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What do you do post liver transplant for insurance when under 65?
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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@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.
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1 Reaction@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?
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1 Reaction@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.
My 24 y.o. daughter had a sudden unexpected liver transplant last year. She will be on my insurance until she is 26. She is having a very hard time, but her liver team is happy with her progress. She has very overwhelming side effects and had to stop working. Again, her team believes her side effects could improve over time and they still believe there's a good chance should could at some point resume full-time work. Among other things, we are all concerned with how she will pay for health insurance once she is 26. The liver transplant social worker has told us not to worry about it yet. My question is this: I'm currently making an estate plan. I know there's no easy answer to this but: would it be a good idea to name my daughter as the beneficiary of a $100k brokerage account with the intention that all the funds would be used to pay for her health insurance moving forward? I know there are many variables, ie: how long I will live. But assume I die soon: is a liver transplant recipient better off financially having a $100k brokerage account dedicated to pay for health insurance, OR is it better for the transplant recipient to NOT have that money in their name so that they can remain eligible for Medicaid-covered insurance? I know not everyone has the option of having a fund like this, but I have no idea if it's worth sacrificing possible access to Medicaid by setting up a plan like that. Any thoughts would be most appreciated.
Hi, @edrex, and welcome to Connect. I am happy that your daughter's transplant team is giving you positive comments about her future recovery. Your daughter's future is understandably a top concern for you. On Connect, we are patients and not professionals in any field, however we do share experiences.
I want to suggest that you contact a financial advisor or someone who has experience and is knowledgable about the kind if financial issues that you are considering. One possibity is to ask your daughter's transplant team to put you in contact with the hospitals financial advisers who deal with these kinds of issues and questions on a routine basis.
Thank you. I will try again. So far they have told us it's too early to worry about.