‘Denial mills’ deprive patients of vital drugs

I’m a sick man, not a stupid one. Allow me to explain.

Four years ago, at the age of 22, I began to suffer from an array of inexplicable symptoms: unexplained fevers, joint pain, weight loss, neuropathy, constant pain and chronic fatigue, which continue to plague me to this day. Without knowing what was happening to me, I soon found myself in the fight of my life. Thankfully, I had health insurance through my father’s former employer. Two exploratory surgeries and three biopsies later, the diagnosis arrived – SVAP Vasculitis – an autoimmune disease that causes systemic inflammation of the blood vessels. The disease can be fatal.

After numerous unsuccessful treatments with different medicines, my doctor – a board-certified rheumatologist – decided to try Cytoxan, a chemopathic drug clinically proven to treat a variety of cancers and autoimmune conditions and first used against vasculitis in the 1970s. I would never have guessed that at age 24 I’d be so eager to start chemotherapy. A few days later, presumably after determining how much the treatment would cost, my insurance company forwarded my claim to the Medical Review Institute of America, a paid third-party reviewer, which denied my request for a medically necessary, potentially life-saving treatment. Not once, but four times.

My denials mirror an alarming national trend in the health care industry. A recent CBS “60 Minutes” broadcast highlighted the use of third-party denial mills by insurance companies for psychiatric claims that churn out denials at rates over 90 percent. Another recent report by NPR showcased a similar rate of denial for workers compensation claims in some states. Apparently, some doctors are willing to say anything for a fee.

Only after persistent efforts to obtain the denial letters from my insurance company and upon closer inspection of them did I realize that all four denials cited medical literature that actually affirmed the use of Cytoxan to treat my disease. Several of the denials also described Cytoxan as “experimental or investigational.” A strange way, indeed, to describe the medicine of choice for over 40 years.

But it gets stranger. The physicians that denied the third and fourth requests were urologists. Vasculitis is a disease of the immune system; therefore, any claims should be reviewed by a specialist in rheumatology, not by a physician outside of the realm of his or her medical specialty, especially considering that such an opinion could have life-threatening consequences.

These urologists performed their reviews under penalties of perjury, signing a statement affirming that they indeed have “the scope of licensure or certification that typically manages the medical condition, procedure or issue under review; and have current, relevant experience and/or knowledge to render a determination.” Furthermore, the Uniform Health Carrier External Review Model Act, passed in conjunction with the Affordable Care Act, states that a reviewer must “be an expert in the treatment of the covered person’s medical condition that is the subject of the external review.” These two doctors had neither the expertise nor the experience to make their opinions.

After my fourth appeal of its decision, my insurance company contradicted the specific appeal provision of our health insurance plan, telling me that all appeal avenues had been exhausted and its final answer was “no.”

Only after continued letters and the eventual involvement of an attorney did my insurance company approve Cytoxan. The approving review was written by a board-certified rheumatologist who cited the same medical journal source that the urologists had used to initially deny Cytoxan. The very first sentence of that source reads “Cyclophosphamide (Cytoxan) and glucocorticoids have been the cornerstone of remission-induction therapy for severe antineutrophil cytoplasmic antibody (ANCA) – associated vasculitis for 40 years.”

And just when I thought I was finally in the clear, my insurance company sent me the full bill for my first Cytoxan infusion, effectively denying coverage once more. So again I had to protest, but eventually it paid.

Through four spurious reviews marred with inconsistencies and fallacious reasoning, it is abundantly clear that the insurance review company made every effort to systematically deny me medically necessary and potentially life-saving treatment.

I complained to the Maine, Tennessee and Virginia medical boards where these doctors practice as well as to the various state attorneys general about their perjury. Only Maine’s board voted 5-4 to further investigate but then ruled 9-0 not to sanction the doctor. The states basically told us, too bad, you are not a resident of our state.

We also complained to the North Carolina medical board, which insisted that these doctors were outside of its jurisdiction. Its silence speaks volumes. Its feigned sympathies were insulting. By inexplicably not punishing or even further investigating the doctors for their denials, each state’s medical board is tacitly condoning negligence and risking the health of countless Americans.

How many others is this happening to across the country? My former health insurer provides insurance administration for thousands of employees across the United States. The Medical Review Institute of America likely reviews thousands of appeals each year. If it’s happening to me, someone suffering from a clearly defined disease with a clearly defined treatment, then it is undoubtedly happening to others elsewhere.

I was fortunate to have access to an attorney and a very supportive family who would not allow my rights to be denied. But not everyone is that fortunate. What will it take to hold these individuals accountable for their egregious misconduct and their roles in systematically denying medically necessary treatment?

This story was originally published March 30, 2016 at 5:35 PM with the headline "‘Denial mills’ deprive patients of vital drugs."