Latest news with #Lennard
7NEWS
08-05-2025
- Health
- 7NEWS
From $10k to $31.70: Massive savings for severe epilepsy sufferers after drug added to PBS
A life-changing medication for those battling a rare form of epilepsy has been added to the Pharmaceutical Benefits Scheme (PBS). Fenfluramine, an additional treatment option for those with Dravet syndrome, is a ray of hope for families dealing with an already non-responsive epilepsy. By the time this drug is recommended to people with the syndrome, they are normally on at least two other medications. 'A lifelong condition': What is Dravet syndrome? Affecting one in 15,700 people, the Dravet syndrome is characterised by seizures that are hard to treat and significant developmental delays. The syndrome typically begins when children are 6 months to 12 months old, and the mortality rate is 15 per cent to 20 per cent due to SUDEP (sudden unexpected death in epilepsy) and related accidents such as drowning and infections. And it doesn't go away when they become adults. According to Professor Piero Perucca, 'while onset begins in infancy, it remains a lifelong condition, with reduced survival'. Adults look at 'persistent seizures, disabling cognitive, behavioural, and motor symptoms', with little effect from medication. Medication can help reduce symptoms, but it is not something that can be cured. 'Constant state of fight or flight' At just four months old, Raphael Lennard had his first seizure, which proved to be long and uncontrolled. 'The early days were really quite shocking and scary,' said Raphael's father, Ben Lennard. What followed were weekly hospital visits and a constant state of fear and uncertainty, only increasing during COVID-19, when restrictions at hospital meant only one parent could be with him at a time. Seizures were 10 minutes to 20 minutes long, with multiple rounds of drugs needed to stop them. 'It was happening every week — trying to make normal life work around that was just impossible, we were just in a constant state of fight or flight,' said Lennard. There were also developmental delays and reactions to other medications that suppressed appetite. 'There's still motor delays, he doesn't want to eat so he's not food driven like other kids, we can't reward him with chocolate because he just doesn't care,' Lennard said. 'Ungodly amounts': $10k every 60 days And the medication price before the PBS? $10,000 every 60 days. This is often after trying multiple other medications, and those with Dravet syndrome can look at being on at least three anti-epileptic drugs at a time. This doesn't even take into account the cost for specialists and hospital visits. Due to the frequency of seizures and time spent in hospital, Rachael was given compassionate access to fenfluramine, without the heavy price tag. 'It has been a game changer for us, the seizures are shorter, happening only four to six months,' said Lennard. 'For other families, just having this option at the start without having to go through all the different concoctions, without having to pay ungodly amounts — it's another weapon in the arsenal against epilepsy'. Impact on carers Because Dravet syndrome is diagnosed in infancy, the burden of care and advocacy often fall on parents and guardians. Not knowing when the next seizure will come can be terrifying for child and parent and the helplessness felt watching a loved one going through one. Both of Raphael's parents have had to cut their hours to part-time work as a result. Research shows that the burden of care can lead to persistent anxiety, poor mental health and sleep quality, loss of work and financial burdens. The care burden has also resulted in 55 per cent of carers accessing a mental health or family support service for the parents or siblings of the person living with the condition. It is a condition that affects the whole family. 'Stability in the chaos' With fenfluramine on the PBS, prescriptions will now cost a maximum of $31.70, which is huge drop from the previous price of $10,000. 'It could help so many families like ours find stability in the chaos,' Lennard said. Lennard said there were also benefits for the wider community as 'we're not accessing hospitals so much, we're not going to the GP every week to get new scripts'. 'It makes life a little bit easier.'
Yahoo
07-02-2025
- Politics
- Yahoo
Monroe's Mark Brant case: When will his seat be filled? Was he paid? Who will investigate?
MONROE COUNTY — Now that Mark Brant has been removed from the Monroe County Board of Commissioners, what happens to his seat? Has Brant been paid for the new term that began Jan. 1? Who will represent the citizens of District 2? What is the status of the independent investigation of the Brant case and if/how it affected the Monroe County Board of Commissioners? David Vensel, chairman of the Monroe County Board Commissioners and District 6 commissioner, and others answer these questions. In September, Brant was convicted in federal court of maintaining a drug-involved premise and was sentenced to 18 months in federal prison. Brant resigned from the board of commissioners in October, but went on to win re-election to his post in the Nov. 5 general election. Brant was sworn-in Nov. 18, before he left for imprisonment in West Virginia, and officially took office on Jan. 1. He planned to serve out his full term, but the board of commissioners on Feb. 4 removed him from office based on Michigan election law which requires elected officers to be registered voters. "Mark Brant has not been paid nor given benefits for this term," said Michael Bosanac, Monroe County administrator and chief financial officer. Incumbent Republican Brant was re-elected to represent District 2 in November's general election. District 2 covers Milan, London, Exeter and Raisinville townships and Milan and Maybee villages. With Brant's removal from office, what happens to his seat? Vensel said it will not be filled until November, 2025's general election. 'I talked to Annamarie Osment (Monroe County clerk). We missed the deadline to consider a May (special) election. She said county commissioner is a partisan race and needs a primary. It looks like the timetable is an August primary and November general election,' Vensel said. Until then, Brant's post will remain vacant. "This is the best way to go. We really don't have any good alternatives," Vensel said. Philip Goldsmith, Monroe County's legal advisor from Lennard, Graham & Goldsmith of Monroe, said, "There is not going to be an appointment (for District 2 commissioner). An appointment is not even being considered. Under the circumstances, the board of commissioners said that (an election) was the best way to proceed. I agree with that. An election would be more appropriate than making an appointment." Vensel said all the commissioners on the Monroe County Board of Commissioners will "take on the concerns" of residents in District 2. 