Teen is one of the first ever to get his genes edited. Why he says the process is 'cool and freaky'

[@Dingutifunati]

I lost three sisters to sickle cell, and it brings me joy to see this. I wish all the best to Johnny and all the other patients.

[@mach1553]

I hope it works w/o side effects.

[@lawsattitude1999]

Sorry to hear this.

[@lawsattitude1999]

@@mach1553 There will be side effects. Let's just hope that they ain't major and the treatment is still worthwhile.

[@xDueyx]

There won’t be any

[@nicemmmm]

So sorry for your losses🙏

[@mysteryexplorer556]

Sickle cell is severe, debilitating disease. I remember patients say it was worse than cancer. This is such a fantastic medical miracle. Hopefully this can be a forever game changer

[@tijan8948]

It's a feature of African genetics, not a bug. This evolved in Africa to protect populations from Malaria and procures partial immunity. Its just as fundamental to African genetics is is darker skin which evolved to adapt to the environment. Sickle cell disease is devastating for people who have it. But targeting the genes misses the mark and is a slippery slope towards full inheritable genetic modification in humans. Beware of these modern day Frankensteins. God should be our only creator, not Jennifer Daoudna.

[@princerose233]

Sickle cells saves many people in places with malaria.

[@princerose233]

It's not a disease. It is a mutation to combat malaria. Inform yourself.

[@HaloHighlightz]

I was born with the rarest and least severe form, Sickle Cell Beta Thalassemia, so I technically was born with SC and Thalassemia, another blood disorder which "softens" the effects of SC and I've still unfortunately complemplated the unthinkable when it was very severe. There are some with SS who have already gone that route, unfortunately. Idk how those with the severe forms do it, they truly are warriors who deserve an affordable solution other than throwing meds which don’t actually treat the root cause. In my lifetime, hopefully 🙏🏾

[@junbh2]

​@@princerose233That is irrelevant to whether it's a disease or not. It's both.

[@cloudythagreat]

Beyond happy for him I’ve had sickle cell for 21 years and I went through the same gene editing process and it’s been more than a dream come true just when I was all out of options and just biding my time this was presented to me and my family and I’ve been in the best physical health of my life ever since💯👍🏽

[@TheLawrence05]

So you are actually the first on the planet to have the editing?

[@teresalegler2777]

Wonderful news. Prayers for continued good health.

[@jakegutierrez7470]

A few hundred people have actually already been cured of sickle cell through gene editing, the boy in the video is just one of the first teenagers to have it done !@@TheLawrence05

[@cloudythagreat]

@@TheLawrence05 not on the planet but one of the first people in Cleveland

[@cloudythagreat]

@@teresalegler2777 thank you !

[@earlye]

"While he didn't get superpowers." This young man DISPLAYED superpowers. He took a huge risk that has pushed medicine forward. Humanity owes him a debt of gratitude for his bravery. Thank you!

[@azekel7687]

I mean, when you have a painful illness that has you constantly knocking on death's door, anything that stares you away from that road, changing an inevitable outcome is better.

[@Ortiz8094]

Nothing is more priceless than having your health , well wishes .

[@jdrmanmusiqking]

2 mil is OUTRAGEOUS

[@Wherethewildthingsareone]

They're counting in that.. all the way to the bank

[@HiThisIsMine]

2 million a treatment?!?? That’s absolutely absurd. Nothing in medicine should cost anything remotely close to that… regardless of how new it is.

[@DanildFlamme]

It is a tricky scenario involving the whole patent-scenario. On one side, the farmaceutical companies needs to be able to patent their drugs, so that they can earn back their investment plus a good profit, so that they have an incentive to make the large investments needed to develop those drugs (And some treatments will only be used rarely, so they need to cover their development costs on relatively few patients). On the other side, this also gets heavily abused by some of those companies, and the prices end up going way beyond simply making a profit. But yeah, I also have a hard time seeing how 2 million dollars per treatment is necessary to recover research and development cost, but I might be wrong.

[@jcf2322]

If a drug company has to invest many millions of dollars in research and labor, for years, without no guarantee that the particular treatment might be successful, and no indication that they will profit it from it, why would any company make the investment?

