Changes

Lots have changed in the last 24 hours. I am in a better place. Physically we returned home this morning. A few days early for the same reasons as last year. I had issues with family members, my sister to be exact. Is it me? I don't know. I will talk to my therapist about this. I don't like it when this happens. I just feel like I'm stuck in 'Ground Hog Day' with my sister. But one thing I do know is that we will not be back next year.

How bad was it? My sister pulled her usual passive-aggressive crap. After yelling at me because my brother and I made a decision to go to the big museum from the house museum we were at so we would actually have some time there because it was getting late. It was my fault because I actually thought to call her and tell her we were leaving. I thought I was being considerate. That was the start

When we came home I was physically exhausted and ended up sleeping for a couple of hours. I woke up just before 7 pm and hoped that someone else had actually started dinner. It was not the case. My brother had gone for a short walk. My sister had organized her nail polish. My husband and brother eventually kicked me out of the kitchen and finished cooking dinner and sent my grumpy-self away.

Finally dinner was ready. My sister showed up at the table late (so we had to wait for her) to eat. Then she insisted that she have a special water glass that she had to get herself and she couldn't use any other one. And it went down hill from there. My sister admitted no guilt. I got mad at my sister. My sister got mad at me. My husband got mad at my sister. My father left because he didn't want to deal with the arguing.

After dinner, my husband and I went to try to find my father and drove around to see if we could find him. We also decided we were leaving in the morning. Finally my father came home. We went to bed. We got up early and were on the road home by 7 am.

I get to sleep in our own bed tonight. I do not have to deal with any family members. I can get the rest I need. We will go back down Saturday morning to make sure they put the house back together (and I can bring back the books I took by mistake).

Mentally I am also in a better place than I was because:

• We are home away from my family, especially my sister.
• Our cats seem to appreciate the fact we came back to see them.
• I got my broken laptop screen fixed already (which must be some kind of record)

All I have to do is find the damn remote control for the bed so I can raise it up so I can get comfy and take a nap.... (one of the cats must have put it on the dining room table).

What is the scientific truism - if you keep doing the same thing, how can you expect a different result?

August 19, 1981 Where Were You?

We all remember the first time a doctor tells us 'you have cancer'. I have always remembered. I was in post op after surgery and the doctor told me. I had long since forgotten the date but knew it was the summer of 1981.

In the process of moving, my husband has insisted I clean out some boxes of belongings in the basement. This has been a 'discussion' throughout our marriage. He has decided they are too old to be of any use to me.

I disagreed. However finally I broke down and started sorting through them (or so he thinks). What I really have done is go through them and sorted the contents briefly and then repacked them in a new box which is now sealed up, labeled and ready to be moved to our new house.

Going through the boxes did give me a chance to do a tiny bit of sorting. One of the items I found was a receipt for TV services during a hospital stay August 19-23, 1981. (I have no idea why I kept that - maybe my husband is on to something, but I will never tell him.)

What that little piece of paper told me is when I had my thyroid cancer surgery. It was my first hospitalization which I remember fairly clearly. It was a life changing event. I had long since forgotten the date.

The hospital rooms are not that different now. They may have been painted since and the beds have probably been upgraded. The TVs have been updated - they used to be big heavy ones up high on the wall in a corner. I think they had remotes. Now they have TV/computer which can surf the web as well as watch my favorite shows. They still all are private rooms with a bathroom with shower and a sink in the main part of the room.

On the other hand, I am very different. On that date, I went from a young carefree college student to someone with cancer. My life changed greatly. You have no idea. I am still digesting it.

That tiny little piece of paper finally allowed me to put a date on the day my life changed.

More on change

As part of moving, we are looking at a variety of locations. The biggest requirement is that my husband's commute stays reasonable. Well the first requirement is that we buy a more affordable house. But my husband's commute is the other significant factor.

