Going for the big bucks instead of focusing on benefits to patients

Here's another thought that the pharmaceutical industry are going after the big bucks and not looking after the interests of the patients. A new study proposes that companies are focusing on developing late stage cancer drugs because the time to market (and financial return) is shorter than in developing preventive or early stage cancer drugs. I found this little tidbit online:

'Pharmaceutical companies are overlooking drugs to prevent cancer and treat early-stage tumors because they take longer and cost more to develop than drugs for late-stage cancers, according to a new MIT study.

“There’s dramatically more investments in the late-stage treatments than there is in stage one or stage two,” said Benjamin Roin, a professor at MIT and a co-author of the study. “There’s shockingly little investment in prevention.”

The study, published in American Economic Review, found that low investment in early-stage cancer drugs accounted for a loss of 890,000 life-years — additional years cancer patients would have lived — in just 2003.

The culprit, the authors say, is how regulators treat the vital exclusivity periods for new drugs. Because the exclusivity period begins when the patent is filed — not when it hits the market — drugs that take less time in clinical trials become more valuable, Roin said. Trials for cancer drugs targeting early-stage tumors and prevention can take significantly longer to show results, he said.

“It creates incentives to focus on the drugs you can get on the market quickly, as opposed to drugs that take longer to develop,” Roin said. “The patent system is penalizing companies if they take longer to develop stuff and providing bigger rewards if they develop stuff that gets to the market fast.”'

Perhaps they need to look at their business model instead of their shareholders. I mean aren't pharmaceutical companies supposed to be developing medications to help people stay alive and feel good? No wait, they must be out to make big bucks because if they wait for people to be sick and dependent on their meds, then they can rake in the billions. And they can charge more for these 'life extending' drugs. That way their shareholders will be happy. (I am really sick of shareholders after working for publicly traded companies.) Insert cynicism here please.

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This is taken from the beginning of the study itself (Download pdf of study results here.):

"Over the last five years, eight new drugs have been approved to treat lung cancer, the leading cause of US cancer deaths.1 All eight drugs targeted patients with the most advanced form of lung cancer, and were approved on the basis of evidence that the drugs generated incremental improvements in survival. A well-known example is Genentech’s drug Avastin, which was estimated to extend the life of late-stage lung cancer patients from 10.3 months to 12.3 months.2 In contrast, no drug has ever been approved to prevent lung cancer, and only six drugs have ever been approved to prevent any type of cancer. While this pattern could solely reflect market demand or scientific challenges, in this paper we investigate an alternative hypothesis: private firms may invest more in late-stage cancer drugs—and too little in early-stage cancer and cancer prevention drugs—because late-stage cancer drugs can be brought to market comparatively quickly, whereas drugs to treat early-stage cancer and to prevent cancer require a much longer time to bring to market. More broadly stated, we investigate whether private firms differentially underinvest in long-term research, by which we mean technologies with long time lags between the initial spark of an idea and the availability of a commercially viable product. We document evidence that such underinvestment is quantitatively significant in an important context—treatments for cancer—and analyze potential policy responses."

I'm so smart I could diagnose myself

Yesterday will probably go down as one of the not so greatest days in my life. Why? Because I pretended I was a healthy person. And it didn't end up so well.

Allow me to provide some of the story. We had to dig up a lot of the plants in our garden because our retaining walls are collapsing and we have to pay big bucks to a mason to fix them. It has been very hot and dry here for the past few weeks. 90s for the last few days even - which rarely happens in Boston. My poor plants which should be in the ground and in the shade are in pots in the back yard in the hot sun.

I noticed yesterday that some of them were very dry and wanted to water them. The spigot in the back yard was put up by giants and I have to stand on something to reach it. I pulled out my usual little 12" high little table to stand on. As I reached up, the table collapsed and I felt my knee bend sideways. That was a very bad moment. No one was home but the mason's assistant but he came to help me get back to the front door and inside. I could hobble.

But because of my extensive medical background, I knew exactly what to do. I went to the freezer and got an ice pack. Then I picked up the phone and called my doctor's office. I knew I needed an x-ray and possibly more. They suggested I go to the walk in clinic last evening but I declined and asked for an appointment today instead. But as I sat with my knee elevated it really started to hurt (even through all my RA/fibromyalgia meds) and I asked my husband to take me to the walk in clinic.

I saw a doctor and got an x-ray as I expected. The bones look fine (as I expected) but the doctor thinks there is ligament/muscle damage (as I also thought) and referred me to an orthopedic doctor. This is exactly as I assumed would happen. I need to call today if I do not hear from them by noon to get to see a knee doctor. (Maybe I should have just called my knee doctor first -  yes I have a knee doctor, and an ankle doctor, and many other specialists.)

They did send me home with a knee immobilizer, a totally worthless piece of equipment as it forces me to overwork my hip (and my bursitis) and causes more pain than is in my knee. They also recommended crutches or a cane, both of which I declined. But I did ask my husband to find one of the crutches in the basement as it turns out I need it for stability and weight bearing.

So one moment of pretending I was healthy allowed me to sprawl on the backyard in pain. The good side? I really need a positive here. I have a reason to sit around on my butt all day (except going to the dr and possibly getting my nails done) with an ice pack on my knee during this 90 degree weather. I am not discussing the downside at this point because I am pretending it doesn't exist. Denial? Yes. But I did know what to do and what I needed medically right away. 

Chronic Illness Truths

I met a woman named Julie on Sunday. I was giving away yarn from my stash that I will never use and she knits hats for homeless people. She also has health issues and understands what it is like to change your life to accommodate your ailments.

Anyway, Julie is writing an anthology of stories of people who are living with chronic illnesses and is looking for people to contribute their story by September 15, 2015. You can find out more on her Tumblr site here.

