Bias against disease

This article reminds me of the bias that exists with a disease diagnosis. How often do we hear 'Did you hear Susie's brother has cancer?' 'How sad. He was such a nice man.' Instantly a diagnosis becomes a mental death. The patient is written off and sent to some other world. When their death finally occurs, whether in one year or fifty years, you hear 'he was such a fighter, he struggled so long and hard'. But I don't think these people actually knew the patient and what he went through as they wrote him off at the diagnosis.

Leper colonies were the previous centuries way of creating bias and discrimination against those with a disease that was understood and feared. Now we don't physically  put people in hidden colonies as much. (I believe still in parts of Asia those with an HIV diagnosis are sent to secret villages.) But we still mentally write people off when we hear such a bad thing. No they didn't move to Australia, they still live down the street and go to the doctor a lot.

So I am very happy to see the kind of support people who get it do know. I 'know' Michelle from her blog which was recently renamed 'Mission Remission'. She is a young mother who was diagnosed with colon cancer in 2008 and now is going through a recurrence. She has amazing support. In addition to her blog she has a fan page on Facebook with hundreds of supporters who help her with donations to help her and her family and support her through this latest cancer adventure. This is a good story.

However, then I read the story of an Iranian woman who is trying to get permanent residency in Canada. She has been there on a student visa since 2005 and trying to get the residency visa. However, since her application she has been diagnosed with breast cancer. So now the concern is that a return of her breast cancer would cause a strain on the health care system. (First of all who knew that you need a medical exam to get permanent residency in Canada - how's that for discrimination?) You can't live there if you are sick and might strain the health care system. This woman is a victim of circumstance. I am sure this would not be an issue if she did not have a breast cancer diagnosis.

Phooey to the Canadian government on this one. This is bias. Along with a bit of stupidity as well. One case of breast cancer is not going to destroy the Canadian health care system and if it is, then the healthcare system is in very poor condition. And its not like its contagious and going to infect millions of others.

Face it, in our life times, everyone will get there share of medical issues. There are some luckier than others who may not need as much care as the rest of us. Then there are people like me who get more than their share of medical care. There is no way of knowing who will get what and when.  So why do we have people who create and allow such bias and stick cancer people in our modern 'leper colonies'?

Social media for patients

What was I thinking? I volunteered. My husband said volunteer is a synonym for sucker, which sometimes I believe. But I make him volunteer at things anyway. At one organization he is known as the man who 'picks things up and puts them down'.

Anyway, I belong to a million or ten online communities. I am on Facebook and Twitter and use both accounts. My business/professional (a/k/a non-patient)persona is on Linked In as well. I also review almost every restaurant and hotel we go to (but that's a little different).

As a medical patient I have seen all kinds of communications and support. And by keeping the active bullshit filter in place, I have managed to avoid the rest of them. There are some sites I do not participate in because I don't like what they do or the way they manage things but I am pretty active otherwise.

But anyway I belong to one site called Wego Health Activists. I contribute there periodically (when I remember to repost by blog over there) and actually met with them in person - which is kind of weird for an online community to meet in person. But they approached me and asked me if I would participate in a session at a pharmaceutical company on the importance of social media. It would mean going to New Jersey for a day. Which means travel. But it would also give me a chance to contribute.

If you think about all the social media that is out there and all the ways patients can communicate with each other - there are organizations, hospitals, medical facilities, patient run, etc. But you never run across any input from pharmaceutical companies do you? No. They are in a black hole somewhere. No input. No information. At all.

Now I know there is the issue of everything has to be approved by their legal department and they can't give medical advice because they aren't your doctor but wouldn't it be nice if there was a little communication in language we could all understand. Its all part of the sharing that is inherent in social media for the rest of us.

Social media is a very important part of being a patient. We get support, we get information, we get referrals, and most importantly, we learn we are not alone. So why can't the rest of the health industry be a part as well?

Cancer myths

There are more myths about breast cancer and all other cancers. You know the ones - you can get breast cancer from wearing deodorant, underwire bras, living near power lines, blah, blah, blah. If anyone tells you they know how you got your cancer, just like if they tell you their 'cure' for cancer, they are full of you know what. And you can tell them (as politely as you want) to go take a hike.