Originally, I said we need to stay near the hospital where I am treated, relatively easy commute for me to work, stay near the gym I go to (because it is wonderful) and stay near my family members who live locally. Then we realized that as we downsize, my working will become a lesser requirement. And if I don't work, I can take a day each week to spend with family members so that is two things down.

The next issue of being near the wonderful gym I go to for dilapidated people is significant. But I hope if we move too far for it to be easy to get to three times a week, I might be able to find another gym with the right kind of equipment and supplement that with a physical therapist.

Finally, the remaining big issue is finding another hospital. I really don't want to but if necessary I would. I have been a mostly happy patient there for almost 35 years. All my medical records are there. But if it became more than a 45 minute drive, that might become an issue since I go there an average of once a week. I think that would become a last resort but could be under consideration. The bonus is that  it is about 10 minutes from my husband's job so that if he has a good commute chances are it would still be accessible for me.

I have considered if we move further out I might make a point of getting registered at a more local hospital so that the bulk of my medical history and allergies are there in case of an emergency visit. But I am not impressed with what would be the new local hospital's emergency room so that might be off the table.

Grr. I just want the damn move to be over so I can get through the all this packing and un packing.

Change

I don't like change. I like my little 'ruts' that keep me doing the same thing over and over again. And I'm usually okay with it.

However, my health requires me to make changes, regularly. I look back on my life in recent years and can recall many things I used to do, for decades, but do not any more because I can't.

For example, if you have read my blog for a while, you may note that I used to go for a daily walk. Every day, rain or shine, I would go out for a walk, usually a fairly substantial walk for an hour. I really enjoyed it. Now the idea of an hour walk has me cringing inside. I can't. Its a combination of all my issues which make it impossible for me to even think about more than a 20 minute walk.

I also used to do more than go for long walks, I would climb mountains, go skiing, ice skate, bike ride, and more. I was an outdoor person. Now I am more of an indoor person. I have watched so many Lifetime movies that I know the plots of some of them by heart. (My husband believes these will rot my brain but I beg to differ on that.) After being out and about for a bit, I need to come home and sit or lie down and relax. Then I turn on the TV or read a book or knit.

As I age*, I am learning to accept change more. Well, okay, sometimes I struggle with change and sometimes I make changes intentionally. Yes I did change my PCP but I think that's enough change for a while.

Unfortunately my health may force more changes that I am not ready to make. Damn.

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*I am not that old. I am still 37. And this article which talks about mental sharpness in older people - defined as over 50 - made me feel old!

Will I be what is expected?

Later today I am getting together with some old friends, from high school. One of them I got together with a couple of months ago, the others I haven't seen in decades. Will I be what they expect? I have no idea.

In recent years, I have skipped telling people about my cancer crap right away. I just say I have rheumatoid arthritis and fibromyalgia - and some people do not understand those implications.

I have found that I skip telling people about cancer until I know them better. There is no reason to. And sometimes they run away. A few years ago I reconnected with an old friend and she wanted to get together until I said 'breast cancer'. And I never heard from her again.

My health has changed me in many ways. Internally both physically and emotionally, externally just physically only. I have lots of physical limitations - no twisting, lifting, carrying, shoveling, raking, vacuuming, biking, skiing, and lots of other things. I have some emotional issues such as depression and anxiety. Who wouldn't with my health? I have nothing to be depressed or anxious about? Hahahahahahahahaha.

Anyway, what will they expect me to look like and be? I have no idea. I guess I will just have to wait and see. Its been a long time since we used to go shopping at the mall on Friday nights to check out guys.

Damn those pesky blood tests

Yesterday my plan was to go to my therapist and then get some blood work done for my rheumatologist. The hospital switched to a new software program with a new patient interface. I like the interface because I can see all my upcoming appointments and test results and all sorts of fun stuff.

When I saw my rheumatologist earlier this month we agreed to switch around my meds which meant more blood tests. I had made a note of getting my blood work done yesterday but realized I never got any notification on my planned blood work. I decided I should call to find out if they were really scheduled. And they weren't. But because I called, they were happy to put them in the computer.

