Pain on Purpose: Does Big Pharma Endorse Evasive Discomfort to Instrument Industry Compliance?
š¤·āāļø ESTIMATED READING TIME: THIRTY EIGHT
Disclaimer: Everything below is a mix of what I observed and heard during the event. The goal isnāt to pinpoint "who exactly said what," but to share (usually) an outsider's view and overall perspective on these industries. Iām not here to act as a definitive firsthand sourceāreaders should do their own research. I hope this inspires you to attend events, explore new industries, and hear what leaders are presenting. These notes combine my observations with thoughts on how things could run smoother and how ideas connect (IMO). Iām not an expert, you know? Just hanging out in the room with them. Enjoy!
Topics: Medical Industry, Language and Compliance, FDA, Networking, Alcohol Abundance, Presentations, Real-Person Stories, Patience, Social-Expectations
All of these people are getting together, so Iāll join them. Why? Cause on the description it said if youāre in āeducationā youāre invited. And thatās me! Letās head over to this amazing venue, get dinner, and hear who is getting some awards (and why?) Letās feel out the mood - and the industry :)
Why Attend: The medical/pharma industry is one that Iām always keeping my eye onā¦ cause I donāt think they actually have humansā best interests in mind. Not the true people in charge. The top leaders, the TOP decision makers. I think itās profit over people pretty often. So, I (of course) always want to be proven wrong - and/or hear of advancements and changes coming to this industry that are truly good to hear. This event sounded like itād cover a variety of topics and insights -> at an amazing location -> with food! So, letās check it out.
Overall Event Reviews: Venue (2/5), Food (3/5), Speaker Content (2/5), Networking (3/5), Likeliness to Return (2/5)
Photo Collage & Commentary:
Notes From the Event:
FIRST:
Iāll write this before anything elseā¦ cause now Iām writing my notes after attending the eventā¦ something about this is really, really fishy. Iām like, what the heck is this setup!? I feel like I want to use Aiās help on this one, cause Iām pretty sure I cracked something in mega industries hereā¦ and I wanna word this all properly.
Letās start with my attempt, then Iāll use Ai to rephrase and elaborateā¦ and then at the bottom, iāll put my notes, too.
But, essentially - this event was crazy. It was a tiny event, only like 40 people. Super bad lighting (so bright) and then the speeches were so dully. I mean, I think they were interesting, but only to a few people there. AND the speech that was the main speech, itself. It was SOOO upsetting to watch (it was a mother giving a speech about her daughter born deformed/with a rare disease) and just picture after picture after picture and really a tough topic.
NOW I am not one to shy away from tough topicsā¦ but RIGHT after dinner?
This whole event really made me wonder, is this intentional? Are they doing this on purpose? The waiting staff seemed instructed to offer lots of wine to everyoneā¦ and this event was just hours and hours of speeches.
AND THIS STORY - it was really difficult to hear right after dinner, you know? Which is one thing - but TOO the way she was introducedā¦ she met a lady in charge of all of this at an event.
This woman must always be on the prowl for her goals (hosting events, hosting narrative, keeping partners/clients happy) - so meeting this woman with SO MANY pictures of her daughter and this story, but this woman is also a doctor/scientist, etc. IDK, it was like the perfect story to kinda make people HAVE TO SAY yes. This will definteily sound rude if you take it that way, and so Iād like to also say, this woman/speaker truly impressed me.
She and her husband and literally lifting mountains and doing the unthinkable, and have been for years. They deserve this praise.
But higher up than them, is the industry leaders in pharmaseuticals and medication and the health industry.
A woman like this, telling this very upsetting story + so much wine, nothing to do but sit there politely, and finally at the end, drunk - etcā¦ idk, may be easier to ask for a favor or just āsay yesā cause that was so much info and letās get the night over? Idk - this is where I want aiās help.
And PS: now that I donāt drink anymore, its why Iām extra-commenting when people are drunk. Cause Iāve been sober for like a decade and now I just see it differently. And I donāt miss it. What helped once was when I was told, āyouāre drinking because you think it looks coolā - to which i first replied, āWAHT!? no!!ā and then i realized a lot of it WAS true.
the negative effects are not worth it IMO. 100% not.
BUT - I will add a second piece that had my alarm bells ringing, and it made this even more robust of a thesis.
WHy? What? Huh?
Wellā¦ this event was about giving an award, right? Iāll write the exact notes in my notes, below - but he said something like, (when receiving the award) - āI dontā even feel like I should be here right now, I donāt feel like I deserve to be here, with you guys - and really, letās thank the people who are super good at wording, talkign to the FDA. They have an insanely difficult task, its true talent, and I thank themā - something like that
So Iām like - WAIT what!?!??! What? What? What? What. WHat? What? What??? What?
