Imagine how it feels knowing that just one dose of a medication could change your child’s life, but it costs more than $2 million.
It sounds like something from a cruel futuristic film, but this is the very real problem facing patients and their parents today.
The price of medication has long caused upset, with some Americans racking up thousands in debt for treatment.
The drug in question is called Zolgensma, and it is a one-time-only gene therapy treatment for children under two years old.
It is used for the treatment of a condition called spinal muscular atrophy, SMA for short.
It works by treating the genetic root cause of SMA, as it replaces a ‘missing or nonworking SMN1 gene’ with a working copy of a human SMN gene.
It is done so through the use of a carrier called a ‘vector’.
Zolgensma costs over $2 million (Getty Stock Image)
Put simply, the carrier for this treatment is a virus that has had its DNA removed.
The DNA is then replaced with the correct working gene.
Patients don’t get sick from the virus, and instead it travels through the body to deliver the new gene to where it’s needed. It then tells the body to make the new working protein instead.
The vectors are then broken down and shed from the body.
The downside is, it costs an eyewatering $2.1 million for a single treatment. Families of patients are infuriated by how much it costs, and are calling for the price to be lowered.
In the UK in 2021, a deal was struck meaning they could access the drug at a cheaper price, so 80 babies a year could benefit from it.
The staggering price of the drug, which is sold by Novartis, was supported by independent body Institute for Clinical and Economic Review (ICER), which suggests fair prices for medication.
Dr. Steven D. Pearson, then-president of ICER, said of Zolgensma’s $2.1 million price tag when it was announced back in 2019: “Zolgensma is dramatically transforming the lives of families affected by this devastating disease, and given the new efficacy data for the pre-symptomatic population, the price announced today falls within the upper bound of ICER’s value-based price benchmark range.”
The drug could be life-saving (Getty Stock Image)
Something else that has ruffled feathers, is the early stage development of Zolgensma was funded and financed by the National Institutes of Health and several charities.
Many charities based in the US such as Sophia’s Cure, Cure SMA, Getty Owl Foundation, Fighting SMA, Jadon’s Hope Foundation, the Gwendolyn Strong Foundation, and Miracle for Madison used donations to invest in clinical trials and to help research.
A previous medication used for treating SMA, Spinraza, is taken four times a year for life.
Spinraza is priced at $750,000 for the first year, with each following year costing $350,000 per year.
A decade of treatment would set you back something close to $4 million.
Horrifyingly, when it comes to pricing a drug, many companies calculate how many years of life the patient gains.
Novartis purchased Zolgensma when they acquired the firm AveXis for a whopping $8.7 billion.
What’s worse, most health insurance schemes won’t insure one-time genetic treatments such as this due to the price tag.
Novartis offers payments in instalments, at $425,000 a year.
They have also said they will give partial refunds if the treatment doesn’t work.
UNILAD has contacted Novartis for a comment.
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Featured Image Credit: Getty Images/Ewerton Manzotte/Getty Images/Bevan Goldswain
An apartment block in China has got internet users fixated on its ‘dystopian’ look and impressive facilities, but how much does it actually cost to live there?
There are a lot of people out there who would probably be happy to pay good money if it meant they literally had everything they needed on their doorstep.
Hungry? Take a quick trip down the corridors to the food court. Feel like you’re in need of a quick glow-up? Worry not, the hair salon is only a few doors down.
Sure, you might miss the smell of fresh air, but that’s what windows are for, right?
It might be hard to imagine living a life in which you never need to go outside, but it’s very much a reality for residents of the Regent International, a huge building in Qianjiang Century City, located in Hangzhou’s central business district in China.
Equipped with nail salons, supermarkets, swimming pools and internet cafes, the building is home to around 20,000 residents who live in apartments that take up much of the building.
TikTok/@fatheristheone
Though convenience is definitely a plus for those who live in the apartments, a lot of internet users have made clear they’re not clamoring to live there, with one going as far as to describe it as an ‘expensive prison’.
Another raised an important point: “imagine morning rush hour waiting for the elevator.”
That probably wouldn’t be ideal, but whether you consider the building to be a ‘prison’ or a haven of opportunity, how much are people paying to live there?
According to the Chinese news agency Sina, the cost of apartments at the Regent International vary depending on how big they are and what they have to offer.
