nearly empty committee room.
Della was still there and informed the families that the meeting was over, public comment was announced early, they missed it, too bad. Della told the families that they should have been seated and ready to go anytime over the course of the 6 hour meeting! So, rather than apologizing for shafting autism families, this was really Elizabeth’s fault? Does Della even know anything at all about autism? Are she and Tom remotely aware of how utterly impossible it is to ask a severely affected ASD teen to sit silently for 6 hours? Do they care? What was the purpose of the published schedule if it was only going to be tossed aside when it suited Insel? The greatest irony is that these mothers brought their severely affected children so the committee, who are overwhelmingly bureaucrats, not parents, could see what a struggle it can be for these children to function.
Elizabeth did not want the day ruined for Alex. He had worked so hard to be ready. Elizabeth led Alex to the microphone so he finally make his comments- to an empty room. And then she clapped for her son.
To his credit Tom Insel did telephone Elizabeth and apologize.
Elizabeth graciously accepted his apology and spoke to Insel at length about the deficiencies within IACC. Insel listened as Elizabeth stated there is insufficient parent representation on the panel and most committee members appear wholly unfamiliar with issues affecting kids on the severe end of the spectrum. The committee operates with no sense of urgency and seems, at best, indifferent to public input. Insel promised to remedy these issues, specifically by placing this issue on the agenda of the next meeting and never again canceling the public comment segment. Insel is also seeking to have Katherine Sebelius attend the next IACC, so she too may recognize the urgency of the situation. It is in everyone’s interests for Insel to follow through with these promises. Let’s hope that is what happens.
Katie Wright is Contributing Editor for Age of Autism.
|15||Autism Briefing Goes Over Big|
|Age of Autism
By Dan Olmsted
A full house of about 80 people heard Mark Blaxill and David Kirby address the autism epidemic and its environmental roots Friday -- and one of the attendees was a member of the House who suggested their remarks may soon get even more attention.
"The Energy and Commerce Committee should have both as witnesses," said Rep. Chris Smith, Republican of New Jersey, praising them for the quality of their presentations and citing the urgent health crisis created by the rising numbers of autistic children. He said he would speak with Rep. Carolyn Maloney D-NY, about setting up a hearing. Maloney sponsored the briefing but was unable to attend due to a committee hearing, but her chief of staff, Ben Chevat, introduced Blaxill, Kirby and Smith. (That's Rep. Smith on the right, speaking. David Kirby is in the background.)
Smith spoke eloquently at both the start and the end of the hour-plus briefing; more than anything he said, it was his attendance that gave a boost to autism advocates present. The community lost a strong advocate this year when Rep. Dave Weldon, R-Fla., retired from the House, but Smith seemed more than ready to step up as a thoughtful, fair-minded advocate for parents' concerns. Blaxill reached Smith where he lived, literally -- Blaxill grew up in New Jersey, and noted the autism rate is now 1 in 99. Smith recounted his involvement with parents in Brick Township, N.J., where the autism rate of 1 in 150 in the 1990s first sounded the alarm of rising prevalence. (That's Mark Blaxill speaking.)
Smith, a member of the House since 1980, said he was not anti-vaccine but said the program should not go unexamined if the price is an autism epidemic, and specifically mentioned concern about mercury as a trigger. He said that as part of his work on human trafficking, he traveled internationally extensivlely, and was recently told by parents of a number of children in Lagos, Nigeria, that they believe mercury in vaccines was causing a surge in the condition there.
This was the second year Blaxill and Kirby spoke to Congressional staffers in the Cannon House Office Building. The Hannah Poling and Bailey Banks cases, along with new studies of environmental links -- including vaccines -- gave the proceedings a "mainstream" feeling despite efforts by public health officials and some pediatricians to assert that they question has been "asked and answered." (Below, David Kirby speaks.)
