Muddling through life

My life is not that exciting. I am not that exciting a person, period. I can actually be pretty boring. I spend a fair amount of time reading, knitting or watching TV - partly because I need downtime to keep going through the week before I get too tired out. I harbor my energy until something exciting comes along.

My one exciting event that occurs regularly are doctor appointments where we play "what's wrong with Caroline now". This week, for example, I have two doctor appointments - Monday I had my rheumatologist, Friday I have the eye doctor. I think I have at least one doctor appointment next week. How exciting. Not really. Just leaning towards a bit stressful.

Unless someone is an epic tweeter or celebrity, I don't think most of us live exciting lives. This is fine with me because I just want to be a normal person who muddles through life. That's much better than being a patient, because that gets too stressful.

Price increases? Really?

Aha, so I found another dirty little secret of the pharma industry. When sales volume goes down, they raise prices to make up the difference.

"The 9.9% hike in Enbrel's list price pushed through by Amgen on May 1 illustrates once more how biotech and drug companies profit by raising the cost of their older medicines to offset falling prescription volume. Enbrel doesn't work any better for rheumatoid arthritis patients today than the drug did when first approved in 1989 -- but its does cost a lot more.

The same Enbrel with a list price of $10,000 per year in 1989 now costs almost $42,000 per year. Inflation only accounts for about one-third of Enbrel's price increase.

Amgen relies on regular price hikes to maintain sales growth of its older drugs, which are being used by fewer patients. ...Enbrel sales grew 13% to just over $1.1 billion in the first quarter, but only because Amgen raised the price of the drug 19% to offset a 2% drop in prescription volume.
The most recent uptick in Enbrel's list price follows two similar price increases last November (7.9%) and June (6.9%).... 

Abbvie also raised the price of Humira, a competing rheumatoid arthritis drug, by 9.9% on April 1. (And Amgen's hike matched that exactly one month later. Interesting.) Humira's patents in the U.S. and Europe expire in 2016 and 2018, respectively, paving the way for the approval and commercial launch of cheaper "biosimilar" versions.

The roll-out of less expensive but equally effective treatments for rheumatoid arthritis patients is likely to put a dent in revenue generated by Amgen and Abbvie. But until that day of reckoning comes, the prices of Enbrel and Humira will surely march higher."

How sneaky. I should try that. As I cut back my work hours because of my health, I should demand more per hour to compensate. I am sure my boss would like that. Not!

A shell filled beach on Sanibel, near our condo.

This is mild RA?

Egad! Yesterday I had a follow up appointment with my rheumatologist. One of the many questions I had for her was what did she consider my RA to be - mild, moderate, or severe. I was somewhat surprised to hear her say - it was mild. Really? I feel like crap and have several areas of my body that have pain and swelling as well as some other issues.

I have to admit that RA is not my only ailment that causes aches and pains. I do have a couple others. And since I was diagnosed with RA and fibromyalgia at the same time so I am not sure which pains are attributable to one or the other and then there is all that osteoarthritis crap too.

On the plus side both my rheumatologist and the physical therapist at the gym yesterday told me they thought I was doing very well managing my health and my range of motion was good.

But that doesn't mean I feel that well all the time. So today I took a pain pill already and am headed out the door for another day.

Another vacation picture. Maybe I'll keep posting them until I bore everyone.

I shall have to remember all this 'advice'

I constantly see this type of advice - how to boost, help or other tips for your underactive thyroid or slow thyroid.

• Eat nutritious food
• Cut down on bad fats
• Limit cholesterol
• Increase fiber
• Exercise

Is this different from any other set of medical tips for anything other ailment? No. Well sometimes they do add things like no alcohol or take your vitamins. So why is this news worthy? They do also add in this case to avoid iodine rich foods.

I just get really aggravated by these thyroid tips on how to rev up your metabolism or your slow thyroid. I have no thyroid which is different. Well actually I have a tiny little piece of thyroid left which does squat. But there are never any tips for those of us who are thyroid free essentially. That would be more helpful. The only tip we ever get is to take our pills the same way every day, preferably on an empty stomach. Grr.

