[Tina-D]

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.

[Tina-D]

Denied again! This time because I use a wheelchair. My doctor will appeal again.
Oh, I heard the same as janee…enzymes will go up

[Tina-D]

How is everyone doing with Skyclarys? I’m still trying to get Cigna to cover it. Reata was no help.

[Tina-D]

Are you still taking Idebenone?

[Tina-D]

It’s not available yet. And I won’t be on it because Cigna will not

help pay the $400,000/year cost. And Reata said my income (actually my husband’s) is too high.

[Tina-D]

I’ve stopped looking. They are too expensive, too big, too loud (road noise) and would not increase my independence.

[Tina-D]

I second Jeff’s reply.  And Karina’s story sounds like mine.

[Tina-D]

I have had problems with many “accessible” bathroom. Even in doctor’s offices. The ADA law has lots of loopholes but at least the US has one.

 

[Tina-D]

I did reach out. The Husband apologized to my husband but not to me. Knowing him, that’s all I’ll get.

[Tina-D]

I used Charmin’s Sit or Squat app to find family restrooms. I went to check the name and the app no longer functions. So now I need to ask if anyone can recommend a new one. It’s very helpful on road trips.

 

[Tina-D]

After over 25 years of friendship my closest friend and her husband decided not to invite me to her birthday party. I found out about it after I saw photos on social media. They say it’s because I don’t drink or dance. I think it is  because I am in a wheelchair. Over the years we have been to wine-tasting parties, pool parties, Oktoberfest parties… They are not upset but will not talk to me. I think they should have invited me, I would have gone just to get out. What else should I do or should I wait for them to reach out?

[Tina-D]

I had scoliosis surgery 10 years before my FA diagnosis. No problems

[Tina-D]

I had minivans until I stopped driving. I had to drive around my kids. Then we bought a 4-door I could transfer to. Now we may go back to an accessible minivan. I can no longer lift my legs enough to get in a truck or SUV. I’m short, only 5’2″. It took me 30 years to get to this point. Your son will let you know when his Jeep is too much.

[Tina-D]

Well that didn’t work. Try:

Christina D started the topic Insurance in the forum Assistive Device Usage

[Tina-D]

Read my adventure:

 

https://friedreichsataxianews.com/forums/forums/topic/insurance/#post-18711

Insurance

[Tina-D]

GEORGIA!!!!!!!!!!!!!!!!!!!!!!!!!!

[Tina-D]

My chair is here! Only took 7, yes seven, months! Now we’ll see how long insurance takes. Because even though I have to pay 20% I had to pay $2300 before NuMotion would order the chair.  And that better not be 20%!

 

[Tina-D]

I used to tell people I was a Wheeble too!

Or having FA was like playing the game where you had to spin around with a bat/broom touching your forehead, stand up and walk straight. It’s fun to watch but not to live with.

[Tina-D]

This is my reminder for today!

[Tina-D]

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

[Tina-D]

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

[Tina-D]

I don’t mean to sound rude but I can’t think of another way to ask but, is your wife ambulatory? Cigna denied my claim because I use a wheelchair. No heart problems or diabetes.

[Tina-D]

No luck going through HR. Cigna told HR medication could only be added after my doctor answers their questions. He did. Cigna still said no.

[Tina-D]

I can’t believe Cigna can cover a drug for one person and not everyone! I’ll have my husband call HR.