Judging by Smith's comments, the respectful questions, the audience size and the concerns raised by Blaxill and Kirby's presentations, those questions are still being asked in the halls of Congress -- and the next stop may be a Congressional Committee where Blaxill and Kirby will have the attention of a roomful of Congress members.
|16||Mothering Magazine: The Vaccine Debate|
|THE VACCINE DEBATE
By Jennifer Margulis
Noted advocates like Vicky Debold, Dr. Bob Sears, and Barbara Loe Fisher have to share coverage with Paul Offit in the story in MOTHERING MAG., the coverage is great. If you can get a copy, please read the story.
Vicky DeBold: "As a nurse, I had just assumed that everything we had been asked to do was based on good, solid science. But the gaps in the science are, frankly, what we're still dealing with now."
Barbara Loe Fisher: "You cannot put a greater value on the life of a child who is injured or dies from a disease than the life of a child who is injured or dies from a vaccine reaction."
It's incredible what our side is allowed to say in the face of Offit talking about the dangers of "a pocket of children who are unvaccinated..."
I read what happened to Vicky's son when "in August 1998 ...her own son was 15 months old, following a routine round of vaccinations, he could no longer stand in his crib..."
It was simply too much to read on.................
Maybe tomorrow..............too many memories...It's excellent.......so many names I know..........and a BIG EOH on a page along with Bob Sear's, THE VACCINE BOOK.
|17||First Swine Flu Shots Will Not Be Safety Tested|
|Age of Autism
By Ginger Taylor
On Friday, the National Biodefense Science Board met in emergency session to work on issues surrounding the H1N1 flu pandemic. They reviewed the report of their working group, "H1N1 COUNTERMEASURES STRATEGY AND DECISION-MAKING: A REPORT" [HERE], in order to provide input on it before it is sent to the Advisory Committee on Immunization Practices who makes final recommendations to Kathleen Sebelius on what the response to the outbreak should be.
They are working off of several key assumptions:
Much of their probable agenda has already been publicly discussed, but here are a list of the board's current stance on vaccine issues. from page 5 of the report:
Goals and Principles:
Of the greatest concern to me was this portion of the paper:
During the discussion, it was decided that the board would not only recommend having the first doses of the vaccine ready by September 15th, that they would shoot for September 1. However since the clinical trials of the vaccines will begin just this week, the studies will not be completed by the time manufacturing decisions must be made in order to meet the September deadline.
So it was decided to recommend that the first few tens of millions of doses be formulated and produced BEFORE the results of the clinical trials are in. After the trials are completed, they will then have the option to go back and make changes to the vaccine. It sounded like the second round of vaccine would be expected at the end of October, but they were not completely clear on that.
This means that members of the public who are vaccinated with the H1N1 flu shot in September and likely October will be receiving an untested vaccine. (Note that these will most likely be children, infants and pregnant women).
This seems contrary to the statement that Kathleen Sebelius made on the "Meet The Press" this week when she said:
"We're on track to have a vaccine ready by mid-October. We need to make sure it's safe, and so clinical trials will begin. And we need to make sure it's, it's effective against this new novel strain. So that's what's happening in the meantime. And if the scientists say it's a go, by mid-October we will have a vaccine available and start with the priority communities."
Scientists are already saying "go" and the people will have no such assurances that it will work, or be safe, when it is first administered.
The National Biodefense Science Board [HERE] will be meeting at least once a month for the next six months as this plan evolves. By law all meetings must be open to the public, and they are being teleconferenced. I encourage our community to be listening in and providing public comment and questions.
Ginger Taylor, M.S. is a former marriage and family therapist raising her seven year old son Chandler, who lapsed into autism following his 18 month vaccinations. She blogs at AdventuresInAutism.com
|18||National Vaccine Information Center Questions Safety of School-Based Swine Flu Vaccine Programs|
|NVIC Vaccine Conference Oct. 2-4, 2009 To Address Vaccine Safety Concerns
WASHINGTON--(BUSINESS WIRE)--The National Vaccine Information Center (NVIC) is calling on the Obama Administration and state Governors to provide evidence that it is necessary to give experimental swine flu vaccines to children in schools and that strong mechanisms for vaccine safety screening, recording, monitoring, reporting and vaccine injury compensation are in place. NVIC announced that parental concerns about vaccine safety and vaccine mandates will be addressed Oct. 2-4, 2009 in Washington, D.C. at the Fourth International Public Conference on Vaccination.
