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CB# 28

“No one experiences freedom until they stop pushing against others. The only thing that binds you is the pushing against that which is unwanted.” – Abraham

The rules in California are like none other, when it comes to healthcare.  I have several complaints that have made our experience more difficult than it needed to be.

First of all, when we decided to treat in Little Rock, our original diagnosing doctor who assured me before we left that he would work with them and I quote, “All they have to do is tell me what they want me to do and I will do it!” Well, when we got back from our first treatment (8 weeks), I faxed the prescriptions to his office and drove an hour to Marysville to pick up the “re-write” of the scripts. Out comes a receptionist to tell me that he won’t re-write all of the scripts because it isn’t what he would order! I was on the verge of tears as I had been having some difficulty with him on the down dosing of Dave’s pain meds prior to this incident. He basically abandoned us once we went to Little Rock for treatment and I was stuck with no other doctor in California to go to. The overwhelming burden of “feeling” abandoned by the only doctor we knew in California was beyond words. With everything else we were dealing with, the cancer, the fear, the recovery, the fear, the move, the fear, the distance to Marysville, the fear, this was the last new problem I needed to now contend with. I thought of writing a letter to the Medical Board to make a formal complaint, but in the end, I knew from experience, that anger and distractions from getting Dave well was simply not where I was going to choose to spend my emotional energy. So I left with what he was willing to give me with tears in my eyes.

So what is this “re-write”, you might be thinking? Well, if you are a resident of California, you may not fill any prescriptions or receive any treatment recommendations from an out-of-state physician. You can’t get labs drawn, you can’t have scripts filled, you can’t have anything unless a California doctor writes it. UNLESS, you are visiting and on vacation. This is THE ONLY STATE that has this law. Of course we didn’t know this when we left to treat in Little Rock and after we left and I called Little Rock about the problem, they said, “Oh yeah! We forgot about that in California!” The nurses graciously offered to call the Doc for me, but he refused their call.

Now not only did we not have a doctor, but we were scrambling to figure out what to do. Eventually we located a Internal Med doc in the UC Davis system in Elk Grove, and he was amazingly supportive and helpful, while we were still trying to find an oncologist. He introduced us to the one in his office and he was incredibly difficult and arrogant for most of our consultation. Then he apologized, which was a welcome surprise, and said he now understood what we needed and he would try to help us. However, in the end, we switched out of the UC Davis system, as I was concerned about the “other” doctors having access to Dave’s electronic files within UC Davis. I could ask for a free annual audit to report to us “who” had accessed his records and when, but again, this is not where I wanted to spend my time and energy, so we left. It is illegal and a fireable offense if unauthorized personnel view your records.

HIPAA.  I hate it. It is mis-used and misunderstood. As Dave’s wife of almost 30 years, I have no access to even a conversation unless and until papers are signed by him authorizing me. They were, until recently, able to be general and blanket, and now, they have to be specific. How specific? They don’t really know. But when I would call the UC Davis office to talk to the nurse or get his labs, the receptionist, or whomever I was talking to, would immediately cut me off and say, “We can’t talk to you, HIPPA laws…” I would respond, “No…we have signed all the papers!” They would say, “Oh, with a distinct disdain and then help me.”  Now here is the rub, they didn’t check their computer records before they quickly tried to not help me AND they didn’t check their computer records when I said we had signed the necessary forms. They are using HIPAA Laws to “STOP” whenever they don’t want to do something, which is often. I’m in the process of investigating the actual HIPAA laws, but again, its not where I want to spend my energies, but I think its a huge outpoint in our healthcare system at the moment.

My next plan at our current cancer center is to contact the Social Workers to discuss some things along these lines. Its important for those of you dealing with healthcare issues to know that every hospital has SWs that are there to assist and advocate for YOU in all matters that you may need assistance on. I urge you to make yourself known to them and utilize their vast skills to negotiate the system.

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