TikTok/@fatheristheone
Smaller apartments without windows typically rent for about 1,500 RMB ($220) per month, while bigger apartments that come equipped with a balcony would set you back about 4,000 RMB ($550) per month.
Sounds pretty good in comparison to the rent prices in the US, doesn’t it?
The building attracts a lot of graduates and soon-to-be graduates, as well as young working professionals like influencers and small business owners.
By removing the need for its residents to go outside, the construction company behind the building, The Broad Group, has explained that the apartments could help keep at least 2,000 cars off the streets.
The Regent International was originally intended to be a boutique six-star hotel before it was repurposed as a residential property.
Featured Image Credit: TikTok/@official_yasmin/@fatheristheone
Topics: World News, Life, Viral, Money
The phone manufacturing company behind Nokia has released a Barbie flip phone.
Greta Gerwig’s Barbie may’ve been released in July 2023, but we’re clearly not over the hype just yet.
Human Mobile Device (HMD) – the manufacturer behind the phone of the Noughties, the Nokia – has revealed its designed a ‘Barbie flip phone’ in partnership with Mattel which doesn’t feature any ‘distracting apps’.
Prepare to feel like you’re back in Barbie’s Dreamhouse:
The design
If you hadn’t already guessed already, the flip phone is very much pink. And not only that, but following in the footsteps of the finesse of the Barbie movie starring Margot Robbie and Ryan Gosling, it’s only natural it’s ‘chic’ and ‘sleek’ too.
However, HMD notes: “This may be the HMD Barbie Phone, but this is about your style, too! It comes with Barbie covers, each with a different design.
“Switch them up as often as you like, then make them your own with the included stickers and crystals. It even has a beaded lanyard with iconic Barbie charms for added style.
“We all have a unique sparkle to show the world. Make it your own!”
Open the phone up and HMD explains ‘everything on the screen feels like it’s straight out of The Barbie DreamHouse’. Oh, but with ‘a few hidden surprises for you to find,’ it teases.
Although, you certainly won’t find – or be able to download – most of the popular apps which currently sit on your smartphone – think Snapchat, Instagram or TikTok. Or use the internet either. Don’t worry though, there’s still a camera for ‘shoots with friends,’ you can call, text, listen to music and even better, you can also play Snake on it.
But why?
Wave goodbye to social media (HMD)
Why?
Well, you’ve probably admitted in the last year or so that sometimes life just gets a bit too much, and when speaking to a friend have lamented: “I wish I could just take a break, leave my phone and run away to a desert island for a few months.”
So think of the Barbie phone as a more bank-account friendly alternative and giving your smartphone ‘a vacay’ instead.
HMD states: “Nothing beats spending real time together. That’s what the HMD Barbie Phone is all about! No distracting apps here. It’s time to disconnect to reconnect.”
And the sentiment is echoed in a statement from HMD’s chief marketing officer Lars Silberbauer too.
Why not take a break from the virtual world and start embracing the real one a bit more? (HMD)
Silberbauer said: “In our fast-paced digital world, it can often feel like the online buzz never stops. This phone encourages you to ditch your smartphone in times when you just want less browsing and more fun, all with the help of a true cultural icon, Barbie.”
And it’s not taken long for people to weigh in online, many echoing a similar sentiment.
One Twitter user said: “This is the type of phone kids really should be allowed to have if they’re not over a certain age.”
“This is perfect for kids actually, you can contact them easily & no unneeded internet exposure,” another added.
And a third resolved: “Yup I’m unplugging from the internet after buying this.”
The phone is currently advertised as being sold for £99.99 ($130) – with 64 MB RAM, 128 MB storage and a dual sim – and it launched in the UK on Wednesday (August 28).
A US release date is yet to be announced, reportedly set to be revealed soon on HMD’s social media, so keep your eyes peeled.
Featured Image Credit: Nokia
Topics: Phones, Technology, Barbie, World News, UK News, US News, Money, Social Media, Nostalgia, Mental Health, Parenting
A dad has shared a Trader Joe’s receipt showing the jaw-dropping cost of feeding six kids, and it’s certainly got people talking.
Amid the continuing cost of living crisis, some have upped sticks for life onboard a cruise ship, reporting its cheaper than living on land – and once you see the price of one dad‘s food bill for the week, you might consider joining them.
