• Skyclarys Oct 2023

    Posted by Tina-D on October 21, 2023 at 11:16 am

    I’m gathering data for another appeal to Cigna. My HR dept, Reata, Dr were no help.
    This is what I found:
    Of the 40 people active on this page, only 13 responded.
    6 are on Medicare, 5 did not list their Insurance, 2 have Private Insurance.
    Of the 10 on Skyclaris, most saw some improve but in different ways – speech, energy, movement.

    Can anyone else share their story so I have more data? No names will be used.

    HeatherMac replied 6 months ago 12 Members · 16 Replies
  • 16 Replies
  • Janaye nicol

    Member
    October 22, 2023 at 10:28 pm

    I am in a wheelchair full time and on skyclarys. I have seen some improvement in speech and coordination. I don’t have any heart problems or diabetes. I sent you a message on here

  • TommyD

    Member
    October 24, 2023 at 2:40 pm

    I’m sorry to hear of your struggles. I had express scripts as my pharmacy and to say it nicely it was painful to get medication approved. I went thru 5 denials to many phone calls to remember many trips to NYC for additional tests but finally was approved. The staff at Columbia Presbyterian were instrumental in getting it approved. The key to approval is a very persistent doctor. That being said it still took 3 months dozens of calls and much documentation. I called reata reach, express scripts, and Columbia 2-3X a week for months although it sounds crazy that’s what it took. Best of luck

    • Tina-D

      Member
      October 25, 2023 at 9:31 am

      My insurance uses Express Scripts too! Maybe they’re the problem. I’ll keep bugging them!

  • TommyD

    Member
    October 25, 2023 at 10:54 am

    My advice fight every issue as a single issue. I believe they try to overwhelm you and frustrate you to the point of giving up. Have you taken a “ modified Friedreichs ataxia rating scale” test. Once I took that test express scripts ran out of excuses. The test is pretty involved given by neurologist and you must score 20 or greater. If you haven’t taken it I would definitely ask your doctor. 2 days after test I was approved.

  • Carmen

    Member
    October 26, 2023 at 2:17 pm

    My husband was just approved for Skyclaris. We have United Healthcare through his employer. We were told it would be an $85/month copay with Reata will help with.

  • Fatii

    Member
    November 3, 2023 at 4:18 pm

    My sister and I were approved. I have Medicare/Fidelis. She has straight Medicaid. Try contacting Reata Reach to see what you can do.

  • Dylan Mohart

    Member
    November 8, 2023 at 11:46 am

    Do you know when <b style=”font-family: inherit; font-size: inherit; -webkit-text-size-adjust: 100%;”>Skyclarys will be available in Canada?

  • Dylan Mohart

    Member
    November 8, 2023 at 2:32 pm

    Does anyone know when skyclarys will be available in Canada?

    • HeatherMac

      Member
      November 22, 2023 at 10:51 am

      I am looking for this info as well. I don’t think it is. We need to get it here.

      If us Canadians can get together and push for the trials here. More movement will happen with greater number of people

  • Gina Hannah

    Member
    November 9, 2023 at 2:24 pm

    Hi – I have tried to respond in the past but the forum page would not accept my response. My husband has FA, diagnosed via genetic testing. It is late onset – he didn’t show symptoms until his 50s. He was able to get the medication through Reata’s program and his insurance, Blue Cross Federal for federal employees. He started the medication in August and doesn’t have to pay any copay. We haven’t noticed any major improvements, but his decline isn’t rapid either.

  • Mel

    Member
    November 9, 2023 at 5:30 pm

    My daughter is 16. Started taking medication July 8. She stopped it about 3 weeks ago. We felt her progression had gotten much worse while on it. She also was having a lot of mood issues. Her energy and mood swings have since gotten better.

    Melissa

    Cecilia 16 FA

  • Christine

    Member
    November 15, 2023 at 6:27 pm

    Sorry, my son is newly diagnosed and only 15. We were told no off label prescribing. He has to wait, but we have private insurance.

  • Tina-D

    Member
    November 17, 2023 at 9:16 am

    Now that I have 2 denial letters from Cigna Reata Reach will try again. From what I’ve read about Skyclarys it, like FA, affects everyone differently.

  • MQB

    Member
    November 17, 2023 at 11:32 am

    I also have Cigna, I started on Skyclarys in July but in October Cigna required another prior authorization and after an appeal and numerous phone calls, it is still being denied. I got a letter from Cigna saying, because I’m not ambulatory, it’s denied. No where in the pre-approval did it say that you can’t be a wheelchair user!! After 3 months on Skyclarys my speech was much clearer and my hand co-ordination was improving. I’m so disappointed with Cigna but I’m not giving up on trying to get the medication. I’m almost 60 years old and I waited a long time for the development of the first and only treatment for FA. I do not expect to be miraculously cured, but with exercise and a healthy diet, I had hoped that being on Skyclarys would at least slow down any further progression. I will continue to call Cigna every few days and let you know if I have any success. God Bless, Mary

    • Tina-D

      Member
      November 21, 2023 at 4:38 pm

      Well Cigna will hear from both of us. Reata Reach will not help me with them.

  • Rotel

    Member
    November 21, 2023 at 4:53 pm

    I have WellPoint Medicaid in Texas but I’m not on the medication yet . I am scheduled to see the neurologist in January where we’ll hopefully get the paperwork submitted for approval. I hope you are able to get it too.

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