What do you do post liver transplant for insurance when under 65?

Posted by katebw @katebw, Jun 14 1:46pm

I am 2.5 years post liver transplant and have had few complications in the aftermath so far. I’m back to work as a clinical social worker on an outreach team. I am struggling to sort out health insurance recently. I live in MA where there is a Medicaid expansion (MA originated this expansion) so when I left my private insurance I was covered by MA Medicaid (MassHealth). Then Medicare kicked in with extra prescription drug coverage, then I lost my secondary insurance. Now I’m sorting what to do next. What do you do about health insurance post transplant, and how do you cope with out of pocket costs? I have middle class income and expenses, some access to family help but I am widowed since age 40 so I count on my own earnings. I am 56. Thanks for any relatable experiences!

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Rosemary, Volunteer Mentor | @rosemarya | Jun 17 4:38pm

@katebw, I was already qualifued for medicare when i transplanted. I know that that does not help you at all. I hope that you will hear from other members soon. Is your transplant department able to provide any information? Or is anyone in the HR department where you work able to make suggestions?
I would like to tag @athenalee who is also a liver transplant to join this conversation. I know that she was also working and too young for medicare coverage.

katebw | @katebw | Jun 17 9:11pm

In reply to @rosemarya "@katebw, I was already qualifued for medicare when i transplanted. I know that that does not..." + (show)

@rosemarya first I have to express publicly how much I appreciate your kindness and thoughtfulness when we here express our worries. For the two plus years I’ve been involved here I am continually impressed by how you care. As for insurance my team which is MGH in Boston no longer has that council. The HR division of my agency is very helpful but my questions are so specific they cannot answer all of them. I’m looking for experiences about how people coped with health insurance with the need for ongoing medication and the unknowns out there with respect to scanning, other specialized care, etc. were you stressed at any point and how did you cope with that?

Colleen Young, Connect Director | @colleenyoung | Jun 19 9:17pm

In reply to @katebw "@rosemarya first I have to express publicly how much I appreciate your kindness and thoughtfulness when..." + (show)

@katebw, I recommend working with your transplant social worker. I recognize the irony of my suggestion since you yourself are a clinical social worker. So perhaps you've already explored this.

As you likely know, transplant social workers help people connect to the resources they need to find practical help, including finances, navigating prescription assistance programs, and insurance questions.

I wonder if there is also useful information for you in this blog post by a Mayo Clinic transplant pharmacist:
- How To Save Money on Your Medications https://connect.mayoclinic.org/blog/transplant/newsfeed-post/how-to-save-money-on-your-medications/

I'm tagging @hello1234 to see if she has any experience to share regarding coverage post transplant or suggestions.

Kate, I can imagine the stress is hard to manage when you have the additional burden of coverage on top of needing specialized care.