What? They are giving you an award for doing somethingā¦ but youāre thanknig your FDA wording guy? For carefully wording things to get it passed?
WHat?
Soā¦ let me talk to Ai and pull together a summary. Cause this was insane to me.
Actually - iāll switch it upā¦ letās put my NOTES here next, then Aiās summary at the end, okay? okay! :)
NOTES TAKEN (this was not a laptop-appropriate event, so I hand-wrote notes. Thatās why there are less - and some of it I canāt read, haha. jk. but not really)
Okay, so I got my food and sat down and they were saying this:
We really need to work together: pharma, businesses, reglatory, to (persuade?) leadership
This award receiver is an author, he runs a medical company, he has done docuements. Welcome. Heās a leader in toxocology
He says this award is all thanks to the regulatory affairs team. Without them, this wouldnāt be possible.
The documents they worked on were so useful, but the true work is done in-person.
By talking to the FDA. Speaking with very carefully phrased sentences. I am grateful for them. They have amazing talent. To be able to have that kind of interaction, thank you.
The audience nods as he says this and claps.
my jaw is dropping!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Then I realize that was his acceptance speech. They also give him flowers (which makes him smile), a certificate, and a free membership.. even though heād started off his speech (i didntā write it down) saying he feels OUT OF PLACE HEREEEE - what is this!??!?!
NEXT, after a break (where I talked to a woman I extremely liked, she was from india - and I told her a number of places to join events and actually shared a lot about myself with her. it was so random - but one lady came and interrupted us and mentioned I was taking notes and laughed, but later I saw her drinking a lot, too - so I was like, haha ok. She doesnāt even care really that I am taking some notes.) They invited a woman up to give a speech. Iād noticed that she and myself were maybe the only two people wearing dressesā¦
The hostess explains theyād met at a related event, and after hearing her story, she thought everyone needed to hear it! Then, she started her speech. It was super personal and vulnerable with a lot of family photos, especially her daughter.
and her story of finishing her doctorate while also having a baby and ilek trying to do all of that at the same time, its amazing she did it. After having a kid, myself, Iām like - completely in shock that people can achieve much of anything that first year. I didnāt sleep. I was so sad and tired. It was impossible. So, I was kinda happy to hear this woman tell her story, though she dindtā make eye contact with me once while she spoke (in this small room) which surprised me, cause I did try to like connect with her a few times.
But idk. So, that did annoy me a tiny bit too, cause I was really impressed with her grit. but, I also felt liek, she was a bit of a prop. But we all are. We really all are. Thatās my feeling - that the medical industry is hiding ENDLESS cures - and its for reasons they donāt explicitly say. So.. anyway, let me get back to my notes.
Rare Diseases Worldwide.
This disease was named in japan.
There are over 400M people with rare diseases worldwide. Only 5% have therapies.
We need more research and thearpy in general, but this costs time, dollars, and talent. Recruitment is difficult.
This ladyās name sounds like itād be famous
She thought she could use maternity leave to finish up her college.
But her baby had so many genetic issues.
Dude this speech is so stressful. Itās not what I expected for a Friday night dinner.
Her daughters face is shown - its realy difficult to look at, I only looked for a moment - her mouth and nose look combined but then its cleft. Iām not sure.
The lady says she had to pump 24 hours/day to get enough, and then she had to drip-feed her daughter so she woldnāt gag. And she couldnāt trust anyone else to do it because it was so difficult.
She did most all of the work.
Her husband would come home from work and sheād work on her disertation while the baby napped.
I was JAW DROPPED by this schedule. HOw!? I couldnāt even ever sleep more than a few hours literally for a year. IDk how she did this. She and her husband must have been truly in love or something - or they had family around? To help at least a bit. This is crazy hard for someone and idk how she did it (but also, I wonder if she shared a lot on social media, too - cause all of these pictures are like PICTURE-PERFECT of her daughter. It makes me think this is like a photo dump cause weāve already seen so many).
The symptoms were so strong. After she graduated, she decided to stay home and take care of her daughter. She felt there was no choice. She had to keep her alive. Her child before her career,
Then she took time to care and to research.
This speech is so emotional.
Diagnostic odyssey: prolongued, difficult process of obtaining a corrrect medical diagnosis
Lots of photos of her daughterās face/mouth. But growing up a bit.
Itās serendipidous that the genes that were malfunctioning in my daughterās disease are actually the genes discovered right here at this local university
Is it?? or is it antoher reason they love you as a speaker right now? These people wanting money for research into more medications, etc.
Andā¦ researching these diseases + cures is EXTREMLY important - i just think A LOT of medical information has already been discovered and is purposefully being held back from the general (and informed/professional) public, 99.99%. Really. I know it sounds crazy, but I just think there are bigger goals going on and the EXTREME elite who have their hands into everything have great reasons to profit, let some suffer as a cost, all so their big goals can be accomplished.