'I've said this before, I represent District 6, that's the district that elected me. But, I represent every citizen in Monroe County. That's not the same kind of representation as someone from their own district they chose, (but) the other eight commissioners will take on any of the concerns from residents in District 2 until the seat is filled," Vensel said. The Monroe County Board of Commissioners said it will hire a legal firm to investigate if/how Brant's years-long legal battle could have affected the board. Bosanac said the board made a "motion for up to $50,000 (for the investigation). In discussions (Tuesday night), they didn't believe it would cost that much." Subscribe Now: For all the latest local developments, breaking news and high school sports content. "The board approved the (investigation at the Jan. 21) meeting. Me and Henry Lievens (District 9 commissioner and vice-chairman of the board) will take the lead soliciting and securing an outside legal firm to lead the investigation. I talked to a couple different firms (Thursday). We want outside counsel, with no ties to Monroe County,' Vensel said. 'We're trying to hone in on a firm that has experience (with such cases).' The chosen firm will investigate the entire situation, Vensel said. 'Everything related to the Brant case, what led to and caused it. We'll try to point out and establish our goals and objectives (with the legal firm)," Vensel said. The timeline for the investigation has not yet been determined. "We want (the investigation) to be completed as soon as possible. We just need to bring closure to this unfortunate situation," Vensel said. "We made a tough decision at the meeting on Tuesday night to accept the opinion of legal counsel, and we made the decision to move forward with the independent investigation. We're glad we're at a point of moving forward on this. We're hoping to be done with this in the near future." — Contact reporter Suzanne Nolan Wisler at swisler@ This article originally appeared on The Monroe News: When will Brant's seat be filled? Was he paid? Who will investigate?
Yahoo
05-02-2025
- Politics
- Yahoo
Mark Brant removed from Monroe County Board of Commissioners post
(This story has been updated to add new information.) MONROE — Mark Brant has been removed from his District 2 Monroe County commissioner position effective immediately. The Monroe County Board of Commissioners is also planning to hire a law firm to investigate if/how Brant's case affected the board of commissioners. At Tuesday night's Monroe County Board of Commissioners meeting, the board voted 5 to 3 to remove Brant from office. After his September federal conviction for maintaining a drug-involved premise, Brant, a Republican, went on to win re-election to his post in the Nov. 5 general election, beating two write-in candidates. Although Brant is currently serving 18 months in federal prison in Morgantown, West Virginia, he took office on Jan. 1 and planned to serve out his term. Previous Coverage: Monroe County Commissioner Mark Brant will start his term behind bars | Opinion At Tuesday's meeting, the board entered a closed session to discuss a legal opinion from Phillip Goldsmith, the county's legal advisor from Lennard, Graham & Goldsmith of Monroe. The legal opinion is based on Michigan election law, which requires elected officers to be registered voters. 'He was not a qualified elector at the time of taking office on Jan. 1, 2025,' said Michael Bosanac, Monroe County administrator and chief financial officer. Brant didn't know about the board's decision to remove him prior to Tuesday's meeting. 'We went into closed session. After that, the opinion was released to the public. It was the first time it was available to the public and Mark Brant. It's now available to everybody,' said Tom Graham from the law firm. See the opinion here. Previous Coverage: Monroe County Commissioner Mark Brant will start his term behind bars | Opinion Brant's seat is currently unfilled. 'There is not any mechanism for an appointment,' Bosanac said. 'His seat is vacant. There will be a move for a special election.' Annamarie Osment, Monroe County clerk, said because Brant's position is a partisan position, a primary must be held. She said the primary is expected to be held in August, with the election in November. The Monroe County Board of Commissioners also plans to hire a legal firm to investigate if/how Brant's years-long legal battle could have affected the board. 'The board did not select anyone (yet),' Bosanac said. The cost of the investigation is not yet known. 'At a prior meeting, the board made a motion for up to $50,000. In discussions (Tuesday night), they didn't believe it would cost that much,' Bosanac said. Monroe resident Katybeth Davis, who has run as a Democrat candidate for local offices, was pleased with the Monroe County Board of Commissioners' decision to remove Brant from the board. Subscribe Now: For all the latest local developments, breaking news and high school sports content. "I am relieved that Mark Brant has been removed from his position as county commissioner, but I am also eager to get the results of the independent investigation, and I hope the investigation goes into every single county commissioner and their involvement in any illegalities," Davis wrote in an email message. "I will be requesting that there also be an investigation into the county's finances, state funds and grant money. I think Mark Brant has been doing a disservice to his community and constituents for over a decade, and I do not put it past him to respond and fight back to this ruling. I am hoping that the citizens of Monroe County get the transparency and accountability we deserve from our elected officials. I hope that people start paying attention and doing their research on who they are voting for before they cast their ballot on party lines." — Contact reporter Suzanne Nolan Wisler at swisler@ This article originally appeared on The Monroe News: Mark Brant removed from office; investigation to begin
