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I see your $24k pills and raise you this $50k shot used to save my son’s life.
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View Reddit by tez1213 – View Source
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I see your $24k pills and raise you this $50k shot used to save my son’s life.
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View Reddit by tez1213 – View Source
Why is it encased in clear carbonite?
Oh man, did you find out how he got it? Botulism is scary
Where is that hotdog epoxy guy?!
So this a really interesting case study in how super rare, terrible disorders that have a one off treatment are worth LOTS of money.
This is actually manufactured for the California department of public health who then distributes, because there are so few babies that actually end up needing this.
I’d be interested to hear if you actually paid for this or if it was essentially eaten by insurance, the hospital or tax payers.
50k to save a babies life (>2100 times to date with this drug) is a price (as a CA taxpayer) id pay every single time.
What’s really amazing is that BabyBIG was created through a joint venture between CA and MA Public Health Services and is manufactured by California’s Department of PublicHealth.
It’s 100% developed and manufactured by the public sector.
Worked as a pharmacy buyer… can confirm the cost of this. It’s insane but really glad your son is okay!
So how big did he get?
I looked this up, not only is it a orphan drug (specialized for ultra rare indications) it’s also based off of human donors who have a resistance to botulism A and B. Source below. OP was it a single shot or a series of injections, glad it worked too!!
https://www.infantbotulism.org/general/babybig.php
How unique! I’m a nurse in the US and have given a few very expensive medications. One injection was somewhere in the $20k range and the administration had to be witnessed by me, a pharmacist, and the patient, who all had to sign some paperwork saying it had been given. I wish I could remember what we were treating but it was for sure something deadly with fewer than 1000 cases per year in the country. The pharmacist was insisting that the company loses money on every one of the injections. Not sure if I believe it, but I could see it being possible.
In this case it might make sense why it’s so expensive. It is extremely rare to need this. The CDC probably shipped it to the hospital. Essentially you are paying fir manufacturing of very small batches and storage for very long periods of time.
This is a hilariously polarizing picture, especially for the people here who didn’t read the thread first. I’m glad your son is doing well, OP.
My newborn son was on sildenafil for almost 2 years. It was 16k a month. Luckily insurance covered most of it
My boss’s grandson had to have this shot to save his life. But when he got it, it cost almost 200,000 dollars. He was completely paralyzed and was on a breathing machine, he got the shot and within 24 hours was basically back to normal. He was only 4 years old at the time.
Hey I have one too! I had botulism as a baby. Its even the same date. It’s cool seeing this online, thanks for sharing
Infant botulism and the corresponding treatment is so insanely rare. This drug is treated like gold. A friend of mine is a State Trooper and was involved in the delivering of this drug to the Children’s Hospital. Multiple trooper vehicles met a dept of health vehicle at the airport and escorted them to the hospital. Then 2 Troopers escorted the ODH employees and drug into the building.
It’s a good thing they didn’t botch it.
Pediatric ICU nurse here. I remember having to administer that to a patient I had and being told how expensive it was. It was flown in from CA to PA in less than 12 hrs specifically for my patient. I was terrified I was gonna mess it up.
Edit: Thanks for the awards kind strangers. Gonna go tell my mom brb
Fellow infant botulism parent here! My son caught it at 5 weeks old in 2014, but only stayed 8 days in the hospital. Worst 8 days of my life, for sure!
Luckily, the doctor rotating was the infectious disease specialist for the Children’s Hospital in my area and had seen it a few times in her career. From what I remember, certain areas of the country have higher cases than others.
We are so thankful for BabyBIG. It likely saved our daughter’s life at just four months old. The vial was put on a plane with someone from the CA Dept. of Public Health and hand delivered to our hospital’s pharmacy. A true miracle drug.
Wow, my first post ever! And I worked on this drug when it got approved. Was at the CRO that worked on the clinical trial and helped author part of their BLA (manufacturing section).
Funny story but I am partly responsible for that product sample. Was in a meeting with the project team and the drug sponsor. Sponsor was asking about product samples as souvenirs for the families who took part in the trial. Project team was not pushing it as it was a pain to get all the faux labels made and approved and to have a product vial filled with water. But I was kinda new to the team and exclaimed loudly, “Man, if I was part of that, I would want a souvenir! “. Well, so did the sponsor and he goes, “your right! Let’s do it.”.
Needles to say this product it wouldnnot be too far off to say this product literally made with their blood.
I’ll see your $50k and raise you to £1.795m / $2.45m for a single dose of Zolgensma, provided to a couple for their baby [free on England’s NHS](https://www.england.nhs.uk/2021/06/nhs-treats-first-patient-with-the-worlds-most-expensive-drug/)
To date, use of BabyBIG® to treat more than 2,100 US infant botulism patients has resulted in more than 123 years of avoided hospital stay and more than $153 million of avoided hospital costs. On average, infant botulism patients have an approximately 3.5 week reduction in time spent in the hospital, resulting in over $97,000 in avoided hospital costs (when compared to the pivotal clinical trial placebo group).
(Source)
https://www.infantbotulism.org/general/babybig.php
I was part of the clinical trials for BabyBIG in ‘96. Received the same trophy. Glad your son is ok!
I had the pleasure of ordering this late on the overnight shift for a patient. Very kind and resourceful infectious disease specialist handling the call and follow up. I was told they will have law enforcement escort it if it arrives after the airport has locked the shipping area up. We thought it was weird that they wanted the used vials back shipped back. Now I know what they are doing with them.
My son was in a bad car wreck. Traumatic brain injury, plus both lower legs were smashed. He was a month in Neuro ICU. The bill for just IV meds alone was over $400k, and that was in 2001 dollars.
I used to bitch about United Health Care, but we paid the ER copay and they basically ate almost $900k.
Hey, I was actually a patient in the study that developed BabyBIG back in the early 90s. Spent some time in an iron lung at the Woodland Memorial Hospital after contracting infant botulism and still have a couple little scars and some photos to prove it. Years ago a parcel showed up with one of these in it, kept it on a shelf behind the front desk at my parent’s private practice for a long time. Eventually wound up in storage and burned in one of those now annual forest fires that happen in California, really wish I still had it sometimes.
I used to work at the site that manufactured this. It was a proud moment every so many years we did it!