M E D I C A L L Y

HElP RACHAEL GET A LEG! FIGHT UNITEDHEALTH!

I am asking for your help. I don't post much but this Jacksonville Florida family who are dear friends deserve some justice. This is Rachael's story by me. Please take some time to read and share! Jodi Smith Goodson

Adding the denial reasons and contract provisions from UnitedHealth. Are we offended yet?

Does it make sense one would ever have to ask whether a prosthetic leg or wheelchair is medically necessary for a healthy 25 year old amputee? In what universe would we come to this conclusion? Unfortunately, under the affordable healthcare act through its administrator UnitedHealthcare, this absurdity is a reality. Or perhaps it’s a nightmare for a family in Jacksonville, FL whose daughter was denied these life necessities.

Let me tell you her story. Sometimes optics are more powerful than facts. And sometimes facts speak for themselves. What are the facts on the effectiveness of affordable healthcare? It’s hard to know – the facts are drowned out by the optics. But at the end of the day, what we can agree on is that facts matter. What we say matters. Words matter because words, whether spoken or written, all have meaning and impact. Do you believe that the words of the healthcare.gov have meaning? Do you believe those words matter?

Healthcare.gov proudly displays “The Affordable Care Act put in place comprehensive health insurance reforms that have improved access, affordability, and quality in health care for Americans.” Do you believe these words? The Goodson family from Jacksonville, Florida doesn’t believe these words. I imagine many other families across the country don’t believe these words. Do you want to hear a story with facts, with words that matter? Are you willing to listen to words that have meaning? This is not a fairytale or a story about mythical little people. This is a story with real people and real facts. A story about a courageous young lady with an amputated leg who has been denied a wheelchair and a prosthetic leg because she has not proven medical necessity or an activity level that entitles her to these things. This story is a factual one, about a family abused by a healthcare system designed to help them. All at the affordable price of over $1,000 per month.

Rachael Goodson is 25 years old. She has spent her life suffering from neurofibromatosis, type 1 with chronic edema. Neurofibromatosis type 1 is a condition characterized by changes in skin coloring and the growth of tumors along nerves in the skin, brain and other parts of the body. The signs and symptoms of this condition vary among affected people. For Rachael, she developed an extraordinary tumor on her leg throughout her adolescence. Although she was an avid dancer, eventually the tumor became restrictive and her physical activity dwindled. The tumor became so large that it prevented her from wearing shoes and it dragged along the ground.

On July 23, 2008, Rachael underwent debulking surgery to reduce the size of her tumor and provide her with an improvement in the quality of her life. The surgery was excruciating and not designed to give Rachael some “princess” view of a perfect leg – it was designed to give her relief; to allow her to wear two matching shoes and to live an active life. The surgery was not a cure. There is no cure for this disease.
Unfortunately, Rachael’s tumor regrew at an alarming pace, developed chronic edema, causing pain and redness. Rachael was again faced with a diminished quality of life and left without options. Debulking surgery a second time was not an option – particularly with the regrowth and size of the tumor. Her doctor’s conclusion at this point – Rachel was suffering from symptomatic neurofibromatosis, deformity with dysfunctional right lower leg with lymphedema. Her doctor’s conclusion – her only relief could come from amputation. After consultation with her doctors, Rachael made the courageous decision to amputate her affected leg below the knee. June 6, 2016 Rachael’s affected leg was amputated. She handled the procedure with a courage and optimism most people can only hope to have. She committed to rehabilitation and the most positive outlook.

So what do we do when a courageous young woman makes a hard decision, even it’s the right decision? Under affordable healthcare through UnitedHealth, we do all the wrong things. We deny Rachael a wheelchair. We deny Rachael a prosthetic leg. We use our words to convey that Rachael has failed to prove that a wheelchair and prosthetic for an amputee are not medical necessities. We use our words in Peer to Peer meetings to conclude that Rachael has not effectively shown that her level of activity justifies approval of a prosthetic. We use words that have meaning to a vibrant 25 year old young woman that she is not worthy of our compassion, that she’s not entitled to even the most basic human dignity, that we don’t believe that her life and courageous decision are enough to warrant a prosthetic.
Words matter. Words have meaning. Those words have meaning to Rachael. They mean she is terrified that she will have no means to walk. That she will have no means to work. That she will have no means to live. Is the meaning of our healthcare reform to say that administration is more important than human decency? Have we used our words wisely? Or have we surrendered all compassion and decency for a box on a piece of paper that has no name, no face and no recognition that the decisions we make have emotional impacts on a person, not just a condition.

I’m using my words for a friend. My words have meaning. I’ve used them to tell you a story. Do you understand the importance of these words? Are you listening? Do you hear our plea? Can you do the right thing and use your words that matter?
Regards,
Sheryl Newman