Thank you, Mr. Churchill. I think this is very good advice. I like very good advice.

On Thursday April 7, exactly one week prior to my scheduled ileostomy reversal at MD Anderson and 4 days prior to my pre-op testing, I learned that my appeal had been approved by BCBSTX and I would be returning to Houston for my final surgery. The two ends of my gorgeous small intestine would be reconnected by Dr. John Skibber, and I would be free’d from the suspended animation of the last year.

In the weeks leading up to this, I felt as though I was living in the dystopian and surreal world of the film “Brazil,” where a totalitarian, bureaucratic government with it’s dysfunctional and farcical systems made and changed rules at their whim, always looking for another stamp to be stamped, “t” to be crossed, or “i” to be dotted. In short, there were times I thought I might be going crazy. Under the nurturing blanket of my new Diazepam prescription, and the advice of my once again brilliant sister, on April 5th I threw a hail Mary pass and called the Texas Department of Insurance to lodge a verbal complaint against BCBSTX with a human. Their response was swift and efficient. I was once again informed that part of the deal with BCBSTX dropping this last individual PPO included mid-treatment cancer patients maintaining continuation of care, and that I was never supposed to be forced to jump through these hoops. They told me that in the months preceding this they had received multiple complaints regarding network adequacy. Then the faceless angel on the other end of the line told me that one of their agents would be contacting BCBSTX that day on my behalf, that she understood the urgency of my situation, and that they would be going to work on my complaint immediately.

Early that afternoon a TDI representative called to get a few more pieces of information and informed me that she had spoken with BCBS. She seemed confident, so confident in fact that she told me that if I didn’t hear from BCBS about my appeal by the following afternoon to “call me”, that if I didn’t like what they had to tell me to “call me”, and that in general if I were displeased with my service by BCBS in anyway to “call me.” Later that afternoon I had an incredibly pleasant and reassuring call from a BCBS representative. By Thursday afternoon my appeal had been approved, and I was on schedule for my pre-op visits and surgery the following week. I can’t begin to express how incredibly impressed I was by the rapid response by the TDI. While the written complaint process may take up to 3 months to process, and they told me the written information is important to have on file, the efficiency and efficacy of this agency in righting this wrong was mind-blowing. I am grateful in an overwhelming way.

BCBSTX spent months hoping that I would get tired and resign myself to an in-network surgeon. Suckers. I learned these very, very important lessons during this process that I urge you to pass on to anyone you know who is going through this process:

• Appeal: 95% of first time denials are never appealed. They are banking on the fact that you will think it is entirely to much trouble to go through the appeals process. It is a hassle, but it’s worth it. If they deny that appeal you have the right to engage an Independent Review Organization (IRO) to look at your case. You can request a peer to peer review so that your physician may speak to another physician regarding medical necessity. You have and rights and you have options. Exercise them.
• Watch out: I was amazed to find out how spot on my sister was when she told me to “trust no one” in their organization. She counseled me that they would look for any excuse to deny my appeal, and it was true. The day before they approved my appeal, a nurse case manager from BCBS called me to check in and make sure I had all my needs met. We discussed that their physician finder service was out-of-date and a surgeon who had been recommended was not on their list on in-network providers, but actually worked with Texas Oncology and took my insurance. 2 hours later I had a call from my representative in the appeals department stating that the nurse case manager had told her that I had found an adequate surgeon in Austin. Had I not complained about patient/caregiver privilege, deceptive business practices, and calling the states nursing association to file a formal complaint, I think this could have derailed my appeals process. Tricky, trifling, nurse case manager bitch. Trust no one. Unless they’re from the…
• Texas Department of Insurance (TDI): If you really feel as though you have a valid complaint, and that your insurance company is wrong, call the TDI immediately (or your states governing agency for insurance) and file both written and verbal complaints. Go ahead and begin the appeal process, but find out what your rights are. When I think of how much time and energy I could have saved if I had called them after my initial denial…wait, I’m not thinking about that. Ever. I will always be amazed at how quickly they made things happen for me. Not only did they do their jobs ridiculously well, but they were kind, and at that point I desperately need that kindness.

So that was it. After all that time and effort, that was it. Monday April 11 I went to MDA for a barium enema and proctosigmoidoscopy. I won’t go into detail about either because they aren’t very pleasant, but both are performed to check for perforations in the colon and rectum. Dr. Skibber was once again incredibly pleased with my results, we discussed the coming surgery, and I went home for two quick days to prepare for one more left hook from my rectal cancer diagnosis. What a year. For the love of all that’s holy, what a year.

Mascara tears and ugly crying.

Insurance companies. Fucking insurance companies. My mother asked me not to curse as I wrote this, but the fact of the matter is I feel like cursing when I refer to my fucking insurance company. After my final disconnect in February, I thought I would have the luxury of convalescing in peace, regaining my strength, and finding peace of mind in preparation for my final surgery. However, once again I find myself dealing with a financial institution representing itself as an insurance provider. I cried my last 500 mascara tears over their deceptive and incompetent services last week, and now I have some things to say about the way insurance companies are conducting business, and I think we all need to be screaming mad.

When Blue Cross Blue Shield of Texas (BCBSTX) dropped my excellent individual PPO at the end of last year, I had many questions as they tried to sign me up for their “best” individual HMO plan, the most important regarding my continuation of care at MD Anderson since not a single retail marketplace HMO in Texas would now be contracting with them. At the time, I was assured that I would qualify for exemptions to have my ileostomy reversal and other necessary procedures performed at MDA, so reluctantly I signed up. I wrote previously about the debacle that ensued at the beginning of January when the new PCP they assigned me had actually switched to dermatology, my chemo was delayed for a few days, and I had to scramble, kick, and scream not to have further delays in my treatment. At the time I had a sense of impending doom regarding my future treatment by BCBSTX, but I HOPED that what I had been told in November was accurate and I would have access to my surgical oncologist. I, apparently, am a fool.

