Our very own Moo-moo-gu started his own cooking YouTube channel and it has becoming popular very quickly. This week we spent some time talking to him about his new channel and what his future plans are.
Go subcribe to Moo Moo Gu’s Blind in the Kitchen Channel
Guests: Moo Moo Gu, Puann Kiam Tinn, Eng Kok Tiong, Hiaunn Koo, Kiam Suinn Tinn, & Oo Tsut Bi.
Resources about blindness from a PGHK listener
Endpoints News – How much is your vision worth?
Spark CEO Jeff Marrazzo has a price in mind
Just how much is your vision worth?
That’s the billion-dollar question at Spark Therapeutics now as the FDA winds up with an odds-on approval for its gene therapy used to fix a rare form of inherited blindness called RPE65-mediated retinal dystrophy.
It’s verboten in biopharma for CEOs to discuss hard prices ahead of an approval, but Spark $ONCE CEO Jeff Marrazzo has been doing the math on the economic value of vision, and came up with a substantial 7-figure number: $1 million-plus for Luxturna.
“While it is not our intention today to guide you with the potential price if it is approved, we are encouraged that by modeling reasonable assumptions about the impact of Luxturna on these types of indirect costs, as well as on quality of life and direct medical cost over a patient’s lifetime that there is support for the value of the therapy in excess of $1 million per patient,” he said during Spark’s Q3 call with analysts on Tuesday.
Marrazzo then carefully walked through the economic argument for a price that could land the company’s lead treatment right at the top of the list of the 10 most expensive therapies on the planet.
There are several factors to consider in evaluating their therapy’s price, Marrazzo said. Start with the value of a job, something 70% of the blind in the US don’t have. There’s the cost of a caregiver for blind children, often a parent who can’t work. And there are state court decisions that place the value of sight for plaintiffs at more than $1 million.
Spark’s move here is crucial for the entire gene therapy field. This is the first such treatment to reach the threshold of an FDA approval, and its marketing plan will influence the market valuation of every biotech in the field. And while a couple of gene therapies have been sanctioned in Europe, they’ve only been rarely used, falling well short of the kind of commercial success needed for a viable marketing effort.
Over the last year there have been a variety of wide-ranging discussions about the coming price discussion on gene therapies. Some have suggested that the manufacturers should spread the price over a period of time, to make it easier to cover or limit the price if the gene therapy’s effect waned over time.
Marrazzo, for his part, says reimbursement rules in the US make such spread out payments virtually impossible, suggesting that Spark will wind up with a 7-figure sticker that gets paid on delivery. While he says that the final price has yet to be nailed down, at this stage of the game it’s more than likely that Spark has a hard price in mind for the rollout to come soon.
And the CEO just made a blockbuster economic case for Luxturna.
The Guardian – Seven things you should stop saying and doing to disabled people
1. Don’t call me ‘brave’
People think that if you have a disability, you shouldn’t associate yourself with anything to do with beauty. In their perception, disability equals “ugly” or “unattractive”. Of course, it’s ridiculous. Who said being disabled disqualifies you from being beautiful? Whether a disability is visible or invisible, people with a disability can be fabulously attractive on so many levels. But you’re almost disqualified from looking good. Sometimes people will say to me: “You are so pretty but you are in a wheelchair …” It’s those small things that are really belittling.
I do cringe when people marvel at me, saying I must be “brave” or “inspiring” – just because I am out shopping on my own. “You must be so brave.” I find this phrase very patronising. Don’t say this to me unless I have wrestled a tiger or a crocodile or done something extraordinary like fly to the moon and back. I don’t see how I can be inspiring by getting on with life.
Anne Wafula Strike MBE, 47, Essex
2. Don’t use baby-talk
It’s irritating when people talk to me as if I’m a child – they spot my hearing aids, and they suddenly think they need to revert to loud, slow baby-talk for me to understand them. But I struggle with my hearing, not my comprehension. I can ask you to speak up or more clearly if I need you to!
Joshua Salisbury, 22, Stoke-on-Trent
3. Don’t ask what my disabilities are
I wish people would stop asking what my disabilities are. It’s an intrusive and unnecessary question; you only need to know what my access needs are, not why I have those needs. You wouldn’t ask a non-disabled person to give details about their medical history, so why should it be different for me? If I want you to know, I’ll tell you.
Alice Kirby, 26, Sheffield
4. Don’t assume all disabled people look the same
I wish people would stop thinking that the world is made up of purely able-bodied individuals and that the tiny minority who are disabled are easily identifiable. Not looking stereotypically blind, people assume I can see perfectly well. This mindset is something that will continue to keep us at the periphery of society, especially if people restrict their understanding of disability to a picture in their heads that says all disabled people look the same. Broaden what you believe a blind person looks like from just cane-wielding. We don’t all look the same – just as able-bodied people don’t.
Alex Lee, 22, London
5. Don’t help me without asking
The one thing I wish people would stop doing is assuming I need assistance without asking. From trying to help me lock up my bike to my food being served already cut up, it’s patronising, frustrating and can sometimes be embarrassing.
Devarshi Lodhia, 23, Cambridge
6. Don’t give misplaced advice
People say: “Hey, when is your leg going to be better?” My favourite is: “Sister, come to my church and you will be healed as God will forgive your sins.” Usually at this point, I point out that a) my disability, poliomyelitis, was not genetic, it was acquired as an infant and b) we’re all sinners and that they should be forgiven too. I also get: “Shall I call you a taxi?” while walking towards my car. Sometimes, if I’m with some friends at a restaurant, the waiter doesn’t ask me for my order, but says to my friend: “What is she going to have?” I then say that she is able to speak for herself.
I find that the general public have good intentions but, seriously, think before dishing out misplaced advice to me about how you think about my disability. Other times, I think that there’s a lot of unconscious bias towards disability and if you don’t fit the box, people just can’t understand that the box is a construct.
Placida Uzoamaka Ojinnaka, 41, Enfield
7. Don’t assume my disability defines me
I believe that feeling irritation towards those expressing disablist views is a futile act. It’s self-defeating to allow perspectives that stem from a lack of understanding or empathy to occupy me. But sometimes it’s unavoidable. It’s frustrating when people see physical disability as anything other than a few logistical difficulties that I have to be creative with and find ways around. It doesn’t define my motivations, ambition and identity, so why should anyone have this preconception?
Lottie Jackson, 25, Bristol