Poll Results and Mental Health Update

So I am sure you are all dying to know the results of the poll. Eleven of you voted and the vote was unanimous that the Tufts response was unsatisfactory. You win. I will tell Tufts that I am not satisfied with their proposed "solution" to my complaint in a letter that I have copied below. I give Tufts further credit in the meantime for posting a comment in response to my post entitled, "A Lesson in Health Insurance." Now, that's astute social networking.

All continues to go smoothly with my treatment. The side effects of the chemo are tolerable, although becoming tiresome. I have four more infusions of the current cocktail and then a break before radiation starts. Did I tell you that during that break I am traveling with my family on a National Geographic Expedition to the Galapogos? We are celebrating the end of chemo, my mother's birthday and a 25th wedding anniversary. We're in a kind of carpe diem phase lately.

As the end of treatment approaches I feel increasing trepidation about my future health. My primary care provider has been haranguing me about the blood pressure readings I am getting before each infusion. She knows about these readings by tracking them through her secret, back door access to my cancer medical records. I think she's jealous about all the cancer drama and wants a piece of the action. As long as I can remember, or at least since the days I thought I had AIDS, my blood pressure is elevated at the doctor's office. "White coat hypertension" they call it. Wouldn't I be dead by now if I really had a serious, 30-year-old, untreated problem with my blood pressure?

Many times I have been instructed to take my blood pressure at home to prove that it is lower there than in the medical office, and year after year the readings prove the point. But my PCP doesn't seem convinced or she's concerned about a negligence lawsuit. The oncology nurse practitioner told me recently that she once participated in a workshop during which the facilitator instructed the attendees to be guided every day of  their practice by imagining what the patient might say in the witness box should she file a medical malpractice complaint. So much for medicine as art.

So the PCP called the oncologist and told the oncologist to tell me to set up an appointment with her to discuss my blood pressure readings. (She must have thought that the oncologist would have more sway with me than she would. Kind of like 7th grade romancing - Jenny, you tell Joey to tell Harry that Penelope likes you...) Meanwhile, the oncologist says, "I never pay any attention to the blood pressure readings that are collected in this office. You'd have to be dead not to have elevated blood pressure while receiving cancer treatments."

So all of this serves to remind me that once this breast cancer stuff is done, it's not like I can pretend I am healthy and happy and never have to worry about illness again. First, there is the 10% chance of recurrence. Second, my risks for getting other diseases is probably elevated. Third, I could get a whole new cancer and have to go through all this again, and worse. (Lately I've been focusing on melanoma and colon cancer.) I met a lady recently who while recovering from breast cancer treatment learned that she had colon cancer. This is why carpe diem works for me. I feel pretty good and pretty safe today. Time to go for a walk in the rain.

Have a happy week, everyone. xoxoxox
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Response to Tufts

Dear Ms. Jacobson,

Thank you for your letter dated May 19. I have considered your response and the proposed "resolution" of my complaint and have decided that it is not satisfactory, in part because I do not understand what the resolution is. Although you acknowledge that Tufts personnel did not follow proper procedures, you do not offer any suggestions for how to ensure that future patients do not suffer similar problems filling their prescriptions. You merely state that  "Your concerns have been documented and are now on file with Tufts Health Plan."   I do not see how this action resolves my complaint.

You discuss how personnel receive regular training on customer service but customer service wasn't really the issue. The issue was a conflict between two policies: one which required that the drug be provided through a mail order system and one that restricted dispensing of the drug to once every 14 days. My physician instructed me to take the drug every fourteen days following each chemotherapy appointment. The Tufts policy prohibited CuraScript from sending out the drug earlier than the 14^th day of the cycle thereby making it impossible for me to receive the drug in time to take it as prescribed. As a consequence of these conflicting policies, I was obliged to spend hours making phone calls to Tufts and CuraScript to obtain a waiver of the policy that would allow me to pick up the medicine at my local pharmacy. Moreover, Tufts and CuraScript personnel were obliged to deal with an anxious and increasingly frustrated patient for many hours that could have been spent more productively. In other words the conflicting policies result in more waste, increased overhead and lost productivity. It seems to me that the only appropriate "resolution" would be to change the policies to either extend the dispensing period to accommodate mailing time or to do away with the mail order requirement.

You also mention that CuraScript sent the prescription for four doses of Neulasta to CVS and "as such, CuraScript no longer held a valid prescription on file to accommodate future fills." This process is almost impossible to imagine in an era when most correspondence is conducted electronically ensuring that a "copy" of the prescription would still be available to CuraScript. If CuraScript actually conducts business in the manner you describe such that it does not retain copies of the prescriptions it sends to the pharmacy, I think another possible "resolution" to my complaint would be for Tufts to cancel its contract with CuraScript.

My chief objective is to prevent future incidents of this kind. Filing this paperwork will not achieve that result.

Thank you again for your efforts to seriously consider the issues I have raised.