“Parents and legislators should be asking themselves right now: Why are children the first to get experimental swine flu vaccines? Are schools equipped to get signed informed consent from parents before vaccination, keep accurate vaccination records and screen out children biologically at high risk for suffering vaccine reactions? Will people giving these vaccines know how to monitor children afterwards and immediately record, report and treat serious health problems that develop? And will states have the financial resources to compensate children who are injured?” said NVIC co-founder and president, Barbara Loe Fisher.
According to the FDA, swine flu vaccines will be tested for only a few weeks on a few hundred children and adults. NVIC is questioning whether people giving vaccines to children in schools will obey safety provisions in the federal National Childhood Vaccine Injury Act of 1986 that include:
Giving written vaccine benefit and risk information to parents before vaccination;
NVIC’s October 2-4, 2009 Conference will feature more than 35 scientists, doctors, bioethicists and legal experts discussing the science, policy, law and ethics of vaccination.
For more information, go to www.NVIC.org
|19||Living with Autism: "Losing My Little Boy"|
|By Nancy Rones, REDBOOK
Nothing could have prepared Nicole Kalkowski for the agony of seeing her once-bubbly and affectionate son, Ryan, slowly slip away from her into the grip of autism -- a complicated and hotly debated condition that takes a heavy toll on every family it touches. Meet Nicole, her husband, and their children as they struggle to cope with one of the nation's fastest-growing developmental disorders.
The statistics are shocking. One in 150 children living in the United States has an autism spectrum disorder (ASD). And each year, the numbers tick upward by 10 percent to 17 percent. Although the causes of autism are under debate, the families affected by this perplexing disorder agree that it's a singularly terrifying diagnosis. Major signs include problems with communication and social interaction, from the child who doesn't smile at his mom to one who stops speaking. Unusual and often repetitive behaviors, such as rocking back and forth, are also strong indicators -- and agonizing for a parent to witness. And once an ASD is suspected, there's no time to lose: Children with autism can make the most progress before they turn 3, in what's commonly called the "crucial window" of brain development. When autism invades a home, life gets flipped on its head. This is a reality that Nicole Kalkowski faces every day. After her toddler, Ryan, showed red flags for autism, she struggled to get answers. In this multipart series, REDBOOK follows Nicole and her husband as they race against time to help their son.
Sitting in the family room of her Las Vegas home, Nicole Kalkowski lights up when she sees her 2-year-old, Ryan, come bopping down the stairs. Entering the room, he begins walking in circles and gazing at his fingers, which he's fluttering close to his face. As if on cue, Nicole leaps up, playfully tosses Ryan onto the couch, and stretches and massages his legs while singing a made-up song. For a moment, he looks up at her. Nicole is elated, showering him with praise: "Good eye contact, Ryan!"
Ever since Ryan's development began to backslide in November 2006 -- when he stopped saying the words he'd learned -- these seemingly small accomplishments, or "mommy moments" as Nicole calls them, carry this 35-year-old stay-at-home mom through the tough days, of which she's seen many in the past year. For Nicole and her family, including her husband, Tim, 37, and daughters, Ciera, 8, and Ella, 6, the long journey leading to Ryan's shocking diagnosis of autism has been an emotional tug-of-war.
A Sweet, Bubbly Boy
From the time he was born, Ryan was the most social of the Kalkowskis' three children. "He was full of big smiles and would let anyone hold him," recalls Nicole. "As a toddler, when he heard a group of adults laughing about something, he'd let out a big chuckle the second everyone was quiet. He pretended to understand what we were talking about so he could be part of the group."
