Legislation that would have required many Virginia employee health care plans to cover a treatment for autistic children died Tuesday under business and insurance industry claims that its costs would hurt business.
Sen. Janet Howell’s bill was tabled Tuesday on an unrecorded voice vote by a House Commerce and Labor subcommittee.
The defeat ends a 2010 legislative push by families of children with the neurological disorder to secure coverage for a treatment called applied behavior analysis.
“They were lobbied hard by the insurance and business lobbies not to stand up for children and families,” said Mark Llobell of Virginia Beach, grandfather of an autistic child and one of several tearful relatives who consoled one another after the vote.
ABA treatments cost $30,000 a year and up. Many middle-class families forced to pay the costs themselves confront financial ruin.
Virginia is among 35 states that do not compel insurers to cover the ABA treatments, which specialists say are the best hope autistic children have for living a normal life.
Howell, D-Fairfax County, presented the subcommittee members with a photo of her grandson, Bode, a child with autism.
“He’s in a good place. He’s in Arizona, not Virginia,” she said, noting that Arizona mandates insurance coverage of the treatment. “Kids in Virginia shouldn’t be treated any more shabbily than those in Arizona.”
An actuary who studied likely costs of additional mandated coverage for ABA said the expenses would increase by only 0.2 percent.
Some legislators were troubled that the bill mandated coverage for private employee health plans but excluded state employees until 2015, a concession to a $4 billion shortfall looking for the 2011 and 2012 budgets.
Why were state employees ever excluded, asked Del. Sam Nixon, R-Chesterfield.
“Because we’re bankrupt,” Howell replied. “We don’t have the money right now.”
Robert N. Bradshaw Jr., a lobbyist for the Virginia Independent Insurance Agents, used that argument to benefit the opponents.
“Frankly, businesses are at the breaking point,” Bradshaw said. “If the state can’t afford it today, what makes you think small businesses can.”
Del. Jeion Ward, D-Hampton, sought to amend the bill to force it to apply to all private insurers as well as state employees beginning in July 2012. Her motion failed, and the panel subsequently killed the bill.
By BOB LEWIS, The Associated Press Political Writer
RICHMOND, Va.― Legislation that would compel insurers to pay for expensive but effective treatments for children with autism won overwhelming passage Tuesday in the state Senate despite opposition from mighty insurance and business lobbies.
On a 27-13 vote, Sen. Janet Howell’s bill advances to the House, where a companion measure died on a tie vote in a subcommittee two weeks earlier.
The bill would mandate coverage by certain employee health plans for applied behavior analysis, the treatment that psychiatric and medical officials say is the most effective and promising for children with autism. Insurers say ABA is an educational service, not a medical one that should be covered.
Howell’s bill restricts coverage to children from age 2 years through 6, and limits annual insurance outlays for ABA to $35,000. Because of the record $4 billion gap facing the next state budget, it exempts state employees from required coverage until 2015.
“This bill is so limited, and it breaks my heart it’s so limited,” Howell said. “But it’s a small step, a baby step, for children with autism spectrum disorder and their families.”
Autism Speaks, a national advocacy group for families of autistic children, contends that mandated ABA coverage in Virginia would increase the cost of health insurance premiums per insured by $10 to $25 a year, less than a 1 percent increase.
A 2008 study by the General Assembly’s Joint Legislative Audit and Review Commission said 7,509 children 20 or younger with autism received special education and related services in public schools as of December 2007. That’s a little more than half of the nearly 14,000 estimated cases of autism in Virginia.
Opponents, including Virginia’s health insurers, the Chamber of Commerce and the National Federation of Independent Businesses, contend mandated coverage would mean higher premiums, forcing employers to either drop insurance plans, lay off workers or even close.
While the bill faces tougher challenges in the strongly Republican House than the Democratic-controlled Senate, Tuesday’s victory was significant for supporters in a General Assembly known for its hostility toward spending mandates on businesses.
By only a 19-21 vote, the bill survived a floor amendment from Sen. Frank Wagner that would have marked the bill for death by adding state employees to those entitled to mandated ABA coverage. That would have required new spending in a budget already facing draconian cuts to public schools, health care and other traditional priorities.
