Electric EDGE
Web Edition of The Ragged Edge
March/April 1997
Electric Edge

Because the drug was awaiting final FDA approval and was not yet on the market, my insurance would not pay for any unknown side effect's treatment or damage. Not now, not next week, not the rest of my life.

Not according to


By Sally Rosenthal

Admit it, fellow Ragged Edge readers. Although you probably enjoy it as much as I do, we, from time to time, find ourselves thumbing through outdated issues of National Geographic or mesmerized by aquariums the size of Rhode Island in doctors' waiting rooms. Over the years, I've also used that lost time to make grocery lists and trade war stories with my fellow prisoners-in- waiting. Never, until recently, however, did I plot a personal revolution -- one that I'd encourage you to join.

Image: Palm trees The battleground was so common to me that I was almost lulled into a false sense of security. After all, I had been seeing this particular glaucoma specialist for almost ten years. Unlike many of the retina surgeons I also saw at the large, urban teaching hospital, he viewed me (I thought) as a capable human being -- no easy task, I realize, for those steeped in the medical model. After all, if a woman with cerebral palsy and mid-life blindness is seen as "capable," medical jargon and practice might have to be completely rewritten. So, I wasn't expecting a battle during that appointment -- just a new, not-as-yet-FDA-approved drug, the last-ditch effort in a long struggle to control my glaucoma.

Tired of constant nausea and headaches and out of other surgical and medical options, I had signed up for and been accepted by the foreign pharmaceutical company's "compassionate need protocol". My paperwork had been faxed to Sweden, the drug had passed through customs, and there I sat next to the aquarium waiting to pick up the medication. Although I wasn't hoping to regain any sight, the thought of good balance (OK, it's a relative term for me) and no more nausea seemed promising. The cynic in me argued that it was probably too good to be true, but I pushed her voice to the back of my mind and squinted at the coral and fish.

After forty-three years of disability, I should have known that my inner cynic was onto something. As the technician explained the protocol to me, she commented that my insurance would not pay for the drug or any of the required testing since it had not yet received its final FDA-approval. "Fair enough," I reasoned, figuring I could manage the extra payments. Even the possible as yet unknown side effects didn't concern me too much; almost anything was better than the way I currently felt. I'm basically a pragmatist; in the world of chronic disability, you pay your money and take your chance.

It was one of the clauses near the end of the protocol release form, however, that spurred both the cynic and the pragmatist into war. Because the drug was awaiting final FDA approval and was not yet on the market, my insurance would not pay for any unknown side effect's treatment or damage. Not now, not next week, not the rest of my life. Read between the lines here, my friends. This translates into "Throw your health insurance away for the rest of your life." Insurance companies, never overly enthusiastic about insuring those of us who cost them money, would be only too willing to pin any future illness on my taking a non-FDA approved drug.

When I finally met with the doctor, I was livid and asked him how on earth he could encourage anyone to sign such a form. He replied that he didn't encourage it, but "most people were desperate." Read between the lines again, folks. Desperate not to be blind or disabled. Desperate not to be like us.

Still angry, I left the office and dropped a quarter into the pay phone in the hall. I scheduled an appointment with a homeopathic physician whom I had seen for successful treatment of back pain. A few appointments later, my symptoms have lessened, and I'm working with someone who really does see me as capable. While I'll continue to be monitored by the glaucoma specialist, my true healing takes place through holistic alternatives in an office that has no large aquarium or backdated National Geographics. No release forms or "desperate" people, either. And I still had my insurance card tucked safely inside my wallet when I left her office.

Sally Rosenthal is a freelance writer.

Bill Bolt on the numbers
Celia Henderson on SSI
Sally Rosenthal on an insurance pitfall

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