JT Thomas is a senior at the University of Missouri and is studying biology and business. He spoke at an event hosted by KBIA and Missouri Health Talks at Café Berlin this past winter about organ transplantation.
JT was diagnosed with kidney failure at the age of 20, and he spoke about the struggles that still exist in the life of a kidney transplant recipient – even four and a half years post-transplant.
Missouri Health Talks gathers Missourians’ stories of access to healthcare in their own words. You can view more conversations at missourihealthtalks.org.
JT Thomas: So, I have had to really become my own advocate, my best advocates since my transplant because less than a year, or about a year after receiving my transplant, is whenever I moved down here to Colombia. So, there was a lot of communication that had to be take place between my transplant coordinators and being here at Mizzou.
Well, one thing about being recipient is the immunosuppressants that you have to take afterwards and the way that the current health care system is set up is that for recipient, you're only covered for 36 months under Medicare for those medications.
Well, the real question is, well, what happens after those three years? What do you tell the recipient who can't afford their medications?
“Hey, sorry, we can't do this.”
They end up losing that gift.
What do you tell the donor who just gave a piece of their self?
That “Hey, I'm sorry, time's up.”
And one of my big issues, also, is that, well, I'm 27 and I don't have a job that provides health care or insurance, or anything like that. So, I just kind of find my way.
So, there's this real gap between extending the care post-transplant. I think the main issue is they give that three year mark as a buffer or as a safe number because a transplant, you've probably heard it, “is a treatment and not a cure,” and no matter what you do – you could be taking your medications properly, you can be following the doctor's orders, you could be adhering to a regimen and it could still fail – and that's the thing about transplants is that, you know, there's no guarantee for the longevity of the organ. So, why put an unknown number, I guess, as far as the length of care?
But what I think would make a greater peace of mind for the procedure, or the donor and everyone involved, is if you were covered for the life of the transplant. Because I'm four and a half years post-transplant. Well, I'm still a year and a half on eligible for Medicare, but I still get barricades from Aetna. I've had services denied saying that Medicare is my primary insurance, but I haven't even been eligible for a year and a half.
So, my main thing, or something that needs to be addressed is that post-transplant care – because there's a lot of things that I should be worrying about more than can I afford to pay my medications?
Like, can I pass this evolution exam? Can I pass chemistry? Can I pass this? Can I find a date?