So I went for my blood work after my new therapist urged me yet again to go to a different support group on how to relax more. This morning I got the result. And they suck. To be honest.

This means my plan to switch away from methotrexate and the forever and ever colds may not work. Damn those pesky blood tests. Damn.

Times have changed

I am not a Mad Men fan. It just has never had much appeal. We are now facing the last episode this coming Sunday and then it will go off the air. I have been intrigued about the thought of so accurate representation of life in the mid-late 1960's. But I have never bothered to watch it.

I found something online yesterday which talked about last Sunday's episode where Betty goes to the doctor after a fall for rib pain only to learn she has advanced lung cancer. But the doctor won't tell her until her husband arrives. The Huffington Post reviewed the show and spoke to the CMO of the ACS:

"According to Dr. Otis Brawley, chief medical officer of the American Cancer Society, the portrayal of Betty's care was almost entirely spot-on: A woman diagnosed with lung cancer in 1970 would have been given the patronizing care that Betty received. Though not a fan of the show, Brawley watched the episode and explained it was par for the course back when “cancer” was a generally whispered or unspoken word, and the medical community was generally patronizing to women as well as cancer patients.

“I can tell you that there was misogyny in medicine, and I can tell you there was actually a time in the United States when it was common not to tell people they had cancer, but they told the family,” Brawley told The Huffington Post. "I can tell you that there was a time when many people did not even say the word ‘cancer’ or simply used the words ‘Big C.’""

He adds that the reason it was so patronizing was that there was little if anything that could be done. At that time, there were a few chemotherapy options but lots of discussion on if they even were helpful.

I remember when Betty Ford announced publicly she had breast cancer. She and Shirley Temple Black were the first to make this announcement publicly and helped break down the barriers to make cancer spoken, not whispered. Less than a decade after that, I had my first cancer diagnosis in 1981. A few years ago, I met a woman who was diagnosed with thyroid cancer around 1980, and her parents never even told her about the diagnosis.

I am so glad times have changed. We may not have a cure for cancer but we can at least talk about it.

PS extra points to everyone who can watch that gif for more than a couple repetitions without getting the beginnings of a headache or getting dizzy.

Transitioning Doctors and Change

I have never been very good with change. Once I am comfortable with something, I don't want it to change. I enjoy being in a little rut here and there. I only like change if I want it to happen. For example, if I like a doctor, they are never allowed to leave or retire. If I don't like them, I will make the change myself. But I get concerned with too much change.

Right now I have a range of doctors. A couple of them are older and I like them so I have concerns that they could retire on me. I can tell how old they are roughly by looking them up on the hospital website and figuring out their age by looking at the year they finished medical school. (If medical school takes 3 years, that means they are about 25 and then I can do the math.)

I changed my primary care doctor a couple of years ago. I was fed up with her. She sent me for my annual mammogram, which was the bad one. I was very upset and left her a note at her office that I wanted to talk to her. I never heard from her. That was it. She was toast. I now have a new one but she is a bit young and her ego is present a bit too much.

So now I am contemplating changing again. I think I found a new potential doctor who has a sub-specialty in rheumatology. But then I wonder if I have a PCP with a sub-specialty rheumatology would I still need a rheumatologist as well? Or just the PCP? And I do like my rheumatologist. Crap. I'll have to figure that out.

And I just changed my therapist again. I liked my long term therapist and she retired (damn). So I got a new one who was a bit too young, talked about herself too much, and wasn't a match for me. I met the newer one yesterday. There is potential. She had some good advice for me. We'll see how that goes.

Changing doctors requires bringing them up to speed on me with the inevitable conversation about how many doctors I have and how many appointments there are lined up for me. And training them on all my ailments, medical history, and medication allergies.

How much change can I handle at one time? I waver on this one. My health isn't stellar and if I keep switching doctors I risk losing a sense of security. And the hospital just switched to a new computer system and I have had the sense the doctors are not doing as well with looking up my medical history before seeing me.

