Proposed Parkinson’s registry could foster work toward treatments and a cure

      Missouri could be a leader in creating a knowledge base to help understand and fight Parkinson’s disease, under a bill approved by a House committee.

Representative Travis Smith (Photo: Tim Bommel, Missouri House Communications)

      House Bill 822 would create the Parkinson’s disease registry to collect general information about people diagnosed with that disease and to be kept by the University of Missouri.  It would be used to identify commonalities between patients that could lead to a greater understanding of who is likely to develop Parkinson’s, and help to develop preventative measures, treatments, and perhaps even a cure.

      Bill sponsor Travis Smith (R-Dora) told the House Committee on Children and Families, “Little is known about Parkinson’s.  It is distributed among different population groups and the patterns of the disease are changing over time.  Knowing who has Parkinson’s will also assist researchers in acquiring more information about the causes of Parkinson’s, [which are] believed to be a combination of environmental and genetic factors.”

      “The whole idea with [HB 822] is:  we collect this data and we start learning from it and we prevent this happening to future generations.”

      Smith’s inspiration for carrying the proposal was a family friend, Ann Dugan, who often joined his family for dinner each year on Thanksgiving.

“[Ann] got Parkinson’s, and every year I saw her progress and get worse and worse and worse.  The hardest part for her was her mind was still 100% intact.  She was a brilliant lady, had a master’s degree, but her body functions – she could no longer control even her movement.  It just broke my heart and I could see how much frustration she was in year after year.”

      The registry would be part of a larger national effort in coordination with the Centers for Disease Control (CDC), which has created a National Neurological Conditions Surveillance Program.  That program would gather data on Parkinson’s that could be used by researchers internationally, as they look for a cure.

      Before it begins collecting data, however, it needs several states to be online.   Julie Pitcher with the Michael J. Fox Foundation for Parkinson’s Research said Missouri could be the fifth state in the nation with such a registry. 

      “We are on a quest to get better data,” Pitcher told the committee.  “Patients really do want to be part of this to look for long-term effects, genetic predispositions, biomarkers, and other reasons that they may be living with Parkinson’s, and for future generations.”

      Roughly 20-thousand to 30-thousand Missourians are believed to have Parkinson’s.  Nationally that number is about 1.2-million, and Pitcher said the rate of diagnosis is expected to increase.

“There is a rise and we don’t know why.  We do know that many veterans are exposed to toxic burn pits and other chemicals.  There are folks that work in fields and are exposed to very, very toxic chemicals – herbicides like paraquat – and then we are expecting a larger number of folks … those who were in their 20s fighting in Afghanistan who we believe are now in their 40s and we expect more diagnoses coming as they age into their 50s.  It usually presents itself in their 50s but we are seeing more, younger members, particularly women, are now being diagnosed younger.”

Researchers hope the registry would help answer the question as to why an increase in instances of Parkinson’s diagnoses is occurring. 

The registry would not include personally identifying information and patients could choose not to be included at all.  Smith said he made sure that was the case before moving forward with the proposal.

“That’s one thing I’ve always been super concerned about, is people’s privacy.  This will not have people’s names on it.  This will basically be like HIPAA where all their information is hidden away … the University of Missouri will collect this data and then start working with other universities and hopefully come up with solutions.”

      He said what it would include are things like, “What your age group is; geographical – where have you been, where have you been, what have you done; occupation – were you in the military, were you a farmer, were you a teacher, were you a lawyer.  It’s going to be very broad.”

      The committee voted 10-0 to advance that bill to another committee, and from there it could go on to the full House.

Missouri House opens 2023 session

The Missouri House on Wednesday opened the first regular session of the 102nd General Assembly. Here are some scenes from the first day:

Secretary of State Jay Ashcroft presides over the start of the first day of session (Photo: Tim Bommel, Missouri House Communications)
House members join all gathered in the chamber in saying the Pledge of Allegiance (Photo: Tim Bommel, Missouri House Communications)
Members and guests stand for the singing of the National Anthem (Photo: Tim Bommel, Missouri House Communications)
Secretary of State Jay Ashcroft presides over the start of the first day of session (Photo: Tim Bommel, Missouri House Communications)
House members take the oath of office (Photo: Tim Bommel, Missouri House Communications)
House members take the oath of office (Photo: Tim Bommel, Missouri House Communications)
Representative Chris Dinkins (R-Lesterville) takes the gavel as acting Speaker of the House to preside over the election of a Speaker (Photo: Tim Bommel, Missouri House Communications)
Representative Travis Smith (R-Dora) nominates Dean Plocher (R-St. Louis) to be the new Speaker of the Missouri House (Photo: Tim Bommel, Missouri House Communications)
Dean Plocher (R-St. Louis) is sworn in as the new Speaker of the Missouri House (Photo: Tim Bommel, Missouri House Communications)
Speaker of the Missouri House Dean Plocher (R-St. Louis) (Photo: Tim Bommel, Missouri House Communications)
Speaker of the Missouri House Dean Plocher (R-St. Louis) (Photo: Tim Bommel, Missouri House Communications)
Speaker of the Missouri House Dean Plocher (R-St. Louis) (Photo: Tim Bommel, Missouri House Communications)
Speaker of the Missouri House Dean Plocher (R-St. Louis) (Photo: Tim Bommel, Missouri House Communications)
Speaker of the Missouri House Dean Plocher (R-St. Louis) (Photo: Tim Bommel, Missouri House Communications)
Speaker of the Missouri House Dean Plocher (R-St. Louis) (Photo: Tim Bommel, Missouri House Communications)
Speaker of the Missouri House Dean Plocher (R-St. Louis) (Photo: Tim Bommel, Missouri House Communications)
Two children of Speaker of the Missouri House Dean Plocher (R-St. Louis) read the Bill of Rights on the opening day of the 2023 session (Photo: Tim Bommel, Missouri House Communications)

House plan would protect those calling for help in college hazing incidents

      After some college students in Missouri and elsewhere in the U.S. have suffered permanent physical damage or even died following hazing incidents, one state lawmaker is proposing a law he thinks could help to protect students in this state.

