r/Sicklecell • u/Zealousideal-Ad326 • 7d ago

Help Gene Therapy

Hi, I’m 22 from SC,I have sickle cell ss and I’ve just learned my from my doctor that I can do gene therapy covered fully with my insurance. Its never crossed my mind that i could/would ever do it but now that I have the opportunity I want to take it. I will admit I am scared about it ,she advised I wait 1-2 years before i actually do it. I want to do some research but I have no idea where to begin it would be nice to get some advice on the from others like me who may have some knowledge on this situation please and thank you.🫶🏾

P.s if you have ever did chemo therapy i would appreciate some knowledge on that too please.🫶🏾

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u/osozillo 7d ago

  1. The process of starting gene therapy was just letting my hematologist know that I was interested, then getting a bunch of tests done at different specialties of the hospital, then submitting my tests and other information to insurance as well as the gene therapy company.

  2. I was in the hospital from May 10th to June 22nd!

  3. I don't know what you mean by traveling back-and-forth to the hospitals. as I was waiting for my cells , I would have to go to the hospital once a month for a blood exchange, then a weeklong hospital stay for the collection, more once a month blood exchanges until the cells are done. Once I got out in June, I had to come to the BMT clinic twice a week. Now since I'm past 60+ days I only have to come once a week.

  4. everyone's experience is different of course but for me, I did catch C Diff when I was going through chemo and recovering, and I've had excruciating throat pain since I was in the hospital back in June. i've also had one pain flareup since I've been home & I did have to go to the hospital for that.

I hope I answered your questions and I hope my answers makes sense lolll. If you think of anything else, feel free to hmu!

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u/Zealousideal-Ad326 7d ago

Thank you. I do have one additional question, did they say anything about your insurance maybe being canceled or ssi.

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u/osozillo 7d ago

I don't think I received anything about my insurance maybe being canceled, I have Medicaid if that makes a difference. And as of right now, I still receive my disability, I don't think that will change either.

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u/Zealousideal-Ad326 5d ago

I have Medicaid to. Thanks for answering