Maybe I'll wait a bit before changing my PCP and let everything else settle down. I also have an appointment scheduled with a new specialist next month. That's more change too.

Will biotech research cuts hurt advancement?

Around the world, biotech and big pharma are trying to manage their costs and some are beginning to cut research jobs, which can slow finding new treatments. This is a normal problem for any business, if you have to cut back, some things just don't happen.

When I first joined the business world, I worked for a company that was facing a round of layoffs. To this day, I clearly remember a co-worker saying to me "they can't lay me off as they won't have someone to do my job function". Well, guess what? The company decided not to have that job function any more and she was let go.

Businesses need to change and evolve to prosper. If they do not, they will no longer be in business.

I agree that biotech and big pharma need to make cuts and adjustments to continue to prosper. But they also need to take a look at their profits and their pricing. I honestly believe that biotech and big pharma need to review their entire financial model to adapt to the changing economy.

The insurance and medical care industries are reeling from the huge burden of costs from newly developed drugs and is really struggling to pay the bills. And the pharma companies are worth billions as the patients go bankrupt.

Thoughts on tanning

In yesterday's post, I mentioned that I will work on getting a tan while on vacation. I went back and reread yesterday's before writing today's and that kind of leaped out at me.

Tanning is not considered a healthy activity. It might cause wrinkles and skin cancer decades later. I have never fake baked, use spray on tans or been to a tanning salon. But I like a little color on my pale, look like I live under a rock, natural skin pallor. I also burn quite easily.

The best tan I have ever had in my life was when I spent a week in the Bahamas, snorkeling, water skiing, and moving around constantly. I wore sunscreen every day and never sat in the sun and didn't burn at all. But I was an awesome light tan color by the time I left. I have never had such a good even tan in my life.

So now, I do not expect myself to be able to move around as constantly, I will wear sun screen and move around as much as I can so I can tan lightly. But I am more in wrinkle avoidance than skin cancer avoidance mode.

Cancer makes you ask 'how long will I live' and 'how important are those long term goals'. Retirement savings, and other goals, become less significant after a cancer diagnosis, but then as you feel better, time passes since diagnosis, and the medical bills subside, they then return to prominence in your life. Priorities change as we age and cope with the medical disasters thrown our way.

My one chemo summer regret is that I didn't work on my tan more to prevent that lovely 'chemo pallor'. If you are a stage IV cancer person, I encourage you to get a 'healthy' tan.

Breakthroughs and costs

Several drug companies are poised to bring significant breakthroughs in cancer treatment. One woman is referenced as going from stage IV lung cancer, a deadly place to be, to being cancer free after several months of treatment.

And here's the but. Who can afford $100,000/patient/year/drug. And if the drugs are used in combination that number could be $300,000/patient/year. No one can afford that. And we can't ask the insurance companies to pay that much. They would be bankrupt - as well as all the patients.

Put it this way, ten  years of treatment is $1,000,000 per drug. So every ten years, a pharma company is a million dollars richer.

So what are we to do?

The world is changing. We are getting to a place where a cure for cancer is closer to a reality. However the pharma industry's business plans bring us expensive cures. While we need the cure for cancer, we need a new business model which allows for affordable treatments.

As the world changes, the industries concerned need to change as well. These industries are health insurance, pharma manufacturers, and individual patients. Yes we all need to change and adapt to the new world where a cure for cancer is a reality and not a dream

Disillusioned Doctors

There has been a fair amount in the news recently on disillusioned doctors and the 'tell all' books on 'life behind the scenes'. Disillusionment is being deprived on illusions. So what were they expecting?

I guess I mean to doctors go to medical school expecting to save the world? I know the medical world has changed significantly in the recent decades and the focus has changed from caring about patients to caring about insurance costs and paying the hospital administrators. But as their world adapts, the medical professionals need to adapt.

