Americans united against big pharma

Sometimes I wonder if I am the only one who doesn't approve of  big pharma. And now it turns out that in general more of us disapprove of big pharma and think they are ripping off patients who rake their prescription medications. Its nice to know I am not alone in being critical.

You can read the article here. Big pharma companies have a lower favorability rating than the erect of the healthcare industry, airlines and banks. And only slightly more favorable than oil companies.

Things that annoy me

I am sure you all can think of things that annoy you. We all have our pet peeves. But since its my blog, I get to tell you mine. You can feel free to leave a comment about yours if you want too.

I always get annoyed by people making assumptions. You know they assume you are going to die because you have cancer. Cancer is not fun but its not necessarily going to kill you. You could get hit by a bus anytime. Think of it that way for a bit. But I really hate it when people make assumptions about others relating to health. You have no idea what I am going through so stop assuming anything about me. You can ask me about it but don't assume I want to tell you my entire medical history. I will tell you what I feel like discussing but I am not going to have an in depth discussion about my health.

Then there are the idiotic thoughts about my health by, well, idiots. Those are the people that either:

1. Ignore the fact I have health issues and can't do what I used to do. Do you want to go hiking? We are going peak bagging this weekend. You should come with us.
2. Assume I will be cured. (See assumptions above.) I am not going to be cured. The best hope is no further health issues or disease progression. Stop telling me that because I had a back procedure, I must be fine now.
3. Tell me how I feel. You must not hurt much today since you didn't work yesterday. Um, pain and fatigue don't give me breaks because I took a day off. That day off was to recover from the days before.  (I think I am stuck on assumptions here).

Finally there are the people who insist on telling me what treatments I need. Did you go to medical school? No? Then shut up. I don't really care what your cousin's neighbor's dog walker's mother's hair stylist's friend had for treatment for a completely different disease twenty years ago.

I also get annoyed by things like people who stop their car in the middle of the road for no reason,  people who use their cell phones in restaurants or movie theaters, and at the cat who won't eat enough because he's old and can't smell his food, but you get the point.

See, I'm not perfect. I am just a normal person stuck inside a body that has lots of health crap.

Those other second opinions

So you get diagnosed with any not-so-fun ailment because you had some tests and the radiologists or pathologists read your results and told your doctor what the diagnosis was. However, as a new study points out, not all test results are black and white.

This new study found that pathologists only agreed 75% of the time when reviewing breast biopsy results, until they met and discussed the results. The study recommends in the end that perhaps a second opinion is warranted if the results are not clear cut. Sometimes your doctor can be the one who gives the second opinion but other times, you may need a second pathologist to review the results.

I had never thought about this ever. I know I have had x-rays, biopsies, scans, etc where the doctor has added comments to what the radiologist or pathologist has said. When I was diagnosed with rheumatoid, my rheumatologist waited to get back to me on the results of my x-rays because she wanted a specific radiologist to review them because they were very good at detecting RA in x-rays.

But I had never thought of asking if I could have a second pathologist or radiologist look at my biopsy or scan results. It would never have occurred to me. But it completely makes sense. If something is subjective at all, maybe more than one person should look at it. A new point to ponder. And this study also says to ask your insurance company if this is covered... which sounds like some might cover the second opinion.

A Novel Idea

Let's ask the patients what they want. In the past, funders for the biotech world never thought that patient's opinions matter. I mean really, what possibly could the patient's opinions matter in funding start ups in biotech?

Now funders are asking patients about their opinions as well as on sales and marketing of a drug.

Think about it for a moment, the car industry spends millions upon millions on customer surveys. How else would they know that the number of cup holders is so important to minivan moms? Its an age old theory to ask the end users of a product what they think  - hence Amazon reviews. But it took a long time to get to biotech.

