by Charles H. Babb
Perhaps you recollect me. We met over the phone in 1996 or 1997 and shared stories before I became a subscriber. My tumor was 3 ½ cm, acromegaly. After a surgery and 26 subsequent stereotactic radiation treatments, my brain was burned in 14 areas. I am mostly recovered from that now, but lacking medical insurance. Now I must pay cash for annual endocrinological tests, bi-annual MRI's, and my prescriptions.
In September of 2002 in California I learned that Androgel 1%, 5 grams, which I am prescribed for the rest of my life - had been repriced on the retail market with an amazing 400% mark-up, directly as the result of, it seems, a corporate buy-out. According to the stories of two knowledgeable pharmacists: "Early in 2002, Solvay Pharmaceuticals, Inc., having purchased Unimed Pharmaceuticals Inc., then selectively decided to reprice Unimed's product AndroGel 1% metrically. Because each packet or unit dose contains 5 grams, the new price became five times the old price". The price immediately jumped from $38. to $189 per quantity of 30. "AndroGel" is synthetic testosterone and a controlled substance, hence not available through foreign markets, although Canadian suppliers of minimum cosmetic quantities of testosterone may also have repriced.
While I may assume that most male pituitary tumor patients require permanent hormone replacement therapy, I really do not know how many of us there might be, captive in this situation. Because of the successful surgical removal of my pituitary tumor –and most of my pituitary gland– ongoing hormonal replacement therapy is now a necessity, and the hormonal drug testosterone is essential. The Pituitary Network Association Website presents a Pituitary Patient's Bill of Rights. Under this doctrine, would not the fact that Unimed previously made a fine profit on "AndroGel", before any buy-out, be recognized -- and Solvay's metric repricing scheme be considered, at the very least, somewhat unethical? Perhaps this should be looked into, especially if many of us are affected.
As a totally unforeseen consequence of the forementioned successful surgery, I became uninsurable. My monthly premiums jumped from $125 to $950 per month within four years. Thus at age 56, I have become a "cash payee". A 400% increase is simply unaffordable. I can't believe that I am alone in this dilemma. Can the resources of the Pituitary Network Association help me to determine the number of men like myself who are thus affected? How many male pituitary patients, and their insurers, must bear this artificially created and greatly amplified cost?
As a class, we are impacted by decisions of both insurance companies and pharmaceutical manufacturers. Manufacturer's decisions made arbitrarily to increase the price of medications directly affects our insurer's costs. And, we are unrepresented as a class, unlike other victim's of better known diseases. Will you help me accurately determine the current and projected numbers of pituitary patients on testosterone replacement?