Outrage and Disgust

I just read a Time Magazine article entitled, "How Drug-Industry Lobbyists Won on Health Care".

The article was in the November 2, 2009 issue of Time. The main point is that the health care bill that was submitted by the House Energy and Commerce Committee included a provision that would allow drug companies up to 12 years of exclusive rights to the data and manufacture of biological drugs (medicines derived from living matter); others suggested 5 years and Obama advocated 7 years.

I am frankly outraged and disgusted. Here are a few statistics regarding drug lobbying in the first six months of this year:

1. Biotechnology lobbyists spent $110 million ($609,000/day) in the first six months to influence lawmakers.

2. The drug industry's registered lobbyists number 1,228 people, or 2.3 people per member of Congress.

3. Campaign contributions to those members of the House Energy and Commerce Committee have totaled $2.6 million in the past three years.

Imagine if $609,000/day were spent instead on insuring our nation's uninsured or underinsured. Imagine.

I recently heard two stories of needless deaths that occurred because the individuals could not access or afford needed drugs. One woman, a friend of a co-worker, died because she needed a liver transplant; her liver failed because her insurance would not cover the needed drugs that would keep her liver functional until she could get a transplant (or else it was because she couldn't get the drug earlier this year that would've kept her liver going longer). Another young man, encountered when some friends went elk-hunting, died of a two-hour plus seizure. He had been in a car accident six months prior that caused some brain damage that caused the seizures and he was unemployed, had no insurance, and could not afford the anti-seizure medicine.

Millions spent in the last six months to lobby. Not to heal. Millions spent to make a profit.

I am so pissed off right now.

Also, think about these other numbers given in the same article, which are the sales of various biologic drugs:

1) Avastin, made by Genentech, which can be used to treat various cancers (it cuts off the blood supply to cancer cells) - $9.2 Billion (yes billion, not million)

2) Enbrel, made by Immunex, to treat rheumatoid arthritis - $8.0 billion

3) Remicade, made by Centocor Ortho Biotech, to treat inflammatory disorders - $7.9 billion

4) Humira, made by Abbot, to treat rheumatoid arthritis and psoriatic arthritis - $7.3 billion

5) Rituxan, made by Genentech, to treat non-Hodgkin's lymphoma and rheumatoid arthritis - $7.3 billion

6) Herceptin, made by Genentech, to treat breast cancer - $5.7 billion (this could be a drug I go on someday if my current treatment fails)

7) Lantus, made by Sanofi Aventis, to treat diabetes - $5.1 billion

8) Epogen, Procrit, made by Amgen, Ortho Biotech, to treat anemia (which can be caused by various chemo treatments) - $5.1 billion

9) Neulasta, made by Amgen, for neutropenia - $4.2 billion

10) Novolog, made by Novo Nordisk, to treat diabetes - $3.7 billion

By my count, that is $63 billion dollars. $63,000,000,000 dollars in sales.

The article doesn't mention what the total profit was for these drugs; one has to factor in the development and manufacture of them. However, I know that Herceptin has been around for at least ten years, so they have probably covered their costs for development already and I bet they have figured out the most cost-effective way to manufacture the drug - I think they have to use cow blood or something to manufacture it.

All I can think of is that the profit margin must be really high and that those profits go to the CEO's and higher ups and to shareholders.

Someone mentioned (in that pissing match I had on Facebook) that many retirement accounts invest in companies such as these - so the person apparently cared more that his retirement nest egg showed healthy (ahem - no pun intended) profits. So, rather than being concerned by the cost of the drugs to individuals or insurance companies - for instance, Herceptin costs $48,000 for a year's treatment for one person - the person was more interested in himself. Unfortunately, that's indicative of our society's value on the individual rather than on community welfare. There's a time and a place for that emphasis, but I tend to think that everyone loses when our community as a whole isn't strong.

How does one express this kind of outrage in a blog? I'm just disgusted. Shame on the pharmaceutical companies. And, shame on the lawmakers for taking the money, too. It's literally blood money.

Grrrrrrrr.

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 .. .

My Soapbox aka I'm Thinking of Writing an Editorial . . .

A couple of weeks ago, the editor of a popular and high-profile organization that publishes a book series asked if I would be interested in contributing a chapter on the Arctic. I don't want to name who she worked for - primarily because my purpose here is to let the rest of the world know about this issue and not necessarily to point fingers at this particular institution/organization. I may do that at a later date, but for now, let's just say that I respect this organization, for the most part. I also would like to give that organization a chance to respond.

