https://www.europesays.com/uk/197276/ Sickle Cell Medication Cost Soars – NGO Plea to Nigeria #AffordableMedication #GeneticDisorder #Health #Healthcare #Medication #NGO #Nigeria #PublicHealth #SickleCell #SickleCellDisease #SickleCellMedication #UK #UnitedKingdom #WorldSickleCellDay
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There's a news story today about one small element of CDC staff cuts made in April.
It's the end of evidence-based contraception guidelines tailored for women with different health conditions, including sickle cell.
#SickleCell #contraception #WomensHealth
#CDC
https://www.nbcnews.com/health/womens-health/cdc-cuts-birth-control-women-chronic-diseases-sickle-cell-rcna211851
NBC News · How CDC cuts affect women with chronic diseases like sickle cell
Long Island man is first in New York history to be cured of #sicklecell anemia - CBS New York
https://www.cbsnews.com/newyork/news/sickle-cell-anemia-cure-new-york/
Two Detroiters. One shared journey, two different paths.
D’Juan and Larenz share a bond through sickle cell disease, but their paths couldn’t be more different.
Larenz is symptom-free after a stem cell transplant. D’Juan continues to navigate life with the disease.
Their conversation sheds light on the challenges, inequities and hope surrounding sickle cell treatments in Detroit.
Outlier Media · Two sickle cell ‘warriors’ interviewed each other. Here’s what happened
"…there was a “functional cure” in 96.6% of participants who received the treatment."
The Guardian · ‘Groundbreaking’ sickle cell disease treatment approved for NHS use in England
We can cure a genetic disease, not only in mice but in people! New #crispr based #sicklecell therapy fixes stem cells of patients. Now let's make it cheaper. https://www.theguardian.com/society/2025/jan/31/groundbreaking-potential-cure-for-sickle-cell-in-england-approved-for-nhs-use
The Guardian · ‘Groundbreaking’ sickle cell disease treatment approved for NHS use in England
"she still struggles with chronic pain in her back and legs caused by decades of tissue and nerve damage from sickle-cell disease."
#sicklecell
#medsky #blacksky #science #complex
www.nature.comDoctors cured her sickle-cell disease. So why is she still in pain?Gene and cell therapies bring fresh hope to people with genetic disorders, but recovery can be complex and long-term support remains sparse.
#SickleCell community scrambles after a Pfizer drug is pulled from the market
https://www.statnews.com/2024/09/27/sickle-cell-disease-oxbryta-patients-doctors/?utm_campaign=rss
STAT · Sickle cell community scrambles to find safe plan after a drug is pulled from the marketAfter Pfizer withdrew its sickle cell drug from the market, patients with the condition and their doctors were left scrambling to figure out what to do.
'Last December, the Food and Drug Administration gave approvalto two companies, Bluebird Bio of Somerville, Mass., and Vertex Pharmaceuticals of Boston, to sell the first gene therapies approved for sickle cell disease. After nine months, Kendric remains the first Bluebird patient to progress this far, with at least a few others advancing toward his pace.'
#SickleCell #GeneTherapy
https://www.nytimes.com/2024/09/16/health/sickle-cell-gene-therapy-kendric-cromer.html
The New York Times · First Day of a ‘New Life’ for a Boy With Sickle Cell
A fantastic story from C&EN about Indian gene therapies for #sicklecell.
In the US, we often think of sickle cell affecting African Americans, but there's a huge crisis in #India, where it's estimated over 1 million(!) people have #SCD.
https://cen.acs.org/pharmaceuticals/gene-therapy/Sickle-cell-disease-India-quest/102/i24
#UK #treatment for #covid is #rationed though there's many #medical #conditions that mean #sarscov2 can be #dangerous or #lifelimiting.