Technology has advanced and made healing patients easier. Patient care now includes concerns with hospital and insurance costs. Its a fact. It doesn't mean its right but it must be worked with and adapted to. I am the first person to decry the weight an insurance company has on choosing my medical care. And I would value change to refocus care on to what the physician wants for the patient as opposed to what insurance will cover.

But I don't want a medical professional who is disillusioned and hating the system, to bad mouth it to me and be cranky. I still want the care where the carers do care. I want the bedside manner. I want the ability to talk and ask questions. I know the staff are rushed but it can be done with a smile instead of a frown.

To correct the system will mean more change so please do not resist the change and be grumpy and disillusioned to me the patient who is in need of care.

The Pessimistic Side of Curing Cancer

Two blog posts caught my eye this week on the problems with finding a cure for cancer. There is lots of hoohaa going on with we can cure cancer. There is even the deadline(?) of 2020 to find a cure for breast cancer. But here is a look at the other side of finding a cure for cancer.

The first article is on "Coming Together to Fight Cancer" that lists the five issues involved:

1. Cancer is not one disease. Its many diseases. 
2. There is a lot of effort going into treatment - chemotherapy, surgery, and radiation. Those are not cures. And a lot of the diagnostic advances (CT/PET scans) are also cancer causing tools.
3. Modern life styles are contributing to cancer rate increases - 10 fold in the last century.
4. There is not a lot of political will behind it. Politicians only care about the things that get them votes. They may say they support curing cancer, but is there budgetary support behind those words?
5. Apathy. Those touched by cancer range from rabidly vigilant to fairly laid back on their stance on finding a cure for cancer. But the lack of action prevails.

The next article refers to cancer as "An Unstoppable Killer: New Research Shows Cancer Cant Be Eradicated". Think of it this way. Cancer cells have been known to form going back millennia on the simplest of beings. So if they form on very simple organisms, could they be part of the intrinsic basis of life? If so, can we cure cancer without destroying some of the very basics of life? There is a lot more detail in the article itself so please read it.

Now all that being said, what can we do if we can't eradicate cancer? We can help lower the rates of cancer by returning to simpler lifestyles without chemicals, synthetic food made of chemicals, no tobacco use, more exercise, etc.

What if we tried that? In Australia, there used to be soaring rates of skin cancer. Now there has been a dramatic decline. Why? They started promoting sun screen use, put shades over public pools, encourage people to wear hats etc. That doesn't sound hard does it? A few little changes can make a big difference.

Remember the big hole in the ozone? With the decline in use of aerosols and pollution reductions with the Clean Air Act, the ozone hole is in showing signs of repair.(I read it somewhere this week but of course I cant find it now.)

So lifestyle changes may be able to help decrease cancer rates. If we can't cure it, maybe we need to focus  on decreasing its presence.
So instead of spending billions on expensive medications that might extend a patients life by up to six months, what if those billions were spent on promoting healthier lifestyles and

Meanwhile back at the rheumatologists office

Monday I went to see the rheumatologist's nurse practitioner for the first time. She has the best decorated exam room.

And she has a whole wardrobe in the bottom drawer of her file cabinet. I can't wait to see her next outfit.

But I digress. Because of the mystery cysts/nodules on my elbow the NP asked me if I wanted to try switching from methotrexate to something else.... in case the bumps are rheumatoid nodules caused by methotrexate. She offered me Xeljanz. I opted to wait until we know what they are before making a change. Changing one medication often requires changing multiple medications for me so I do not quickly jump on that bandwagon.

I went to my before the birds MRI on Friday and should get the results tomorrow. Yesterday I also got the x-ray results on my elbow which say "Mild soft tissue thickening over the olecranon, consider bursitis." How helpful. But the NP made a note saying we will know more after the MRI results.

In the meantime, I decided to do a little research on Xeljanz as a treatment option. It costs a paltry $25 per day at the regular pharmacy or you can do the math - one hell of a lot each year. The mail order pharmacy should bring that down to $105/month which is much better but still. As a comparison, Methotrexate costs me $8.70 for about four months of drugs and needles.