I blew out my flip flop

Yes it really happened. We went to Sanibel Island for a week which is why I haven't been blogging about me much. And the first day we got there we went down to the beach in our flip flops and stood in the surf and I really did blow out my flip flop.

It was a wonderful relaxing time. And our tenth anniversary. Since we got married, my health has tanked. Let's review the last ten years of my health:

2005 - Massive internal infection due to necrosing fibroids which led to hospitalization and a few months later a hysterectomy.
2006 - I was fairly healthy, for a year.
2007 - Breast cancer diagnosis in May followed by two surgeries, chemo, and ending the year just before Christmas with another lumpectomy.
2008 - Radiation and gall bladder surgery. And my back started causing a lot of pain.
2009 - Back MRI and diagnosis of degenerating disks
2010 - Lymphedema started and treatment for my back. A badly sprained ankle with a chipped tibia and other longer term issues.
2011 - Back treatments and injections began. And I got tennis elbow and developed Raynaud's.
2012 - PT for my tennis elbow and more back injections and procedures. And diagnosis of RA and fibromylagia.
2013 - Osteoarthritis in both knees with synvisc injections. All sorts of fun with RA issues.
2014 - More RA issues, a few colds caused by low immune system. Dry eye issues from RA
2015 - So far only two colds including an ear infection, more lymphedema, and some evil dental work.

But we are still happily married and we are still speaking to each other.. My husband does put up with me and all my ailments.

This just makes me mad

As I said about being a poor patient, this really just makes me mad.

Gilead's hepatitis drug, newly released in fall 2014, has lead to record sales. Their sales in the first quarter of 2015 were $4.55 billion (with a b, not an m) alone and their total sales were over $12 billion which lead them to a profit of over $4 billion as well. That's a hell of a lot of money. And the retail price for their lovely new Hepatitis C drug, Harvoni, which is so affordable, is $95,000 per patient. That is not a typo.

While some say it is affordable, it really isn't. The state of California, for example, can't afford it.

This really just makes me mad. Here we have a pharma company which created a life saving drug and then they price it so outrageously that its unaffordable. And they are so profitable at the same time that it is really difficult to accept the price of this drug. Oh sure the insurance companies will pay for it (great - that will just end up in your premiums) and they have programs to help you pay, but why don't they just make it more affordable to begin with.

What really irks me about this whole issue of high priced drugs is that when the Affordable Care Act was being implemented there were lots of worries that the government would some how put a price on the value of a human life. We don't have to do that because the government is not putting a price on our lives, the pharma companies are.

Okay, I just needed to vent a bit.

Dense Breast Tissue and Laws

I feel conflicted about this one. There are new state laws enforcing that women with dense breast tissue must be notified by their medical providers. Okay, that's great but then what do they do?

Yes there have been women diagnosed with breast cancer which was not seen on mammograms but that is a small number. Advocates for this law want to help women be in more control of their healthcare. Advocates against it are concerned about overdiagnosis and additional costs - particularly in states where insurance companies are required to pay for ultrasounds after clean mammograms.

And doctors have said they don't have the tools to do much with the information.

"New ways of classifying dense breast tissue could put even more women in the category of receiving dense breast notifications, said Dr. Priscilla Slanetz, who recently wrote a New England Journal of Medicine article questioning the effectiveness of dense breast notification laws.

One reason she wrote the article, she said, was "in our state [Massachusetts] very few of our primary care providers have any knowledge about breast density and strengths and limitations of these different tests" for supplemental screening.

The same may hold true in California, where a small survey of primary care doctors found that only half of them had heard of the state's 2013 dense breast notification law and many felt they didn't have enough education to address what breast density meant for their patients.

On this point, both supporters and critics of the laws agree: doctors need better tools to help their patients identify their individual cancer risks."

Okay, so now we have people who want to have these laws but we do not have a way to deal with the information. How helpful.