Overturn Denial of Life-Saving IVIG Treatment to Young Mother of Four

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Help us reach 50,000 signatures to call on Aetna to overturn their many denials of the treatment Sarah Lillard so desperately needs.

Sarah is only 38, and has four kids; once able to live a vibrant life, now she’s completely bed-ridden and wheelchair-bound because Aetna refuses to pay for the treatment that two expert doctors say she needs:  IVIG.  She has been denied three separate times over the last 12 months, most recently in August this year, despite our latest attempt to send Aetna over 100 pages of evidence, test results, research articles, letters of medical-necessity from two separate doctors, copies of approvals proving Aetna itself(!) as well as other insurance carriers covered this treatment for the same condition, and even a letter from our Congressman asking Aetna to cover the treatment.

In 2014, Sarah Lillard had thyroid cancer, and beat it.  For the last three years, Sarah’s body has been slowly deteriorating, to the point where she cannot function anymore.  For years Sarah and her husband sought multiple doctors who could not figure out what was causing her symptoms, and in 2018 she was officially diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia.  But that is not the end of the story – after treating POTS with all the standard medications, not only did she not recover, she got worse.  Turns out she has a serious autoimmune disorder called Autoimmune Autonomic Neuropathy – big words to say that her immune system is out of control with antibody production and it is ravaging her autonomic nervous system.  We now even have the antibody test results to prove that this is an autoimmune problem, and yet Aetna refuses to acknowledge this.  In addition, she has been diagnosed with Mast Cell Activation Syndrome (MCAS), Ehlers Danlos syndrome, hyperhidrosis, gastrointestinal dysmotility, and autoimmune encephalopathy.  Today she’s on over 10 different drugs, plus near-weekly IV fluids injections and physical therapy, to try to give some relief, quell some of the pain, keep her heartrate stable, and suppress some of the symptoms.  But sadly, none of this is working, none of this addresses the underlying autoimmune problem, and she continues to deteriorate.

To give you a feel of what life is like now: imagine that feeling when you’re over-tired, bone-weary and achy from the flu, and it hurts just to get up and walk to the bathroom... Sarah feels like that all day, every day.  She sleeps for 12 hours, and wakes up tired, feeling like she was hit by a truck.  Now she spends most of the day in bed.  When she stands all the blood pools in her legs, she gets faint and dizzy, and her heart races.  Just like many others who suffer with dysautonomia, her brain is in a constant state of fog, that keeps her from being able to interact naturally with everyone.  Headaches are persistent.  Her intestines are in a constant state of pain and unsettled, and her body can’t control its temperature.  Her hair is falling out and she gets dehydrated despite drinking over 100 ounces of water a day.  Now she’s forced to use a wheelchair, and even then, only leaves the house to go to the doctor’s office.  She can’t drive.  She can’t make her own meals.  She is unable to have a full-time job or even go on vacation with her family.  She longs to be the mother to her children, but instead has to watch from bed as they grow up and life passes by. She longs to be able to talk to her husband without the brain fog and be able to enjoy the love of her life.  What’s even more heartbreaking is that she wants to pursue a career in writing, and even had some of her work recently published; but now that’s been taken away from her.  All this because Aetna will not give Sarah the IVIG that she desperately needs.

IVIG is the solution. There is now sufficient research and trials with many other patients that show IVIG is exactly the needed treatment for her condition. Doctors at the Mayo clinic now consider this to be the go-to treatment, especially after exhausting all the other methods and drugs. All the research shows that IVIG is effective over 80% of the time in completely curing the underlying autoimmune disease, that patients are able to return to a life of normalcy, and get off of all the other medications they endure.  It’s a proven fact now, but Aetna won’t acknowledge these studies.  Last year Sarah saw one of the nation’s experts in dysautonomia and POTS, and his appeals to Aetna were denied despite all the clinical evidence supporting her diagnosis and need for IVIG.  This past year, Sarah has been with another doctor, also expert in autoimmune diseases, and he was successful in finding the biomarkers for the disease.  He has treated multiple patients with IVIG and they recover.  His letters to Aetna were compelling:

“The efficacy of IVIG in the treatment of autoimmune dysautonomia has been well documented and continuation of IVIG is medically necessary given the severely disabling disease which has affected Sarah’s functional ability.  Autoimmune autonomic neuropathy is a very disabling condition and patients often continue to slowly decline, frequently resulting in repeated hospitalizations, dependence on artificial nutrition, and become wheelchair dependent.... I am making a strong plea that Aetna reconsider its position with regard to paying for IVIG therapy and grant Sarah access to a therapy which is medically appropriate and necessary.  Sarah Lillard’s diagnostic test results and prior treatment response indicate an autoimmune disorder that is treatable with IVIG... If Sarah Lillard has any chance of a legitimate quality of life, then she will require IVIG treatment as soon as possible.”

Earlier this year, Sarah and her husband were able to raise some money on GoFundMe, and combined with our savings, we were able to pay for several half-dosage treatments of IVIG.  She got better!  But only partially because they were half the dosage her doctor prescribed.  She was even able to go to a writers conference on her own for a weekend.  As soon as she stopped (we ran out of money), she deteriorated again back to the miserable and horribly fatigued state as before.  So now we know IVIG works and that a full course over 12-18 months is needed – then she can finally beat this disease.  Remarkably, Aetna even ignored this evidence that IVIG is an effective treatment for Sarah.

What’s even more remarkable is that Aetna is likely to pay more in the long run by NOT covering IVIG – Sarah’s already been to the hospital multiple times, and her medications are over $3,000 per month as it is.  That’s not to mention countless visits to the doctor, therapists, and attempts at other interventions that will continue if Aetna doesn’t relent.  That approach is treading water indefinitely, throwing money down the tubes because it doesn’t solve the underlying problem.  It’s baffling why they wouldn’t even see this as cost beneficial to THEM!

Please join with us to convince Aetna to OVERTURN their denials.  We all want Sarah to be able to live life again, to be present and active with family and friends, to be a functioning and capable and contributing member of society again.  She wants to start writing again, and maybe even go back to school for a degree in counseling, and help others struggling with illness or depression. This is Aetna’s chance to right their wrong.  Overturn the decision that denies Sarah the life-saving and life-altering IVIG treatment, proven to be effective in treating Autoimmune Autonomic Neuropathies. Grant Sarah one year of IVIG treatment to stop her downward spiral to 100% disability.