Then yesterday in the mail, I received a box. From Pfizer???? What did they want? It was almost big enough to hold a bottle of wine (wishful thinking). I opened it up and found:

 Now I think I know what the Xeljanz capsules will look like.... And inside the giant pill was:

• Ready for a change booklet - questions to ask your doctor
• Your body was made for better things than RA - a hefty brochure containing the prescribing safety information
• A lovely letter congratulating me for taking the first step in considering a change in medication
• A day by day RA symptom tracker complete with little colored post it notes (Made in China) to use to mark each day's efforts
• A co-pay savings card. With a maximum of $8000 in coverage each year - or the card to suck people in to switching.

Well, now my little marketing brain kicks in. Some how, I am on a list of people who said they are taking methotrexate for RA - I probably took some online survey or something.... I don't really care how they got my name and address. And then the marketing people said "let's send all these RA methotrexate people information on switching to our expensive new drug."

Then they dreamed up this lovely box and giant red and white capsule to fill with expensive marketing tools. My educated guess as  amarketing person that it cost about $8 to print everything and get it in the mail, which is expensive as marketing premiums go, but nothing compared to the billions they make every year.

But its a waste for me - except for the co-pay savings card - as I do not base my decisions on marketing crap from big companies but on what my doctors suggest. And I want my MRI results before doing anything.

Research turns theories upside down

I read Dr Susan Love's blog - she writes well and she knows her stuff - and I have heard her speak so I feel a connection. Recently she posted about some interesting new research which has some wide implications. While the research itself sounds interesting, I am more interested in Dr Love's comments about the research.

She makes the point:

"Two new papers have been published which are causing many to reevaluate their thinking about cancers and which cells are important.  Once again, our previous theories have been stood on their heads!"

So what was believed was wrong. We need to remember that. As research progresses and we learn more and more about things, we often find we were completely wrong. (The world used to be flat, wasn't it?)

We have to remember that when new research proves other research wrong, it doesn't mean it was anyone's fault. We didn't know there were options. We didn't have the technology to know then what we know now. Sometimes we have the tendency to say 'If I had that treatment, I would be so much better off.' But we can't beat ourselves up for that.

On the flip side, we have to remember as we learn more and more about cancer, those pesky five year statistics tables are based on old technology so they are outdated. And we can assume, rightly so, that our odds are better than those stupid tables.

And more research may disprove the latest breakthroughs in the future but we are doing as best we can in the interim. Meanwhile, back at the ranch, I am still waiting for that cure for cancer that Star Trek says they discovered in the 21st century.

Medical errors - and what if they didn't tell us?

Massachusetts General Hospital archives

Dr. Ernest Amory Codman.

We all are aware that, unfortunately, medical errors can and do occur. A recent example is of this New Zealand woman who was never told of her Her2 positive diagnosis for two years and didn't receive the correct treatment until it was too late.

But what if doctors never told us about treatment outcomes and what their error rates were? That would be pretty damn scary. No one likes to admit they made a mistake but as 'to err is human', it does happen.

But that's the way things used to be:

"Dr. Ernest Amory Codman was in his mid-40s when his golden career as a sought-after Harvard surgeon began to unravel. He had quit in exasperation from Massachusetts General Hospital, and when he took his dispute with hospital leaders public, colleagues turned against him. Many stopped sending him patients.

It was the early 1900s, and Codman was impatiently pushing hospitals and doctors to adopt a practice many considered heretical at the time: Record the “end results’’ for every patient — including harm caused by physicians’ errors — and make them public."

But now his work is being recognized:

"A century later, many of Codman’s ideas are the bedrock of modern medicine. And a group of doctors, including a former Mass. General surgery chief, plans to make sure he gets the wider appreciation he deserves this week." 

His work has led to many changes in medical practice, even if he wasn't appreciated during his life time. You can read here the whole story here but think of what medical practice would be like with out people like him pushing for change.