Beyond being "a ham," as Nicole affectionately puts it, Ryan was on track developmentally. He waved, blew kisses, and by 14 months, he was putting two words together, such as hold you." Leading the typical toddler life, Ryan had weekly playdates and was toted around to the mall, to his sisters' activities, and to their school. "The school was also our church, so we were there a lot and Ryan was well-known," she says. "Everyone was excited to see him."
His biggest admirers, however, were at home. His sisters adored their bedtime routine with Ryan, who would grab his blankie and head to each of the girls' rooms to say goodnight. "He gave them a big hug and blew kisses," says Tim, who owns a contracting business. "Sometimes he crawled into their beds to cuddle. The girls couldn't get enough."
When Ryan was 17 months old, Nicole took her outgoing toddler for a routine checkup and immunizations. "He's doing well," the pediatrician said. But over the next week, Ryan became lethargic and pale. He had chronic diarrhea. And he lost his appetite. Nicole was out of her mind with worry. The doctor ran tests, assuming a virus was to blame. Two months later, when Nicole saw Ryan munching on a granola bar, "I felt like I'd hit the lottery," she says.
Her elation was short-lived. Within two weeks, Ryan had a string of ear infections and stopped saying some of his usual phrases, like "bye-bye" or "night-night." Days later, he no longer responded to his name or brought her toys. Wondering if he was speech-delayed, Nicole took her concerns to friends; they assured her that "boys are slower with language." Their comments seemed to make sense. "Eight years ago, I was a special-education teacher, so I questioned whether I was overly tuned into the situation," says Nicole. "So we told ourselves, 'Ryan is busy learning other skills, and the ear infections slowed his language.'"
Just before Ryan's second birthday, Nicole's anxiety returned. Her little boy still hadn't recovered his lost words and wasn't making much eye contact. His sweet bedtime routine ended too. "I'd lead him into his sisters' rooms, but he refused their hugs," Tim recalls. Eight-year-old Ciera cried, "Why doesn't Ryan love me anymore?"
Nicole's concerns continued to swell when she saw an episode of Oprah on identifying autism. "It described a type known as 'regressive,'" says Nicole. One of the early signs: loss of language. Nicole's heart sank, and she insisted to Tim that they take Ryan to the pediatrician.
The doctor asked, "Does Ryan get excited when he hears the garage door open when Daddy gets home?" The couple nodded yes.
"Does he have receptive language?" -- meaning, if you say it's time to go bye-bye, he gets his shoes. The couple again nodded yes.
"Does he put two words together?" Nicole explained that she hadn't heard some of his old two-word phrases like "bye-bye," but he did have some new words.
"Just work with him on two-word phrases," the doctor said. "Ryan's fine."
The Search for Help
But Nicole still feared that Ryan was not fine at all. And one morning in late July, four months after seeing the pediatrician, her fears were confirmed. She went into Ryan's room to get him from his crib, and he wasn't saying "Mama" as usual. When she lifted him up, he tried to push her away. Distracted by her daughters, Nicole left Ryan for a minute. When she returned, he was on the floor with his back to the door, rocking slightly, and painstakingly lining up toy cars in a straight row. "At that moment, time stood still," says Nicole. "I desperately called his name, but he wouldn't turn around. I wasn't asking one more person if something was wrong; I knew there was."
Distraught, Nicole contacted Nevada's Bureau of Early Intervention Services (NEIS), the state agency that provides services to kids under 3 with developmental delays. The first available appointment was a month away.
During that wait, Ryan's symptoms snowballed. He fixated on objects, such as the spinning wheels on his cars, and he held his fingers near his face, repeatedly flicking them. Noisy places triggered wild tantrums. "At my daughters' school, he screamed and kicked people," says Nicole. "Wearing a smile for my daughters was difficult. Most of the day, I cried, trying to get Ryan to look at me. The feeling of losing him was killing me."