One myth I think is overwhelmingly stupid. 1 in 8 is not your chance of getting breast cancer in your lifetime. 1 in 8 is the chance you will get breast cancer when you are 85. The stupidity that allows this one never ceases to amaze me. If anyone says it, I would reply 'liar, liar, pants on fire'.

But there is one myth that is still a myth unfortunately. That is that breast cancer is preventable.


'Alas, no. Although it is possible to identify risk factors (such as family history and inherited gene mutations) and make lifestyle changes that can lower your risk (reducing or eliminating alcohol consumption, losing weight, getting regular exercise and screenings, and quitting smoking), roughly 70% of women diagnosed with breast cancer have no identifiable risk factors, meaning that the disease occurs largely by chance and according to as-yet-unexplained factors.'

You can try as much as you might but you can not eliminate the risk of breast or any other cancer in your life. This is the one myth I would like to see proven.

Rethinking pink

The Komen hoopla over Planned Parenthood funding managed to put breast cancer spending under a microscope. There is a known benefit to having mammograms but more money needs to go to research which will ultimately save more lives. Mammograms only find the cancer but if you can't cure it, what's the point of the screening? Okay, that's a little harsh but I think its true.

Breast cancer charities abound. Its one of the most common cancers and that means there are lots of voices to lead the rallying cry. But what if the money spent on pink things, went to research instead of to making things pink? Who really gets the pinked money anyway?

I detest the pinkification of breast cancer. Making it pink, does not make it go away, kill fewer, or cure anyone. We have plenty of pinkification these days, primarily thanks to the Komen Foundation (for THE cure). I think they have done wonderful things to raise cancer awareness but spending all their money on races and other pinked events and things doesn't do much for me.  

'The Komen foundation allots 23 percent of its funds to research and 16 percent to screenings; 37 percent goes to education, 7 percent goes to treatment, and the rest goes to fundraising and administration.' So if I can do math this early in the day while on my first cup of coffee, 23+16+37+7=83%, leaving 17% for fundraising and administration, which isn't that great but isn't that bad either. However if they are for THE cure, why are they only spending 23% on research?  That does not do much for THE cure, does it?

Call me an early morning cynic this morning (my husband claims I woke up too early and that means I'll be crabby all day). I just think that pink does not cure breast cancer but more research just might. If you are looking for a worthy cause to donate to breast cancer research, skip the pinked, and look at some others:

National Breast Cancer Coalition - has set a deadline to end breast cancer by 2020. I admire their efforts but think a deadline is a little unrealistic. I mean if they find a cure, why do they have to wait until 2020? If they don't find a cure by 2020 are they declared a failure?

DOD's Breast Cancer Research Program - no you can't donate to this I think but an admirable effort as well. They are the ones who developed the vaccine that is in stage III clinical trials (that I didn't get into) to prevent breast cancer recurrence.

I also like Avon Foundation Breast Cancer Crusade.  "...the executive director of the Avon Foundation Breast Cancer Crusade, says his organization splits its funding for screenings and science fairly equally. The foundation allots 75.5 percent of its funds to grants, including breast-cancer research and programs that include screenings; the rest goes to fundraising and management. “Research will end the disease,” he says, “but we have to take care of women who have the disease today." I like the part about taking care of women who have the disease. Some one has to. Pink things don't take care of us.

Let's take care of those of us with cancer and do some research to find a cure so there don't have to be as many of us in the future. You can do that without being pink.

Cancer is hilarious

Well from the patient's side it is, definitely. I posted about being funny last week (or sometime recently that has fallen into the abyss called chemobrain). But some people are funnier than me. I read a blog called 'Cancer is Hilarious' which details the life of Kaylin who had a sarcoma and all sorts of medical adventures. Then in my pursuit to read all things funny about cancer, some how yesterday I stumbled across this fun little project called "Terminally Illin'" where the same Kaylin is raising money on Kickstarter to help publish a cancer cartoon book.

Slightly cynical, slightly irreverent, and REALLY hilarious, "Terminally Illin" is a candid look into the life of a young adult battling cancer, but with a psychedelic, sci-fi twist! It’s more than a comic book: It’s provocative, educational, entertaining, and totally original.  Think of "Terminally Illin" as a chemo-induced "Alice in Wonderland' meets campy 'Hollywood' action-adventure.

In our story, our hero goes in for her first day of chemo, but ends up getting lost in a fantasy world within her own microscopic body - on a quest to meet her disease face-to-face and kick it's butt!!

