A look at breakthrough treatment for sickle cell anemia
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- Опубликовано: 14 фев 2024
- A cutting-edge gene therapy is offering new hope in combating the painful disease that afflicts about 100,000 Americans, many of whom are Black.
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I’m a Black American molecular biologist. I 1st learned of the CRISPR technique back in 2011, and immediately understood its potential for a Sickle Cell Disease cure. I’m so glad the science has finally made it from the laboratory to the clinic. I once met a 30 year old SCD patient in the midst of a crisis…I was absolutely moved to tears by his cries of agony; made worse by the reticence of his healthcare providers to administer the necessary pain relief for fear he was “faking it” and simply “drug-seeking”. People don’t understand how painful this disease is…and the fact the vast majority of patients affected by the disease are Black has led to a gap in understanding, empathy and research dollars. It’s my wish that everyone who has this horrific illness gets access to this gene-editing therapy as soon as possible, no matter their location or ability to pay.
Glad to read your comments. My child has it as well. She has also dealt with some medical staff being insensitive; but not all of them. I am keeping my eyes open for more info and help in this area!
African American
Absolutely they do label us as drug seekers and overlook the ones who are have the real problem with drugs!
The U.S. healthcare system is horribly racist. I wish more ppl would see & understand how racism/prejudice can affect the kind of treatment not only us Sickle Cell warriors receive, but all black Americans in general. Especially black women.
Black women are more likely to die a PREVENTABLE death during or after childbirth than white women. Black men are more likely to die from prostate cancer than white men.
My mother almost died giving birth to me. My hematologist’s assistant, a black man, died on Christmas Day 2019 of prostate cancer.
Medical racism sadly is nothing new. But I’m hopeful that things like medical/systemic racism will change in the near future. But first, we need to find black drs./hematologists because they’re going to listen & understand us the most.
@@Beetwate305 the disease effects ANYone of African ancestry. It’s not specific to African Americans. I know Afro-Latinos that have SCD.
This condition is entirely overlooked. Grateful for this development.
hmm, overlooked indeed, which makes me curious as to why now this predominantly black disease has been given priority for this "experimental" treatment. Maybe we're just lucky
I wish my sister was alive to have had this groundbreaking therapy. Rest in peace Kamara.
🙏🏿🙏🏿😇
May she rest in peace🙏🏾
@@Draw4Dame thank you. 🙏🏽
Sorry for your loss, may she rest in peace ❤
@@tianathomas7732 thank you so much. 🙏🏽🫶🏽
My daughter has sickle cell and this is very overlooked. People don't even understand what these people go through on a daily basis 😭 I'm so happy this is available.
I have sickle cell as well! I’m happy that it is available, but it’s not truly available! It costs $2 million dollars and insurance only covers half of that! Unless you are a millionaire, patient’s aren’t going to be able to access it! So it’s just another let down bc hope is dangled in our face and then taken again! 😢
I pray that they find a way to make it more readily available to us! God bless you and your daughter! 💜🙏🏽
@@AuntieKia_4real my daughter and I was taking about it this morning. She said it cost $1M, another hurdle, we already have a hard time getting them to pay for the oxybrata🤦🏿♀️. Take care of yourself and God bless you as well. 💙🙏🏿💙
Praying that this does become more widely available. The benefits far outweigh the costs ❤
I have two kids and you are right
I hope this becomes available in Canada also 🙏🏾🙏🏾🙏🏾
"I had no time to wait for someone else to be brave" powerful 🙏🏼🙏🏼
If this is made freely available to patients, this would change the planet 🙏🏽🙏🏽
Free?!!! People would fight you over your student loans being forgiven, this will never be free.
It costs around $2.2 million.
It will be expensive and Insurance will not want to pay for it.
I watched an interview of a young man in Kenya on Tuko who applied for Euthanasia in Belgium because he couldn't stand the pain anymore and didn't have the money to seek advanced treatment.I can only imagine him getting access to this treatment
❤❤❤
My friend from Kenya went to the ER here in the states. They told her you have sickle cell and she denied it.
My mom's best friend died from sickle cell disease (drépanocytose in French) in their childhood. My sister's classmate died from it in middle school. So many people die from it in Benin (west Africa). I hope this treatment will soon be available on the African continent as it is VERY much needed. Thanks for the groundbreaking research.
