Jeffrey Lurie is the owner of my beloved Philadelphia Eagles.   He pays the players.  He picks the coaches.  But I think we would agree that his checkbook should not allow him to be the one who calls the offensive plays.  The coach should do that.

So why is it different in health care?

I have a patient who was diagnosed with polymyositis.  Polymyositis is an autoimmune disease that causes inflammation of muscles and generalized weakness.  It is treated with high-dose steroids to reduce inflammation and with medications, such as Imuran, methotrexate and IV immunoglobulins (IVIG) to suppress the immune system.   My patient has had all of these treatments without success. She continues to have weakness and is unable to work.  Options are limited, but there is one another appropriate medication to try.

Rituximab has been studied in polymyositis.  UpToDate recommends it for treatment of refractory myositis and in fact promotes its use prior to use of IVIG, which my patient has already received.

So I decided to start this medication for my patient, but Rituximab was denied by her insurance company because its use would be considered off-label for polymyositis and their guidelines do not allow it. (By the way, when did guidelines become mandates?) In any case, I would have to do the usual peer to peer to get the medication.

My peer to peer discussion was not with a rheumatologist but rather with a pediatrician who would not approve the drug because it did not meet the insurance company’s guidelines.  He recommended that I appeal the decision, which I did.  Three weeks later, I was informed that the appeal would take at least another month because there were so many appeals that had to be processed. What does it say about the insurer, that physicians feel the need to appeal so many decisions?   Clearly there is a great divide between practicing physicians’ opinions and this insurer’s guidelines.

An insurance representative assured me that she understood my frustration. I exploded, “Don’t tell me you understand!  You have never had to speak directly to a patient to tell them that their care is being denied.”

I asked if I could do a peer to peer with a rheumatologist, and was told, “No, you have already had a peer to peer.” I asked for an expedited appeal and was told, “No, only if the illness is immediately life threatening. Your patient will just have to wait.”

Ultimately, working through the Pennsylvania Medical Society, I was able to speak with the insurer’s senior director for medical health services for the northeast region.  She was extremely helpful (the only one who was) and ultimately the medicine was approved within 24 hours. Overall this whole process took several hours of my time during patient hours, and other patients were inconvenienced while I waited on hold trying to resolve this.

This case raises many questions.  Who should be making medical decisions (calling the offensive plays): the person/ company with the checkbook or the doctor (coach) who is taking care of the patient?  Insurers will say that they are not dictating care.   They are simply deciding what they will and will not pay for.  But when they decide this on the basis of medical information presented to them, they are essentially practicing medicine on patients they have never seen.  Is that what we want for our health care system?  Is that who we want calling the offensive plays?

So what are the solutions?  There needs to be much better education of patients and transparency as to what insurance policies cover.  Many patients have no idea how their insurance works.  Guidelines should be just that, guidelines, rather than mandates.  If a procedure or medication is denied, I the insurance company should be required to provide an explanation other than that it “does not meet our guidelines.”

A transparent rationale for denial, even if they simply were honest about the cost factor, would go a long way toward alleviating my and many other physicians’ frustrations.  Furthermore, a pediatrician should not be reviewing the care provided by a rheumatologist, any more than a rheumatologist should be reviewing the care provided by a pediatrician.

As a society, we must decide what we want from insurance. Our auto insurance does not cover routine things like oil changes. Our homeowners insurance does not cover house painting, but if it did, should the insurer get to choose the color of the paint?  Should health insurance cover routine things like doctors’ visits? If so, what exactly should routine care include?   Is the goal of insurance merely to protect us financially from catastrophic events?  These are all legitimate questions that need to be answered.

Also, we have to decide how much financial risk patients should be responsible for.  If an insurance company is footing the entire bill, it is understandable that they would want a say in how that care is delivered.  The question is whether they should have complete say.  This is not an easy balance to determine.

The ultimate question is how to practice cost cutting population medicine without sacrificing care to the individual patient, as is occurring with my patient.  Do we really want the insurance companies to be the absolute dictators of care?  If so, then they need to be held accountable for the decisions (denials) they make and the decisions they make must be transparent to physicians and patients

Insurers need to be cognizant of how their decisions affect individual patients’ lives.  We need open dialogue between insurers and practicing physicians re these issues to try to find an equitable compromise.  Our patients, and perhaps our profession, depend on it.

Mark Lopatin is a physician.

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