[@AwkballOddward]

​​@@jcf2322 For the same reason the recycling initiative is failing... There are some things that mankind do that shouldn't be done "in the name of" and "exclusively for" profit. If we and our govts fund this research why did it get to a point where research that benefits mankind is only worth doing at a profit point?

[@jcf2322]

@@AwkballOddward Agreed, and we should make reforms, if the government is heavily subsidizing the research that some of the proceeds go back or some kind of guarantee of contributions to those of lesser means. And in terms of recycling, the fact that a profit seeking motive is missing is the critical issue, what you’d want to do is find a way to make trash / recycling profitable rather than just waste.

[@victoriaguerin2851]

When I lived in France, the same drugs I took in the US were less than the cost of my copay and a doctor's visit without insurance was about $35.00. I hope Americans will be able to get this treatment abroad, but we really need to set price controls as the Europeans have done.

[@witch_in_a_wheelchair3050]

Absolutely incredible. 2 years without a pain crisis must feel amazing.

[@YverdonLIVE]

@Taniel-x9mHe did, that’s literally the whole point of the video.

[@BurritoMassacre]

What a sweet kid. Wishing him a lifetime of success and health.

[@MentalPistol]

you sweet for that

[@solo_Traveler55555]

I am 49. It's was difficult watching my Mother, cousin and nephews suffer. Me pleading with the Doctors to ease their pain. Doctors telling me that Sickle Cell Anemia patients abuse medications. I have lost 2 relatives. Now I am caring for a 9 y.o Nephew. Praise God.

[@caryfrancis8030]

Praise science, it can help you.

[@TiyaBooker]

God can help too!

[@caryfrancis8030]

@@TiyaBooker When did that ever happen ?

[@artisthusnatalal3099]

​@@caryfrancis8030... Because you don't believe, so it will never happen

[@user-gh8wt2zi2n]

I've known people who got relief from hemp oil and cannabis

[@xgearheart8592]

2:16 "I feel like a guinea pig" This young man says exactly what everyone else is thinking. His parents should be proud of his bravery and intelligence.

[@The_capital_group]

Or desperation? and who knows how this will turn out/the complications, especially with respect to the whole circulatory system of ones body. Is it affecting his height?

[@jevinday]

"do you feel like a medical pioneer?" "I don't know, I feel like a guinea pig" This kid is funny 😂 I hope he's doing well

[@tijan8948]

And he is a guinea pig... Sadly, he is being used by people who have an agenda promoting full genetic modification in humans, leading to permenant and inheritable modifcations done by modern day Frankensteins. Slippery slope!

[@gshepherd6141]

funny or actually that is the case. But no choice because he has to try to live.

[@ahdorbfidks]

lol

[@eddieactivesky]

😂😂😂😂

[@starbug345]

Hope he stays healthy

[@wegotthis247]

His smile and demeanor are infectious!!! That huge smile made me click for the story😁Such great news for him and his family. High five to the doctors, researchers, and funding!!!

[@kalishajnz]

As a person who has sickle cell disease, it's really nice to see it getting more of a spotlight. I have fetal type hemoglobin and although I deal with pain daily I can go up to a year or two without a crisis so I'm not in the hospital as much as others. I hope one day it becomes more affordable so that the younger generation can have a better experience. 💜

[@milanimorales2645]

I'm glad they found this breakthrough. Such a nice kid.

[@nca4794]

Mom's features with Dad's complexion. What a gorgeous kid. I hope his days of pain are over with. May God continue to bless him and the whole family as they journey on.🙏🏾

[@edithlenora9022]

He is very handsome.

[@danajessop2835]

What a cute boy. I'm really excited for him. As someone who deals with mind numbing back pain, I love this for him.

[@kimberlyaccurso1921]

What a beautiful young man. Best wishes for a fantastic pain free life !🙏🏻❤️

[@psychologicalpotatoe]

Bro is just a straight up chill dude fr

[@TeamYELLOW17]

Just seeing him smile immensely warmed my heart.

