Keeping secrets

Everyone keeps secrets - like how much I weigh. That is known to me, the scale, and my doctor's office. Its no one's business but mine and, truth be told, I really do not like the number but that's another story. There are other instances where keeping secrets is okay. Like a secret family recipe. Or a medical history.

These secrets are just information we want to keep private for whatever reason. It is fine that they are kept private and not shared indiscriminately.

Then there is the issue of secrets vs. transparency. This is when secrets are kept between groups where they should not be. Transparency is important between groups so that honesty leads and there can be understanding and appreciation of the other side. Without transparency, dishonesty can be suspected and with suspicion comes distrust. Which leads to bias and anger.

A big area where there is no transparency is in drug pricing. The pharmaceutical industry has a problem with this. Yesterday (was it yesterday or the day before?) I blogged about that 'gentleman' who jacked up the pricing of an existing drug for no given reason.

And for an industry already struggling with an image problem over the rising costs of prescription drugs, companies are going to have a hard time distancing themselves from one of the most controversial men in America.

The reason is a lack of transparency. Drug makers do not really want to explain how medicines are priced and, as a result, they have adopted an air of secrecy in which one cowboy can create havoc for an entire industry.

“The [Shkreli] episode is really an extreme manifestation of an attitude that has taken over the industry,” said Bernard Munos, a former corporate strategy adviser at Eli Lilly who is now a senior fellow at FasterCures, a medical research think tank. Most drug companies “are not raising prices by 5,000 percent, but large prices will leave patients with the same impression.”

It’s certainly true that funding drug discovery is expensive. The latest estimate of what it costs to get a drug out the door is, on average, $2.6 billion, according to a 2014 Tufts University report that was funded in part by industry.

Yet pharma leaders have done a poor job of explaining how the cost of R&D translates into a need for climbing prices or the sky-high sticker prices that are commonly set for new medicines from the get-go. Rather than opening their books, drug makers continually repeat the refrain about increasing development costs, and they avoid any candid discussions about cost that may invite more interest in setting price controls.

This is not a good thing. We need transparency to prevent more 'greed based' actions. Honesty and its partner transparency should rule. Secrecy and suspicion should be

The big reveal

I have worked at my  job for almost 6.5 years and am leaving in five weeks. Well I will work remotely one day a week and come in once a month until my replacement is found. Which I assume will take until spring.

I have made friends at work as I have been there so long. They make fun of  my health regularly. And they only know half of it. Yesterday's joke was that I have more ailments than all the patients on the first floor of the local hospital combined. We laugh about it. They wonder how I can laugh about it and I say I have to laugh about it because I really do not have any other choices.

But they really do not know all about my health. They know I have a bad back, fibromyalgia, and rheumatoid arthritis. They do not know about cancer and all the rest. I have decided what I will do when I am done working there is I will give two of my co-workers a link to my blog so they can keep in touch and follow along with the rest of the disasters in my health (unless I miraculously get cured).

In the past, I have never shared my medical crap with my co-workers. I have always felt it doesn't belong in the workplace and I might some day want a reference for another job. At this point, I am retiring and hope to apply for disability social security. I don't plan on needing another job reference because I don't think I can continue to work at all.

So finally I can reveal my medical history to anyone I want to with out fearing any impact on my professional life. I mean who wants to hire someone as unhealthy as me?

Taking charge once again and chaos

I usually go along with the flow of medical care and go to my appointments like a good girl. But every so often I take a step back and make some changes.

When my therapist retired at the end of last year, I switched to a new one who I didn't like. Then I switched to another. I really don't like her and find her pretty useless to me. So I think she is getting the ax when I see her next week.

She also sent me to a fibromyalgia support group, one of the most useless meetings I have ever been to. I will be opting out of that as well. One of my big reasons is that I feel I get no support from it. And as its an official 'group' at the hospital, I have a $20 co-pay every time I go. I sometimes go to the breast cancer support group at the hospital and there is no co-pay so I have no idea why I have to pay for this one. But not any more.

Right now I have enough going on with out wasting time and money on useless meetings. Our house is a disaster right now. The only things in the living room are a sofa, a sideboard, two lamps and the tv on a tv stand. Everything else is stuffed into another room. The master bedroom is empty of everything but two dressers. We are sleeping on the mattress and box spring in the guest room which is packed full of boxes and other stuff. The kitchen is also a mess. This is all because we are having the walls painted. We hope they will be done today so we can put everything back tomorrow.

The exterior paint is being touched up. We had it painted nine years ago with a 'lifetime' paint that hasn't lasted. The manufacturer is providing new paint free of charge that was supposed to arrive Tuesday. I called yesterday and found out he 'forgot' to ship it. He swears he would ship it yesterday so we should have it next Thursday (it comes from British Columbia). I will be on the phone with him later today to make sure it shipped. Now it looks like the house will be painted the day before it goes on the market on 10/15. 

I don't need any more stress. Grrr.

Once again its Pinktober

Except I do not celebrate Pinktober. At this time of year I look forward to apple picking, Columbus Day weekend, leaf peeping, and Halloween (which is the best annual excuse for a sugar high).

I am braced for the onslaught of pinkness and really do not care for it. I will not be walking, running, shopping, or donating for anything pink. Because of Pinktober, I actually resist contributing to anything pink for the month.

And it is also Liver Cancer Awareness Month.

I think this year I will support Liver Cancer instead of pinkifying anything.

Breast Cancer Research Topics

In the middle of pinktober, after Metastatic Breast Cancer Day (October 13), I have some thoughts on breast cancer research I would like to share:

My first wish is that more money, time, and focus would be on metastatic breast cancer research. Breast cancer does not kill, metastatic or late stage breast cancer kills. The proportion of funds spent on metastatic breast cancer is minuscule. This needs to change or more and more women (and men) will continue to die from this disease.

My second wish is that more research would be done on DCIS to determine which cases are more likely to develop into potentially fatal disease vs. those which will remain benign. The vast majority of cases of breast cancer which are diagnosed are DCIS. Many of these patients are subjected to extensive surgery without really knowing if it was necessary or not. This needs to change.

Finally a cure for cancer would be quite welcome as well. According to Star Trek, a cure for cancer was discovered in the 21st century.....