An Open Letter to Rep. Andy Harris

The letter below was read at the healthcare rally outside of the Salisbury office of Representative Andy Harris. Michele Gregory is the Communication and Media Committee Chair for Lower Shore Progressive Caucus. 
Dear Mr. Harris,

I’m a constituent of yours. My name is Michele Gregory. I’ve lived in Wicomico County for most of my adult life and I would like to tell you the story of my stepson. 

His father, Christopher, and I married just before his 3rd birthday. Nicholas, my stepson, had been born with global developmental delays, including apraxia and gross and fine motor delays. He didn’t walk until he was two and a half. He lived with his birth mother at the time and it was a bad situation for him. We filed for custody when he was 7, and after a series of traumatic events during the custody battle, child protective services intervened and placed him with us on his 9th birthday. We officially became his full time custodial residence on Halloween of 2003.  For the sake of brevity, I am leaving out a lot of horrible details. 

Nicholas has been a recipient of Medicaid and Social Security for most of his life. He is now about to turn 23 and life has never gotten easier for him. At 18 he began having symptoms of another neurological problem and after six months without finding answers, he had a tonic-clonic (or grand mal) seizure that left him hospitalized for several days and incapacitated for many months. Dozens of daily seizures became our way of life. His favorite activity, eating, became a gauntlet, triggering the worst of them. We tried multiple medications and even surgery, only to bring them down to a dozen or so a day. In the past year, he’s been hospitalized 3 times for aspiration pneumonia, landing us in ICU or just a step below that each time. The doctors have made clear that without getting his seizures under control, there is a very real and present possibility that the next time might be the one that takes him from us. 

Each of these hospital stays, not counting his outpatient surgeries, has run in the neighborhood of $50,000. His monthly medications without insurance would be approximately $3900 a month according to my pharmacy. My husband and I work very hard, my husband for a cable provider, and I am a small business owner here in Salisbury. Together we still would not be able to afford his medications. The next time he is hospitalized, and he absolutely would be within days of stopping his medications, we would have to choose between losing everything we have and letting our son die. Repealing the ACA and gutting Medicaid would be a death sentence to him. And to us.

My husband had a stroke during surgery at the age of 32. He takes multiple medications daily to keep him alive and well. I have severe arthritis from genetics and sport injuries that without medication is completely debilitating and would mean I could no longer work or run my business. My daughter has a life threatening food allergy that requires an epipen. By repealing the ACA, you would bring back the pre-existing conditions clause that would mean none of us would be covered. 

As a mother and a wife, I am begging you to not kill my family. Because what you are trying to do will in no uncertain terms do exactly that. You will kill my husband and the  children I have raised and loved more than life itself.  I am a walking testament to the ACA. Please don’t end that and kill my children.
 
Sincerely,
Michele Gregory
Salisbury, MD