~a column by Colleen O’Brien
Have you ever had a “friend” who gave you really good street drugs for three or four months, and about the time you were asking him to hurry up and get back to you with more, he started charging you for the drugs? It’s a bait and switch game that leads to things lethal.
I have not experienced the above on a streetcorner, but I have experienced it from a pharmaceutical company.
With the onset of a second attack of rheumatoid arthritis after 22 years of being free of it and after a prolonged wait in line, I signed on with a rheumatoid specialist. He told me he could put me on a drug called Orencia, purposely made for inflammatory diseases like rheumatoid arthritis . . . for free.
I hurt so badly, I didn’t care what he gave me; the free part of it an enticement but not the important one. I hurt when I blinked, let alone tried to turn over in bed, get out of bed, walk normally, open a bottle, wring out a washcloth.
After filling out a “plea” form from Bristol Myers Squibb – the application for “scholarship,” I “passed” entrance into the free-of-pain, free to my wallet drug infusion twice a month. I did have to co-pay $35 for the bi-monthly office visit to the RA doc, along with $20 for the shipping of the drug to that office twice a month.
It is indeed a wonder drug. I could walk like I’d always walked – fast, long strides. I could sit down and get up without pain. I could open jars and pull weeds and fine-line my eyes. The world I’d thrived in was back again – the old chestnut of “Better living through chemistry.”
Each December, I had to fill in a new plea to Bristol Myers Squibb for the coming year. The questions changed slightly – no discernible reasoning I could see; and even within the form, there was a line that said “Please note that program rules are subject to change without notice. Additionally, we reserve the right to stop providing your with ORENCIA* at any time without notice.”
Forewarned is supposed to mean fore-armed, but I was in Happy Land – no pain – and I gave no heed to this pull-the-rug-out-from-under-one’s-feet clause.
Until it happened the third year I filled out the application form.
I was declined three times, the last two after pure begging as encouraged by my medical office.
No response, except that the doctor was no longer receiving Orencia through the delivery service for me, so I had no more appointments, which I had to call and ask about because I was no longer kept in the loop.
Six weeks without it, I still felt fine. The seventh week, I began to feel weak. I deteriorated from there to a point where two friends called my daughter to get to me as soon as possible and see what was going on – I was not answering the phone, the door, attending my favorite group of writers, and so forth. When my girl showed up the next day from four states away, I did not have the strength nor the will to stand up and hug her.
She got me to my general practitioner the next day, and he gave me an emergency drug called Prednisone – a miraculous pill that will relieve you of pain, but your eyesight might suffer, your skin will bruise, and you won’t be able to sleep. I’d been prescribed it before while waiting for an official RA drug that only an RA professional can disseminate (my GP cannot, so I was told). The waiting time for a rheumatoid arthritis specialist is five to seven months in most states; in California, I hear, it is 12 months. This hints of extremely poor longview to me, but there it is – too many inflammatory-sufferers and not enough specialists.
During that first time waiting for an RA specialist and prescribed the pain reliever Prednisone, I drew a heart on my calendar each time I took the pill – it kept me as Colleen, not the feeble half a human struggling to get out of her chair. It also made me understand drug addiction: if the drug, illegal or prescribed, makes you feel better, you will soon count it as your good friend, no matter what it’s doing to the rest of your body, brain, psyche. Pain is a true leveler.
The question on the application form that disqualified me from receiving Orencia the third year of my begging: “…you have spent at least three percent of your yearly household income on out-of-pocket prescription expenses in the year for which you’re seeking assistance from Bristol Myers Squibb Patient Assistance Foundation, Inc.”
According to the Journal of the American Medical Association, the Orencia drug alone brought in $5.3 million in 2021 for Bristol Myers Squibb. Other than the $1,600 per Orencia infusion (this amount changes but is not affordable unless one is uber-wealthy; insurance does not pay for it, or at least mine doesn’t), I take only two drugs – one for thyroid and one for anxiety, depression and nerve pain. Neither are expensive, and I could easily pay for them myself, but my insurance picks up the cost.
This arbitrary demand within the application form stymied me. I talked to people at Bristol Myers Squibb (all of them pleasant, none of them with any power to do anything about my problem, simply saying to me something to the effect that this is a decision from on high).
Consequently, I cannot get the amazing Orencia.
Maybe next year when they change the demands on the application form?
In the meantime, I survive on increasing doses of Prednisone – not a great idea, but pain rules. The Bait and Switch routine got me hooked on Orencia, but because I cannot pay the street price, I shall not get it.
This is a story of the power of Pharma. They are not in it for the patient, no matter how often they spout such benign behavior. They obfuscate, they lie. They are in it for the money, period, amen, who cares how the now-hooked patient suffers because she can’t come up with 3 percent of her own money for an RX. All businesses are in it for the money; most don’t have the power, the incentive or the type of business to bait and switch. With an internal organ called “Bristol, Myers, Squibb Patient Assistance Foundation, my former Pharma friends appear to themselves as benevolent. I consider them malevolent.
