On a recent open enrollment (OE) visit, I met with an employee to help him through his OE, focusing primarily on his 2018 budget. However, I soon found out that his 2017 had not gone well. In the fall, he was diagnosed with salivary gland cancer.

Within weeks, he was facing surgery. His provider had told him that he must treat (remove) the tumor prior to metastasizing to his lymph nodes, which could kill him. However, the surgery would be difficult and recovery would be painful. He was informed that he could lose his upper left jaw bone and teeth, along with his ability to speak, chew, and taste. Since the surgery would open up his sinus cavity, he would also need to wear a “denture plug” to help with other breathing functions. Of course, there might many unforeseen complications.

Two days before surgery, he decided to seek a third opinion. He had already been referred to the regional “best in class” hospital after asking for a second opinion. The first diagnosis and treatment plan was recommended by his local [HMO owned] hospital, which also recommended immediate surgery. After fighting for a third opinion to be covered, he was denied by his HMO insurance (the payor). He had no out-of-network coverage, and since his request was deemed “not medically necessary” he would need to pay for a third opinion out of his own pocket.

About $10,000 later he found that he did not have cancer. The final scan revealed that the initial test was not well taken, and as he described it; “turns out the tumor was a shadow, just a shi**y picture.”

We continued to discuss his story in greater detail, but I’ll summarize his journey as follows:

  • Primary care provider visit for dry mouth
  • X-ray shows something suspicious
  • Specialist takes MRI scan (showing the “shadow”)
  • Referred to local HMO surgeon (recommends surgery, after reviewing one scan)
  • Second opinion from “best in class” regional hospital (recommends and schedules surgery)
  • Third opinion declined by HMO, but patient decides to pay out of pocket
  • Trip to Texas ($10,000 including travel, medical bill, tests, etc.)
  1. Texas specialty oncologist reviews scan, doesn’t like it, and orders:
    • New MRI
    • PET scan (which was never done by local HMO or regional hospital)
  2. New MRI could not reproduce the tumor.
  3. PET scan did not “light” in that area.
  4. Needle biopsy to make sure.

Result: No cancer

Keep in mind that I am the advisor who recommends these health insurance plans. At the time, I got paid a commission to negotiate a contract between the employer and the insurance company. I left that meeting feeling sick that I was involved (at all) in this type of care, and he still owes $10,000 in uncovered medical bills. Thankfully, he did not go through with such an invasive surgery.

The harsh truth is that misdiagnosis is common. According to the BMJ Quality and Safety Journal, 28% of all cancers are misdiagnosed; other surveys show as much as 60.5%.

Here’s a list of top misdiagnosed conditions and the unnecessary treatments provided:

  • 28% to 60.5% of new cancer cases
  • 67% of spine surgery
  • 30% of orthopedic surgery
  • 60% of bypass surgery
  • 50% of stent placements
  • 40% of solid organ transplants

For plan sponsors, here’s what these treatments cost, EACH:

  • $15,000 – $90,000 to treat cancer
  • $50,000 – $250,000 for spinal surgery
  • $25,000 – $75,000 for hip surgery
  • $70,000 – $200,000 for bypass surgery
  • $10,000 – $40,000 for a stent
  • $300,000 + for a solid organ transplant

Who is trying to control this cost?

Well, in my opinion, here’s who is not:

  • Local HMOs are not. Instead, they are trying to steer patients to the HMO’s hospital for treatment and payment.
  • National health insurance companies? Probably not, but let’s see:
    • Now that the ACA has a 15-20% markup cap (on claims), insurance carriers need these expenses to increase profit. Thanks Affordable Care Act!
    • Nurse practitioners who “case manage” your treatment are paid by the insurance company. Are they incented to manage costs? Now that higher claims equate to higher profit for insurance carriers, case management is becoming more of a marketing tool than an actual practice.

Here’s who can affect change: 

  • The employer who writes their own Certificate of Coverage and pays for second opinions from [condition specific] centers of excellence.
  • The patient who has access to their own medical records, asks questions and seeks council prior to invasive procedures.
  • An unbiased medical plan administrator who acts as the patient advocate.

Patients and their families are too often asked to make very difficult decisions without complete information or education regarding a diagnosis or treatment plan. Whether we like it or not, money does influence a provider’s treatment plan. The problem is, patients are making a life changing decision or trying to alleviate pain, both of which cloud judgement when making these decisions. It is much easier to accept a provider’s treatment plan when it’s assumed that they are the expert.

Unfortunately, the HMO model has created hospital systems that want to treat all patients and rarely refer out. Therefore, patients are not receiving the best care for their specific condition; they’re receiving the best care their HMO can provide, arguably with undue financial influence. In many cases, no treatment is the better option. Hospitals do not get paid if they don’t treat, likely driving the misdiagnosis rates north of 50%.  We need to encourage patients to seek opinions from national (or global) centers of excellence, specific to their diagnosis.

What can be done? 

First, patients and their families must take ownership of all medical records. Tools, like Globe Healer for example, are now available for very little investment and employers can sponsor this cost. These online platforms organize your medical records by patient, by date, and by condition. These records are owned by the patient, and allow for:

  • A clear picture of patient medical history.
  • An unbiased case manager or advocate who works on patient’s behalf.
  • Choice of provider for second opinions (rather than depending on your HMO referral).
  • Global opinion network.
  • Reduction of misdiagnosis and negative prescription drug interaction.

Second, employers must be willing to get involved. Otherwise, the decisions will remain under the control of the insurance carrier and the providers they pay.  Consider using a tool like Sympl Benefits The process looks something like the following:

  1. As an employee benefit, the employer sponsors an independent (unbiased) care concierge team.
  2. Schedule educational meetings to inform employees of the new tool. With Sympl, for example, each member has access to a case manager who communicates with the patient’s providers and organizes each record within a patient portal.
    • Stress the importance of a second opinion by using case examples and misdiagnosis statistics. Assure employees that they have a case manager who will help them.
  3. Understand the current second opinion coverage with your insurance advisor.
    • If your current coverage advises patients to stay within the local HMO, consider adding “extra-contractual” coverage for the aforementioned Top Misdiagnosed Conditions.
    • “Extra-contractual” means that you’ll pay for a second opinion, associated tests and travel expenses if deemed uncovered by your health insurance plan. It’s well worth it when you consider the hidden costs of an employee surgery.

Ultimately, we are asking patients to question or validate the opinion a medical expert and this creates an uncomfortable conversation. Also, most employers want less involvement in their employee’s medical care, not more. However, if we continue to operate according to the status quo, nothing will change.

Seventy percent of medical spending is negotiated through private employer health plans. Therefore, the influence belongs to the decision makers in these negotiations. Employers have 2 choices:

  1. Accept the status quo, hoping others create change
  2. Get involved and take control.

Wes Spencer,