Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

The Donut Hole - And I'm gluten free. But seriously, middle class Medicare Woes .....


Sat, March 17, 2018 9:43 PM

My Crohns is severe enough that I am on disability.  We have had to private pay my insurance for two years, and I'm approaching Medicare eligibility.  (Never made sense to me that I could be identified as too ill to work yet not qualify for insurance.)


So here's the terrifying thing:

Humira is a Tier 5 medication and Pentasa is on only a few of the formularies.  Which means that I will be accountable for copays that literally mount in the thousands. 

We are a typical middle class family.  We have assets and savings so I don't qualify for Medicaid or assistance programs.  Don't get me wrong - I am very thankful for these gifts.  But who, really, can afford the equivelent of three mortgages for medication?

I'm seriously thinking of stopping my medicine, or changing up treatment.  But I'm also hopeful that there is someone out there who has walked this path and has some suggestions for me.  

I am beginning to feel the weight of the diagnosis again.  I went from working and productive to incapacitated.  I had thought I had reclaimed myself, and was no longer just a disease.  But these costs and the life changing impact of medication pricing is triggering those initial diagnosis feelings again.  


FPO bg415
Joined Mar 18, 2018

Related Topics

Treatment options decisio...
Author Image Bmineard1
Joined Nov 6, 2020

My son was diagnosed with crohns at 10yrs old, due....

read more

Biologics and scarring
Author Image chelsea95
Joined Sep 26, 2020

Hi there. Wondering if anyone has noticed somethin....

read more

insurance coverage
Author Image jan11
Joined Jan 16, 2022

Can anybody comment on how their medigap plan cove....

read more