UnitedHealthcare Overturn Denial of Life-Altering Life-Saving IVIG Treatment to 23 Yr Old
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I am Sarah Sommerville. I am 23 years old, and I have been denied, the life-saving and life-altering treatment of IVIG, four times over the course of 9 months from UnitedHealthcare.
I would say I have been incredibly hard headed and stubborn since the day I was born, and I have never let anything get in my way. But, my body has challenged this stubbornness, as it has given me no choice but to obey the limits it sets. This has been my life day in and out for many years now, but the last two years have been the hardest thus far.
After years of searching for answers, I was officially diagnosed with Postural Orthostatic Tachycardia Syndrome in February, 2016. Now, this is essentially a syndrome, which is a collection of symptoms. My doctor at the Mayo Clinic, who has handled my case for the last 12 months, is an expert in finding the underlying cause(s) of this particular syndrome. We have discovered that the Postural Orthostatic Tachycardia Syndrome is autoimmune driven, which is why IVIG is now my only viable option. My condition is now further specified as an Autoimmune Autonomic Neuropathy. In addition, I have been diagnosed with Mast Cell Activation Disorder (MCAD), Ehlers Danlos, and extreme hypothyroidism. At the time of my diagnosis my TSH was 7x the upper limit and am now on medication for it. I take a combination of three medications for the MCAD, one of which I take four times a day and costs over $1,000 per month.
It seems almost like a domino effect. Once the body starts to struggle, so many other parts are trying to work over-time that additional problems continue to arise. However, once one problem is under control my body can get a break and begin to heal, which is what IVIG will provide me with.
I have received the conventional therapy of IV Methylprednisolone. IVMP must be attempted, per UnitedHealthcare policy, first before any other treatments are considered. Which, we did. The benefits were fleeting, and I was no longer responding to this treatment as of July, 2016. It seemed to be causing me a great deal of harm. Imagine the worst hangover and the worst flu combined. This is how IV Methylprednisolone made me feel. I received IVMP for a total of 8 months before I decided I could not take it anymore. I received an aggressive dose of 24 grams that was largely ineffective in improving and halting my condition. I threw up throughout the night after treatment on several occasions, all while seeing no improvement to my overall condition.
Currently, my doctor does not recommend and ultimately will not prescribe any more IV Methylprednisolone even if I wanted it. It is too risky and I face too many complications one of which is necrosis of the hip. IVMP is no longer an option. I have been trying to get IVIG approval by United Healthcare now for over 9 months. I have now been without any treatment for my condition for 5 months, as I wait for United Healthcare to approve the treatment of IVIG that is imperative to my healing. IVIG is the ONLY option at this point.
At this time, I’m losing massive amounts of hair, weight, and independence. My body feels like I’m 100 years old. I have pain in every joint. I have fainted. I am a fall risk. I have to use a wheelchair. I have to sleep a minimum of twelve hours per day. On many occasions I can’t keep food down. I have pooling blood in my legs. My fingers and toes turn blue. I have fevers every single day. I have increasing pallor. I have night sweats from fevers that soak through my bed and several sets of clothes. My vision goes black when I stand, if I am even able to. I am unable to drive. I cannot make my own meals. I cannot brush my own hair. I am unable to complete school work. I am unable to finish my degree. I am unable to have a full-time job. I am unable to experience life. I am unable to be a functioning member of society because United Healthcare will not give me the IVIG that I desperately need. I am 23 and am watching my life go by. There is something that can be done. It has been used on countless occasions. We have sent United Healthcare our research and evidence of my deteriorating condition in addition to a recent hospitalization as a result of not receiving proper treatment. My doctor is working diligently to create a clinical trial to show that IVIG IS effective. He has participated in medical journals, research, educational programs, case studies regarding this condition, and particularly the use of IVIG to treat it. He has personally treated over 50 patients who have positively responded to IVIG with my condition. It is right in front of you and me. My medical team agrees. But, United Healthcare continues to deny me this life-altering and life-saving opportunity.
I want to be able to stand in a line. I want to go to class. I want to make my own meals. I want to drive again. I want to be able to care for myself. I want to complete basic daily activities. I want to not feel like I’ve been hit by a truck every morning. I want to not have fevers. I want to be able to stand for more than thirty seconds without risk of fainting. I want to live on my own. I want to have endless opportunities regardless of my illness. I want to be a social worker. I want to have a positive impact on my community. I want to graduate from NAU with my undergrad in social work and a minor in biology. I want to go on to get my master’s degree in social work and ultimately become a licensed clinical social worker. I want to help others. I want to have a successful career. I want to experience life. I want to go to concerts, go on a hike, or even just stand up in the shower. I want to be a good friend, a good sister, a good niece, a good daughter, and a good citizen. I want to be a wife. I want to walk down the aisle on my own two feet. I want to be a mother. I want to be healthy. I want my life back. I NEED IVIG. I cannot do any of these things until I receive the proper treatment.
This is UnitedHealthcare’s chance to right their wrong. Give me the chance to live my life again. Overturn the decision that denies me the life-saving and life-altering treatment of IVIG, that has been proven effective in treating Autoimmune Autonomic Neuropathies and Mast Cell Activation Disorder. Grant me one year of IVIG treatment to halt my condition and give me a future that does not consist of being on disability and relying on others to care for me.
In notes provided by my doctor, an expert in his field at the Mayo Clinic, he states:
"I have suggested an IVIG trial. It is extremely frustrating that the insurance company is denying potentially life-altering and life-saving treatment for Miss Sommerville. My recommendation to proceed with IVIG is based upon years of clinical experience in treating this condition. It has been my impression from the very first time I saw her back in March of last year that she undergo immunotherapy for her condition. Unfortunately, the insurance company outrageously and inappropriately is contradicting my opinion which is based upon years of experience and many, many patients. We have treated well over 50 patients now with this type of condition with IVIG, and the very large majority of these patients respond favorably to IVIG."
In another letter provided by my doctor (and sent to UnitedHealthcare) he states:
"Ms. Sarah Sommerville has been a patient of the autonomic clinic since March 29, 2016. I am responding to your denial of our recommendation for immune mediated therapy (IVIG) treatments. As a large autonomic referral center, we have found that patients who fail to respond to conventional therapy for their autonomic disorder have made significant improvement when treated with immunoglobulin therapy. Despite conventional therapy, and more aggressive therapy with a total of 24 gms of IV Methylprednisolone over the last eight months. Despite this aggressive therapy she continues to have worsening symptoms. She is losing weight and hair, decreased appetite with increased vomiting. Her activity is limited to bed or wheelchair. We believe failure to treat her with IVIG may result in continued decline and repeated hospitalizations that will be costly to your company.
Our treatment recommendation is based on my clinical experience as director of the Autonomic Clinic, test results, laboratory studies, and medical literature (American Journal of Therapeutics, 2014, 21, e120-123)."
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