“If we think it’s good enough for our private insurance plans in Virginia, then it ought to be good enough for our state employees,” Wagner said, saying businesses were struggling no less than state government.
Sen. Walter A. Stosch, R-Henrico, whose suburban Richmond district is rich with state employees, agreed.
“I happen to have experience in my family with autism. I am very familiar with the impact that autism has on families, but to say that we cannot cover state employees because of the fiscal constraints is almost ridiculous,” said Stosch, an accountant and a member of the budget-writing Finance Committee.
Howell appealed to colleagues to reject the amendment and “not let the perfect be the enemy of the good.”
During the debate, Lavada Robertson of Franklin County and Amy Trail of Vinton, mothers of autistic children, watched from the Senate gallery and wept silently. While Howell’s bill comes too late to help their children, “I don’t want any other moms to have to go through what we have,” Trail said.
WASHINGTON, D.C. – There are new developments in the story FOX 5 first brought you about a Redskins cheerleader left disabled by a seasonal flu shot. Now, Desiree Jennings is adding a boost of star power to her cause.
An organization founded by actors Jenny McCarthy and Jim Carrey is so touched by Desiree’s story that they have reached out to offer not only words of encouragement, but the organization’s support.
Desiree Jennings’ struggle is getting worldwide attention.
“It’s been unreal,” Jennings told FOX 5. “I didn’t think anyone would even care about my story. People are sitting there crying and I can’t understand why.”
She first spoke to FOX 5 about a severe reaction she suffered after getting a seasonal flu shot. Now, both Fairfax Inova and Johns Hopkins say Desiree suffers from a rare neurological disorder as a result of the flu shot. The condition is called dystonia, and it affects every aspect of her ability to function. One day after our story aired, Generation Rescue, an organization founded by actors Jenny McCarthy and Jim Carrey , reached out to Desiree.
“They are extremely helpful,” Desiree said. “They have a lot of doctors that deal with vaccine interactions, and they have sent us so many other stories similar to mine. Unfortunately a lot of theirs are with children, which is worse. I can understand it happening to an adult, but not a little child that hasn’t had a chance to live their life and can’t speak, so I want to speak. They can’t, and I want to help them, too,” says Jennings.
McCarthy’s 7-year-old son Evan is autistic. She founded Generation Rescue along with actor Jim Carrey to educate people about ways to reverse autism. The organization is now raising awareness over the safety of vaccines including flu shots. Generation Rescue’s President Stan Kurtz was so touched by Desiree’s story, the organization is hoping to fly her to Los Angeles for treatment.
“And the story is, anyone that sees– it is just so compelling, Jenny was crying over it,” says Kurtz.
Kurtz also believes with the proper treatment, some of her symptoms may be reversible.
“Well, unfortunately we happen to be very good at handling vaccine injury. We’ve got a lot of doctors that have experience in doing that, so our doctors and our resources are completely available to her, and we’re going do everything we can to give her a lot of options to, to help take care to help recover from this condition as best we can,” says Kurtz.
For Desiree, it’s a glimmer of hope and a chance at getting her life back.
“Get back to my normal life, but still have had a chance to warn people as well,” says Jennings.
Still, the Centers for Disease Control says the seasonal flu vaccine is safe and recommends it to the general public. Desiree, in the meantime, wants to get her message out about her concerns over the safety of vaccines.
ORIGINAL STORY ON DESIREE JENNINGS AND HER CONDITION:
Woman Disabled by Flu Shot Reaction
WASHINGTON, D.C. – An Ashburn, Virginia woman is in the fight of her life after suffering a very rare side effect to the seasonal flu shot.
The vast majority of doctors say flu shots are safe. In this case, the FDA says they found nothing wrong with this particular batch, but sometimes there are complications.
That’s apparently what happened to Desiree Jennings, and now her life will never be the same.
At 26 years old, Desiree Jennings was the picture of health. She’s a Washington Redskins cheerleader and an avid runner. Her life changed forever on August 23 when she says she got a seasonal flu shot at a local grocery store.