[@slayaw99]

Sickle cell has been a neglected disease primarily affects African Americans. I’ve lost family members to this disease, so grateful to hear there is new hope ♥️

[@homodeus8713]

And Indians.

[@bukskarl]

It affects Africans, Indians and Middle Eastern people too. In Nigeria, most people are highly advised to check their blood type before getting married. Blood type AS or SC is advised to not marry another AS because of the high risk of having SS and SC children.

[@DRmisse]

It is not that African-Americans, it is in all countries where mosquitoes are found, do not forget that it is a genetic mutation against malaria (disease of warm countries).

[@yawmaame7094]

@@bukskarlthe same as in Ghana. When you marry in church, they order you to do STI test, genotype test etc. before you can even start marriage counselling. If your genotypes are not compatible, you’re advised to separate but some people still go ahead. I hope the Lord’s favours them because bringing kids into this world with this disease will definitely take a toll on your love life.

[@barrywilson4130]

We need more stories like this in the news these days. Delighted for Johnny 🎉

[@tragicrhythm]

Extraordinary technology and outcome. Hope the results are lifelong for the kid!

[@ggJesusisLord]

He seems like an amazing young man! God bless him!

[@rawburtmartinez]

He went 2 years without pain! This technology is amazing

[@CEELOW3000]

First time I saw a doc about CRISPR was for cancer treatment - this was over a decade ago - I wonder how much longer it will take for them to use this for cancer treatment - it could perhaps save millions of lives!

[@crismarieb6275]

What an amazing kiddo he’s so smart and strong and so are his parents for never giving up hope. I hope he stays healthy and lives a great life. I hope that our government will continue to allow CRISPR to cure others diseases especially for our children no child should suffer

[@soulchorea]

Man this kid is a perfect 50/50 blend of his parents 😄

[@hopperskid381]

thats exactly what i was thinking lmao

[@patrickthebaptist-sharingt428]

Not anymore, now he has been modified.

[@madelinemanor3367]

Go Johnny go! Your attitude is amazing, and your smile is the brightest 👍👍👍 from a California Granny 👍🥰

[@carolafricangirl6836]

Been a sickler since i was 2. Im happy for him. Ive lost count of the number of times ive been admitted to hospital. I will be going on a trial soon with some drug. Hope for good results. I have a 17yr old daughter.

[@seunjolade4131]

Hi Please i have a two year old with sickle cell. Please is it possible to share contact information I will like to more about the treatment

[@jacobk9322]

Absolutely incredible. These advancements are a blessing, I hope he keeps us up to date on his progress.

[@jintzie1950jth]

Make this free for anybody who needs it.

[@kristenkern4247]

Exactly!

[@valkyrie1066]

You HAVE TO....No regular person can pay two million dollars. It is rare but horrible. Stuff like this HAS to be government funded.

[@Victor-it6bv]

Typical beggar mindset

[@TheUser808]

People like sir Victor here are why the government could never fund it. The general population wouldn’t accept shouldering the cost of something that doesn’t benefit them. They don’t even want to pay for things that do benefit them.

[@Victor-it6bv]

@@TheUser808 Put your money where your mouth is.

[@lpg12338]

Hopefully the young man has a long and healthy life.

[@marshmello6636]

Nope he is just sterile now

[@Januaryschild]

How do you figure that since the cells edited were hemoglobin not sex cells?

[@jsk3005]

What a great kid, I’m happy for him.

[@frederickr7938]

It's unfortunate that this treatment is so expensive, but I'm grateful for the medical advancement and Johnny's positive outcome! Blessings

[@kevinbernatek7875]

He was a very cute baby and toddler. Hope his life continues to improve. He deserves it!

[@Louie.Oxford]

this is NOT terrifying. Its a life-changing breakthrough

[@xdani_thethinkingneko]

**life changing for the rich 😢

[@gshepherd6141]

It'll be a 2million per treatment later, so if you wanna live...pay up.

[@MagicToenail]

@@gshepherd6141It’s not going to be $2 million forever. At some point, it will go down.