Representative Travis Smith (Photo: Tim Bommel, Missouri House Communications)

      Many of the incidents that have received attention in the news in recent years have involved excessive consumption of alcohol.  After once such case last year at the University of Missouri a freshman was left blind and in a wheelchair and 11 of the brothers in the fraternity to which he was pledging are facing criminal charges.

      Representative Travis Smith (R-Dora) said hazing is not what it was when he was a student at MU. 

      “Hazing back then basically was you had a lot of these people coming in from high school that were big man on campus … and it was a lot like the military.  It was designed to break you down and build you back up.”  Smith says hazing has become something different, and it starts with the fact that alcohol being outlawed altogether on many college campuses, “and what a lot of these kids are doing is getting hard liquor and drinking it as quickly as possible.” 

      Smith’s proposal, House Bill 240, would protect from being charged with hazing anyone who calls 911 to report a person in need of medical assistance, or who remains at a scene to assist such a person until emergency personnel arrive. 

      “Right now hazing is a felony in the State of Missouri, which it should be, but since it’s a felony, everyone is scared to call 911, so we’re either losing lives or I think there was a case at Penn State where a young man overdosed on alcohol and he lost his sight and he lost, basically his ability to function in society.  What we’re trying to do … is make it where if that incident does happen … the person who calls 911 is not liable under a felony, because basically they’re helping save someone’s life.”

      Smith believes with his bill in place students who have drank too much could get life-saving care faster.   

      “A lot of times it’s no different than overdoses with any other kind of drugs or alcohol.  If you get in the emergency room in time there’s a lot of things they can do to pump out the stomach, get that alcohol out of their system and save their life.”

      The legislator says it’s important to remember that these students are young and situations like these are frightening.

      “When you’re in a situation where you’ve never been and someone’s passed out or someone is not responding it’s a scary situation.  It doesn’t matter if you’re 55 years old with a master’s degree or a doctorate or you’re a 19 year old kid … it’s scary.  This just decreases that liability with the hopes that you won’t worry about getting in trouble and you’ll be more worried about saving someone’s life.”

      “We need to protect these college kids because they’ve got enough stuff to deal with without having to worry about being liable for someone else when they call 911.  Trying to save someone’s life you should not get in trouble.”

      Smith has prefiled HB 240 for the session that will begin January 4.

House vote sends statewide PDMP proposal to Governor

      After roughly a decade of legislative consideration, the Missouri legislature has voted to create a statewide prescription drug monitoring program (PDMP).

Representative Travis Smith (Photo: Tim Bommel, Missouri House Communications)

      The program would consolidate information on the prescription of controlled substances so that pharmacists and physicians can identify those who might be dealing with addiction.  The House approved the bill, Senate Bill 63, 91-64, sending it to Governor Mike Parson (R).  Parson has signaled support for a PDMP.

      If SB 63 becomes law it would make Missouri the last state in the nation to enact a statewide PDMP.     More than 80-percent of the state is covered by a PDMP that began in St. Louis County a number of years ago.  This would replace that plan and have different requirements for the sharing of data.

      PDMPs are intended to identify and flag the practice of “doctor shopping,” when individuals go to multiple doctors and multiple pharmacists seeking to accumulate a large supply of a drug in order to abuse or sell it.  Supporters say the program will save lives and help get those with addictions into treatment.

      “Every law enforcement person I talked to, every doctor says it will prevent deaths in the future, and if you can prevent just one person from dying I think that means something.  I think this will prevent hundreds, if not thousands,” said Representative Travis Smith (R-Dora), who carried the bill in the House.   

      Opponents say PDMPs will create a database of Missourians’ private medical information which the government shouldn’t have.  Lake St. Louis representative Justin Hill, a former undercover drug enforcement officer, said PDMPs haven’t worked in other states and the one based in St. Louis County isn’t working.

Representative Justin Hill speaks against the PDMP proposal as Senator Holly Rehder, its sponsor, watches debate. (Photo: Tim Bommel, Missouri House Communications)

      “This has dire consequences.  The death rate in St. Louis County has actually increased because people are pushed away from pharmacies to buy their narcotics, which they are addicted to, on the street.  If you truly care about the lives of people that are addicted to these drugs then you want them to be discovered at the pharmacy.  You want them to doctor shop,” said Hill.  “You turn down that person at a doctor’s office or pharmacy, they’re still going to get their drug.”

      Smith said he’s heard those concerns, and if the bill becomes law he intends to monitor the impact of a PDMP in Missouri.  If it doesn’t work he will work to fix or eliminate it.

      “My argument to those people is this:  most heroin users did not start off as heroin users.  They had some kind of prescription for the opioid.  They get the opioid and because there wasn’t a monitoring program they got too much of it.  They got addicted,” said Smith.  “My idea is, if we can work with doctors and pharmacists and monitor it, we can catch it before it ever happens.”

      The bill passed the House with mostly Democratic support, with around 30 Republicans voting in favor.  Representative Tracy McCreery (D-St. Louis) has been in favor of a PDMP throughout her 8-year legislative career.

      She credited Senator Holly Rehder (R-Sikeston), who has sponsored and pushed for passage of a program through most of her 8 years in the House, and was the sponsor of SB 63.

      “I think that what her legislation is doing is truly putting a statewide PDMP forward, and to me that is something that is ultimately going to save lives.”

      Proponents say under SB 63, Missourians’ medical information will only be available to doctors and pharmacists.