“I was training for a half marathon then,” said Jennings, crying. “It just all went so fast.”
Ten days after receiving the shot, she came down with the flu. After that, her health spiraled downwards. She started passing out and had to be hospitalized twice.
“We went to an urgent care place and they wouldn’t even let her get out of my truck because she was seizing in the back so bad, so they called an ambulance immediately,” says her husband, Brendan Jennings.
Doctors at Fairfax Inova and Johns Hopkins diagnosed her with a rare neurological disorder called dystonia. They think it was caused by a severe reaction to the flu shot.
Desiree now has difficulty speaking, walking, and even eating. During an interview with FOX 5, she had several seizures. The effects are irreversible.
“The symptoms will get worse if I use my voice or walk when the brain signals are misfiring,” says Jennings.
Desiree reported her health problems to the Food and Drug Administration (FDA) thinking there might have been something wrong with her vaccine. We also contacted the FDA and we were told they found no problems with the particular lot of flu vaccines that Desiree received, and the agency has not received any other reports of adverse effects from this lot.
Health experts stress that overall, extreme side effects are rare.
“The flu shot is safe for the majority of the public, and as I said before, your heart goes out to someone that experiences this sort of thing– thinking that they are doing something great for their wellness and their general health, but it does happen in extremely rare cases,” says Rachel Lynch with Fairfax Inove Health System.
For Desiree, she just happened to be one of those rare cases.
“I just don’t want this to happen to anyone else,” says Jennings.
Desiree and her husband plan to visit the Mayo Clinic in Arizona in November. They’re hoping to get more answers about this disease and how they live with it.
Desiree has received flu shots before in 2007 and 2008.
Public services for Virginians with autism suffer from poor organization and limited resources and fail to offer help early enough. Many school systems also are unable to meet the needs of their autistic students, according to a report released yesterday by the General Assembly’s lead audit review agency.
The study, by the Joint Legislative Review Commission, assessed services for Virginians with autism spectrum disorders and also found that many parents of autistic children waited more than a year to seek help for their children after noticing possible symptoms.
“To date, there hasn’t been a central agency in Virginia that has handled autism. Autism systems in Virginia tend not to be coordinated, which makes it difficult for parents and families to figure out how to get help,” said Nathalie Molliet-Ribet, project leader for the study. “And many in the school system lack adequate training to fully meet the needs of children who might require extra help and assistance.”
Autism is a brain development disorder that typically reveals itself before a child’s third birthday. Symptoms can include repetitive or obsessive behavior, communication problems and impaired social skills. The disorder affects about one in every 150 8-year-olds — a tenfold increase in the past 20 years.
More than 11,000 people received autism-related services in Virginia last year at a cost of $271.5 million, according to the report.
Although research has shown that early intervention can ease the impact of autism, parents in Virginia waited, on average, five months to seek professional help for their children after noticing possible symptoms. On average, families did not begin professional counseling for their children until one year after alerting a medical professional to the child’s condition, the study found.
“What we found anecdotally is that there may have been a lack of acceptance on the parent part about what might be wrong,” Molliet-Ribet said. “In many cases parents are told, ‘Well, maybe your kid will grow out of it.’ So, they wait.”
The report found that, in many cases, early intervention could save the state money. Some states, including Pennsylvania and Ohio, have saved $187,000 to $207,000 per child per year in education and other costs because early intervention reduced the need for intensive services when the children got older.
“There really isn’t adequate information about what is available and what families can do immediately to have their children diagnosed,” said C. Lee Price, director of the office of developmental services for the Department of Mental Health, Mental Retardation and Substance Abuse Services, one of the state agencies responsible for providing services to people with autism.
Although many of the study’s conclusions are mirrored across the country, the commission’s review found that Virginia does not have a specific mechanism for drawing down federal money for people with the condition. Some lawmakers said the state must look at private-sector alternatives.
“I didn’t hear much about what public-private partnerships we can create to help these families and develop programs,” said Del. Phillip A. Hamilton (R-Newport News), who is vice chairman of the Joint Commission on Health Care. “This is a problem that we need all kinds of solutions to, from both the public and private sector.”
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