Im very much worried about the cost of this treatment for Africa. Many sickle cell patients here die in their childhood. Its a very terrible disease
Ahh Drepanocytes (Sickle cells)
Yes
I'm from Benin Nigeria
What I want to know is will this treatment be covered by insurance? I hope it is.
it's 'elective' and doesn't save a life. Man SCREW these health insurance companies and the bastards that pay money to keep this corrupt system in place
Unfortunately reports are insurance only cover half. The total cost is about $2M
@@bklynfinest7 that's unreachable for 99.99% of humanity. I hope this sales price comes down.
It’s gonna go something like this .. PA required , pa request submitted , pa request denied at least twice .. PA is now approved only after an appeal and an angry patient threatened to sue and file a grievance with the insurance commissioner..
That's disgusting@@bklynfinest7
My 6 year old son has sickle cell anemia. His first crisis was at 8 months old. This disease is so underrated and I’m so happy that they are bringing more awareness to this. I totally empathize with these stories and the untold stories of individuals who struggle with SCD❤❤
Cold wet weather can be a trigger I have a nephew that has it.
Wish they had this back then before my father passed away due to this disease 😢!! They said he wouldn’t make it to 8 yrs old!! He made it to 56!! Soo young RIP Lamar Kimble ❤❤❤
My daughter has Sickle Cell SS. I hope that this treatment proves to be remarkable for young people and adults. 🙏🏾
May God go before you and hasten this process in Jesus Name! He gives wisdom to our Doctors.
I’ve had 2 close cousins who were sisters pass away from this disease. I’m glad to hear there are advancements being made in the treatment of this disease 👏🏾
Needed badly in Nigeria 🇳🇬
My every day prayer
This is wonderful news. Sickle Cell Disease is definitely horrific for the patient and family. Prayers that things continue to improve for these patients and hopefully, many more to come. Thank you for sharing this story.
I'm 35 and live in Nigeria, I was diagnosed when I was 10. Wish this remedy was available here.
Need this here in Jamaica
We need that treatment in the Caribbean
Now here’s to hoping insurance will fully cover the drug… or atleast slash the million + dollar list pricing so patients can afford it..
This is an incredible breakthrough. I truly hope this treatment is covered by insurance so that it can reach as many people as possible.
Thank you Good Morning America - I appreciate you for this broadcast. I receive this research result on Sickle Cell Disease (SCD) therapy with thankful tears and trust in God that it will be a blessing to the millions of people and their loved ones suffering because of SCD all over the world.
Have lost dear family to this. So happy to see this progress.
As a healthcare professional who has taken care of sickle cell patients it’s a terrible disease and I applaud the bravery of Victoria to open the door for many other deserving patients.
This is so needed in Guyana and thank God for this breakthrough! Both me and my son have the trait; my son get pains from time to time however, I don't.
Sickle cell is caused by a reccessive gene, which means you need both. Both you and the child's father have it, that's why you don't have the disease but he has it. And...Your name is Janice Griffith? lol A Google search of that name brings up pretty interesting results.
This is good news. My first girl friend suffered from this. She went through so much pain. I started crying many times just watching her. Some good news in this hard world.
Currently pregnant with a little boy who has the possibility of being born with the disease. I pray that he isn’t born with it . Praying for all the scd warriors
We need to hear the outcome when you deliver. I hope he isn't. Prayers up for y'all.
they should be able to do a chorionic villus sampling and let you know. However, if this is the case, the CRISPR tech will offer great opportunities.... very soon.
We need this treatment in Zambia.
My best friend had sickle cell she was not expected to make it through her childhood. But she died 10yrs ago at the age of 42. She was in horrible pain most of her life and doctors called her a drug seeker. She was not. When she was passing away she just moaned and screamed in pain all day none of the pain medicine gave her relief. I’m so glad they will use this because those with sickle cell really do some suffering we can’t even imagine.
I'm sorry for your loss. My Condolences ❤. May her soul rest in Peace. Amen
We thank God for this hope we wil receive this in kenya families are suffering due to this disease and many have die too.
this is remarkable work…. RIP DAVIDA BANKS of Chicago, IL… 9years too late for her… knew her since 1st grade….her journey and fight ended 2015…
This is great news and thank you for highlighting it! *Now we need the $2 MILLION treatment covered by insurance companies at more than 50%!* The average person cannot afford that.
