Transplants and Down Syndrome
This fact makes me incredibly angry. When we were first discussing AJ’s diagnosis, so many people would ask us why he couldn’t “just do a heart transplant”
And the short answer was - because Iowa isn’t one of the few states that protect against this kind of discrimination.
In fact - the only states that do are listed below:
California (AB 2861) (1996)
New Jersey (SB1456) (2013)
Maryland (SB 792) (2015)
Massachusetts (Chapter 328) (2016)
Oregon (HB 2839) (2017)
Delaware (HB 21) (2017)
Kansas (HB 2343) (2018)
Ohio (HB 332) (2018)
Pennsylvania (Act 90) (2018)
Washington (HB 5405) (2019)
Louisiana (HB 143) (2019)
Indiana (SB 112) (2019)
Notice something a out those? Most of those states only adopted those protections in the last few years. At the time AJ was born, there were only three states on this list.
Now - I’m AJs case there’s would have likely been other contributing factors, like his pulmonary hypertension, but the fact is that nobody even looked that far. Once he had the official trisomy 21 diagnosis, our options for treatment, or at least the manner in which people talked to us about our options, shifted.
There is definitely work left to do in this area. I don’t believe that a persons diagnosis of Down syndrome alone makes them less worthy of receiving care or support than anyone else, and will continue to push for better protection from discrimination and awareness.