I have a bunch of opinions for on my medications as well:

• Stop making giant pills. Squish everything down into little bitty ones that are easier to swallow. But make them bright colored so you can find them if you drop them on the floor.
• No medications should have the side effect of 'may cause weight gain'. They should all suppress your appetite
• About those bubble packs where you have to press the pill through the foil? No, no, no, a thousand times no. They make my hands hurt. 
• And the stretchy foil impossible to break plastic that tops vitamin and pill bottles? Outta here. They need to be the nice easy paper ones that I can rip off with out a sharp instrument.

Okay? Thanks. Bye.

The cancer patient's interpretation of the doctor's advice

I came upon this article by a surgeon who has partnered with some cancer patients to come up with this advice when you are blindsided by cancer. While I agree with it overall, of course I have a few comments.

His advice is summarized as:

• Take a breath, seriously
• Own your cancer
• Don't run to the internet
• Select your physician partners
• Understand two critical features of your cancer

I agree with to take a breath and try to relax.  You are not going to die tomorrow (unless the bus doesn't miss). You have time to breathe and try to figure out what is right for you. You can take the time to absorb with what you have just learned. Go home, sit down and think about what you have learned and what you want to know. Then you can get back with your doctor for more information and options.

Own your cancer and your life. Don't just give up. Keep ownership of your life and take ownership of your cancer. Be a participant in the decision making process. Get a cancer buddy/caregiver to help you through this and hold your hand, bring your bowls of ice cream, and glasses of wine.

I think you should go to the internet for information with the caveat that you find out the good places to go for information on your cancer. Do not wildly Google your cancer and the words 'death rates' - you will only stress yourself out. But if you have information to direct you to where the information is about your cancer where you can learn the right kind of information which is not a pack of lies, aka a pile of hooey. My tip, if you do not know where to start, always start with the American Cancer Society.

I never really have selected my 'physician partners'. What I have done, is ditched any which I did not like. But I have never physician shopped or second opinion hopped.

Two critical features about your cancer are:

"First, you must learn how your specific type of cancer behaves, as each (breast, prostate, whatever) is unique. Second, you must understand your specific cancer stage."

This will help you greatly to understand where you are and what are your options. You are putting a name on it. Which leads me to my personal requirement:

You cannot have an ailment or take a medication without knowing how to both spell and say it properly. This is another way you take ownership of your cancer and learn more about it.

Okay, so the patient came through with agreements and disagreements but I think we both can agree that cancer should not take you over. You are still you.

#IStandWithLisa

In case you missed the ferfuffle in the land of cancer blogging and tweeting, allow me to fill you in. Ann also wrote about this and you can see her opinion over here as well.

Lisa Bonchek Adams has stage IV breast cancer and tweets a lot about her life with cancer. You can follow her @adamslisa on Twitter or her blog. She is living her life as best she can and talks about it on line through tweets and blog posts.

Then along came Emma, who we will call the Idiot for lack of a better term, who wrote for the Guardian and compared tweeting to funeral selfies - really? Hence the name. What she wrote was taken down by the Guardian after a day or two but you can read it here. (See things on the Internet never really go away).

The Idiot complains that Lisa tweets too much. Is that really possible? Some people have conversations and dialogues on Twitter so they might have a high volume of tweets. So what?

And the complaint that of over exposure on twitter becomes a funeral selfie? She is not dead so its not a funeral.

So anyway, the Idiot's column was posted and then many complaints were received and it was taken down because the Guardian said it did not meet their standards.

That was bad enough and then Mr Idiot (her husband) wrote for the New York Times comparing Lisa's fight to I'm not sure what. He did talk about his father's death from cancer in England a few years ago and medical costs but it was fairly pointless in my opinion.

When I first read these articles and the blog posts about them from others in cancer land, I wondered have these two journalism professionals (Mr. and Mrs. Idiot) ever bother to talk to Lisa directly? I do not think so. I could be wrong but their writings were not about Lisa but about her tweets. In professional journalism, isn't it appropriate to contact the subject of their writings? I mean again I could be wrong but in terms of verifying information and all that, isn't that correct?

So I stand with Lisa on this. And Mr and Mrs can go take a hike.