[@LearnTheCode5734]

@@gshepherd6141fr😂…. This is definitely gonna be one of the most costly procedures. You poor, you get kicked to the streets to die

[@christiandauz3742]

Then 'persuade' the rich like in the French Revolution

[@codename495]

What an amazing thing! I remember patients coming into the ED in SC crisis. So much pain and suffering. How wonderful!

[@NoSoyYo-TV]

I wish I could help in someway. Look at that smile. Give those scientists what they need .

[@FERESE]

As a Nigerian, we have to present our blood group certificate in relationships, marriage counseling and in churches when you're getting married. The first thing you ask a guy when you are in a serious relationship is his blood group. It is that important in our country. Many love stories have been shattered because of sickle cell anemia. So when we're looking for love, we're also looking out for blood compatibility in Nigeria.

[@MAL1GNANT]

And now we can alleviate that?

[@kwameankrah8191]

Unfortunately here in America I haven't heard of people asking about Genotype before stating a relationship or conceiving a child.. it's not part of the culture here in America.. We could learn a few things from you Nigerians..

[@ImmortalChaos]

What a lovely young man and what an incredible treatment. I hope he's thriving.

[@kayc421]

This is a devastating disease. This is wonderful news!

[@voorkobserve4716]

In Canada, 6 beds out of ten are used for people afflicted with schizophrenia. Gene editing will be a major turn point for humanity and hopefully for the best.

[@tatum635]

at very HIGH costs at first. it could take decades to be affordable when it finally gets approved for the general public.

[@anandvannalath3104]

@@tatum635 Unfortunately, you're right. I watched another video by SciShow about gene therapy and it was talking about sickle cell treatments. The treatment cost around $2.5 million, though hopefully with societal pressure and the rate of development of technology this can become a treatment available to everyone.

[@Tiger_Pumper]

I would imagine the health industry would disapprove having their business taken away.

[@sjwalkin]

That is incredibly high to the point where it is hard to believe, do you have a source for this statistic?

[@juliahello6673]

It’s easier to edit blood than brain. It’s hard to get the gene therapy to the brain through the blood brain barrier. Plus solid organs are hard to penetrate.

[@payasoinfeliz]

I used to play online video games a lot. I befriended another player through this game, he was friendly, and we played several times per week. Then one day he stopped logging on. I later found out he died of sickle cell disease. Was super sad to hear about it. I didn't even know about the disease beforehand, and had no idea he had it. Glad to see this advancement saving lives. Game on!

[@birdhousegypsy3655]

Seems like awesome parents. They have so much love in their eyes.

[@YAH77723]

JESUS CHRIST can heal him. Hold on mama. I know. Please hold on

[@Shawn-ho6de]

What a good kid....happy for him. This is great to hear

[@Thaiurbangarden]

Omg this kids is so smart and hilarious! I love his personality! I’m glad his treatment is working and pray the treatment last longer than expected!

[@angel-vz7ii]

What a cute kid. Wish him all the best. Be well.😊

[@teresalegler2777]

Fantastic news! Best of luck! Love the progress in Medicine.

[@angeldejesuss]

This is beautiful. He is extremely brave. I hope he becomes okay

[@CAZZIEK321]

Wow, that’s incredible, I hope he goes on to have a long and happy life.

[@saturdaysequalsyouth]

The future will be stranger than any of us mere mortals could have possibly imagined

[@BlahstarRecords]

it will be good and bad, just like the world has always been

[@YAH77723]

Tell me about it

[@grinreaperoftrolls7528]

Stuff like THIS is what got me into biology. This is so exciting

[@taekwonStudent09]

I hope this has no policy roadblocks, such as people thinking gene editing is immoral. This is wonderful. I had patients in sickle cell crisis, and they were suffering.

[@iammanna]

😐 it's gene editing, that no one can afford .....mad scientist like, but you like it, I love it

[@malwads1836]

​@@iammannaI imagine eventually they'll lower the cost on it since a service/product isn't very lucrative if nobody is able to get it ultimately.

[@cocalita03]

@@iammanna what does this mean?