She's joined by her pet kitty, Iceman, as they set out to destroy the Tumordome, the invading cancer cell army, and their leader - the little dictator that's bent on world domination. But they don't do it alone - they make friends with a rag-tag bunch of weakened immune system cells that are on their last leg.  Hilarity and butt-kicking will ensue.  

This is their second book. I wish I had a copy of the first book as I wait for this one to come out. Anything that invokes a chemo-induced Alice in campy Hollywood sounds good to me.  There is not enough humorous stuff about cancer. There is not enough cancer stuff for young adults with cancer. So you add it up and you get funny stuff for all of us with cancer, especially those on the younger side. I'm all in here.

I will donate to their cause on Kickstarter, I encourage others to donate as well.

Balancing Act

Are we part of the problem of high health care costs? When I say we I refer to us cancer people and all the near miss cancer people out there. In other words, the people who get lots of medical tests and doctor visits.

There is a little balancing act here between the opposing sides of:

- detecting new or potential cancers early
- keeping the patient calm
- not over testing or over spending

That lovely phrase, 'With your medical history, we need to be sure... blah, blah, blah', that sends me on to  more medical procedures than 10 average human beings combined, I am sure I am responsible for more than my share of high health care costs.

My doctors want to make sure any new or returning cancers are caught early to prevent more expensive and nasty medical adventures. So in return for annual and semi annual and three/four time a year follow up appointments, I am supposed to be happy that they are doing their diligence at this endeavor.

My peace of mind these days is fairly calm, except when I need an ativan to get to a screening which causes a nasty case of 'scanxiety'. I usually can live in the sane world where cancer is only lurking in the back of my brain as opposed to screaming in my frontal lobe. I usually can balance this but any time a doctor says 'with your medical history, we need to be sure... blah, blah, blah' I want to unleash my inner two year old and have a nice little temper tantrum and stick out my tongue at them.

But then there is the 'let's not over test' thought process. I am a big fan of this. I have lots of friends who get PETs, CTs and MRIs to look for cancer cooties. I only get thyroid ultrasounds and mammograms these days - accompanied by lots of poking and prodding. I have no desire to get PETs, CTs, and MRIs personally and if I am sent for one, I may need a temper tantrum

I compare this to normal people who didn't have a mammogram until the age of 40. I started at 23 so I was ahead of the curve because of a benign tumor at that age. I also have had more blood tests and prescriptions than the average person and my current total is 8 surgeries to date (my father beat me on that with a lifetime total of 23). So are the high health care costs my fault? I'm hoping not because I am still here which is the whole point of them in the first place.

Tiered health insurance options

We have heard about the options in tiered health insurance. This is where the insurer negotiates rates with different medical facilities and then charges the patient differently based on where they go. That generic drugs are cheaper than brand name ones, etc. are another side of this.

I have always thought this was a good idea. I think patients have a tendency to either go for medical care to wherever their doctors send them or where they have always gone. Patients are human beings who are essentially lazy and take the path of least resistance. But what if the insurance company started charging them more for where they have always gone? I never thought about that part.

Yesterday as I was rushing to go to work on a rainy Monday, I went back first for my hair brush and second to see if I left the stove on (otherwise I would have had a bad hair day and driven myself crazy all day thinking I was burning down the house with the cat in it), I was also listening to the radio. They had a commercial on for some big health insurance plan where the CEO or some big-wig was on talking about the how's and why's of tiered health care.

I know I go to a relatively 'expensive' hospital but it is the closest one without going into the traffic filled city of Boston. Then the horrifying thought occurred to me - what if they started charging me more to go where my 30+ years of medical records reside? 'Surely they can't mean me' are the blinders we live by when these changes are announced. If this happens, I will have to become a rebel and protest this.

I understand the principle behind this steer patients to the less expensive medical facilities. This may also get them to use the smaller community facilities instead of the fancy (expensive) ones but there also should be some logic applied to this formula. Somewhere in the equation should be the consideration for the patient who doesn't want to go geographically far away for treatment when it good treatment is located near by. (This integration intentioned busing applied to medical care - send the patients to far away places because they want to keep things 'even'.)  It sounds good in theory but isn't with the patient's best interests in mind. Hmmm.... must be the insurance companies in charge again.