I Had a Kidney Transplant, and the AHCA Would Cause Me Significant Financial Troubles
Almost three years ago, I had a kidney transplant that saved my life after living with chronic kidney disease for 35 years. The American Health Care Act (AHCA), which was just passed by the House and is going to move on to the Senate, includes organ transplants on the list of pre-existing conditions. The list also includes:
- Kidney disease (no one can guarantee that the disease I had, Chronic Membranous Glomerulonephritis, won’t come back)
- Arthritis, which I have everywhere, including my spine (side effect of multiple courses of Prednisone over 35 years)
- Hypertension (side effect of kidney disease)
- High cholesterol (side effect of kidney disease)
- Blood clot (I had one in my left calf years ago)
- COPD (a misdiagnosis because I had a large internal goiter that pushed against my trachea. The goiter was accidentally found on a baseline chest X-ray when I was in the hospital for the blood clot. The misdiagnosis remains on my record.)
- Anemia (side effect of kidney disease)
- Anorexia (side effect of kidney disease)
- Pregnancy (two, one live birth and one miscarriage that required a D and C)
- Thyroid issues (the goiter)
- Whatever else someone decides could be an issue. I had my tonsils out, I tested positive for TB at 21, I broke four toes when I was 10, and more. While the human body is an amazing thing, it is not infallible.
All of these pre-existing conditions aside, the most important pre-existing condition I have is “organ transplant.” Anyone who has had an organ transplant must see a doctor regularly and take anti-rejection drugs for the rest of their lives. The costs associated with these visits and medications are high.
Before my health insurance kicks in, my quarterly transplant clinic visits cost approximately $1,000 per visit (and I have to see other doctors in addition to going to the clinic). My monthly labs range from $800 to $1,400 (and I do some tests only a couple of times a year). My standard monthly drugs currently cost about $1,000. Oh, and my body tolerates generic anti-rejection drugs, which are much cheaper than the brand name. (One of my drugs costs me $10 instead of $120; the quarterly costs are $140.33 instead of $2,763.25.)
If the AHCA passes in the Senate, my new premiums could be as much as five times higher (or more) because a) I’m old (60) and b) I have preexisting conditions. I’d have to pay $8,000 to $10,000 a month or more just for my premiums. And depending on what those premiums cover, I could also end up paying another $4,000 or more a month for doctor visits, lab work, other tests, and medications.
High-risk pools are not an answer for people like me.
I know this because I was in a high-risk pool years ago, with its expensive premiums and lack of coverage for specific items (at least for some amount of time). At one point, I paid for my premiums for a year before I could stop paying out-of-pocket for anything related to my kidneys. And because my medications weren’t included, there was a seven-month period when we were paying over $4,000 a month just to keep me alive.
After we went through all of our savings, all of our retirement, and all of the equity in our house, we filed for bankruptcy.
Who makes enough money to afford $14,000 or more a month just for healthcare? And then makes enough to cover a mortgage, food, and other things like utilities, gas for the car, car insurance, etc.? I want all Senators and Representatives to understand that human lives are on the line with the AHCA and ask that you vote “no.”
#IAmAPreexistingCondition #IAmACitizen #IAmHuman
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Hi Char James-Tanny,
I know that my response to your initial post has come very late, and I’m sure the economic conditions have changed. However, I just want to comment that the way you use lived experience to encourage people to vote ‘no’ on the AHCA is very well done. It also calls to mind the urgent financial situation affecting people with disabilities and chronic illnesses, as well as those with pre-existing conditions.
In many cases, the health issues experienced cause an undue burden to these populations – a financial burden that many struggle to or cannot meet. According to the American Civil Liberties Union (ACLU), approximately 48% of the disability community lives on $15,000 per year or less; this puts nearly half living below the national poverty line. Concerning this figure, the question is not IF you’ll be below the poverty line, it’s a question of how much below it you will be.
Data from 2025 places the federal poverty line at $15,650 for one person alone; it rises to $21,150 for two. This means that disabled families may be even further below that line than is thought.
Considering that people with disabilities are disproportionately susceptible to varying degrees of poverty, the high cost of healthcare under the ACHA and legislation like it would be prohibitive for many. I really admire your dedication to advocating for votes against this proposal.
Keep on keeping on!