Sincerely,

Prescription Perspectives

So. Big news.  Some of you might remember the blog post about the insurance nightmare of getting the drug Neulasta. Well, I sent copies of that post to the CEOs of Tufts Health Plan, CuraScript and Amgen. I recently received a four-page response from Tufts. The letter said stuff like:

•  "In order to address your concerns, we aligned your narrative with the documentation and records available from Tufts Health Plan, CuraScript and CVS..." (I guess these guys don't adhere to the view that the customer is always right. That must have something to do with ObamaCare.)
•  "A careful analysis of where the narratives blend and diverge provides us with an opportunity to thoughtfully acknowledge and appreciate your frustration." (I'm pretty sure it's just the "diverging" that provides this opportunity.)
• "In addition, our assessment illuminates the lattice of roles, responsibilities, and regulations inherent in the arrangement for and the delivery of healthcare." (Perhaps this illumination exercise might have been more beneficial had it been conducted prior to going into the mail-order drug business.)
• "The discrepancies among the narratives and in the results are indicative of an unfortunate misalignment of perspectives and responsibilities." (They got that right. My perspective was, I should take the medicine that the doctor prescribes. Theirs was, make her beg for it.)
• "...the manager evaluated the coordinator's focus to address your immediate needs..." (I wonder how this worked. Did the coordinator have to undergo an eye exam? I'm not sure the coordinator's "focus" was really relevant to the problem, but perhaps my confusion on this point has something to do with "misaligned perspectives.")

But, you've got to give them credit. It's not as if I received a word from any of the other companies...

So the letter attempted to explain the "misalignment" of how the process for filling the prescription should have occurred, and Tufts' "perspective" on how it did occur. The letter began its review of the prescription filling events on the day that I received my first dose. I guess they did not feel that the insane number of telephone calls that were necessary to convince them to supply the first dose were strictly on point. The letter did acknowledge, however, that my "telephone conversations with Member Specialists Michael (remember poor Michael?) and Nick (the supervisor with whom I never spoke because he was "not able to answer phone calls"(?)), are not available at this time to review and assess their content, tone, and sense of urgency..."  (Seems like their telephone logging system has a few glitches. Anyway, you'd think I had given them enough information about the "sense of urgency").

The true revelation of the letter was this amazing tidbit: "...however, what was missing was the recognition that the entire prescription for a total of four dosages was transferred to CVS and as such, CuraScript no longer held a valid prescription on file to accommodate future fills."

Ok. Let's consider that statement for a minute. Apparently, despite the astronomical sums they charge for drugs, and the existence of such cutting edge tools as computers, fax machines, the internet, and photocopy machines, once it sent the prescription to CVS, CuraScript no longer had a copy of it???!!!!  I mean seriously. CuraScripts receives a prescription from my doctor (which I imagine arrives as a fax, email, tweet...something other than in the form of a Hallmark card, which, admittedly, might be awkward to forward electronically) and then what do they do with it?  Do these people mean to tell me that they received a hard copy of the prescription, put it in an envelope, (forgetting to make a photocopy of it), addressed the envelope with a fountain pen, licked and sealed the envelope, stuck a stamp on it and dropped it in the nearest mailbox? Because that would be the only way that they would no longer have a copy of the prescription. Call me a cynic, but I ain't buying it.

And then there was this line, so filled with pathos and regret: "What should have been a seamless and contiguous process carried out according to protocol based on thoughtful and prudent planning, delegation of responsibilities, and integration of human and technical accountability--was not." While I appreciate this lofty aspiration, I don't think it is absolutely necessary for the Tufts HMO staff to figure out how to integrate "human and technical accountability." All they need to do is add two sentences to their procedures manual: "When you receive a prescription for multiple doses of a medicine that should not be dispensed all at once, be sure to keep a copy of it on file before sending the original to the drug store. Please note: Your job is to ensure that the patient receives the medicine by the time he or she is required to take it."

The letter concludes "Your concerns have been documented and are now on file with Tufts Health Plan. If you are not satisfied with this resolution, you have the right to request a reconsideration from Tufts Health Plan..."

I'm not convinced that the filing of the documentation will ensure that this "misalignment of perspectives" won't occur again, but I may have lost interest in further communication with these people. I am interested, however, to learn your thoughts. Check out the little poll at the top right-hand of this screen and let me know if you are "satisfied with this resolution." Together we will reform health insurance policy, assuming we can align our perspectives.

When the Oncologist Leaves a Message

The other day I noticed I had missed a call on my Blackberry. The missed call came up on the screen as "Private Number." I knew what that meant. A doctor. Doctors are reluctant to give their patients a heads up on who's calling them. Moreover, they would never want a patient to know the actual telephone number where they could be reached without going through several layers of telephone call fielders. Can you imagine making a phone call that is answered by your doctor? It doesn't happen. I think it is an image thing. Doctors need to project an image of inaccessible, highly prized dispenser of life saving wisdom. Such beings should not waste their time answering phone calls from lowly patients.

