Lawmakers Advance Parkinson’s Bill

By John Celock

New Jersey lawmakers have advanced a bill that would raise awareness of Parkinson’s Disease in the state.

The state Senate Budget and Appropriations Committee voted unanimously on Monday to pass legislation that would create new state programs to raise awareness of the disease, along with providing training to government employees on how to handle those who have the disease. The bill has previously been passed by the Senate Health, Human Services and Senior Citizens Committee and can now advance to the full Senate.

“Increased public awareness is needed with health care and emergency services personal,” Allan Bleich, president of the New Jersey Chapter of the American Parkinson’s Disease Association, told senators on Monday.

Bleich, a retired police officer, shared his experiences in being diagnosed with early onset Parkinson’s at the age of 45 seven years ago. He noted that most of the 1.5 million Parkinson’s patients are in their 60s and 70s, with only 10 percent being early onset patients. He noted that due to the age of most patients, the scientific community does not put as much time into researching drugs for the disease as opposed to other illnesses. He said that Sinemat, what is considered the “gold standard” of Parkinson’s treatment, is the same drug that was considered the “gold standard” in the 1960s.

Bleich said that with increased public awareness, more research can be put into Parkinson’s, hopefully to find a cure. He noted that the increased awareness would help taxpayers as well. He said it would also allow for increased early detection, which would allow patients to get into exercise programs that have helped coping with the illness.

“Raising awareness would likely lead to increased private funding,” Bleich said. “This would result in less dependency on public funding.”

Under the terms of the bill, sponsored by Sen. Joe Vitale (D-Woodbridge) and Assemblyman Raj Mukherji (D-Jersey City), the state Department of Health and Senior Services would be required to launch new public awareness campaigns for Parkinson’s. This would include a dedicated state website explaining the illness, its causes and how to work with patients. Local public health agencies would also help raise awareness of Parkinson’s through public information campaigns.

The bill would also target public sector employees, including emergency medical personnel, police officers, firefighters and court staffers, in what is Parkinson’s and how to work with patients. Bleich told senators that the tremors that mark Parkinson’s are often confused with signs of public drunkenness or drug abuse, and patients are not treated as having an illness. He said that with a training program, public employees would be able to handle Parkinson’s as an illness.

The New Jersey legislation is gaining praise from at least one state lawmaker outside of New Jersey. Kansas state Rep.-elect J. Basil Dannebohm (R-Ellinwood), who has early onset Parkinson’s, told The Celock Report that more state and local governments need to address Parkinson’s in order to raise awareness in order to combat the disease.

“Far too long awareness of our disease has been virtually non-existent. Were it not for the celebrities who find themselves diagnosed, I fear we would have little or no voice,” Dannebohm said. “We need more states to step up and support the cause. In fact, I challenge other states to mirror New Jersey and pass similar legislation. I offer my sincere appreciation to Senator Vitale and the New Jersey Legislature for increasing Parkinson’s Disease Awareness and advancing our cause.”

Among the celebrities who have been championing Parkinson’s since being diagnosed are actor Michael J. Fox and former U.S. Attorney General Janet Reno.

Dannebohm’s home state has seen state lawmakers declare April as Parkinson’s Disease Awareness month in 2013 and 2014. The Kansas resolution was sponsored by Rep. Ron Ryckman Sr. (R-Meade). In addition, earlier this year, Kansas Gov. Sam Brownback (R) signed a proclamation declaring April as Parkinson’s Disease Awareness Month.

As part of his testimony, Bleich told lawmakers that the Sinemat that he uses to treat Parkinson’s goes in stages and wears off after a period. Noting that it was wearing off during his testimony, he shared what his body was going through.

“I’ve got to tell you senator, when the medications are wearing on and off, it is like torture,” he said.