Changing views on breast cancer

Treatment for breast cancer has changed over the past decades. This is a known fact but some of the newest changes are summarized in a recent article in the New York Times, "Outsmarting Breast Cancer". A couple of key points that hit home:

'“The size of the tumor and presence of positive nodes may not matter as much as we thought,” said Dr. Deborah M. Axelrod, a surgeon who directs breast cancer programs at the center. “It’s not even true that if the cancer is metastatic, it’s curtains.”'

While I do not have metastatic cancer, I have long thought that advances in treatment make cancer more of a chronic as opposed to a short life sentence.

'Instead of waiting for cancer to recur in certain high-risk patients, scientists are now developing techniques to outsmart the cancer cell’s aggressive tactics by prompting the patient’s immune system to launch a continuous attack that keeps the disease at bay indefinitely.

I like that one even better - preventing recurrence. Remember an ounce of prevention is worth a pound of cure.

Even lumpectomy could eventually become a thing of the past if these techniques achieve their early promise.'

I really like that. Three lumpectomies later, I am a little lumpy..

'...gone is the simplistic notion that cancer is a disease of abnormal cell division, said Dr. Larry Norton, deputy physician-in-chief for breast cancer programs at Memorial Sloan Kettering. “It’s a disease of abnormal relationships between the cancer cell and other cells in its environment.”'

The cells are hanging out in the bad neighborhood obviously. I had heard this a few years back when I heard Dr Susan Love speak. Bad friends lead to bad things - remember what your mother said about some of your friends?

So change for the good for once.

Changing doctors...

I am not one to doctor shop or doctor hop. But I did make a change to my doctors yesterday. I see a psychologist and psychiatrist for depression and anxiety - how is your brain after all sorts of medical crap.

The PhD had recommended I see an MD a few years ago and she recommended one who was not available. So I went with Dr S instead. I was not impressed. She has no people skills. I stuck with her because I felt that I should give her a fair chance. A few years later I am not impressed still. So I bit the bullet and consulted with the PhD on who to go with. Now I'll be seeing a Nurse Practitioner instead.... I don't really care as long as my meds interactions are monitored closely which is my real problem.

My only real doctor concern these days is that one of them might retire and I will be forced to make a change...

The Cost of Cancer Care - or Big Pharma Is Getting Rich

Today's Boston Globe has an article on the "Sky-high drug prices test cancer patients". A few little pieces of information I drew from it:

"In the United States, a month’s supply of a brand-name cancer drug is now about $10,000, double what it was a decade ago, according to the report. The most expensive drug, at $117,648 for a course of treatment, is Bristol-Myers Squibb Co.’s Yervoy, the first drug to prolong survival in patients in advanced stages of the skin cancer melanoma...."

"...On average, an insured patient’s total outlay for a year’s cancer treatment is about $9,000, excluding any assistance programs, with the insurance company covering the remaining $115,000, according to Aitken. Patients receiving older cancer drugs available as generics would pay less.

The higher the patients’ costs, the more likely they are to drop out of treatment before finishing. For example, the report notes that when copayments for hormonal breast cancer treatment exceed $30, there is a 10 percentage point drop in the number of patients who complete therapy, compared with when the copay is $30 or less. For patients who stop therapy and resume it later, the combined patient and insurer costs can jump 50 percent."

$9000 per year is not chump change and the insurance company's share is a paltry $115,000 - so you wonder why insurance companies are feeling the crunch.

But then I found a little article on Pfizer and how generics are hurting Pfizer's profits:

"Despite sharply lower expenses and taxes, Pfizer Inc.’s first-quarter profit dropped 15 percent, due to generic rivals and an end to some promotion efforts with other drug makers. Shares fell as the company missed revenue expectations by $730 million, but narrowly beat profit estimates. Revenue at the New York giant has fallen since 2011 as cheap generics hurt sales of some off-patent drugs that once brought in billions annually, particularly the cholesterol fighter Lipitor, the top-selling drug ever, with peak revenue of nearly $13 billion."

