Sarah Lillard's Medical Treatment

In 2014, Sarah had major surgery to remove thyroid cancer;  she has never truly recovered.    Since then, Sarah's health has steadily deteriorated, and she has seen many doctors in the attempt to get her extraordinary fatigue (and other symptoms) under control.     Last year, Sarah successfully found a doctor who is a world-renowned expert in dysautonomia and autonomic neuropathies, and began treating her for POTS  (Postural Orthostatic Tachycardia Syndrome), which was thought to be the underlying cause for her debilitating fatigue.   Over the last several months, it's become clear that those treatments are simply not working and Sarah suffers from a deeper autoimmune disease that affects her autonomic nervous system, one that is not well understood by the medical community.  

The only treatment that is anticipated to help her is expensive, costing $6000-7,000 per infusion, and the doctor has prescribed 6 infusions to enable her body to reconstitute itself and get her on the road to recovery.  Sadly, our insurance company (Aetna) has refused to pay for the treatments, calling the drug "experimental" and providing no recourse for her worsening condition.   Sarah's husband, Bram, continues to fight Aetna filing multiple appeals and coordinating doctor-to-doctor reviews of Sarah's diagnosis.  After 11 weeks of letters, phone calls, formal appeals, involving patient advocates, case managers, nurses, doctors, medical directors, supervisors, and HR departments, we have not succeeded in gaining approval.    All the while Sarah's fatigue worsens, to the point where she cannot complete simple tasks like going to the grocery store or walking kids to school without needing to sleep the rest of the day.  Sarah is unable to pursue her love for music, songwriting, poetry, gardening, nor go back to school for a degree in counseling as she had planned to do;  everything in life is on hold.  

There is no guarantee that this treatment will work, but we are hopeful, and we have to try.    We are also going to start pursuing the help of other specialists that are not covered by our health insurance, but have expertise in Sarah's condition.   We may also need to make a trip (paid out of pocket) to the Mayo clinic.   We're anticipating a lot of medical bills in the coming months.

Our family is suffering -- Sarah longs to care for her children, husband, and home.   Won't you partner with us to enable Sarah to get the treatment(s) she needs, overcome this debilitating disease, and return to a dynamic  life.

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Organizer

Bram Lillard 
Organizer
Springfield, VA
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