Chronic Illness and the Question of “Access”: A Primer/Manifesto in One Post (RIDES AGAIN)

NOTE: This post was originally published on January 14th, 2014 at 23:09 CST. It was subsequently removed from my blog in order to make some minor edits and clean up the text. This version has been slightly revised.


This post is a sketch of ideas that have been coming together in my head lately. I suspect I’ll probably revise it (even more), expand upon it, and link it to other, forthcoming posts.

You see, I composed this in the wake of conducting more than 12 hours of phone calls—over the course of 4 business days—necessary to get just 1 medication filled. In the coming weeks this scenario will repeat itself (since I take more than half a dozen different medications) but for now the biggest battle has been won. [1]

The reason why payors do not like to pay for the medication I just wrangled and sweated to get approved is because this particular drug costs between $62,000 and $112,000 per year per patient.

When the average person imagines “using insurance” or “filling a prescription,” they probably envision swinging by a local Mom and Pop pharmacy and picking up a bottle of antibiotics. When you live with a chronic illness, though, this pedestrian image bears no resemblance whatsoever to the knock-down, drag-out realities of negotiating with for-profit insurance corporations and “specialty pharmacies” that deal exclusively in expensive, often injectable, drugs.

Since being diagnosed with Multiple Sclerosis in July 2007, I’ve become a veritable expert in navigating insurance companies, pharmacies, drug manufacturers, and like. Rarely does a month go by when I don’t have extensive dealings via telephone and/or email with bureaucrats from various companies or institutions. You might say that, in addition to my regular full-time job as a college professor, I have a second “part-time job” slogging my way through the sadistically labyrinthine bureaucracy that is U.S. health care.

I came of age with both my illness and the U.S. healthcare system at the same time. I was one of the lucky ones: that fateful summer that I went to bed one night and woke up the next morning completely numb from the waist down on the left side of my body was the summer that Romneycare was being implemented in Massachusetts, forcing my university to finally provide us with decent health care and thereby protecting me from having to file for bankruptcy at the age of 27.

In the vague gap of those months between my M.A. and Ph.D., I mastered other combinations of letters—a new lexicon consisting of terms like HMO, PPO, PRN, CBC, sub-q, coinsurance, co-pay, creditable coverage, prior authorization, utilization review, and deductible. It is no coincidence that insurance companies have developed their own dialect: they’re counting on those of us who need to access services being unable to understand anything and thus unable to actually avail ourselves of the supposed “benefits” attached to our insurance policies.

For me, learning how to work the system was a matter of survival, and so I learned and learned quickly.

Here are a few of the most valuable lessons from the past six-and-a-half years of my life:

1.) The single most important tool that you can deploy in dealing with insurance bureaucracy is persistence.

Not forcefulness, not pathos. Persistence. Part of the reason that insurance companies are bureaucratic is to make it difficult for patients to access care. That’s the entire point. The insurance company is counting on the vast majority of people being too overwhelmed to continue fighting and following up. The insurance company is counting on not having to pay because you gave up. So don’t give up.

A technique that has worked well for me is to call the insurance company and/or other corporate entities at least once a day when I am trying to get something (usually a prescription) approved. An easy way to do this without being accused of harassment is to simply state each time you call that you’re “hoping to find out what the ‘status’ of [your] claim” is. Bureaucrats love neutral words like “status.” In fact, “status” is like a lullaby to most of them. “Status of my claim.” Repeat after me: “Status of my claim.”

During my most recent effort to get a new insurance plan to pay for my MS medication, I found that the pharmacy, specialty pharmacy, and insurance company (three separate entities with little to no communication between one another despite allegedly needing eachother’s “approval” to process the prescription) were so startlingly disorganized that it became necessary to call all of them at least twice a day, every day. I did. [2]

If your initial claim is denied, appeal. Appeal multiple times. Have your doctor(s) appeal. File documents. Continue to appeal and call daily until your claim is approved.

Yes, this is exhausting beyond belief. But no, you probably won’t get your medication (or other medically necessary benefit) unless you make it clear that it will be easier for the insurance company to just appease you than to wait for you to go away.

Be a giant pain in the ass. You’re worth it.