If you look at McDonald’s prices and how much they’ve changed in the last 10 years, it’s clear to see the price of food – even fast food – has risen drastically.
But what about supermarkets such as Trader Joe’s?
Well, one dad who has six kids has revealed how much it cost him when he visited one of the store’s branches in California.
Sharing a video of a lengthy receipt to social media last week, Sergio Gonzalez bought items such as breaded chicken tenderloin, waffles, pizza, cauliflower gnocci, ice cream, yogurt, pasta, grapes and tortilla chips.
Items such as mustard dill pickle cost $1.99 and pasta sauce $3.49 which may not seem quite so bad at first until you see the total cost of the shop.
Items included hash browns and dumplings (Instagram/ sergiogonzalez805)
The total bill came to an eye-watering $444.38 and it’s not taken long for people to flood to the video – which has been widely shared on social media – to weigh in.
One X user said: “Don’t have six kids!!!!!!!! wtf.”
“Just stop feeding your kids,” another joked.
A third commented: “Condoms are cheap.”
Others criticized the dad’s choice of store.
The bill came to over $400 (Instagram/ sergiogonzalez805)
A user said: “First problem I see here is shopping at Trader Joe’s! They are way overpriced.”
“Go to Costco, BJs, or ShopRite. Who shops for kids at Trader Joe’s?” a second wrote.
A third chimed: “I have six children and I do all my shopping at Walmart and for 1 week’s worth of groceries it cost me anywhere from $250-$300. Not too crazy.”
However, others didn’t even think the bill was that bad in the first place.
A user wrote: “Gonna be real – 450 bucks for 6 kids isn’t that bad.”
UNILAD has contacted Trader Joe’s for comment.
Featured Image Credit: Instagram/@galencallahan/@sergiogonzalez805
Topics: Food and Drink, Money, Social Media, Twitter, US News, Parenting, Shopping, Viral
A mom was hit with a huge ER bill, despite her daughter not making it past the waiting room.
In December 2023, Maggi Wettstein’s daughter Ryan woke up crying.
Ryan, who was three years old at the time, was said to be inconsolable, and her mom feared she had a yeast infection or a UTI, so she took her to Carle Health Methodist Hospital at around 10:30pm.
An Illinois mother took her daughter to the ER in December 2023 (Getty Stock)
The ER wasn’t very busy when they arrived, and Ryan was checked in.
Explaining the toddler’s symptoms, Ryan was sent to triage and given a nasal swab test to check for COVID-19.
As time went on while Maggi and Ryan were in the waiting room, Maggi noticed her daughter had seemingly perked up a bit and had stopped crying.
Knowing it was late and Ryan had pre-school the next day, the mom decided to take Ryan home to bed.
According to Maggi, there was no one at the desk for them to check out upon leaving, so they just headed home.
The young girl had a nasal swab taken while she was there (Getty Stock)
Eight months on, the family had ‘forgotten all about the ER trip’ until they were met with a large medical bill from the hospital.
Despite Ryan simply having a nasal swab test, Maggi was charged an eye-watering $445, KFF Health News reports.
With an insurance discount, the bill came to just over $298, but Maggi still thought it was a particularly high price to pay as Ryan wasn’t even seen by a doctor.
As well as this, Walgreens sells COVID and flu combination tests for as little as $30, so Maggi was left wondering what warranted such an expensive ER bill.
Maggi hailed the sum as ‘mind-blowing’ and called the hospital’s billing department to query it.
While she hoped it was a mistake, the large amount has since been verified, and the mom has to pay it.
Maggi Wettstein – pictured – said the amount she was billed was ‘mind-blowing’ (FMG Law)
Speaking about the hefty bill Maggi was slapped with, Loren Adler, associate director of the Brookings Institution Center on Health Policy, said the hospital will have made a ‘pretty healthy markup’.
She added that the hospital is ‘utilizing their market power to make as much money as possible, and the insurance companies are not all that good at pushing back’.
When approached for comment by KFF Health News, a spokesperson for Carle Health said: “We follow policies that support the safety and wellbeing of our patients, which includes the initial triage of symptomatic patients to the Emergency Department.”
UNILAD have also approached the company for comment.