Today was the third and final day of Vanessa's first IVIg treatment. I can't stop thinking about her.
Vanessa spoke at the West Coast PANS/PANDAS Parent Symposium in April of this year. Her story is one of grace and humility, tragedy and victory.
Vanessa developed PANDAS when she was 11 years old. Severe OCD as well as other physical symptoms and cognitive issues. She tried to hide it from her parents because the OCD told her that if she told them, they would die. So she didn't tell them, for years. Instead she mostly suffered in silence, struggling her way through school and work and life and friendships.
It wasn't until she was 28 years old, living in NYC working on an internship or school, I can't exactly remember, when she heard about a study at the OCD clinic at Columbia University Hospital. During the screening, they discovered that they thought she may have PANDAS. When her work was done in NY, she came back to the Bay Area and followed up at UCSF neurology, where they diagnosed her with PANDAS and autoimmune encephalitis.
After 3 days of intravenous solumedrol, Vanessa told me that her mind was silent for the first time in 18 years. She could barely recognize the quiet personal space that was her own self. Can you imagine what this would be like?? I doubt we really can. This was early 2013.
Since this time, Vanessa has had alot of treatment, alot of antibiotics, and alot alot of steroids. They help but not for long, of course, the inflammatory autoimmune process is so engaged, and the effects wear off faster and faster. The side effects of long term high dose steroid use are very bad for you, and very uncomfortable.
So after months of being turned down for IVIg by her insurance through the state of California Health Plan, her treatment was finally approved. One treatment. UCSF is pushing for six. There is no certainty that her insurance will cover any more.
How did Vanessa get her insurance to cover the IVIg? She never took no for an answer. She continued to escalate her request, and got all the way to a lawsuit. She devised and filed a formal petition with the required number of signatures to push her insurance to cover IVIg for PANS/PANDAS and AutoImmune Encephalitis as a rule. She backed off of having the hearing that was supposed to be on June 2, when just a couple of days before, her insurance said they would cover it. Well, of course they wanted to avoid a judgement! So they caved before that could happen and said they would cover her treatement.
Today she told me that her insurance has called her a number of times asking her to please call off the lawsuit. Vanessa was conflicted, because of her generous spirit. She wants to continue to push for parity of IVIg coverage for everyone. But I'm afraid that if she keeps on pushing them, they could totally deny her future treatments.
Another dilemma. Do you do what might the best thing for everyone and possibly risk yor own best interest?
I suggested to Vanessa that she not continue with the lawsuit, at least not for now, until she has gotten what she personally needs. Vanessa deserves to be well, and simply cannot risk losing the coverage.
Hopefully, stories like Vanessa will soon be a thing of the past for PANDAS/PANS children. And meanwhile, she is a warrior and an extraordinary being and one of the biggest people and most humble human beings I have ever met.
I love you, Vanessa. I am so happy for you, that you are having your treatment, and so proud of the simple quiet courage that you portray day in and day out, and your willingness to find hope after all those years of illness, and pursue it.
You are an example of one of the best people on this planet and I am blessed to know you, and to have the chance to watch you come back.
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