2.) Get your team together.

If possible—but only when necessary—enlist your physician(s) and/or employees from their offices to assist you. Two or three people calling the insurance company multiple times per day is more effective than just one person calling. Because this takes time away from your doctor(s), though, you probably shouldn’t ask for their help unless the situation seems dire. I typically won’t enlist help from doctors until/unless I’ve been trying for seven business days or longer without success to get my medication approved.

3.) When calling the insurance company, other payors, or their affiliates, keep in mind that you will encounter many different interlocutors with different personalities and adjust your own phone personality accordingly. 

Your goal is not only to be persistent as hell, but to glean information from the insurance company and, whenever possible, to cultivate allies within the bureaucracy itself. Sometimes you will talk to employees who are absolutely unmoved by your plight. Earlier today, one lower-level employee of a specialty pharmacy laughed out loud when I told her I was on the verge of running out of my medication. [3] It would have been easy to explode on her or cry in despair, but I sensed that this reaction would do nothing to sway her, since I perceived her as being indifferent to begin with. Instead, I kept asking her a series of questions regarding the “status of [my] claim” and “where we currently are in this process” until she inadvertently gave me the telephone number of a department higher-up in the chain of authority.

I was then able to call this number directly, state that I had obtained it from “Employee X” who “suggested [I] call,” and get the answers to my questions. It turned out that the lower-level employee had access to far less information about the “status of [my] claim” than individuals in this higher-level department. From this point forward, I never again called the lower-level department, which was (uncoincidentally) designated as being “for patients.” I just dialed the new number (“for physicians and prescribers”) and dealt with upper-level employees who were able to expedite the processing of my prescription and get it approved within a matter of hours.

Since bureaucrats are obsessed with chains of command and hierarchy, you can use the divisions within their organization to your advantage. Play upper and lower-level employees against one another. Tell the upper-level employee to whom you’ve been connected that the lower-level employee “has no idea what she is talking about.” If the upper-level employee then laughs—and they usually do—you’re golden. Take the opportunity to praise the upper-level employee (“You’re so much better than that other department”). Don’t worry. You can also call lower-level employees back and tell them the exact same thing (“You’re so much better than…”). You will get your medication.

On a related note, if you catch a bureaucrat who seems to especially relish his or her power over you (such as making a point of saying things like “I control whether this medication gets approved”), then it can be helpful to address the person as “ma’am” or “sir,” even if you normally don’t use these forms of address. Try to convey deference when you deploy them. Sometimes people just like to establish their dominance—or what they assume is their dominance—over you and will ultimately carry out your wishes if you first play the part of the submissive, passive “subordinate.”

Another useful technique is called mirroring.” This is when you consciously attempt to mimic the speech patterns (intensity, volume, general affect) of your interlocutor. Laugh at their jokes. Speak firmly or softly. Pretend that you, too, care about the weather outside. [4]

4.) Be meticulous: keep notes, dates, times, and be prepared to quote from past conversations with other employees as well as your current interlocutor. 

Nothing catches an insurance company off guard more than quoting from previous phone calls. As a special touch, I like to begin the quotation by stating the date and exact time (hours and minutes) at which the previous conversation took place, as well as bracket the quotation with the words “quote” and “endquote.”

For instance: “Well, in my conversation with Denise at 5:42PM Central Standard Time—which would be 6:42PM Eastern Standard Time—on Friday, January 10th, she stated that I quote “needed ‘approval’ from the insurance company” endquote, but I just got off the phone with Linda from the insurance company and Linda alleges this is not true. Can you clarify?”

If you can do this from memory it is excellent, but don’t be afraid to take notes or even audio-record all of your calls. (If your state requires it, you have to inform people that you will be audio recording them prior to doing so.) The point is simply to convey the impression that you’re keeping extensive logs of all of the insurance company’s activities. This is subtly threatening, as it hints at the threat of potential legal action should something happen to you (such as being forced to go without a medication you are entitled to and having to be admitted to the E.R. as a result of the insurance company’s failure to process your claim in a timely fashion). Never mention legal action. Just imply that you are extremely thorough and have your shit completely together. Any insurance bureaucrat worth their salt will not mess with someone who seems to be taking copious amounts of notes.