We are a sickle cell white American/Italian family that have lost several of family members. Both my Italian grandparents were from Sicily! Caucasian people suffer this disease as well! I am a carrier, and my son is a carrier!! His both girls are carriers of trait!! Thank God this has been discovered to help this disease carrier!!!😢😂
IWhen I was in college I wrote a paper on sickle cell. I learned that majority of sufferers are Africans, followed by African Americand due to genetic drift because of slavery. I also learned that some Italians, Spanish, and as far as India can be affected. I hope this breakthough will help your family and many other sufferers🙏🏽
@alicegauteng2358 thank you. I agree 🙏🙏
I wonder if malaria was affecting Sicily as much as it was affecting Africa (or it could just be somewhere in your family history was african), being a carrier for sickle cell can be a protection from malaria and its seen as a evolution response to combat malaria. However if you have the disease it doesn't protect you. It's crazy how something like that changed DNA to protect humans but too much of it can become lethal
@@terynb4407this makes so much sense because even as an African those of us who live in areas that have heavy mosquito presence have the most cases of sickle cell disease. I was born here so was her mom and her mom but in an area that does not really have mosquitoes and there is not a trace of sickle cell disease in my family and this is going back for generations.
I’m from African country and our sickle cell rates are less than a lot of European and Asian countries. Zero if you exclude migrants. Doctors always test me for the trait though. Can’t imagine how many non-Africans carry it without knowing since it’s not associated with them.
Wow... I'm a 39 yr old that lives with this horrible/painful disease. I most definitely will look into this with my doctor. 🙏🏽❤️
I wish you well. Hope you can get relief.
People who have sickle cell trait provides malarial protection. But of course those that have sickle cell anemia, you do not. I work in a blood bank and this is exciting and great news for these kind patients. I wonder what the limitations are and what are the criterias to this kind of therapy. So many questions for long term use. Where I work we have a large population that uses rare antigen negative blood for our sickle cell patients. Fortunately, where I live, we have a large African American population to provide blood for our sickle cell patients. Since this therapy is new it may be years before doctors will use this to treat their patients, it is extremely important for African American population to donate blood. Your blood could save someone life who is suffering from sickle cell anemia.
I have Sickle Cell Disease and would love to get this treatment.
Thank you for covering this.
My brother died with it november 24 2022 at the age of 50 2 days before his 51st birthday
God rest her soul.
Please it's needed in Nigeria. I am one and would really love to get more information on this please.
Thank you for this video
Thank You for covering and educating others about sickle cell disease
I cried seeing the look on his face before getting up to hug her😭😭😭
Thank you for sharing this. I have a beautiful friend in London, England who suffers from this and wants nothing more than to be cured and be there for her 2 kids well into old age. She has been through so much as well as in and out of the hospital more times that I can count. Yes this needs to reach the rest of the world and fast. Lives are depending on it. I pray that somehow this becomes available for those who have little to no insurance.
Thanks for doing this story!
Amazing!! Thanking God for people who care!!
There's hope. Thanks for sharing this story 🙏🏾.
Both my kids have the trait. I want them to be very careful with who they decide to have a child with . It’s such a horrible disease 😢😢😢😢
I pray this cure works , my neice has it
They can marry who they want it is none of your business or choice. Even if both have trait they can go through IVF and do PGT-M to not implant the 1/4 effected embryo ... 3/4 not have Sickle cell disease.
Best of health to your children and grandchildren ❤
I pray your neice has a complete cure.
Bo one has to be born with the disease anymore. Just get tested, tell your kids if they have the treat or do invitro and get a child without the disease/trait
@@KS-cl8brsorry that is incorrect - it is not 1 out of 4 children (or as you suggest, embryos) that a couple has. Rather, each child or embryo has a one in 4 chance of getting both recessive genes and being SS, that is having sickle cell disease. It’s a big risk to take
@@ifeo.9774 obviously that is statistics... not a big risk you can know before implementation if it has the disease if you can't afford ivf then get pregnant through sex and determine if the fetus has it through amniocentesis which for this can be 75 to 90% accurate...
My daughter has the trait and so does both of my grandsons. This is great news!
SC and SS is a different world from a trait......😮!!! The trait is just a trait. SS/ SC is the " REAL monster!!!
SC and SS is a different world from a trait......😮!!! The trait is just a trait. SS/ SC is the " REAL monster!!!
@@jillenehall301 we know.🙄
@@jillenehall301I hate this continuous false information, people with the trait suffer as well! There’s an entire Facebook group of people with the trait who also experience crisis. Myself included.
Don't EVER compare that having a....... "trait"
Congratulations guys. I am so happy for you guys
i thank God for this break through, it's an answer to many peoples prayer.please make the this treatment available I in Africa.
