PHOTO Tom Cullerton lifesaving PANDAS measure signed into lawLOMBARD- Children will soon no longer be denied treatment for PANDAS disease, thanks to State Senator Tom Cullerton (D-Villa Park).  

Cullerton’s initiative, House Bill 2721, now requires that all individual and group plans of accident and health insurance must offer coverage for treatment PANDAS and PANS.

“No child should suffer,” Cullerton said. “As the father of three young sons, I know I would move mountains to take away any ounce of pain. This new law is a testament to the incredible mothers who went to battle to support Illinois’ children to ensure they receive essential treatment and raise awareness for this tormenting disease.”

PANDAS which is known as Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal affects approximately 1 in 200 children throughout the United States.

Cullerton first became aware of PANDAS four years ago after meeting with the group formed by Executive Director Wendy Nawara and Vice President Kate Drury of PANDAS/PANS Advocacy & Support, whose children have suffered from PANDAS to raise awareness of symptoms and to require insurance companies to cover the cost of treatment for this fairly unknown illness.

Drury’s son, Charlie, woke up on his eighth birthday with unusual symptoms. The little boy who loved participating in talent shows and putting on skits was now scared of performing in front of crowds and talking to his friends. There was an immediate change in his personality.

The next two months of Charlie’s life were the hardest time for his family. He instantly displayed symptoms of obsessive compulsive disorder (OCD). Charlie didn’t want to be touched or hugged. He feared his food and was deathly afraid of water to the point where he couldn’t shower or brush his teeth. He suffered from hallucinations to the extent he was unable to recognize his mother or father.

Drury was faced with a difficult situation, either being forced to institutionalize her son or place her other two children in the care of a loved one.

After two months of looking for answers, a doctor diagnosed Charlie with PANDAS. Insurance companies didn’t cover the cost for his treatment, which can run upwards of $12,000 in hospital bills.   

"Our hope is that this law will give our physicians better control over the decision-making process when it comes to recognizing and treating PANDAS/PANS quickly and appropriately,” Nawara said. “Our doctors have been caught between a rock and a hard place knowing what their patients need to heal and knowing that the insurance companies
have refused to cover it, despite the evidence that expeditious treatment works best. To say nothing of the trauma and enormous strain this places on the children and their families. They've been watching their children slip away, and have felt that no one had the power to stop it. Now that insurance will cover these treatments, we can stop it. Kids will be getting better."

The new law will be known as “Charlie’s Law” was signed into law at Drury’s home on Tuesday, July 18. Illinois will become the first state in the nation to require insurers to cover treatment for PANDAS/PANS.

“It’s our duty to ensure our children don’t suffer. The faster we diagnose and treat children affected by PANDAS, the quicker kids can heal,” Cullerton said. “It is common sense to make sure there is treatment readily available to quickly treat children inflicted with PANDAS without loading Illinois’ parents with mountains of debt.”

House Bill 2721 will go into effect immediately.

Category: Press Releases

051915 js 0211.resizeSPRINGFIELD- State Senator Tom Cullerton (D-Villa Park) has launched a formal investigation into the corrupt Springfield warehouse the Department of Human Services and Central Management Services leased to store state file.

Cullerton passed House Joint Resolution 63 today, which will require the Auditor General to conduct an audit of the irresponsible contract negotiated by DHS to rent the former Barney’s warehouse for $2.4 million for five years that could have been bought for $750,000.

His measure will also stop the signing and finalizing of any lease by Governor Rauner’s agency heads until the audit is completed.

“It’s judgement day,” Cullerton said. “Illinois taxpayers should soon know the truth behind this corrupt leasing deal.”

House Joint Resolution 63 outlines questions Cullerton wants answered by the audit.

Here are a few of his questions:

  • The justification used to request a new space by DHS including the condition of the previous location used to store the state files, the former Dwight Correctional Center and whether if renovations were considered to the prison prior to moving the files
  • If CMS compared the cost of digitizing records instead of storing hard paper copies.
  • If CMS explored the possibility of using another state-owned or leased space before they made the decision to enter into a new lease 
  • If there was a cost-benefit analysis conducted by CMS of purchasing the building instead of leasing the warehouse and if there were costs incurred by DHS for remodeling the building to adapt to DHS’ use of the warehouse 
  • And the role of the procurement board, the body who reviewed the contract, and whether any members excused themselves due to a conflict of interest because of their relationship any owner of with the leasing company

The former Barney’s Furniture building is being leased from Chicago-based Climate Controlled Holdings LLC, which bought the building when Barney’s relocated. One of the owners of the company is William Cellini’s son-in-law.
Cellini, a politically connected businessman, served a time in prison after his conviction in 2011 of a failed attempt to shake down Oscar-winning film producer Thomas Rosenberg for a $1.5 million contribution to the campaign of currently imprisoned former Gov. Rod Blagojevich.

The records were moved from the closed prison which had little to no cost to taxpayers. Rauner’s administration had said that the prison building was in disrepair and the paperwork needed to be moved. But the state’s prison director told members of an Illinois Senate committee last month that he had no knowledge of this. He said he would try to get some answers.

Cullerton is outraged that as the state budget impasse continues, the administration is able to find time to cut sweetheart deals for political insiders.

“Governor Rauner has been busy cutting sweetheart deals for his insider friends instead of working with the General Assembly to pass a balanced budget to ensure our schools open their doors this fall, rape crisis centers are able to provide services and programs remain in place to help our seniors, disabled populations and veterans.”