BONUS: if you can quote from the insurance company’s own literature on your policy—including the page numbers of the document—you will virtually always get your claim approved. It’s fun to read and highlight these 200-400 page documents and have them at the ready whenever you call.

5.) Always, always, always be polite—remember, these people have power and the power to abuse that power—but don’t be afraid to challenge your interlocutors when you believe they are not correct. They’re counting on your ignorance, so surprise and disarm them with your research.

In one instance some years ago, when I was getting ready to go onto a new employer-sponsored plan in a New England state, an insurance company rep blandly told me that my “pre-existing condition” wouldn’t be covered for 6 months under the new plan.

However, since I had already downloaded and printed the 400-page document detailing all the parameters of my new plan, I was able to pull out the page on “pre-existing conditions,” which explained that my new employer’s plan did NOT have a “pre-existing condition clause.”

I calmly replied: “Ma’am, on page 267, under ‘Pre-existing condition provision,’ my employer’s plan states that it does not have any ‘pre-existing condition clause.’ Are you able to verify that this is the case?”

Once she also pulled the plan document up, she confirmed that I was right, and my medication was approved for coverage within minutes. [5]

6.) Find allies within the system and work them.

This is related to items 1 and 3. If you’re executing those steps correctly and have become a “regular caller,” you will invariably encounter allies within the bureaucracy. You can exploit these valuable assets and use them to achieve your own ends.

For example: today I was told by the specialty pharmacy that they still couldn’t fill my medication because they “still needed approval” from my insurance company. The thing is that my insurance company does not cover my prescriptions—rather, those are handled by a separate entity. I knew that the insurance company per se had absolutely nothing to do with my medication being approved or not approved by the specialty pharmacy. [6]

I decided to call the specialty pharmacy’s bluff. I called the insurance company and explained the situation. The insurance company rep—who really didn’t care whether or not I got my medication, since her specific company would not have to pay for it regardless of whether or not it got approved—found my woes with the specialty pharmacy both humorous and exasperating and asked: “Do you want me to start a conference call between the three of us—you, me, and the pharmacy—so I can tell them directly that we have nothing to do with your medication being approved?”

“Please do,” I responded.

Within 10 minutes of hanging up with the specialty pharmacy, I was then calling back—with the insurance company on the line—and exposing the pharmacy’s bluff. I had the insurance company rep state to the pharmacy rep that she and her company had nothing to do with my prescriptions, and then had the pharmacy rep acknowledge to me that, in fact, what the insurance company rep was saying was true.

I got my medication approved and filled within a couple of hours after this conference call.

Remember that most of the “steps” any bureaucratic entity makes you go through are pretty much nothing but hoops, in the purest sense of the word. These are obstacles being placed in your path in hopes that you will become discouraged and give up—and they won’t have to pay for your medication or treatment. Show them that you are not going away. [7]


1 – Actually, the scenario didn’t end up repeating itself because some members of the executive branch of Express Scripts and its subsidiary, Accredo, reached out to me personally and made sure I got the rest of my medications quickly and painlessly. I am especially grateful to Dr. S and Mr. G for all of their help, and for keeping the lines of communication open.

2 – When I wrote this sentence I had not yet figured out that Accredo, the specialty pharmacy, was a wholly-owned subsidiary of Express Scripts. Hence to say that it is a “separate entity” is not entirely accurate. It is separate in the sense that it is EsRx’s pharmacy for specialty meds (not to be confused with the main pharmacy for non-specialty meds), but it’s owned by EsRx.

3 – I found out later from a reliable source that the employee’s laughter was in fact nervous laughter. While in retrospect (and with a 3-month supply of my medication tucked safely into my fridge) I am able to empathize with her, it is my hope that she can also now imagine how her laughter might have pained me or any other patient in a similar situation.

4 – I have found these techniques to be particularly useful when dealing with certain major insurance companies.

