Which baby should live? Pick a number. Not a dystopian movie. Rather the kindness of international drug companies.
Swiss drugmaker Novartis has launched an international lottery for its extremely costly gene therapy Zolgensma.
Throughout the year, the drugmaker aims to give away that treatment for free to up to 100 children under the age of two suffering from spinal muscular atrophy (SMA)using a random draw.
Zolgensma was approved in 2019 in the US where it’s priced at over £1.6 million, making it the world’s costliest medicine ever.
Each year, SMA affects thousands of newborns across the world, meaning there will be considerably more losers than winners in the Zolgensma lottery.SMA Europe, which brings together patient and research groups said that while “every saved life is a gift”, it’s “alarmed that the programme will make thousands of SMA babies compete with each other for a life-saving treatment, splitting tightly knit communities and turning this experimental drug into a coveted prize.”
AveXis president David Lennon said, “Unfortunately there are many babies out there who deserve this medication, and we can’t produce quickly enough to treat them all. This was the only way we could think about making a fair and equitable allocation of the product that is available.”
Zolgensma is given to babies in a single intravenous infusion and it corrects the basic genetic defect that causes SMA.
While it cannot reverse the damage already done by the disease, data show it halts deterioration of the nerve cells and allows children to develop more normally.
In September the company said two senior executives had been sacked over the falsification of data from the animal studies that take place before human trials.
The company said it had been fully explained to the FDA and had not affected the filing for the licence in the US.
The drug is yet to be licensed in Britain.
Job security worries for Brexit Party MEP June Mummery who tweeted, “Attending the penultimate session of the European Parliament’s Fisheries Committee.
“The big question now is, who will be here to hold these people to account while they still control Britain’s waters, but the UK has no representation?”
Police have blocked a bid to trace prince Andrew’s bodyguards’ movements on the night he first had sex with Virginia Roberts Giuffre.
The disgraced royal claims that he could not have been with her in London in March 2001—because he was at Pizza Express in Woking.
The Mirror Online submitted a Freedom of Information Act request hoping that his royal protection officers’ movements would help prove his whereabouts that day.
The Met police rejected the request, citing national security concerns
Giuffre—who said she had sex with Andrew three times after being trafficked by late child abuser Jeffrey Epstein—attacked the “lies after lies”.
“There could only be one reason the prince’s bodyguards would not expose where the prince had been on March 10th 2001, the night in question, because he wasn’t at Woking Pizza”.
Restoring Big Ben is a waste of money but restoring Big Ben quickly for Brexit was just daft.
Happily it now isn’t happening despite tedious Tory MP Mark Francois promising, “I think we will get it within 48 hours”.
Perhaps he could take his own advice and stay out of the news studios and “stay at home and watch Netflix”.
A benefits investigator denied being a racist even though she called Asian police officers “DC Chapati” and “PC Poppadom”.
Senior fraud hunter Natalie Green admitted using the insults while working at the Department for Work and Pensions (DWP), but denied other vile racial slurs.
They emerged at an employment tribunal where she lost her unfair dismissal claim against the DWP.
Colleagues alleged repeated racial slurs against Muslims and Chinese people.
Staff had “resigned themselves to having to tolerate her behaviour”, the tribunal was
Green confessed during the hearing to using the names “PC Poppadom”, “DC Chapati” and “JF”—short for Johnny Foreigner.
Green, of Eastwell, Leicestershire, who worked at East Midlands serious and organised crime unit, brought forward her retirement while she was being investigated.
South Yorkshire Police (SYP) officers who failed to protect a victim of child sexual exploitation (CSE) in Rotherham will not be prosecuted.
The survivor was abused for several years from the age of 14.
An Independent Office for Police Conduct (IOPC) investigation upheld six of her complaints. These included that SYP were aware of CSE suspects from at least the mid-1990s but failed to deal adequately with offenders.
But it said there was “no indication of any criminal offence” and the investigation “is now formally closed”. The survivor said she was “heartbroken”. “They have admitted failings but there are no consequences,” she said. “Yet again no one is going to be made accountable.”
The report found that an unnamed chief constable said abuse in Rotherham “had been going on for 30 years”. The chief constable claimed cops couldn’t tackle it due to “racial tensions”. In reality cops failed to act because they didn’t see victims as worth protecting.
The victim’s father said a senior officer had spoken about his daughter “as though she was an adult doing it of her own free will”. He said he had confronted the officer to say “she was a child and this was child abuse”.
A police officer had a sexual relationship with a vulnerable teenager while colleagues were investigating her disappearance, a misconduct panel has found.
PC Andrew Brooks, who left the Metropolitan Police in 2019, was accused of gross misconduct.
The panel heard how the police officer met the girl in his local town centre in 2018.
Brooks learned she was a missing person. But he continued to pursue a relationship with her and tried to put pressure on her to conceal his identity.
State deaths quads in Derry, Phillip Green still trousering cash
The Troublemaker looks at the news of the week