Finally, at the end of August, the Kalkowskis had their evaluation with an NEIS developmental specialist and a speech pathologist. During the three-hour meeting, Tim choked up as he described Ryan's behavior: "It all hit me," says Tim. "Talking about the negatives -- what he wasn't doing well -- was painful. And hearing that our 2-year-old was performing at a 1-year-old level was the worst."
Toward the end of the meeting, the NEIS specialists told Nicole and Tim that although their agency wouldn't provide a diagnosis, Ryan did qualify for some services. The couple was upset -- they knew Ryan had to receive a diagnosis in order to get the full range of therapies he needed. The Kalkowskis also felt let down by the meager amount of therapy the state would offer. Instead of seeing both occupational and speech therapists, Ryan would be assigned a "coach" who would tackle both areas of treatment. For only two hours a week, the coach would work with Ryan and teach Nicole and Tim the therapies, so they could perform them the rest of the time. "I kept reading that 40 hours of behavioral therapy is what you need for the most improvement," says Nicole. "We weren't even close. And hearing that Tim and I would be responsible for so much of the speech and OT [occupational therapy] scared us." Nicole was terrified that her son would lose his best chances for any kind of recovery.
Worried and confused, Nicole immediately sank into a depression. "I didn't sleep and became obsessed with autism," says Nicole. "I read every Website and book. When love and anger ball up in you like that, you can read faster than ever." Meanwhile, Ryan's condition worsened: His hands were often curled into fists and he stopped eating with his fingers; instead, he used Nicole's hand to pick up food and put it into his mouth. Nicole was afraid that he faced severe autism. "I had no hope and felt like my heart was being torn out," she says. "I worried that he'd never have friends and would never tell me, 'I love you.' I worried about his sisters and how it would be growing up with a brother with a horrible disorder. I feared for my marriage because I knew the statistics about couples who have children with autism aren't good. I feared for everything in his future and the future of our family."
For two long weeks, Tim watched his wife of 13 years become withdrawn and desperate; finally, he decided that they had to talk. A teary-eyed Nicole recalls that night: "He said: 'What are you doing? You can't keep this up. Ryan will be fine, and don't think you know his whole future because he has autism.' Then, in a caring way, he added, 'You helped so many other kids when you were a special-ed teacher, and you can't give up hope when it's your own child.' After, we prayed together. That night, I felt deeply connected to Tim, and realized Ryan would be fine."
A Fierce Determination
With that adjusted perspective, Nicole began her search for information anew, seeking out Websites that used words like hope and recovery. Choosing not to be limited by Nevada's offerings, the couple hired private speech and occupational therapists. "Two months before Ryan started losing words, we moved into our 'dream house' and cut down on spending," says Nicole. "We had no budget for two therapists to come once a week at $135 each, but there was no time to spare."
Nicole was also determined to get a diagnosis and more state-funded therapies for Ryan. She contacted autism-advocacy groups and learned that having Ryan evaluated and diagnosed by a doctor who specializes in detecting and treating developmental and behavioral difficulties (what's known as a developmental pediatrician) would officially qualify him for state-funded services. During a planning meeting she had with her team of NEIS specialists, she insisted on getting an appointment with the organization's developmental pediatrician. Her demand was met, and she had an appointment scheduled for two weeks later. Still, she was afraid of getting the runaround and once again walking out the door without a diagnosis.
Nicole felt her next move would make all the difference: She took Ryan back to their family pediatrician for a diagnosis. The doctor was shocked to see the once-vivacious boy she'd known sitting in the corner, staring at his fingers. She listened as a shaken Nicole rehashed all that had happened with Ryan. The doctor hugged Nicole, and handed her a diagnosis of autism.
That gave Nicole more confidence when meeting with the developmental pediatrician about a week after, in late September. The doctor agreed that Ryan had autism, and in addition to the therapies they were learning from the NEIS coach, the doctor approved a larger range of services, including a speech therapist, occupational therapist, and nutritionist.