Two weeks before finishing my chemo, I was contacted by Dr. Skibber’s nurse at MDA with the dates for my ileostomy reversal. I promptly made an appointment with my PCP so that she could send the referral to BCBSTX. The referral was promptly denied because some smug general surgeon in Austin, who is in-network, agreed to take down my ileostomy. BCBSTX seemed to think this was a fine solution, and I think this is a fine time to dive into continuation of care and “network adequacy.” My surgeon at MD Anderson is one of the finest low rectal surgeons in the country, and it is all he does all day long. The primary reason I inconvenienced myself, my friends, and my family by pursuing treatment at MDA was that Austin, TX doesn’t have a single physician who is dedicated to low rectal or colorectal oncology, and most certainly not a specialized low rectal surgeon. Because my tumor was very low lying, the risks of my having a permanent colostomy were high, and to avoid this I sought the specialists, who just happened to be a short 2 1/2 hour drive to the east. Under their superlative care, not only did I experience an awe inspiring shrinking of my tumor after the summers chemoradiation, but I came out of surgery with a temporary ileostomy and superfine abdominal scar that doesn’t resemble a hatchet job. It would make sense, to anyone who indulges in logical thinking, that the specialist who performed the initial surgery would be the one to reverse it, that the man who cut me open so expertly the first time would do it the last time. Who in the world would consider it adequate care for a general surgeon who has NEVER met me or seen my internal organs to perform the take down of my ileostomy? We are talking about a lifetime of bowel function, and I’ll be damned if I’m going to let some yahoo screw it up when I can easily continue my care with Dr. Skibber, low rectal surgeon extraordinaire.

When I called asking if MDA could submit the appeal, a member services representative firmly told me that my PCP had to submit the appeal, which I would receive in the mail within 10 business days. I was expressly told that I should fax my PCP the appeal immediately upon receipt so that they could pursue the referral. I did this, with a letter from Dr. Skibber encouraging continuation of care and stressing the complicated nature of the original surgery. A couple of days later I contacted my PCP’s office to make sure they had received all of these documents via fax, and was told by her referral coordinator that I, the patient, had to submit the appeal. I once again contacted BCBSTX member services and was informed that my PCP had to submit the appeal; 45 minutes and two transfers later, I spoke with someone who, in an “aha” moment, revealed that yes, it was my responsibility to submit the appeal. And I did. With my letter from Dr. Skibber, multiple medical records, and a concise, yet comprehensive, explanation of why continuation of care was medically necessary for the best outcome. A couple of days later as my chemo port removal was delayed by a week because the surgeon who originally placed it was now out-of-network, which was missed until a day prior to the removal, I learned some fascinating and painful new information. The referral coordinator from my PCP’s office informed me that she had been told by a medical director at BCBSTX that patients mid-chemo treatment and 3rd trimester pregnancy were NOT supposed to have their care interrupted. Like the gentleman told me as I was signing up for my sucky HMO, I should qualify for exemptions to continue at MDA. The following day I spent 3 hours on the phone with member services representatives at BCBS, working my way up the chain to a supervisor who eventually let me know that while this was historically true, on January 15, 2016, BCBS had issued a memo stating that no more continuation of care exemptions would be honored. For the first time in his experience, cancer patients and pregnant ladies were getting the shaft, and they had done nothing to inform me, as the consumer, that this was happening.

I wish I could describe what it feels like to get this far, and have to push more, fight more, and beg more. Why am I having to beg to have my surgeon continue with my care? Why does it matter that some general surgeon said he would do the surgery? Does that make him infinitely qualified? And all I can think about as I’m going through this daily round of phone calls, emails, and general ridiculousness, is that I have a Master’s, I’ve worked in healthcare, and I have a lot of assistance from my brilliant sister in navigating the system. How are people who don’t have these advantages supposed to fight for themselves? I want you to imagine your grandparents, your elderly parents, your lay person trying to work this all out. Think about someone with a full-time job and a family at home, even if they have the knowledge, where do they find the time? I think about it all day long. I try to figure out who else to call, who to ask for help, and what higher powers I need to appeal to. And guess what? Do you know what the most frustrating part is? The people who work at BCBSTX barely know what’s going on. Everyone has a different answer or no answer. The medical director who denied my initial referral was a pediatrician…not even an oncologist, let alone a surgeon, and they are considered qualified to make a decision that affects my life so completely? Uggghhhh!!!!!!! I understand why people just give in and let the system take over, why they go to generalists, and why they stop fighting altogether. I’m absolutely exhausted and want to give up everyday, but I can’t. It’s not in my DNA to let these bastards short change me on this one.

BCBSTX has my appeal, I have filed procedural complaints with their offices and with the Texas Department of Insurance, and if worst comes to worst, I will beg MDA to declare me medically indigent and treat this as charity care. BCBSTX is screwing me over because they have taken a scorched earth stance with MD Anderson. This isn’t about the patients for them, it’s about the fact that MDA wouldn’t come down to an unreasonable payment for their procedures so that the number one cancer treatment center in the United States can continue to offer amazing care and fund research that maybe, just maybe, will one day make someone else’s journey much easier and less painful than mine has been. It’s about shareholders, corporate bonuses, and money. Like I said before, fucking insurance companies.