My hopes for the future of sickle cell care and treatment

It’s the season for new beginnings and expanding on our past successes. I’m grateful to see another year; it’s a blessing and a privilege. In remembrance of those who didn’t make it into the new year, it’s essential to appreciate what they gave us and how they spent their time on Earth. The new year is also a time to be intentional about pursuing our hopes and dreams.

On a personal level, I’ve set physical, mental, spiritual, and financial goals for myself and added them to my vision board. It may sound cliche, but this year, I plan to excel more than ever — I’m putting it out there. As a sickle cell patient who’s part of the disease community, I’m excited for what’s to come.

Raising awareness will always be on my annual to-do list, but I endeavor to be more vocal this year. There’s always more I can give or share. I encourage you to find ways to share your own story in 2024.

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September 8, 2023 Columns by Mary Shaniqua

How I find the silver lining while living with sickle cell disease

Making progress

Last November, the U.K. approved Casgevy (exagamglogene autotemcel), a potentially curative gene therapy, for some sickle cell patients. Then, in December, the U.S. Food and Drug Administration approved Casgevy as well as Lyfgenia (lovotibeglogene autotemcel), meaning we now have two gene therapies.

I write that last part with a bit of sarcasm, as it’s still mind-boggling to me how few sickle cell treatment options are available. However, I’m also optimistic because we are seeing the first steps toward more effective and accessible treatments for all.

This year, I want to see an increase in new therapies and greater investment in sickle cell research. The approval of gene therapies is exciting, but it’s imperative that the progress continues.

In addition, I hope to see an increase in holistic approaches to sickle cell management. The disease affects patients differently, so each individual requires a unique and tailored treatment plan. We must shift away from a one-size-fits-all approach to care.

I also want to see healthcare providers and patients share more information. My hospital in the U.K. recently adopted electronic patient records, which means I can readily access my bloodwork, protocols, and appointments. Hopefully this will result in fewer instances of hospitals being unable or unequipped to treat patients, as our care plans are now easily accessible.

Finally, I would love, as always, to see more blood donors. This past year, I saw many different methods used to raise awareness about sickle cell and encourage communities to give blood, but the job isn’t done. There will always be patients who need blood donations, including ones who have difficulty accessing the right type of blood.

To those fantastic individuals who donated blood last year, please keep that same energy going. For those who thought about it but never got a chance to do so, make 2024 your year and save a life.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.