Since that diagnosis, the scope of Nicole's daily to-do's has become mind-boggling. The biggest nonnegotiables on her schedule board -- which is prominently posted over her desk -- are practicing the therapies she's learned. About five times a day, Nicole "brushes" Ryan: She strokes his back, hands, arms, legs, and feet with a plastic-bristled brush to help him adjust to sensations, including touch, which can overwhelm him (sensory issues are common among children with autism). For the same reason, she does "heavy work" with Ryan three times a day; she might, for instance, have him pick up a weighted ball. And she gives him deep-pressure joint compression massages (she presses on combinations of joints, such as ankle and knee, to release the calming brain chemical serotonin). Nicole wishes she had more time to explore treatment options. No matter how much she does, Nicole is certain she's not doing enough.
"With everything that's going on with Ryan, I have trouble balancing attention between my kids," says Nicole. "For example, I may walk away from doing homework with my daughters when Ryan needs something. Then I hear, 'Why are you always going to Ryan?' It makes me wonder what else I'm messing up."
Looking at her schedule board, she does point out bright spots: Sunday evenings, after the kids are asleep, she enjoys quiet time with Tim. There's also an upcoming lunch with her girlfriends. And then there are the Monday-morning playdates with a friend from church and her son. "It's been healing when people like Sue show up at my door to offer support," she says. "She and I walk and take the boys to the park. It's the one day I feel like a normal mother again."
Look for the next installment of Living With Autism in the May issue of REDBOOK.
|20||Swine flu vaccine to be cleared after five-day trial|
|Jon Ungoed-Thomas, The Sunday Times
The path of a popular medicine from the laboratory to the chemist or doctor’s surgery can involve years of clinical trials on a select group of patients.
When the new vaccine for swine flu arrives in Britain, regulators said this weekend, it could be approved for use in just five days.
Regulators at the European Medicines Agency (EMEA) said the fast-tracked procedure has involved clinical trials of a “mock-up” vaccine similar to the one that will be used for the biggest mass vaccination programme in generations. It will be introduced into the general population while regulators continue to carry out simultaneous clinical trials.
The first patients in the queue for the jab - being supplied to the UK by GSK and Baxter Healthcare - may understandably be a little nervous at any possible side effects. A mass vaccination campaign against swine flu in America was halted in the 1970s after some people suffered Guillain-Barré syndrome, a disorder of the nervous system.
However, regulators said fast-tracking would not be at the expense of patient safety. “The vaccines are authorised with a detailed risk management plan,” the EMEA said. “There is quite a body of evidence regarding safety on the trials of the mock-up, and the actual vaccine could be assessed in five days.”
The UK government has ordered enough vaccine to cover the entire population. GPs are being told to prepare for a nationwide vaccination campaign.
Dr Peter Holden, the British Medical Association’s lead negotiator on swine flu, who has been attending Department of Health meetings on the outbreak, said GPs’ surgeries were prepared for one of the biggest vaccination campaigns in almost 50 years.
He said although swine flu was not causing serious illness in patients, health officials were eager to start a mass vaccination campaign, starting first on priority groups. First, the jabs would reduce the chances of a shortage of hospital beds because of people suffering from swine flu. Second, it would reduce the effect on the economy by ensuring workers were protected from the virus.
“The high-risk groups will be done at GPs’ surgeries. People are still making decisions over this, but we want to get cracking before we get a second wave, which is traditionally far more virulent.”
Holden said it was likely the elderly would be given their seasonal flu jab as well as the swine flu vaccination. The new vaccine is likely to require two doses.
Details of the inoculation plans emerged after the death of a patient, reportedly a middle-aged man, at a hospital in the Basildon area of Essex. The victim had no underlying health problems, but officials say there is no evidence the swine flu virus had mutated into a more dangerous strain.
Holden said it would be the biggest campaign in response to an outbreak since mass vaccination against smallpox in 1962. He said surgeries would be aiming to inoculate about 30 people an hour in a “military-style operation”.
