The Cost of Being Chronically Ill in America MD Monthly May 16, 2017 Medical Innovations By: Fiona Cunningham When we consider that 117 million Americans with serious or chronic illness may not have access to effective treatments, we need take a step back and realize that a downturn in health can happen in a blink of an eye. When traditional methods of treatment fail us, what are we left to do? As a mother of a chronically ill child, I am familiar with the struggles, the difficult decisions and the real cost of being chronically ill in America, because this was the life my daughter lived from birth. On average, it costs millions of dollars each year just to keep my daughter alive. She spent most of her life in hospitals due to systemic juvenile idiopathic arthritis (SJIA). She received world-class medical care from her team of eight medical specialists in Houston, Texas and the National Institutes of Health (NIH) in Maryland. By age 19, Sarah was taking 23 maintenance medications daily, plus high-dose chemotherapy. But the medications kept her alive, though her quality of life was greatly diminished and she was bed-bound and hospitalized. Her doctors predicted she would not live to see age 25. Because her body could not absorb nutrients, she received long-term TPN (Total Parenteral Nutrition) and lipids for many years. Due to the life-threatening side effects associated with receiving long-term nutrition intravenously, by 2012, her only option was 24/7 tube feeding directly into her stomach. She weighed only 82 pounds, and the tube feedings could not sustain her weight. It cost approximately $1,200 per day, or almost half a million dollars each year, to feed her. She was continually hospitalized in the ICU, or the critical care unit. From birth, her health insurance deductible was usually met by mid-January each year. In 2014, both of our lives changed thanks to Celltex Therapeutics, a Houston-based biotechnology firm, whose adult stem cell technology proved to be a lifesaver for Sarah. After extensive research, we decided to work with Celltex’s team of scientists, who grew my daughter’s own stem cells in their Houston laboratory and expanded them to the hundreds of millions, and then cryogenically banked for future use. While Celltex’s lab is registered with the FDA, adult stem cell therapy is not approved by the FDA to treat my daughter; therefore, no doctor in the United States is permitted to administer her cells back into her body. “Her quality of life has changed dramatically for the better, and living in hospitals is a thing of the past.” Though her cells were processed and banked in Houston, her cells would have to be shipped to a private hospital in Cancun, and we would need to travel by plane, for therapy. For anyone living with chronic or terminal illness, travel is very difficult, if not impossible. Sarah made the decision to travel to Cancun, where her adult stem cells were infused into her bloodstream through a simple IV. It was a major trip for Sarah to take for such a simple procedure. But that was three years ago. The changes she has experienced since then cannot be measured in words, and she has astounded her doctors in the Texas Medical Center. Her quality of life has changed dramatically for the better, and living in hospitals is a thing of the past. She has a life now – and better yet, she has a future. She has not been hospitalized since receiving her own stem cells and lives a healthy life, which includes showjumping her horse and attending college. She turned 25 this past October and is planning a May 2017 wedding to a wonderful young man. For the first time ever, we had not met Sarah’s health insurance deductible at the end of the year in December, 2016. Instead of taking 23 daily medications, she now takes eight medications at lowered doses and is no longer immune suppressed. If one looks at the option of stem cell therapy just from an economic standpoint, no longer is Sarah subject to the stress and fear of crippling medical expenses. This month, Sarah will be Texas Congressman Pete Olson’s guest of honor at the upcoming State of the Union. My hope is that through my daughter’s journey, our country will begin to see how Celltex’s procedure of using our own stem cells can help our medical community in their daily effort to save lives. Fiona Cunningham is a Houston resident and mother of an autologous stem cell recipient. She and her daughter Sarah will attend the State of the Union as a special guest of Texas Congressman Pete Olson (R).