When Sally Met The Media, The Insurance Compay and SCCA

Wow, what I just wrote really confused me, and it's my life! So I am going to just start writing, by topic and timeline. Kind of.

I wrote ten days or so ago about the last time I was at my oncologist's and the reality of having run out of all other treatment options other than the bone marrow transplant. I am still adjusting to this. Bottom line is I am really afraid. And really hopeful. And very anxious.

At the same time that we were dealing with this outcome, many of my local supporters were contacting local media outlets in outrage that as a patient I was having to deal with the only viable option to save my life but as a consumer I could barely even do that because of the out-of-pocket cost I would need to even receive the transplant. So literally as I was wondering how I could pull myself out of the emotional pit I was falling a little back into, my phone began to ring. And ring and ring and ring.

Because of the incredible support and care of many in Spokane (I am not sure of blogging rules so I will not name names), our local tv stations were receiving calls that someone needed to do a story to let people know about Sally Land. I had been forewarned the night of my doctor appointment that I might hear from someone in the media, but baby, I had no idea what was in store!

I've never dealt with the media other than my perp walk. No, I am kidding. Just a joke to lighten things up- no perp walk. So the first person who reached me I agreed to do an interview with. I could now write all I could remember about the experience and all the calls and the unannounced door knocking, etc. But the end result was one interview, which aired on Monday, November 24. I have posted the links at the upper right of my homepage if you'd like to watch. (I have heard that sometimes the video won't play.) It pretty much speaks for itself.

I will say that the process was interesting but very stressful. Suddenly I was speaking with higher ups at the health insurance company, their local people and their P.R. people in Seattle. In the end, they could not tell me that my policy would cover all my transplant expenses. They did explain their confidence that my coverage was thorough and they felt optimistic that my expenses could be reasonable. But they, of course, can't tell me what my personal medical jouney will be and what that may entail in regards to how Seattle bills for the transplant and how the insurance allots their coverage.

Ultimately I was grateful for their time and attention but could not be given the assurance that my medical expenses would be covered. Group Health realy put the onus on Seattle Cancer Care (SCCA). Essentially it was explained that I would have to navigate this through SCCA because I would receive their services and be responsible for their services. My insurance would cover what it covers and then I would be responsible for the rest.

So I began the process of working with their Patient Finance Department. In conclusion, I expect that the radiation dial will accidentally be turned too high when I get there.... SCCA can't tell me what it will cost either. They use averages to ballpark the fees a patient can expect. They bill insurance and then the patient is responsible for what's left. But no one knows what that will be. Unlike Group Health, they explained that my $250,000 transplant benefit can quickly be exhausted. I kept coming back to needing the explanation between the $250,000 benefit (really $200,000 as $50,000 is set aside for typing and donor procurement) and the $379,000 quoted average transplant cost.

NO ONE WILL TELL ME WHAT THE CONTRACTED RATE IS. NO ONE WILL PUT ANYTHING IN WRITING. THIS IS SCARY.

Group Health has a contracted rate with SCCA. Neither party will disclose this rate. So they tell you it costs "X" but they already knows it costs "Y". THIS is why the insurance company tells you they think you have great coverage. They know something you don't: what it actually costs.

Ultimately, I received the good news from SCCA that I had been "misquoted" that I would need the $179,000 deposit to get started. Apparently, the Representatives that have told me that were incorrect. I have now been told that because I have health insurance that I will only need all my Seattle housing and living expenses, hired caregiver expenses if I can't get volunteers, and the "anticipated" medical out-of-pocket expenses to finacially be ready to get started. AND THANKS TO ALL OF YOU, I HAVE THAT!!!

Until I get my transplant date, and oh yeah, a donor, I will not be able to really figure out these details. BUT WHAT A RELIEF TO KNOW THAT I AM IN THE BALLPARK! What SCCA will do is bill me back-end, meaning after insurance has paid all they will pay, I then become responsible for the expenses. I will write more about that in a separate post because you probably are bored and have already stopped reading...... And it kind of is its own subject.

My final thoughts. I started this post talking about the media and have ended in finance. Now you see how my mind works these days! Thank you to my Spokane friends who networked with Group Health and the local media. Even though it was really a very crazy experience, your efforts opened doors to people who I would otherwise not have had access to. And even though some of the answers I got weren't what I wanted to hear, I made huge progress in getting the information and that was a big deal. To those of you who are in media or who work with them, my hat is off to you!

Ultimately I hope that I can work with the media to bring light to the basic issue of transplant cost versus coverage. But I guess that doesn't grab viewer ears like the anger of a dying mother. But they did do what they promised and helped me get answers, for which I am very grateful. And I can renew my vow to keep fighting for this cause down the line. I have offered my assistance to Group Health as well as SCCA should they decide they would like to work on fixing their parts in a very broken system. My suggestion would be to start by giving people factual information in writing.