The Department of Health said it had still not finalised which groups would be vaccinated first, but children, frontline health workers, people with underlying illnesses and the elderly are likely to take priority.
The European Commission is also identifying population groups which it believes should get priority. It is keen to ensure that countries such as the UK, which had ordered supplies of the vaccine in advance, do not cause inequities in treatment elsewhere in Europe.
It warned health ministers in a note circulated last month that if the vaccines were more readily available in some countries it could cause “vaccine tourism/shopping in other member states”.
About 15 people have died of swine flu in Britain, but most of those infected get only mild symptoms. According to the latest figures from the Health Protection Agency, the UK has had 9,718 confirmed cases of the disease.
|21||Press Complaints Commission Orders Sunday Times to Remove MMR Journalist’s Stories on Dr. Wakefield from Paper’s Web Site|
|Work by Reporter Brian Deer is at Center of Investigation Being Conducted by Medical Regulators
(Austin, Texas) – The Press Complaints Commission (PCC) of London, an independent body that oversees journalism fairness in the UK, has issued an interim order calling for the Sunday Times to remove stories written by Brian Deer about Dr. Andrew Wakefield from its web site. Dr. Wakefield had filed an extensive complaint with the PCC regarding errors of fact in Deer’s reportage on the MMR vaccine and its possible relationship to autism. The General Medical Council (GMC) in the UK is presently hearing evidence involving Dr. Wakefield and two of his colleagues following a complaint to the GMC by Deer himself. The PCC decision today appears to indicate there are questions about the accuracy of the Deer stories.
|22||Autism Vaccine Complaint Movie: "Selective Hearing, Brian Deer and the GMC"|
|By Mark Hawking, Age of Autism
In light of the PCC ordering the Times Newspaper to remove Brian Deer's latest material from its website (HERE), I thought it would be a good time to write about the film “Selective Hearing, Brian Deer and the GMC” and my involvement in its making.... The video is below, if it doesn't download, you can click HERE.
The film has been igored by the UK press despite a copy being sent to every major news editor.
To set the scene we need to go back two years to the opening day of the GMC. I was there with my wife Lara and members of the UK Treating Autism Charity, supporting the doctors and also (in my mind at the time the more important task) talking to the press about how recovery is possible.
We had our first encounter with Brain on his return from lunch with the MP Dr Evan Harris. Brian had trouble with the front door at the GMC, he pushed the wrong door and rather comically bumped his whole body into it. There was a large cheer from the crowd as Brian skulked inside a bit red faced.
My mother had a saying, when as a naughty child I would trip or fall whilst up to no good "THE DEVIL DID THAT" she would say. This lit up in my head like a neon sign.
A year passed, and the time came for Andy to answer the prosecution. I had been busy on eBay buying a second hand camcorder (a model with 3CCDs and an external mike input and a Rode mike.) This was the best I could afford that looked amateurish but gave broadcast quality pictures.
The night before Lara and I set about making some placards starting with "1 in 100: Why?" and "HONK" (to be held up to passing traffic.)
Please set aside an hour to watch it and encourage others to watch it too. If you are a TV channel and would like to broadcast it please contact us through the editors of Age of Autism at firstname.lastname@example.org.
|24||Federal Circuit reverses denial of vaccine injury claim|
|The National Law Journal
A recent U.S. Court of Appeals for the Federal Circuit decision reversing the U.S. Court of Federal Claims' denial of a vaccine injury claim highlights the widening gulf between the Federal Circuit and Federal Claims court on vaccine cases.
|25||CDC eyes 600 million doses of swine flu shots|
Unprecedented amount is six times more than annual seasonal flu shots
ATLANTA - A potential fall swine flu immunization campaign may involve an unprecedented 600 million doses of vaccine, though officials said Friday they haven’t figured out how to administer so many doses or accurately track side effects if a seasonal vaccine is given simultaneously.