[@Sovietonion-1312]

@@malwads1836 you'd be surpised lol

[@Yenchantress1isaStarr]

Gene editing is sorcery, another cash-cow for them.

[@CS-wn2sz]

That B in BLACK was very aggressive😂

[@kurisu3000]

*B*lack

[@JustEverton]

​@@kurisu3000So the anchor is trying to tell us black people lack something? Interesting agenda🤔

[@trickledowngaming7749]

@@JustEvertonwow way to project

[@patrickthebaptist-sharingt428]

ONLY BLM.

[@JustEverton]

@@trickledowngaming7749 joke?

[@BORN-to-Run]

$2 MILLION DOLLARS is the Game Changer!

[@DeidresStuff]

The cost goes down once it's something that can be used on more people. It costs a fortune to develop these things, and then the companies have to pay the government to be allowed to test them, which I've always thought was crazy. Why should companies have to pay the government to test potentially life-saving treatments?

[@edpoletto8048]

Incredible!!!!!!! All the best to you. Another reason why health care should be universal.

[@troylawson1902]

My spouse has this in her legs sickle cell is so painful she would wake up from a deep sleep screaming in agony. The pain she describes is like knives and fire hitting her legs with glass thrown in and as if someone ran her legs over. I hope this can become affordable for those who may not have insurance because this like they said will be extremely expensive.

[@roots1458]

Blessings to this beautiful young man!

[@herahagstoz6934]

This is AWESOME!!! This is such an amazing step forward.

[@ssmt2]

Ya gotta love modern medical science! Hopefully the cost can be brought down enough that the treatment can be made available to everyone that needs it.

[@monicarust2383]

Precious boy! Great news!!!❤❤❤

[@alexanderangelo7284]

This is only the beginning....

[@cybic2k]

This is amazing!!!!! Two years pain free!! I hope this is life long for him - great job docs and parents!!

[@DangerousKaos]

I wish my late cousin was alive to be able to get this opportunity. She died because of sickle cell and now her three kids had to live and be raised by her parents my uncle and aunt. We miss her

[@showman1438]

He is the most hilarious patient any doctor can hope for😂

[@Omarbrown204]

😢😢I can’t wait to get my son this cure I go through so much with him

[@iamcorine]

God will heal him.🙏🏾❤️❤️❤️❤️

[@JesusChristDenton_7]

"We are not only men of science: we are men of hope." - Dr. Jonas Venture

[@KyrosnoProductions]

I lost my aunt earlier this year to sickle cell. She would've loved to hear this

[@obibraxton2232]

And now we have Supacell (UK based Netflix show) so funny hearing the young man. Say he feels like a superhero! I wish the cost would be reduced so more could I gain access to such treatment. I’m here for this.

[@davericks4228]

So cool! Great news for this young man's future :)

[@williamhornabrook8081]

$2 million per treatment is super eye watering, but this is beginning and that should come way down over time. Very exciting stuff!

[@sb5224]

It is to be covered by employer insurance and Medicaid.

[@mastermill79]

Good for you kid, glad the pain is mostly gone 🙂

[@Artmuse2011]

Hope he and all who takes this treatment will be permanently healed ❤

[@torakfett3351]

As someone who has chronic pain that keeps me from living my life- this is brilliant!! This is what we should be doing with technology!! ❤❤

[@quantumfineartsandfossils2152]

2:40 Johnny Lubin is definitely a pioneer & not just a "guinea pig" he's my hero!!!

[@ghostmantagshome-er6pb]

We are on the right track.

[@amypola5903]

I don't subscribe to a lot of medical science, much needs to be changed, but this is excellent work, and I'm so happy for those who recieve this treatment!

[@patrickthebaptist-sharingt428]

It's really another religion.

[@petermasue]

Johnny has such great energy!!!

[@RomeNY2010]

Praying all the best for this young man.

[@whitebluesky6932]

Hope it helps him feel better 🙏🙏🙏

[@wendigo53]

Mr. Lubin now 17 feet tall.

[@smooth2477]

Amazing story so happy for the family

[@venusalexa7367]

See this is the right application for this. The benefits outweigh the risks. Best of wishes to this kid.