5 – A keen-eyed reader suggested I might edit this paragraph since the concept of the “pre-existing condition” no longer exists (as of January 2014, with the enactment of Obamacare). However, I insisted I wanted to leave it in because it serves as a kind of “historical record” from the not-too-distant-past of the inhumane and draconian punishment and abuse of chronically ill patients under the for-profit health care system of the United States. Obamacare has made this system only slightly more humane—for instance, by abolishing the concept of the “pre-existing condition.” The entire system is still utterly brutal in its punishment (yes, punishment) of sick and disabled people. I will post more on this topic in the near future.

6 – In fact, many major insurers now farm the administration of their prescription benefits out to PBMs (although sometimes the insurance company will not tell you it is doing this).

7 – It was pointed out to me that these hoops and obstacles may or may not be intentional on the part of any given bureaucracy. This is a fair qualification. In some cases, a bureaucracy is so labyrinthine that the hoops and obstacles may well be simple error and oversight. But in other cases—as with most major insurance companies—the hoops and obstacles are quite intentionally placed in an effort to prevent the insurance company from having to pay out. An insurance company that is also the payor only “wins” when YOU don’t receive care. Thus, your interests and those of any for-profit insurance company are diametrically opposed when the insurance company is the payor.

[Version: 3/5/14 of post, last updated 00:27H CST]

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8 Responses to Chronic Illness and the Question of “Access”: A Primer/Manifesto in One Post (RIDES AGAIN)

  1. Monica Blessinger says:

    it was so refreshing to read this. I just went through this same thing, and with this same company only a week ago. although my battle with them lasted from January second until only last week and sadly got to the point where my husband had to begin speaking with the reps because it was actually causing anxiety attacks whenever the phone would ring and say “Tennessee” or i would have to call for another battle royale with these people. I did end up getting my MS medication but it took calls from my dr. the drug company and my insurance company daily. This company is a mess

  2. Reblogged this on stitchgnomercy and commented:
    As someone with chronic illnesses & disabilities, this was a really helpful post on how to deal with gatekeepers. I only wish I had the spoons to do this as effectively as she does it!

  3. natty7777 says:

    What a process. Applause to you for your tenacity & mastery.
    The Canadian process has snarls, but not to that extent.

  4. ellymayh says:

    I too have MS and have had it since 1985. I came across your site quite serendipitously. I have been wanting to “blog” about my screwed up life for years and even downloaded WordPress. But in addition to my physical disabilities, my MS has caused cognitive deficits—I can’t remember ANYTHING and thinking logically and reasoning are long gone. At any rate, the idea of even attempting to begin such an enterprise is still overwhelming to me. I could probably talk for hours to somebody like you, but putting an intelligible web site together is beyond me right now. BTW, I also used to go to Brigham and Women’s Hospital for monthly infusions of various poisons and my doctor was Howard Weiner. I worked at Harvard and lived in Belmont, Arlington and Watertown. I miss it there. I live on Long Island now and hate it. Good to “sort of” meet you. 🙂

  5. Excellent strategies, applicable to all life situations when dealing with the force denying the person necessary things or services. Nothing can be compared with the fight for life and health, but I used very similar techniques in my academic life. Sometimes it is like a game of chess, you anticipate their move and block them in the corner, so they have no other choice that to surrender. And if you deal with the same people on continuous basis, they usually get the message that you will get what you have a legal right to. I agree. it’s exhausting, but it gets the result. However, it becomes more difficult to apply when dealing with situation of being very sick without diagnosis for prolong period of time. In that case I could not specify what I am asking for. But it’s completely another problem.
    Brilliant writing! Makes me feel proud to be human.

  6. Catherine says:

    Managed care at its finest! Great outline! Thank you for sharing!

  7. Jenny says:

    Oh dear Lord I’m at my wits end with Accredo. We live overseas so we don’t have the luxury of calling multiple times a day or even a week. My husband has Crohns and we’ve been trying to get his meds filled since mid July. Thank God he had a little bit if a stash. I don’t know what else to do. We’ve called, the doctors office has called, we’ve called some more. Every time we call we get a different story. I now have a call in requesting a supervisor, again. How can I get above this chain of people who are absolutely no help whatsoever and get to someone who can talk to my husband’s doctor’s office AND to me so we can finally get this settled? So blasted frustrated.

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