Cullerton and Representative David McSweeney (R-Barrington Hills) were successful in their joint effort to request the Illinois Comptroller Susana Mendoza’s office to hold rent payments for warehouse space until the legislature is able to further review the contract.

“I’m here to send a strong message to Governor Rauner and his friends: the people of Illinois are not here to be pawns in your political games,” Cullerton said. “I refuse to stay quiet as you attempt to suck our state dry.”

House Joint Resolution 63 passed the Senate and House with overwhelming bipartisan support.

The Auditor General can begin his investigation immediately. After the report is completed, it will be released to the General Assembly for Cullerton to examine and determine whether further legislative action will be needed.

Category: Press Releases

PHOTO Tom Cullerton raises PANDAS AwarenessSPRINGFIELD— Children may soon no longer be denied treatment for PANDAS disease, thanks to Villa Park Democratic State Senator Tom Cullerton.  

Cullerton’s lifesaving initiative that will require Insurance companies to offer coverage for treatments of PANDAS — Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections — passed the House and Senate with bipartisan support.  

Cullerton has been working with the group PANDAS/PANS Advocacy for the last four years to raise awareness and require insurance companies to cover the cost of treatment for this fairly unknown disease that affects approximately 1 in 200 children throughout the United States.

“As the father of three young sons, I know as a parent you do whatever you can to protect your children from unnecessary pain,” Cullerton said. “I have been honored to work with these incredible advocates from PANDAS/PANS Advocacy, to support Illinois’ children in receiving essential treatment and raising awareness of this tormenting disease.”

Cullerton first became aware of PANDAS four years ago after meeting with the group formed by Executive Director Wendy Nawara and Vice President Kate Drury of PANDAS/PANS Advocacy & Support, whose children have suffered from PANDAS to raise awareness of symptoms and to require insurance companies to cover the cost of treatment for this fairly unknown illness.

PANDAS and PANS is the result of an abnormal immune response to common infections such as strep throat, walking pneumonia, mononucleosis and other similar infections.

Drury saw a drastic change in her son Charlie overnight, who once loved performing in talent shows and putting on skits. He woke up on his 8th birthday scared of crowds and of talking to his friends.

After two months of looking for answers, a doctor diagnosed Charlie with PANDAS. Insurance companies didn’t cover the cost for his treatment, which can run upwards of $12,000 in hospital bills.   

“As a parent, it is so hard to watch your child completely deteriorate in front of your eyes. You go to the doctor, get a diagnosis, and then are unable to access the treatment that doctor prescribes. The biggest problem our families have faced is that we've not been able to rely on our insurance plans to cover the doctor recommended, medically necessary care required,” said Nawara.  “This treatment gives our kids their lives back. We have needed this for a long time. Our families are so grateful that Illinois is taking these steps to help us."

HB 2721 will provide that all individual and group plans of accident and health insurance must offer coverage for treatment PANDAS and PANS. Once this measure is signed into law it will be known as “Charlie’s Law.”
Symptoms range from severe separation anxiety to motor tics that appear similar to seizures and hallucinations. There is a drastic change in behavior that often becomes severe enough to prevent children from attending school, not completing basic tasks like taking a shower or accepting a hug from their loved ones and avoiding extracurricular activities due to social anxiety.

Cullerton pledges to continue to work to raise awareness and support to help children like Charlie.

“There are effective treatments for children inflicted with PANDAS and PANS,” Cullerton said. “It’s common sense to make sure there is treatment readily available to quickly treat children inflicted with PANDAS without loading Illinois’ parents with mountains of debt.”

House Bill 2721 now moves to the governor’s desk for consideration.  Cullerton is hopeful the governor will approve this measure.

Category: Press Releases

PHOTO Tom Cullerton and Dennis Reboletti host successful Addison Community Senior FairADDISON — State Senator Tom Cullerton (D-Villa Park) and Addison Township Supervisor Dennis Reboletti held a successful senior fair last week.

More than 70 seniors and local residents stopped by to visit with 25 community and state vendors at the Addison Township Building to learn about different programs and services available.

“This one-stop shop provides seniors and their loved ones with new information on programs and services available to help seniors live healthy and independent lives,” Cullerton said.  

Cullerton hosts an annual senior fair in Addison to provide seniors in the area with this free resource. Some local organizations and agencies that participated in this successful event include the Addison Public Library, Addison Fire Protection District, Illinois Department of Veterans Affairs, Illinois Treasurer’s I-Cash Program and the National Ovarian Cancer Coalition.

“I work with my office to try to find a balance between state and local resources,” Cullerton said. “I’m thankful for the good work our community organizations do to give our seniors the best possible constituent service.”

DuPage Senior Citizens Council partners with Cullerton on multiple community events to help educate DuPage residents on different programs the county provides.

“Senator Cullerton’s Senior Fair was great,” said Marylin Krolak, executive director of the DuPage Senior Citizens Council.  “There were several excellent service providers and tons of information for seniors all under one roof. It was great to see one of our elected officials step up and provide an opportunity like this for DuPage seniors.”  

Cullerton urges area organizations and agencies to call his Villa Park office at (630) 903-6662 if they are interested in participating in upcoming community senior fairs.

Category: Press Releases

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CONTACT SENATOR CULLERTON

Welcome to the official website of Senator Tom Cullerton. Please fill out our contact form to contact Senator Cullerton directly or you may call either of our offices. We look forward to hearing from you.

District Office
338 S. Ardmore Ave.
Villa Park, IL 60181
P: (630) 903-6662
F: (630) 903-6643

Springfield Office
122 Capitol Building
Springfield, IL 62706
P: (217) 782-9463