As the doctors and nurses at UCSF began to get a handle on Sami's seizures last weekend, we talked to her oncologist about an Avastin infusion, which we hoped would reduce the swelling on Sami's brain even further - and with a lower dose of steroids. The nurse practitioner, who we really like (when we can talk with her) also suggested a short stint of in-hospital acute rehabilitation for Sami. She thought it would help Sami regain some of her independence and mobility, and, as she put it, "restore her soul." We'd considered rehabilitation after Sami's second surgery, but Sutter Health was unwilling to help us make sure Sami could start cancer treatments during rehab. This time around, the UCSF doctors and case managers assured us that Sami could get any additional treatment she needed. And that she would gain quality of life.
We tried to get into the Sutter Roseville facility, close to home, but they told us they didn't have any space. Our next choice was UC Davis Health, in Sacramento. The case manager here in San Francisco contacted UC Davis on Monday. We have yet to hear back from them (it's Friday evening as I write this). Our third (and final choice), Dignity St. Francis here in San Francisco, told us on Wednesday they could take Sami.
Now that Sami had been accepted, UCSF had to check with our insurance company to make sure they'd authorize treatment. Once the referral was forwarded to our insurance, I called to make sure they'd received it and to hopefully move things along. The representative I talked with on the phone yesterday afternoon said we could expect an answer in 5-8 business days. I'm not proud of myself, but I used a four-letter word that seemed appropriate for the occasion. Several times. Swearing didn't help.
This morning, after talking with UCSF and with the insurance company again (who told me they could "expedite" the consideration - it would only take 3-5 business days), I decided to shame the insurance company on social media. Within 30 minutes of my twitter post, the insurance company reached out and asked me to email them. I did, to no avail. Late this afternoon, I emailed again (and tweeted about their lack of response). Five minutes later, a nurse from the insurance company called. And finally, after 6 p.m. this evening, the insurance company nurse texted me to tell me that the referral had been approved. Sami will be able to go to rehabilitation, and she'll be able to come home next weekend (we hope).
While this seems like a happy ending, our success leaves a sour taste in my mouth. I know there is something to the old adage, "The squeaky wheel gets the grease," but I also know that many people don't have the capacity to squeak. I realize that my job (which has allowed me to take family medical leave) gives me the ability to focus exclusively on Sami's care when I need to - most people don't have that privilege. Expecting answers is a further privilege that many people don't enjoy - many questions go unanswered, even for someone as persistent as me. I can't imagine being a patient and navigating this system alone. I can't imagine having to make decisions about keeping a job or caring for a loved one. Regardless, I can't escape the conclusion that the health care system is absolutely broken. This evening, I'm exhausted - physically, mentally, and emotionally. Sami, Lara, and Emma are as well. Today has not been healing, for any of us.
Everyone we've talked to during this experience has agreed that the system is broken - doctors, nurses, case managers, social workers, insurance company nurses, patient advocates - everyone. Some of the brokenness is perhaps trivial - having to sign a new form for every doctor, insurance representative, and hospital allowing me to represent Sami and obtain her medical records seems inefficient at best. Allowing someone to make a determination about treatment for a person they've never seen is ludicrous and cruel. Failure to communicate with a patient or her family is inexcusable. I don't know how we fix this mess. So far, swearing hasn't been enough.
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