But before you feel sorry for Pfizer at all, their reported net income for the first quarter of 2014 was $2,329,000,000 on $11,353,000,000 reported sales.

So I dug a little more on Pfizer and found this lovely section on the Value of Medicines for Oncology in their Press Kits and Downloads. So I started reading after many self accolades on their benefit to society and was appalled by this section on page 2:

"Based on the average cancer drug expenditure per patient from diagnosis until death over the past decade, an analysis showed that the cost of that added year of life – plus any further benefits to the individual’s quality of living – was about $6,500. Given that surveys indicate that most Americans would be willing to pay $100–$300 thousand to extend their lives by one year, $6,500 represents a bargain for society.
 
For decades, the U.S. public and private sectors have committed substantial resources toward cancer research, but the societal payoff has not been well-understood. One study estimated between 1988 and 2000, life expectancy for cancer patients increased by roughly four years, and the average willingness-to-pay for these survival gains was roughly $322,000. Improvements in cancer survival during this period created 23 million additional life-years and roughly $1.9 trillion of additional social value. The share of value flowing to patients has been rising over time. In terms of economic rates of return, R&D investments against cancer have been a success, particularly from the patient’s point of view."

So they are justifying their high prices of cancer drugs based on the fact that most Americans would be willing to pay huge sums to extend their lives by one year. A bargain for society? So they are getting rich on our wishes not to die? Please. I have no sympathy.

Please take a nanosecond to feel sorry for Myriad Genetics

They have become lawsuit happy. The Supreme court has said no company can hold the patent to a gene last summer. This means that Myriad Genetics has lost their monopoly, huge prices, and ability to strong arm the breast cancer population with their patent on the BRCA genes Okay that nanosecond is now long over.

Now we can get on the road to reality. Myriad has decided that since they have lost their patent, their lawyers are going to get rich. They are in the "let's sue so we can keep our monopoly as long as possible".

"Last week's ruling by Judge Shelby is perfectly clear about all that is at stake for Myriad:

Although Plaintiffs [Myriad Genetics] have shown that they are likely to suffer irreparable harm through erosion of their test pricing structure, loss of their share of the testing market, and loss of their exclusive patent terms if an injunction does not issue ... Plaintiffs are unable to establish that they are likely to succeed on the merits of their claims.

In other words, Myriad's earnings will undoubtedly take a serious hit from increased competition, but this fact cannot override the substantial doubt about whether they will prevail in their legal claims."

I hate people that are lawsuit happy.

But this underscore additional issues with genetic testing and personalized medicine.

"Not only have the courts pushed back on Myriad's monopoly, at the end of 2013, the Food and Drug Administration (FDA) moved to stop the direct-to-consumer genetic testing company 23andMe from marketing and selling its DNA testing service without approval.

As with all medical drugs and devices we must balance the desire for innovative new treatments with our demands for safety and efficacy. As more labs and companies enter the BRCA testing market, we must ensure that these tests are properly regulated to protect public health and patient interest. Genetic tests claiming to provide medical information must be analytically and clinically validated so we know that what companies are telling customers is in fact accurate. Nor should companies be permitted to overpromise the benefits of genetic testing or to drum up people's fear of disease in order to sell more tests. All genetic testing should be accompanied, both before and after testing, by independent and professional genetic counseling so that potential customers understand the limitations of testing, their individual test results and all of their medical options.

Finally, we should refuse to allow companies to hoard, for their own gain, our medical and bio-data collected through the process of testing. Critics of Myriad have long noted that the company stopped contributing to the primary international database on genetic mutations related to breast cancer, in what is widely seen as a move to further capitalize on their monopoly access to more than a million women's family history and genetic information. Similar critiques have been made that 23andMe is using its customers' bio-data and familial information to launch new business products."

Genetic testing is the new thing. I'm  not ready to turn my DNA over to just anyone. And I would be very upset if they tried to upsell me on additional tests based on what I already have...

But I will follow this story and see where it ends up. But I never felt sorry for Myriad Genetics.