After over 4 years of battling my HMO and my oncologists to get the treatments that I knew were recommended by specialists in the field, my oncologist finally sat down and told me that she would likely have arguments over any orders of my new Carcinoid Specialist (her current objection is simply some new blood tests). She told me why… The HMO and she are committed to results based medicine. As a result, I am leaving her and the Kaiser Permanente HMO.
Caution, these thoughts are my understanding and opinions. I am not a medical professional.
As a statement, “results based medicine” sounds good and if your disease is well known and thoroughly studied, it possibly is good. Results based medicine (also known as Evidence Based medicine) means basically the physicians will only use medicine and treatments from well designed and conducted research. In addition, the results of that research should be made available to physicians through guidelines from professional sources, guidelines and checklists. This is great. It tends to protect the patient and the doctor and make the doctor’s work more efficient.
Why then must I leave my insurance company? What does “results based” mean to me?
I have neuroendocrine cancer. This is a disease which is rare and poorly understood. There are very few medicines or treatments which qualify as “results based”. In fact, my doctor has complained that there are no guidelines for neuroendocrine cancer (there are guidelines but they are not 100% results based). The only treatments that qualify as “results based” are a couple of drugs that treat the symptoms and might inhibit tumor growth a bit and maybe a treatment called embolism which has been used for many liver cancers for years.
That means that my doctor and my HMO believe that only my symptoms should be treated by a limited number of drugs which are known to stop working after a few years and that the doctors will monitor the progress of my disease with a limited subset of the possible tools to check how sick I am. Actually it is not really very important to monitor the progress of the disease because they do not allow themselves enough options to change the strategy anyway. To me: this is something like ongoing hospice care, by which I mean they only attempt to keep me comfortable while the disease kills me. It amounts to a refusal to treat me with the advancements currently being made and known by the specialists in the field. In fact, my doctor evidenced disdain for specialists. Note that most neuroendocrine specialists treat more cases in a month than my oncologist or any nonspecialist oncologist will treat in their entire career. The specialists might know something that the others don’t.
Should I be satisfied to get sick and die because those doctors have committed to only certain standards of treatment? I don’t think so.
I think that any patient with neuroendocrine cancer or any rare or unusual disease should find out if their docs follow only “results based” medicine or not. I think that, ethically, doctors should be obligated to tell patients what that decision means for them instead of playing verbal games when the patient suggests a new treatment. If their doctor claims to strictly “result or evidence based medicine”, any neuroendocrine patient should get away from that doctor or insurance as far and as fast as they can. That doctor will not treat the disease. The patient will likely get sicker sooner and die earlier than need be. We patients do not have the obligation to die for the doctor’s beliefs.
I have wasted 4 years battling doctors/insurance who only wanted to treat symptoms. when I asked for a standard tumor lab test called Ki-67 which measures tumor growth rate, they answered “Why? The treatment would not change no matter the rate.” Anybody who has dealt with cancer knows that how fast it is growing is very important. By being obnoxious I managed to get chemoembolism but that only worked for a few months. After getting progressively sicker for a year and being told that surgery as a treatment was not proven in a double-blind study and that it might kill me (true but not likely), I went to an outside doctor who wrote an opinion that I should have surgery as soon as possible. My oncologist caved and approved it but was never happy about it even though I have felt better in the two years since the surgery than I felt in the 3 years before the surgery.
Thank goodness for Medicare and the Affordable Care Act. Thank goodness that this month is the Medicare Open Enrollment Month. Changing Medicare Advantage Plans was easier than I thought it would be. I should note that I had to go to a Medicare appeal process recently after the HMO denied a request for referral to the specialist. They then denied my appeal. Medicare requires that they get to review a denial of an appeal. Medicare reversed the denial saying this:
“The enrollee has been proactive regarding his disease and although carcinoid tumors are often seen by medical oncologists and surgeon, it is not their major interest; new regimens and drugs are always being considered. Consulting with a specialist in his disease would be appropriate for this patient.”
“Our MAXIMUS Doctor Consultant says that the enrollee should be allowed to consult with the OON (out of network) specialist due to the plan’s network having insufficient expertise in this enrollee’s condition.”
Now I have changed plans, I can have my Carcinoid Specialist as my normal oncologist, not just a consultant. The problem is that now I also have to select a Primary Care Physician, a Cardiologist and a Cardiac Electrophysiologist and a Urinary Surgeon but it’s worth it. I already feel better.
May we all have the best possible outcomes,
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