The swine flu campaign could far eclipse the roughly 115 million doses of seasonal flu vaccine distributed each year, officials said at a national vaccine advisory committee meeting.
No final decision has been made about whether a swine flu vaccination campaign will take place or whether all Americans would get immunizations. Health officials said that a swine flu vaccination campaign could be only a few months away, and that as many as 60 million doses could be ready by September. The timing depends on how fast a vaccine can be produced and tested, however.
However, health officials are clearly getting ready for a massive vaccination effort, and worry that illnesses could continue or even accelerate in the fall or winter. Preparation discussions dominated a three-day meeting in Atlanta of the Advisory Committee on Immunization Practices, a panel that guides U.S. vaccination policy.
The virus already has caused at least 27,000 illnesses and 127 deaths in this country. Twelve states are seeing widespread cases, and about 6,000 cases were reported in the past week — more than in any other week since swine flu first appeared in late April.
Those are just reported cases. More than a million U.S. infections probably have occurred, said Dr. Anne Schuchat of the U.S. Centers for Disease Control and Prevention.
“This new infectious disease is not going away,” said Schuchat, director of the CDC’s National Center for Immunization and Respiratory Diseases.
A new, small CDC study found the virus can cause more serious disease than seasonal flu in ferrets, which have a similar respiratory system to humans. But it does not seem to spread as easily, at least through the droplets that infected ferrets sneeze or cough into the air, said Dr. Nancy Cox, a CDC flu scientist.
However, officials are still worried about the seasonal flu, which causes an estimated 200,000 hospitalizations and 36,000 deaths each year.
Five flu vaccine manufacturers are producing 120 million doses for the 2009-2010 flu season, with a third of that available by Sept. 1 and most of the rest shipped by Nov. 1, CDC officials said. Federal officials are working to ensure a swine flu campaign doesn’t force the manufacturers to scale back production of the seasonal vaccine.
The swine flu campaign could be a huge undertaking, involving as many as 600 million doses. Although about 300 million people live in the U.S., health officials anticipate children and perhaps adults under age 50 may need two doses each.
However, the logistics of such a campaign are still being worked out. The CDC relies on one company to distribute 80 million publicly financed vaccine doses for children. That company, McKesson Specialty, still has not said whether it could handle distributing as many as 600 million doses of swine flu vaccines to clinics and doctors around the country, said Dr. Jeanne Santoli, who oversees vaccine purchase and distribution for the CDC.
Officials said they’ll probably need to recruit physicians who don’t usually give flu shots because local health departments have cut more than 10,000 jobs. Tracking side effects could also be tricky.
Problems don’t always show up in early studies. And if the vaccine is given at the same time as the seasonal flu shots, it could be difficult to figure out which vaccine is causing problems.
That happened in 1976, when officials vaccinated 40 million Americans in anticipation of a new strain of swine flu. But the pandemic never materialized, and at least 500 people who got the shots came down with a paralyzing condition called Guillain-Barre Syndrome. It’s still unknown what caused the condition.
Some health officials said they’d rather start a swine flu vaccine campaign a few months after the seasonal shots to simplify side-effect monitoring. But they may not have a choice, said Cox, the CDC flu scientist.
Swine flu and seasonal flu have been circulating together, with new data from Australia — which is experiencing its annual flu season — indicating that flu cases there are 60 percent swine and 40 percent seasonal.
“There are too many complexities” to say what will be done in the fall, Cox said. “We’ll have to wait and see.”
|26||Reps. Maloney and Smith Ask HHS to Fund Vaccinated-Unvaccinated Study with Federal Stimulus Money|
|David Kirby on the HuffingtonPost.com
On Wednesday, Rep. Carolyn Maloney (D-NY) and Rep. Christopher Smith (R-NJ) called on HHS Secretary Kathleen Sibelius to dedicate between 1.6% and 6.6% of the $300 million in federal stimulus funds earmarked for the purchase and distribution of vaccines to fund a major study of health outcomes – including autism -- among vaccinated and unvaccinated people.
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