Wednesday, September 2, 2009

A Post I Meant to Write Last Month . . .

As I was about to sign into my email, I saw this headline "Pfizer to pay record $2.3 billion penalty". As a cancer patient taking several different cancer drugs, this piqued my interest. It turns out that Pfizer was involved - multiple times - in illegal drug promotions.

Which brings me to the post I meant to write last month about this interesting interview I had while I was in Nome. Right before I flew to Nome, I was contacted by this consultant firm. Turns out they wanted to interview me about my experiences with cancer treatment. I wasn't sure what exactly they were looking for so I asked my interviewer what the purpose of the interview was and why they were interviewing. My interviewer stated that it would become clear as the interview occurred who had hired them. Turns out this consultant firm had been hired by a drug company and, in the end, this drug company was trying to find out from patients how better to market their product.

The interview started with a lot of general questions about my cancer, the stage, and my treatment thus far. Then, there were questions about the medications I take and the side effects I experienced. Follow-up questions continued about one of them in particular, Tykerb, made by GlaxoSmithKline.

The interviewer asked some questions about how I researched information about the medication and its side effects. I told her that I googled the drug and came up with several websites . .. but most of the websites said exactly the same thing in terms of the side effects, which shows that those websites were all pulling from the same information source. She wanted me to name specific sites but I couldn't name them because there were a lot that were the same - most of them were cancer centers. I said the most helpful were patient blogs and bulletin boards since the patients often discussed their side effects and how they coped with them.

Questions then were asked about whether or not a "care package" for patients would help. This care package could include things like pamphlets and brochures about side effects, perhaps lotion for dry skin (Xeloda puts together a care package like this which included Udderly Smooth), etc. She (the interviewer) also asked whether or not a "compliance" system which would help remind me to take the pills would help. There were other questions about what time of day might be best to take them.

I answered that a care package might be helpful initially, but for myself, I only referred to the information I received from Xeloda once and eventually threw out most of the care package other than the Udderly Smooth. I also said that I didn't need a compliance system as I seem to have worked out a system to help me to remember to take my drugs. I also figured out when to take my pills to lessen side effects (like diarrhea or nausea) by using a system of trial and error and noticing how I felt later. I told her that I have a Ph.D. with a strong background in both science and experience working in hospitals for 4 1/2 years. I noted that such a system (like dividing up pills into daily doses) could help other patients and that other patients without my background might need some help figuring out a system that worked for them.

Then, the interviewer kept asking me questions about what the drug company could do to make it easier for patients. My reply, "Don't charge as much for the drugs!!" She kept coming back to what I consider tiny little gestures of goodwill like the care package or the compliance system. I kept saying, "don't spend money on that stuff - make the drugs affordable for patients!" I had to say this several times and I got pretty excited ... perhaps bordering on angry.

I gave her examples of my own family who are uninsured or underinsured and who can't afford the drugs. She mentioned these drug programs (administered sometimes by pharmacies) that could get drugs to patients at low or no cost. I said that that might work for some drugs, but a friend's child takes an antidepressant but it's the "improved" newer version of the drug that isn't part of those drug programs - the older version of the drug that doesn't work as well is. She then mentioned state insurance programs and I said that the paperwork involved in getting someone covered is horrendous and that my brother gave up on our state's insurance program because of how difficult they made it. My partner has had issues with the state insurance program as well. She then mentioned "Tykerb Cares" and I said that I knew of a patient who tried to enroll in that program - a fairly lengthy application - and once enrolled, it only brought the cost of the medication from about $3500/month to $1300/month!! Out of pocket!!! This was for someone who's social security disability check was about that or less than that a month. How the hell is someone to afford even $1300/month!?!

I know that drug companies say that they spend a lot of money in research and development . . . but my colleague said that there have been studies that say that only a small amount of their profits go to R&D - the rest go to the board and the shareholders. I end up being very cynical about drug companies . . .

She kept asking about these other things and I kept saying, "make the drugs less expensive!". In the end, it was frustrating. I'm not sure if the message was heard loud and clear.

It's damn frustrating. Something needs to happen with the health care system in our country. The whole interview experience certainly did not lend itself to making me trust drug companies any more . . . sheesh, the company just seemed to want to do token things for patients - but not really help them ease the financial burden of treatment. That, really, is the crux of the issue. Grrr .. .


MisAnthropology said...

It is amazing? I mean, what about 'make them affordable' is so difficult to understand?

Ah... it's not the understanding of it that's the problem. She understood you well enough, but is being paid to deflect the problem, not record and address it.

Liz Kreger said...

Wow. Great blog, Dee. Very interesting where the questions were going and how useless what she (the interviewer) seemed to feel was essential ... i.e. the compliance package. I agree with you. It would at first seem helpful, but in the end, a waste of time and money.

I also hear ya about making drugs affordable. Without adequate insurance - you're screwed.

Dee said...

Yeah, Mary, she was paid to deflect the problem, not record and address it. To some extent, that's why I posted about it on my blog.

Liz, you probably know more than many others how in the end it would be a waste of time and money. And, yes, you are screwed if you don't have insurance.