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New proposal to aid those coping with mitochondrial disease

mulroe-mitochondSPRINGFIELD –The Senate Insurance Committee heard testimony today from Andrew Lawson, a young man who suffers from mitochondrial disease. A new proposal, Senate Bill 1515, would cover vitamins for sufferers of mitochondrial disease and is sponsored in the Senate by Senator John Mulroe (D-Chicago).

“I lost my vision one day when I was in high school,” Lawson said. “I was changing classes and I went from one room to the next, and BOOM, it was gone, like that.”

Lawson is a sufferer of mitochondrial disease, which causes systemic failure because of non-functioning mitochondria. Mitochondria are organelles within the cells of the body that produce the vast majority of the energy humans need to consume to function. Mitochondrial disease occurs when mutated mitochondria in the body stop working. There is no cure.

As a result of his diagnosis, Lawson is on a constant stream of vitamins, as there is currently no medication that corrects this problem. Under current law, health insurance providers do not cover vitamins, and while many over-the-counter vitamins are available, they are not potent enough for his needs and often contain fillers that make absorption difficult.

“Andrew needs something more to truly live his life, because his cells aren’t doing what normal cells do,” Mulroe said. “Moving forward we ought to do everything we can to assist people like Andrew in achieving a better quality of life.”

The measure is currently being considered in the Senate.

Plan to address abuse and neglect at DCFS residential treatment centers passes Senate

morrison-dcfs-042915SPRINGFIELD – A proposed law to address problems at the Department of Children and Family Services has cleared the Illinois Senate. The law would require DCFS to force child care facilities that provide homes to some of the most troubled children in the state’s care to take immediate action when an employee commits an act of abuse or neglect or fails to report a similar incident involving staff or other children.

Employees that endanger kids or fail to report abuse would face immediate discipline.

“These are children who have lived through abuse, neglect and abandonment. We fail them when they are beaten, raped, allowed to prostitute themselves or allowed to run away at a DCFS facility,” said state Senator Julie Morrison (D-Deerfield), the measure’s sponsor. “Any employees of a child care organization who are knowingly not keeping these abused and neglected children safe should be disciplined – up to and including losing their jobs.”

Morrison decided to introduce the measure, Senate Bill 1763, after a series of media reports last fall revealed that hundreds of children under the care of DCFS are abused and assaulted at residential treatment centers. These treatment centers are private organizations with state contracts to care for some of DCFS’s most troubled charges. They receive more than $200 million in taxpayer funding each year to provide around-the-clock care to about 1,400 children.

The reports exposed shocking stories to both the public and legislators. Between 2011 and 2013, children in these centers experienced more than 400 incidents of sexual abuse. They also experienced more than 1,000 physical attacks – sometimes from staff. Perhaps most shockingly, there were nearly 30,000 reports of children attempting to run away or going missing.

The legislation, which now goes to the Illinois House, also creates a task force to write new rules for the care of DCFS wards who are the victims of sex trafficking and creates a pilot program to recruit more qualified foster parents to care for children who have severe physical, emotional or developmental disabilities.

“I’ve been working with the new DCFS director, and I’m pleased with the direction he’s taking the department,” Morrison said. “We’re not going to reform DCFS in a day – or even a year – but this agency is so important that we have to make sure it fulfills its mission: protecting innocent children who cannot protect themselves.”

Jones helps business owners streamline annexation

jones-annexationCHICAGO – Several Cook County land owners were being asked by the Cook County board to annex their property out of unincorporated Cook County districts and join neighboring municipalities. State statue prohibited these small property owners from moving forward with the annexation process, so Senator Emil Jones (D-Chicago) filed legislation to allow property owners, many of whom own land smaller than one acre, to annex into nearby municipalities.

Douglas Engberg, owner of Ale House located on 135th and Harlem, was asked by Cook County board President Toni Preckwinkle to annex out of Cook County into one of the local suburbs so they could receive the government services they needed and reduce the burden on Cook County.

“Business owners were burdened with paying high taxes and weren’t receiving the services they needed,” Jones said. “Allowing small businesses to annex streamlines their regulatory responsibilities so they can focus on expanding their business and providing the local economy with more job opportunities.”

Mr. Engberg acknowledged that working with Cook County can be cumbersome because they have such a large case load.

“Tending to specific individual needs of land and business owners in unincorporated areas was stifling the county’s financial sustainability,” Jones said. “Working with smaller local municipalities streamlines bureaucracy, allowing for more efficient services and alleviating the County’s workload.”

Senate Bill 369 will now be debated in the House.

Bush, anti-heroin coalition urge greater access to overdose antidote

melbnarcanpresserARLINGTON HEIGHTS — At 24, Chris Reed runs The Other Side, a sober bar and support group that gives recovering addicts a place to socialize and have fun while they abstain. He vividly remembers the day he survived a heroin overdose.

“It felt like somebody was sitting on my chest,” he said. “I was in a panic.”

Reed’s friends rushed him to a drug treatment facility, where doctors came out to the parking lot and gave him a dose of naloxone hydrochloride, a heroin antidote that quickly and safely interrupts the chemical effects of an overdose.

“Before naloxone was readily available, it was only available to first responders in an ambulance or at a medical facility,” Reed said. “I was fortunate enough to have been with people who made the decision to take me to a place like that, but often times that’s not the case. You hear stories all the time of people not being taken to a facility like that and passing away.”

To ensure greater access to that antidote, Reed joined State Sen. Melinda Bush and a group of activists and professionals gathered at the headquarters of a local nonprofit today to call on the Illinois House to swiftly pass new legislation.

Naloxone hydrochloride, often sold under the brand name Narcan, is already in use by police and ambulance personnel, who have used it several times in the past few months to save lives in the suburban Chicago area.

“The tireless and courageous advocacy of the Live4Lali organization has caused law enforcement and the anti-drug community here in Illinois take notice,” Bush said at the organization’s Arlington Heights offices. “Police and EMTs continue to save lives with Narcan, but it’s friends and family members who are the first to know when somebody has an overdose. Let’s give more families the power to avert tragedy.”

Senate Bill 1466 has been dubbed “Lali’s Law” in honor of Alex “Lali” Laliberte, a Buffalo Grove man who died of a heroin overdose in 2008. His sister, Chelsea, helped found the Arlington Heights-based Live4Lali group, which promotes awareness of heroin addiction issues and has advocated for greater availability of Narcan.

The legislation specifies regulations on the provision and sale of Narcan at pharmacies, and would establish a program to help pharmacists train people in the use of the antidote. The antidote counteracts the effects of all opioid drug overdoses, including ones as a result of taking prescription narcotics, which Laliberte said are at the heart of more overdoses than illegal drugs like heroin. The antidote carries virtually no risky side effects if used in error.

Dr. Adam Rubenstein, a physician at Opioid Addiction Recovery Services in Vernon Hills, spoke on the antidote’s relative safety. He said greater availability of Narcan is important in the face of high heroin use among suburban youth.

“Police and first responders carrying the safe antidote Naloxone are saving lives,” Rubenstein said. “Granting access to families directly is one more essential tool to prevent more deaths during this opioid overdose epidemic.”

George Filenko, Chief of the Round Lake Park Police Department and head of the Lake County Major Crimes Task Force, said having Narcan available to officers has already prevented needless deaths.

“Effectively since Christmas, there have been 10 lives that were saved countywide by law enforcement officers with Narcan,” Filenko said. “The last two saves were within five days of each other, by the same officer. We didn’t have that ability before this.”

The plan passed the Illinois Senate with no opposition April 23 and must be passed in the Illinois House and signed by Gov. Bruce Rauner to become law.