It's common knowledge by now that the #risk of becoming very #ill with #COVID19 is #higher with #diabetes, #obesity, #asthma, #chronic #lungdisease, #sicklecell #disease or just being #over50 but that's just tough luck if you live in the UK. Not only that, even those #eligible can't access treatment
https://www.cdc.gov/covid/risk-factors/index.html
https://www.theguardian.com/society/article/2024/jul/21/vulnerable-people-with-covid-struggling-to-access-treatments-in-england
#LongCovid
COVID-19People with Certain Medical Conditions and COVID-19 Risk Factors
NEW: #Vertex Pharmaceuticals is suing the gov over blocking access to #fertility preservation services for people getting #Casgevy, the first #CRISPR treatment, which treats #sicklecell & #betathalassemia
Currently, Vertex offering to help patients access these services illegal under anti-kickback laws
via @STAT
https://www.statnews.com/2024/07/15/vertex-casgevy-sickle-cell-infertility-hhs-lawsuit-fertility-preservation/
STAT · Vertex sues U.S. government over access to fertility support services for Casgevy patientsCRISPR treatment for sickle cell disease carries a high risk of infertility. Vertex wants to preserve patient fertility, but a federal rule poses problems.
Replied in thread
@jperkel @Nature @heidiledford I did not know about this: "Most of the people with sickle-cell disease in India — a country with one of the highest rates of the condition — live in impoverished communities. "
@STAT is investigating the denial of reproductive autonomy for people with sickle cell disease.
Their latest article explores "how doctors are pressuring sickle cell patients into unwanted sterilizations."
STAT · How doctors are pressuring sickle cell patients into unwanted sterilizationsSTAT series 'Coercive Care' looks at pregnancy complications from sickle cell disease and patients who felt pressured to have an unwanted tubal ligation.
CRISPR advances Sickle Cell disease treatment - The innovative gene-editing technique, CRISPR, has made a remarkable leap from lab... - https://readwrite.com/crispr-advances-sickle-cell-disease-treatment/ #gene-editingtechniques #medicalbreakthrough #healthcare #sicklecell #startups #news
ReadWrite · CRISPR advances Sickle Cell disease treatmentGene-editing technique, CRISPR, has made a remarkable leap from laboratory research to practical medicine by offering a groundbreaking treatment for sickle-cell disease.
I received the new gene-editing drug for sickle cell disease. It changed my life. | MIT Technology Review https://www.technologyreview.com/2023/12/04/1084209/vertex-exacel-approval-gene-editing-sickle-cell-disease-patient/ “I’d lived with #SickleCell my whole life—experiencing chronic pain, organ damage, and hopelessness. To me, this opportunity meant finally taking control of my life and having the opportunity to be a present father.
The drug I received, called #ExaCel, could soon become the first #CRISPR-based treatment to win approval from the US Food and Drug Administration,”
MIT Technology Review · I received the new gene-editing drug for sickle-cell disease. It changed my life.
Continued thread
These #gene therapies are billed as "one time" therapies, basically miracle cures:
Almost 90% of the Zynteglo trial patients were transfusion-independent afterward, for at least 9 years.
The new #sicklecell treatments are similar. https://www.statnews.com/2023/12/08/fda-approves-casgevy-crispr-based-medicine-for-treatment-of-sickle-cell-disease/
STAT · In historic decision, FDA approves a CRISPR-based medicine for treatment of sickle cell diseaseThe FDA has approved the world’s first medicine based on CRISPR gene-editing technology, a groundbreaking treatment for sickle cell disease.
It's been a long time coming...
Today is both Taylor Swift's birthday & the day I get to share the story of Shelby, a 7 (now 8) year old who's in the midst of a year+ "one-time" #genetherapy that will likely cure her #betathalassemia.
Don't miss the Taylor & Emily "The Space Gal" Calandrelli mentions, Shelby's budding #YouTube career, or how Sour Patch Kids are important for gene and #celltherapy:
https://www.statnews.com/2023/12/13/gene-therapy-zynteglo-bluebird-beta-thalassemia/
STAT · Gene therapy offered this 7-year-old freedom. The price: a grueling yearFor a 7-year-old girl, a gene therapy for beta thalassemia offered freedom. The price: a grueling year.