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Horizon:BCBSNJ: Cover the transplant I need.

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UPDATE:

*I have an autoimmune disease (CIDP) that has forced me to leave my job, and is steadily taking away my ability to walk, drive, and to function.

*I have tried various treatments such as medication, steroids, intravenous infusions, and plasmapheresis (similar to dialysis) for over two years with no improvement, and over the past five months, serious decline.

*Autologuous Stem-Cell Transplantation uses MY OWN STEM CELLS. There is no donor and has nothing to do with embryonic stem cell research. Dr. Burt of Northwestern Memorial Hospital in Chicago has had an extremely high success rate working with other patients using this treatment.

 

Hi, I'm Alisha, a 32 year old wife and mother. I'm a life long New Jerseyan, and a graduate of Kean University, where I attended on a full academic scholarship. During my years as a student, I worked on campus as a Teacher's Aide at the campus Child Care Center, as an Academic Mentor to incoming freshman and as an English tutor. After graduating in 2004, I continued to work part time tutoring until taking a full time position the following year in the Office of Human Resources. In 2008, I moved to Student Financial Services. Altogether, I spent over 11 years serving the Kean community, helping with New Student Orientation, ensuring adjunct professors were paid on time, and working with students to receive financial assistance to help make their dreams of a college education a reality- just as mine had come true.

In 2008, I married Keiron, who I had met- where else?- at Kean when he came from Computer Services to fix my P.C. In July 2011, I gave birth to our beautiful daughter Zoe Lyne Hope, and took a 6 month maternity leave. Unfortunately, it was while on leave that my health spiraled downward. While I had known I suffered from nerve damage- neuropathy- for a couple of years, I didn't know why, and it did not prevent me from working (although I did experience chronic pain). However, by October 2011, I began having problems walking, climbing stairs and sometimes even writing. In December, my new neurologist, Dr. Raji Grewal, admitted me to St. Francis Hospital in Trenton and I underwent five rounds of plasmapheresis. He diagnosed me as having Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). I extended my leave from Kean, and began weekly IVIG treatments at home, administered by a nurse. I also began taking a steroid, Solu-Medrol through IV. Despite the treatments, I never recovered enough to return to work and resigned in April 2012.

I continued the IVIG, but my health continued to fluctuate and finally declined, so in July 2013, I had a perma-catheter surgically placed in my chest and began monthly outpatient treatments of plasmapheresis. I suffered side effects of nausea, dizziness, drop in blood pressure and even loss of consciousness a few times. Along with IVIG, I experienced improvement with the plasmapheresis for a few months- only to have a sharp decline in January 2014. My doctor ordered two rounds of treatment for that month.

Everything came to a halt in February when I was admitted to the Critical Care Unit at Robert Wood Johnson/Rahway Hospital for blood clots that had formed in the perma-catheter. One settled in a vein right outside my heart, while another was found in a lung. The doctors told me I most likely would have died if it hadn't been caught. I underwent two surgeries, including an angioplasty, to remove the clot near my heart and to repair the damaged vein. I will be on blood thinners for at least the next five months, and cannot have another catheter implanted for months because my body must heal. As a result, I cannot have any further plasmapheresis treatments.

There may be a way to stop all of this- to receive an Autologuous Stem-Cell Transplantation at Northwestern Memorial Hospital in Chicago, IL. I have been accepted into a trial that has already helped hundreds of people with CIDP and similar neurological diseases to go into remission. You can find out more here (http://www.stemcell-immunotherapy.com/index.html). Our insurance company, Horizon BCBS of NJ, has denied covering this treatment because they say it is "exploratorial" and not "medically necessary". The denial letter claims I have not tried steroids or plasma exchange when I have- for over two years! I have requested an External Review by an independent medical group, but I'm hoping to garner support in telling Horizon to cover this treatment, which is cheaper than IVIG, by the way. Will you help?



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