Bring to Caribbean
This is wonderful
I hate having sickle cell...its too painful and sucks when even yhr best meds don't work
My mom has sickle cell and she called the number. You should call too
They said my mom was too old
This is incredible.
Thank you so much, it gives me hope for someone I love
I’m a pediatric hematology/oncology RN and I see on a weekly basis the pain my sickle cell kids go through. They miss out on school and other activities bcs their pain is that debilitating. What’s more upsetting is that there are disparities in funding and outputs for SCD compared to Cystic Fibrosis. SCD has DRAMATICALLY lower research and FDA approved drugs and therapies than cystic fibrosis (CF), which is also genetic. But it made sense when I realized that CF is predominantly in whites and SCD in blacks…
I hope my daughter get this as a Yale patient.
literally, your veins are blocked... that pain is unfathomable. My best friend goes through hell but we are not in America, we need this for every country. I hope that the therapy lasts and doesn't add complications.
Truly amazing!❤
Congratulations to the two.I wish I could get a chance for my son who is a sickle cell patient
This is AWESOME!
This is so important 👏👏👏
This would be amazing for so many people.
This is absolutely amazing 👏🏿 👍🏿🙏🏽.
Beautiful story god bless them
This is amazing.
Happy this is being talked about and that there is a treatment for it.
Most informative
My son lives with this disease, and this gives me so much hope. It’s true it’s such an OVER LOOKED DISEASE. God is so good !!!!
This is amazing!
This is such great news. Sufferers go through agonising and incessant pain.
I need to figure out how I can get this stem cell transplant! I will DO anyything to get my blood corrected to live a normal life without pain. In NC if anyone has advice 😢
Maybe you can google stem cell research participants for sickle cell disease
Well I've battled 57 years with it.... and is prepared to battle on until such time.....
God bless 🙌🏽 🙏🏽 every one with this disease. I had a beautiful friend named Keisha who had the disease 🕊🙏🏽
Incredible!!!!!!
Please bring it in kenya 🙏
❤❤ I just wish my son was here for this procedure but I am happy for those still here having the chance for a better quality life
Amazing. God answers prayers.I hope my best friend in Uganda will have access to this ❤.
This is extraordinary. The medical science, the bravery of these patients. This disease is terrible and so debilitating.
Sounds amazing. My aunt has this.
Thank God for this therapy, we thank also the promotor.
Thank you to this brilliant researchers and investors in this cures
WOW awesome
We need that treatment in the Caribbean
contact dr ani john on RUclips channel for help. he cured me permanently from this same virus with his natural herbal medication,,
This is Amazing! I wish they would have fully gotten into stem cell research Decades ago
This is wonderful news!
We thank God. Let's share this so save loves of people in our community suffering from this.
Hello
Thank you for this Great information. Please how we in Nigeria access this treatment?
How I wish my gifted Nephew is around, I would have gone all the way to get this treatment for him.
May Allah grant you the highest place in Jannah, Roqeeb.
I hope this becomes accessible for everyone.
I gave my brother bone marrow blood to cure his sickle cell disease in Atlanta ga I was 13 years of age now Iam 44 my brother is 37 years of age sickle cell never came back he was 2nd child to have it done at children hospital in Atlanta Ga
It’s sad the donations for research often follow demographics versus need. I’m excited that so many black lives will be positively changed by this, and I hope this will lead to more empathy when patients with sickle enter into the hospital system.
We need this in Zambia
Thank you Doners, scientists, engineers, nurses, doctors, patients…everyone. This is a game changer and will heal other diseases.
Its a game changer alright. Any gene editing means you are now owned.Just my opinion!!!
Great news
What are the long term side effects/benefits of using this gene therapy ?
No one knows, it's a relatively new treatment
Being a person that LIVES and SUFFERS from Sickle Cell Disease what they said that definitely hits the nail on the head is that it’s overlooked. It’s DEFINITELY overlooked and it shouldn’t be. People don’t get and understand what it’s like to live with this HORRIBLE SERIOUS DISEASE on a daily basis. But instead they look at it and see it as “the black disease.” So grateful this is in the making.
Praise God
Amen. All glory to God!🫶🎉✨
Awesome news
Needed in Jamaica .is it free in the USA
I hope people take the time out to get tested.
I PRAY THAT THIS WILL BE COVERED BY HEALTH INSURANCE AND AVAILABLE FOR ANYONE WHO IS WILLING TO HAVE IT.
ASAP 🙌🏿🙏🏾🙌🏿