So far Mark’s medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never know year after year if it will be or not and January is always stressful not knowing if will be or not. Mark is an 18 year tonsil cancer survivor. He was 43 and was extremely healthy–he never smoked. His cancer spread to his bones in 2002, the oncologist gave him 6 months to live. He battled tumor after tumor from 2002 – 2007. All through this, he owned and operated his own small retail jewelry store. In 2007, his doctors at Johns Hopkins tried to help with the tight stricture that developed in his esophagus caused from the cancer, surgery and radiation. The procedure failed and he hasn’t even been able to take a sip water since April 15, 2008. Ironically his cancer went into remission for the first time when he became 100% tube fed for his only source of nutrition. He has only been on Nestle’s Peptamin 1.5 and has tolerated it well and has remained in remission since being on it. It we would have to pay for it on our own it would cost us $20,000 a year. So far it has been covered, usually after the deductible and out of pocket maximum is met, which is $7,450 this year, which he would have hit by April. The doctors don’t want to change a thing with Mark’s dietary needs because they can’t explain why he has been able to remain in remission so long. Mark receives his health insurance through the ACA, which is also stressful not knowing if that will survive and if pre-existing conditions will come back into the picture. Mark permanently closed his store on July 31, 2018 to take care of his ongoing health needs. Passing the Medical Nutrition Equity Act would be a relief for us not worrying whether Mark’s medical nutrition would be covered or not.
- Lyndsee, Age 13
- Marisa, Age 10