I find the idea of me writing about life with chronic illnesses intriguing. I have written a lot about life with cancer and my cancers are probably more treated as chronic and not terminal illnesses. They are also not acute illnesses meaning they won't go away. My cancers are symptomless, for now but they could always return, which just adds to the fun.

Life with a chronic illness which is symptomatic is very different than one that doesn't cause a lot of pain. My life with degenerating disks started to cause me some pain in my back and hips. The my life with RA and fibromyalgia is loads more fun. I have pain in many more places and it has changed my ability to work more hours and my ability to get a good night's sleep, walk any distances, stand for more than a few minutes, and all sorts of basic things in life.

I think I will write something for Julie's anthology. If any of you feel the need, check her site and write something yourself.

Do you know whats in your medical records?

Do you ever look at your medical record? The hospital I go to just switched to a new system with an electronic patient portal. I can now go in and check it regularly. Since its been active for less than six months, its needs some more data but I can still see a lot of information including visit notes from doctors, test results, etc.

In recent years, I would go get printed out copies of test results anytime I wanted. At one point I became obsessed with my blood counts and created a spreadsheet of them and then found all my previous blood tests and now have records going back to 1998. And no, my red blood counts have not recovered since chemo and have remained low.

The other day the Wall Street Journal ran an article about taking charge of your medical records. And it astounds me how few people actually look at their medical records regularly.

This is important people! Medical errors can be fatal. I know I am allergic to benadryl and prednisone so if I have any kind of reaction, I need to make it clear they cannot treatment with either - and both are commonly used to treat reactions. Never mind the fact that I am also allergic to the '-cillins';  penicillin, amoxicillin, etc.

Knowledge is power. If your doctors are not able to electronically access your records, you need to make sure you keep them up to date with all your information including prescriptions, test results, procedures, and other doctor appointments.

Cancer Drug Costs

These prices are out of control. Upwards of $80,000 per patient per year or treatment protocol. Yes insurance companies pay the bulk of the costs but patients are hit with 20-30% out of pocket co-payments. Since the average family income in the US is $52,000, how are we supposed to pay for this? Can you only beat cancer if you are rich? That really creates a chasm between the 'haves' and 'have nots'. And the current insurance system cannot afford them either.

There is a new call by a group of doctors, oncologists, to get a better control of the pricing set by the drug manufacturers. This was announced in a recent issue of Proceedings published by the Mayo Clinic. It was also written about in Time Magazine and there is a petition on Change.org.

They offer a substantive set of arguments for the pricing changes that are definitely worth the read. They also discuss the high costs of developing drugs that are borne by the manufacturers and how that should be changed as well. They are not just firing at the drug manufacturers but providing multiple recommendations:

"Among the recommendations are allowing Medicare to negotiate prices, permitting cancer drug imports for individual patients, and passing laws to keep drug companies from delaying access to generic drugs."

My only complaint on this issue is that they focus on cancer drugs and not on the other high priced drugs out there. In my opinion, the changes should effect all drugs.

Please go read the articles and sign the petition.

Wash Your Hands

What is the single most important easy thing you can do to improve your health? Wash your hands. Often.

Now that I have rheumatoid arthritis and am on immune suppressing drugs that make me much more susceptible to colds and infections, I am becoming a germaphobe. I will not alter my lifestyle and avoid crowds, malls, movie theaters, and other groups of people. Nor do I believe in those stupid hand sanitizers which help create super bugs which are resistant to treatment.

But I do believe in hand washing. When I go to the gym, I wash my hands before I work out and I wash my hands as soon as I am done with my work out. And I try to remember to wash my hands when I come home from being out. As well as when cooking, before eating, etc.

Friday at the gym I was speaking with a woman as she was washing her hands after working out. She said that since she started washing her hands regularly, she has had fewer colds herself.

It amazes me how many people do not wash their hands, even after using the bathroom. I am particularly disgusted by people who do not wash their hands after using the bathroom and then use the gym or eat in a restaurant or other places. Speaking of restaurants, menus are disgustingly germ covered.

You can try all kinds of arguments with me about washing your hands and how it might dry out your skins or any other silly reason. The real reason for washing your hands is to clean germs (and dirt) off of them so you don't carry them around with you and on to other places. You can always put lotion on your hands if you are concerned about dry skin.

I was quite pleased to read this article about hospitals do to prevent infections and the top item on the list was hand washing.

If you get home at the end of the day and can't remember washing your hands, do yourself a favor and wash them.

Why people stop blogging

This morning I actually took a look at the back end of my blog and the list of blogs I follow. There was probably over 100. I went through the list and cleared out a bunch of them who either I am no longer interested in or are no longer blogging.

Obviously there are two reasons people stop blogging - either they just decide to stop or they are no longer with us, unfortunately. The second group are the ones that sadden me - lost friends.

But the first group intrigues me. Why do they stop blogging? Most of the blogs I follow are health related blogs, many of them on breast or thyroid cancer, arthritis, fibromyalgia, or other lifelong ailments. So why do these people stop blogging? Its not like they are cured. But maybe they think they are. Or maybe they no longer have coping issues?

This is why I am intrigued. I think of blogging as a coping/venting tool for many. That's what it is for me, after 8+ years of blogging. My health is constantly evolving with new issues cropping up periodically (but I really wouldn't mind if I didn't have any more issues thank you) so I keep coping and keep blogging. Do these other former bloggers non longer feel the need?

The emotional impact of an ailment may dim over time and perhaps they get a false sense of security and assume they will be fine or are able to work past it and get on with their lives. Or maybe I am just really jealous that they are better and I am not? Damn.