[@p.s.xoxo...lifeandstyle6101]

What a beautiful ending to this story. I wish Johnny a long healthy and successful life. What an amazing kid.

[@wearedustinthewindinthewin7239]

Hope this medical treatment is lifelong.

[@angelictigerette]

2 million dollars?! I was about to comment to say wow what a breakthrough. I have two little cousins who were born with sickle cell, and they were both in and out of the hospital throughout their entire youth. Unfortunately one of them is no longer with us, but, I hope that this treatment is able too save many lives lifelong and hopefully it becomes affordable for the average family.

[@patrickthebaptist-sharingt428]

It's a break through for those few making big bank off selling it lol. They aren't going to tell you what the real down sides of it are, only the so called good, the new diseases they are opening the doors up too is scary, playing god always comes with a curse.

[@springbloom5940]

Genetic engineering will never ever go wrong

[@Inmyownleague]

Not from the point of view of the ruling elite

[@springbloom5940]

@@Inmyownleague Yup. Already experimenting on black children 🙄

[@BlanBonco]

It could go wrong sure but with him we will be able to see what happens. Crops and animals are another story.

[@MagicToenail]

Just trust the process. Over time, it will get safer as we get more experienced.

[@baxxymw]

Sucha a beautiful kid man. I wish him all the best.

[@thaliahall4599]

Praying this treatment will be a real game changer for those with sickle cell and possibly other diseases! He and the others in this experimental study are very brave. 🙏🙏

[@kellyredds7292]

I see a young happy doctor seated between his parents.😊😊

[@stickynorth]

CRISPR has the potential to save countless lives. To think ANYONE would be against it at this point is insane. Especially when 19/20 haven't had attacks since being treated! That success rate in the medical field is almost unheard-of and inspiring, especially to those who have other incurable, fatal conditions...

[@santomusic3981]

I don’t think anyone would be against this test treatment to address a serious issue. However, there is always justifiable questions about long term effects etc when such treatments are used.

[@pakman3777]

I hope everything works out how they think it will

[@larrymunn5279]

Probably not. Gene editing to my understanding at this stage is just breaking a link and making sure it stays broken as the body will attempt to repair it. It's messy. But, could be old news already I ain't heard much about it in years. Gotta start somewhere if you have a place to start from. Long as it can do more good than harm.

[@asassynation9955]

Oh, I’m so glad they’ve had a breakthrough for this! What an exciting time for those who suffer with it! I hear it’s an extremely painful condition. 😢

[@jazzya7383]

This is incredible!

[@MissesWitch]

"cool and freaky" is exactly how I'd imagine it to be!

[@snteag]

This is a wonderful advancement in medicine. I pray he stays in remission with his sickle cell. That 2 million dollar price tag, what the heck! Not many will be able to afford this treatment.

[@MandyX19]

This is amazing! I hope this is something they are able to make more affordable or a procedure that insurance covers to help sickle-cell patients and their suffering. But we know how the insurance companies are. Either way this is amazing!

[@TheNewRobotMaster]

They give him a second birthday on the date that he received the treatment. I got teary-eyed.

[@moonrivers71]

Sweet kiddo. I hope he lives a long and happy life. ❤

[@ADAJ3KINGANGEL]

Know your blood type and that of your partner so your kids don’t have to go through the pain of sickle cell.

[@95601]

How does blood type affect this?

[@ADAJ3KINGANGEL]

@@95601 people with ro subtype are affecting the most. Sickle cell mostly affects people of African descent because it’s a mutation that fends off malaria.

[@jinxterpinxter]

Sickle cell has NOTHING to do with blood type.

[@bmjpdx9222]

@@ADAJ3KINGANGEL Thank you. Never knew the connection with malaria -- the good news is, the bad news is.

[@redstarchrille]

@@ADAJ3KINGANGEL Kid... No mutation are not for fending of malaria, but people with it dont get as sick, due to malaria parasite cant bind to misshaped blood cells. Mutation happens at an rate of 1 in 10^-8 per generation. hemoglobin type is not a blood type.