Below is the text of the email I wrote to this editor, declining the opportunity to write this chapter. I have edited out the organization, but it's more or less the same text. I also wove in some text I wrote in an email to a friend and colleague. I feel strongly enough about this issue that I thought I should pass it on.

After some careful consideration over the past week, and reviewing various materials to make sure I have my story straight as well as thinking about my current work load, I have decided that I honestly do not have time, nor the inclination, to write this chapter on the Arctic for [xxx]. I am respectfully declining this opportunity. I was quite flattered to be asked and I do appreciate your time in working with me.

I decided to review Tiger Burch’s book “The Inupiaq Eskimo Nations of Northwest Alaska” as a starting point in order to figure out whether or not I could actually name a “tribe” in Alaska. After reading his list of nations, I came to believe that when you started giving me names last week on the telephone that you might have been using Tiger’s list of nations. Thus, when you mentioned one name, such as “NuataaGmiut”, I answered that that was a “village” today, not a “tribe” in the same sense as the word “tribe” is used in the Lower 48. However, in the 19th century, it was an alliance of about 20 or so villages or bands that had from 1 to 6 houses, with each settlement holding from 8 to about 40 people. The people in these 20 settlements referred to themselves as belonging to that unique settlement but also belonging to a larger alliance that they referred to as “NuataaGmiut”.

Today, however, such “nations” do not exist in the same sense. Because of disease and then colonization by the U.S., these settlements were congregated into one spot for ease of dispensing government services such as a school or health care. These aggregations of many settlements into one village often exist today as an IRA (Indian Reorganization Act) tribal council, which is a “tribal” structure imposed by the United States government upon the Inuit peoples in Alaska. Thus, when you asked me what a “tribe” looked like among the Inupiat, I answered that each village was “tribe” because of its past history – a group of settlements banded together in the past and referred to themselves by a unique name, but often these settlements were forced to come together into one place by federal Indian policy. And, there were times when this policy forced groups who were traditional enemies to congregate together in one place – forcing groups who were stewards of particular places to live in another group’s place.

Hence, there is a dilemma here that I cannot and do not want to artificially resolve for the sake of selling a [xxxx] book. In the past week, as I thought about how to resolve the issue of how to define a “tribe” in the Arctic, I frankly found myself getting frustrated and pissed off. It just won’t work. I got angry because I felt that another western idea of “tribe” was being imposed on indigenous peoples yet again. That’s not how the Arctic works and unfortunately, based upon our conversation, it does not seem that [xxx] is willing to be flexible in the structure of this book. By imposing this artificial structure, for the sake of each chapter looking exactly the same, on the Native Nations of North America, the [xxxx] is obscuring the richness and diversity of Native America.

This morning, as I reflected on this whole issue during an acupuncture appointment, I remembered something that you said in our conversation last week. In particular, you said that in the process of developing a book, the [xxxx] “market tests” the structure and content. I assume they do this in order to figure out what books [should] look like and what they say in order to sell as many of the books (and therefore make money) as they can. Now, I understand that this is the prerogative of the [xxxx] and I am not questioning the freedom of the [xxxx] to do this. However, it occurred to me that what is happening is that [xxxx] is giving the American public exactly what it wants: THEIR OWN VIEW of the Indian Nations of North America, not what ACTUALLY EXISTS. In other words, [xxxx] is playing into the stereotypes of Native Americans.

Ethically, I cannot be a party to this process. If, however, [xxxx] wants to put together a volume that describes what actually exists, rather than what the unknowing American public THINKS to exist, I would be happy to contribute something.

For an example of the flexibility that can be brought together in a volume, Mark Nutall edited the “Encyclopedia of the Arctic” several years ago. While I haven’t read all three thick volumes, he does say in his introduction that he refused to put artificial ideas of how to define the “Arctic” but instead allowed varied definitions, whether it be based on the treeline, the Arctic circle, geopolitical boundaries, etc. He stated that he wanted the diversity of what is considered the “Arctic” to be represented in these volumes.

Quite frankly, I am dismayed that the [xxxx] is going this direction. It means that there is a lot more work that indigenous scholars need to do in order to educate the general public about our lives. With that said, I do want to thank you very much for this opportunity. I was flattered. Unfortunately, however, I do not feel that I can contribute the Arctic chapter under these circumstances.
Thank you,
Deanna