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Does Out of Network Mean Out of Luck? Help Me Say It Ain’t So!


I am Sarah Kuhl, a 31 year old nurse who works in breast oncology research. On November 9th, 2015, I visited my primary-care physician in Asheville about a recurring headache and dizziness. From that appointment, doctors found a rare, cancerous tumor called a chondrosarcoma on my skull, located on the petrous apex of my temporal bone. The tumor, which rests on my carotid artery—just millimeters away from my jugular vein and my facial and hearing nerve—is already destroying the surrounding bone.
Only about 300 chondrosarcomas of the skull base are diagnosed in the United States each year. Due to the rare occurrence of this, the first specialist I saw told me that treatment in North Carolina is not an option and sent me to Johns Hopkins in Baltimore. The tumor in my skull is so rare, that specialist told me that “This is the most complicated tumor you could possibly have”. I learned, that the experienced surgeon at Johns Hopkins has operated on only five of these tumors in his entire career.
Without surgery, the doctors told me the chondrosarcoma will kill me. They would like to perform the surgery this month. The common complications with this six-hour, high-risk surgery are daunting: intracranial pressure, blood clots and complete blockage of the jugular vein, cerebral spinal fluid leak, meningitis, brain abscess, hearing loss, and facial paralysis. I will need radiation and/or chemotherapy afterward.
The tumor is still small, which gives me a better prognosis, but makes it more difficult to get to. Generally, people with chondrosarcomas have a poor prognosis, unless the tumor is in an extremity that can be amputated. Due to new complications, developing tumors, and abnormal blood work, further consultation with more experienced specialists is now required with MD Anderson Cancer Center in Houston, Texas on January 12th, 2016.
While these specialists give me some hope, it comes at a steep cost. Before the surgery can be performed, I must pay $10,000 upfront. Both Hopkins and MD Anderson Cancer Center are out of state and out of network of my health insurance providers. My health insurance will not cover any costs of treatment until I come up with that initial $10,000 fee. This is not including the costs for airline travel, lodging, and lost income.
This is money my family does not have. Our family has been on one income for five months and we have paid over $4,000 in copays. I am still working, but I have missed a lot of work, and our savings are depleted. We have been living on our credit cards, which are now maxed out.
Our daughter Emily just turned 10 years old and my husband, Eddie Turner, is a social worker who just started a new job. I know you may not know me, but people say I am a compassionate and caring person who has continually helped others in need, including animals. I have provided food and services to the homeless, supported and sheltered people and families in need, and fostered animals. I hope and feel that I have made a difference in people’s lives. It is startling to me now to find my family asking other people for emotional and financial support.
Without this surgery, I will not be here to be a mother to my precious daughter, or a wife to my supportive and loving husband. I will also not be here to fulfill my promise to my parents that they would never have to worry about being alone when they are older and need my help. What I fear most is not death, however, but leaving Emily to grow into young womanhood without her mother, and Eddie to be a single dad. It is agony for me to know that Emily would not have her mother there as advocate and supporter to share all the wonderful events and joys life can offer.
This is difficult, but I am willing to fight for my life. Life is a precious thing. Whatever you can do to support me and my family is profoundly appreciated. Please share this plea with your family and friends.
With heartfelt gratitude,
Sarah Kuhl


I am Sarah Kuhl, a 31 year old nurse who works in breast oncology research. On November 9th, 2015, I visited my primary-care physician in Asheville about a recurring headache and dizziness. From that appointment, doctors found a rare, cancerous tumor called a chondrosarcoma on my skull, located on the petrous apex of my temporal bone. The tumor, which rests on my carotid artery—just millimeters away from my jugular vein and my facial and hearing nerve—is already destroying the surrounding bone.
Only about 300 chondrosarcomas of the skull base are diagnosed in the United States each year. Due to the rare occurrence of this, the first specialist I saw told me that treatment in North Carolina is not an option and sent me to Johns Hopkins in Baltimore. The tumor in my skull is so rare, that specialist told me that “This is the most complicated tumor you could possibly have”. I learned, that the experienced surgeon at Johns Hopkins has operated on only five of these tumors in his entire career.
Without surgery, the doctors told me the chondrosarcoma will kill me. They would like to perform the surgery this month. The common complications with this six-hour, high-risk surgery are daunting: intracranial pressure, blood clots and complete blockage of the jugular vein, cerebral spinal fluid leak, meningitis, brain abscess, hearing loss, and facial paralysis. I will need radiation and/or chemotherapy afterward.
The tumor is still small, which gives me a better prognosis, but makes it more difficult to get to. Generally, people with chondrosarcomas have a poor prognosis, unless the tumor is in an extremity that can be amputated. Due to new complications, developing tumors, and abnormal blood work, further consultation with more experienced specialists is now required with MD Anderson Cancer Center in Houston, Texas on January 12th, 2016.
While these specialists give me some hope, it comes at a steep cost. Before the surgery can be performed, I must pay $10,000 upfront. Both Hopkins and MD Anderson Cancer Center are out of state and out of network of my health insurance providers. My health insurance will not cover any costs of treatment until I come up with that initial $10,000 fee. This is not including the costs for airline travel, lodging, and lost income.
This is money my family does not have. Our family has been on one income for five months and we have paid over $4,000 in copays. I am still working, but I have missed a lot of work, and our savings are depleted. We have been living on our credit cards, which are now maxed out.
Our daughter Emily just turned 10 years old and my husband, Eddie Turner, is a social worker who just started a new job. I know you may not know me, but people say I am a compassionate and caring person who has continually helped others in need, including animals. I have provided food and services to the homeless, supported and sheltered people and families in need, and fostered animals. I hope and feel that I have made a difference in people’s lives. It is startling to me now to find my family asking other people for emotional and financial support.
Without this surgery, I will not be here to be a mother to my precious daughter, or a wife to my supportive and loving husband. I will also not be here to fulfill my promise to my parents that they would never have to worry about being alone when they are older and need my help. What I fear most is not death, however, but leaving Emily to grow into young womanhood without her mother, and Eddie to be a single dad. It is agony for me to know that Emily would not have her mother there as advocate and supporter to share all the wonderful events and joys life can offer.
This is difficult, but I am willing to fight for my life. Life is a precious thing. Whatever you can do to support me and my family is profoundly appreciated. Please share this plea with your family and friends.
With heartfelt gratitude,
Sarah Kuhl
Organizer
Sarah Kuhl
Organizer
Asheville, NC