This is why knowledge graphs + ai are & will be amazingā¦ along with hopefully more whistleblowers, sharing of information, and transparency for the betterment of human life overall.
IDK those big goals, but I just think the medical industry isnāt running at the top of its intelligence, by force.
Her daughterās disease triggered symptoms from every major body system. And the odds of getting this disease are 1/32,000. And this disease doesnāt let your body turn on/off different genes (?)
There is no cure, but finally they know at least whatās going on.
There is no cure and there are no treatments.
95% of rare diseases have no cure, those 5% are from family members and communities working together and solving it.
Some people at this event are drinking a lot. I notice that the server offered me drinks, was going around pouring more drinks for people (who hadnāt even finished their first drink).
Another older lady who seemed to have been running the event, not one I talked about before, she was super rude to the waitress, too.
The waitress was really nice to me when I walked in, got me some sparkling water, etc. So, I kinda kept an eye on her throughout
I noticed this lady was so rude to her, eye rolled, was frusterated that some plates didnāt have enough macaroons (and then she was forced to take the macaroons from MY table! lol..)
So, that lady was offered my wine by the waitress, but she didnāt even acknowledge her, and I saw the waitress smile over that.
The speaker says hse works part time with this group. They share stories once a month. They talk about the medical history, whatās working, their plans.
They survey what the community NEEDS
Neurological problems are a huge symptom for the people infected with this disease.
They have a LEAP plan: learn, enable, accelerate, and plan.
I just know this strategy is waht it takes.
I realize sheās such a āreal person telling a storyā right now, you know?
This is super dull though, this event. Itās a friday night and a poor use of this venue and group. I just think it coudl hav ebeen a different story told, something more āfriday nightā uplifting - of course there are struggles in the world, but this is super depressing and sad. Itās reality, I knowā¦ I just think it could have been told/shared differently and this Friday night awards celebration, could be a bit more fun. I bet more peopel would show up.
I donāt need to preach how biometrics are needed for ethicacy.
But in 2023 135M was raised and launched to help us research. We are studying blood, urine, and EKG.
We hope to have data by the end of next year, with families locally participating.
I wonder how much of the audience is enjoying this and to what extent? This table Iām at is all younger people my age and all of their wine glasses are empty at this point. Three young attractive guys at my table and then the nice girl.
It looks like everyone is kinda paying attention though, or maybe drunk? The room is bright, small, and not too crowded though, and this story is sentimental, so itād be a bit rude not to pay attention blatently.
Iām always surprised more people donāt take notes at these things too!
Just seems people miss the opporunity right in front of them - but thats cause this is meant to be "sortta not workā, but really it feels like āmore boring churchā - cuase i used to go to church as a kid for an hour and it was super boring - but at least you got to sing. but for this, at least you get food, but you sit and listen to this for three hours. I couldnāt.
They ask this community what platform is best for hosting, so they donāt end up with one they need to scrap and then start over.
Whatās really happening with these patients? They want to make the disease with more conceptual framework.
I want to leave soon. Iāve seen plenty and I think Iām only going to discover more than enough if I stay for the next 2 speakers. After sheās done, Iāll go.
cause also they put away the food!!! I hardly got enough lol.
Mothers with sick kids will never stop.
this is true. and the industry knows this.
BTW: I literally thought this event was going to be about transportation when I first signed up for it, then an hour or so before I realized - no.
Then there is a Q&A
the first lady just makes a long comment that wasnāt a question.
Then she follows up with a niche question and they talk about it.
That lady speaks up again later.
The next person talks about how Ai is being combined with a lot of businesses
Insurance is difficult but covering more bit-by-bit, theyāre greatful for local partnerships.
Families are so happy to be w/o paperwork
One lady has asked 3 qustions now, but mostly theāyre just comments. Long comments. haha. I feel they should just exchange information.
There is a cell bank at UCLA and they have 3 lines with dillution.
Iām going to leave soon, but I wonder how intentionally boring that is meant to be - the goals of this single sponsor? I donāt get it. Why wasnāt this Friday night at all optimized? I just feel this canāt be a 100% coincidenceā¦
According to the event program, there were still more speeches, a raffle to win a membership, and a few more things planned for the night. Ending with 15 mintues to network before the venue needs eeryone to leave.
I just left early.
THE IMPUT FROM Aiā¦
(soon)
Until next time, I wish you the motivation and success to search for opportunities around your area. Search and explore: Who is out there giving talks? There are new things happening all of the time.
Find relatable or interesting topics you like and check them out! Maybe even something hosted at a cool venue, if thereās no other reason to go. Letās see what you can learn and discover not too far from home. š
