[Congressional Record (Bound Edition), Volume 163 (2017), Part 3]
[Extensions of Remarks]
[Page 4470]
[From the U.S. Government Publishing Office, www.gpo.gov]




 TESTIMONY OF ALEXIS DECECCHI ON THE POSITIVE IMPACT OF THE AFFORDABLE 
                                CARE ACT

                                 ______
                                 

                          HON. ROSA L. DeLAURO

                             of connecticut

                    in the house of representatives

                         Monday, March 20, 2017

  Ms. DeLAURO. Mr. Speaker, it is with great pride that I enter the 
powerful words of my constituent, Alexis Dececchi, who supports the 
Affordable Care Act and the protections it provides our most vulnerable 
citizens.

       ``Hi, my name is Alexis Dececchi. I want to thank 
     Congresswoman DeLauro for taking the time out of her busy 
     schedule to gather us here so we can tell our stories about 
     the ACA. I would not be standing here today if it weren't for 
     the ACA. I think everyone who has developed a major health 
     problem remembers ``that day''-- the day everything changed. 
     For me, that day was December 28th, 2012. I refer to this as 
     my second birthday.
       During the night of the 28th, my body mounted an 
     inflammatory autoimmune attack against my nervous system, 
     causing me to suffer brain damage. When I awoke, portions of 
     my memory, processing, and visual system had been 
     compromised. Months of fearful confusion followed until the 
     cause was discovered: I had a cellular immunodeficiency 
     affecting my natural killer cells. This caused me to be more 
     susceptible to viral and fungal infections. This 
     susceptibility also caused autoimmune inflammation in my 
     nervous system and brain.
       Without the protection of the ACA, I would be defined as 
     having a pre-existing condition, and be subject to expensive, 
     high-risk insurance pools, or potentially be uninsured. 
     Without insurance, I would be unable to afford the 
     experimental antivirals and the biweekly infusions of 
     immunoglobulin that I need, which currently cost over $8000 
     every month. A reinstatement of lifetime policy caps would 
     also endanger my access to this treatment.
       Since receiving my infusions, I have seen improvements in 
     my condition. I have fewer seizures and cognitive issues, and 
     I've regained some of my physical strength. This year, I was 
     finally able to return to the workforce and hold down a part-
     time job. None of this would be possible for me without the 
     ACA. Though I have improved, there is no cure for my 
     condition, and I will require these treatments indefinitely. 
     Without them, I would start to backslide physically and 
     develop dementia-like symptoms.
       The chronic illness and disability community is one of the 
     country's biggest minority groups, but one of the most 
     overlooked. Because of the nature of our disabilities, it has 
     been hard for us to organize, especially if each day is a 
     fight for survival. We should have the equal rights and 
     protections of other minority groups in this country. Right 
     now, our current administration is fighting over policies and 
     ideals, but what we are fighting for is survival. That is a 
     very different type of struggle and one that we cannot afford 
     to lose. The ACA was a step in the right direction for 
     millions of Americans. We can't take a step back. I want to 
     continue to move forward in my life, and I want to do the 
     same for other chronically ill individuals. We need to stand 
     together, and stand with, our representatives who understand 
     that healthcare is a right, not a privilege.''

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