I checked my messages and heard the following:  "Hi Amy. I was calling to ask a quick question. Well, 'favor.' Please call me back at your convenience." It was my oncologist. The message made my heart race slightly, but I calmed myself with the comforting thought that I was not awaiting test results or any other information that could turn out to be bad news concerning new threats to my life. But I was very curious. What kind of a favor could I do for my oncologist? I immediately called the office number he gave me. I got the outside-office-hours recording at 4:30 in the afternoon when it shouldn't have come on until 5:00. (The medical staff skipping out early? Now that is scary.) I left a detailed message that was intended to convey my fervent wish to hear back from the doctor promptly.

No call back that evening.

By the next morning, curiosity had morphed into high anxiety. Perhaps the doctor had spent some time analyzing my latest blood counts (after all, what do doctors do when they are not meeting with patients or playing golf?), and discovered new problems. I called the doctor's office as soon as I sat down at my desk. I told the operator that I hoped to hear from the doctor directly since he had left a message for me and I was eager to know what it concerned given that I was a cancer patient. (Once again, I found it helpful to play the BC card.) "Oh sure, sure!" she answered empathically.

I then began a day of watching the clock and reviewing all of the possible interpretations of the cryptic message. A "favor." I suppose if he was calling to tell me that my blood counts indicated extreme anemia or immunity system failure, it would be a "favor" to him if I were to do something about it. A dead patient, after all, could have a negative impact on his reputation. On the other hand, if my blood counts indicated that the cancer had spread to my liver, the "favor" could be to consider discontinuing treatment so as to save precious resources for patients who might benefit from them. A more optimistic interpretation I considered briefly was that he wanted me to speak to one of his other patients because I was a model cancer patient who could offer invaluable advice and encouragement to less experienced, more frightened cancer patients. I dismissed that possibility at about the time I chewed off my last fingernail. I considered the possibility that he simply wanted to change an appointment time. That one too I had to dismiss since it was unlikely the famous doctor would waste his time making such a call. Perhaps he heard that I was planning more exotic travel this summer and he wanted me to do him the "favor" of not going. I killed three hours this way. I made sure not to use my cell phone for outgoing calls.

I decided I needed a change of scenery. I connected my cell phone to my clothes and went outside to do some yard chores.I jumped with every beep my phone made, and each time the phone would fall in the dirt. At this rate I would break the stinkin' phone and never find out why the doctor called...until it was too late. I drove around in the car to do made up errands. I continued to watch the time. I considered the possible times when a busy doctor might be free to place a call to one of his patients. During his lunch break? After normal business hours? At the approximate time of the message that he left me the day before?

No call. After 8:00 PM, I relaxed. He wasn't going to call that late. I needn't worry about receiving bad news that day. I slept soundly that night, the anxiety having wiped me out.

The next morning I prepared to wait again to hear the "favor". I tried hard not to spend more time analyzing the message. This was difficult when every half hour my husband would inquire whether I had heard from the doctor. His curiosity was morphing into anger and frustration, which did nothing to reduce my anxiety.

At 2:00 pm I decided I had to call the vet to ask a question about some medication my dog is taking. (It's comforting to have another family member dealing with medical issues even if she is about 105 years old in people years.) I had to make the phone call from my Blackberry because that was where I could most easily access the number. I said to myself, "this is the exact moment he will try to call." I placed the call. Veterinarians are not so different from oncologists. You don't just dial numbers and talk to them. No sooner had I connected with the not-so-easy-to-reach vet, that I heard the beep that indicated I had another call on the line. I immediately hung up on the vet to connect with the incoming call. Sure enough, it was the doctor on the other line. Why do things like that happen?

He said "Hi Amy. I wanted to ask you whether it would be alright to give your name to a colleague of mine who is writing an article about breast cancer screening..."  Feelings of well-being and relief swept through me. I told the doctor I would be delighted to participate. I also told the doctor that receiving a cryptic message from one's oncologist can be anxiety provoking for a cancer patient, and could he in future messages, leave more information about why he is calling so I don't have to go through two days of excruciating anxiety. I didn't get the sense he really absorbed my meaning.

I hurried outside to find my husband to tell him the good news. I suddenly felt the gorgeous warmth of the summer day, smelled the delicious floral scents of the yard, delighted in the green of the lawn and the new leaves on the trees. Everything was perfect and beautiful again. Except, I still have cancer.

That telephone message seemed to trigger all of the anxiety I used to feel during my pre-cancer diagnosis days when I anxiously awaited screening results. Ironically, I haven't felt that level of anxiety since I finally received my cancer diagnosis.

This feeling of waiting for scary news reminds me of a recurring dream I used to have when I was little. I was alone in my house when I suddenly realized that there were bad guys on my roof waiting to pounce on anyone who tried to escape. I had to decide whether to hide inside the house or make a break for my neighbors' house. My instinct was always that it would be better to confront the bad guys in open space than wait for them to find my hiding place inside the house. So I'd pick my exit and run like hell towards the neighbors. Sometimes the bad guys would catch me. I would quickly transform from frightened escapee to charming new collaborator. The idea was to get them to like me so much that they change their minds about hurting me.

I think the analogy here is that I have made the break from the house, have been caught by the cancer villain and am now working on charming  him so that he will change his mind about killing me. (And if that works, I'll have to try it on the vet.)