Blatant Discrimination

I recently learned some surprising discrimination. A local committee part of the NHS in the UK has decided to institute what I call blatant discrimination.

"...one local health committee in the UK has announced a controversial policy "to support patients whose health is at risk from smoking or being very overweight."

For an indefinite amount of time, it plans to ban access to routine, or non-urgent, surgery under the National Health Service until patients "improve their health," the policy states, claiming that "exceptional clinical circumstances (will) be taken into account on a case-by-case basis."

The decision comes from the clinical commissioning group (known as a CCG) for the county of Hertfordshire, which has population of more than 1.1. million.

The time frame for improving health is set at nine months for the obese in particular; those with a body mass index over 40 must reduce the number by 15% over that time period, and those with a BMI over 30 are given a target of 10%.

The target for smokers is eight weeks or more without a cigarette -- with a breath test to prove it."

I could not believe this. Some 'holier than thou' sorts have clearly decided that they are better than those evil people who are overweight or smoke.

Look I was a smoker for far too many years to count. Its not an easy habit to quit. Smoking has been called more difficult to quit than heroin. It takes many people months or years and many tries to quit. Eight weeks to quit is a very tight deadline. And a breath test? Seriously? Like a breathalyzer?

I find the obesity one even more offensive. Is it my fault that I have managed to gain multiple pounds (so many that I find appalling) over the past twelve years? Is it because I have so many ailments? Is it because I am on so many medications with the side effect of 'may cause weight gain'? Is it because I like to make a nice dinner for my husband every night? 

Can I lose weight? With great difficulty. If I wasn't recovering from knee surgery I would regularly exercise. But that wasn't making me much thinner. Its very difficult for me to lose weight. And I am not the only person who has problems losing weight. There are many people with medical problems, metabolism issues, and more that would have to eat only lettuce leaves to lose weight. Some people just have a predisposition to being heavy.

Finally, the BMI is not a perfect measurement. There are many who disagree with it.

I cannot believe in this day and age, people in medical professions would blatantly discriminate against people who are fighting hard issues - quitting smoking or losing weight. And then denying them medical care based on these same issues. Well, at least I am not the only person who finds these policies horrible:

"The new policies came under immediate attack from experts and interest groups.

"Singling out patients in this way goes against the principles of the NHS," said Ian Eardley, senior vice president at the Royal College of Surgeons in the UK. "This goes against clinical guidance and leaves patients waiting long periods of time in pain and discomfort. It can even lead to worse outcomes following surgery in some cases."

The conversation has been going for some time, experts agree, but the question is the ethics -- and whether it would even work.

"Rationing treatment on the basis of unhealthy behaviors betrays an extraordinary naivety about what drives those behaviors," Robert West, professor of health psychology at the UCL Research Department of Epidemiology and Public Health, wrote in an email."

I am not alone but these are just blatant discrimination.

Cancer Discrimination and Bias

We live in a society full of bias which leads to racism, discrimination, fear and hatred. The media recently has reflected this with headlines full of racism, bias, discrimination, alt-right vs alt-left, protests, anti-protests, riots, deaths, fear, hatred and more. But it reminds me that there is bias, fear, and discrimination for those of us with cancer.

We are born one way and learn about bias, fear, and discrimination based on where we start. With a cancer diagnosis, all of this is turned upside down and we learn about more bias, fear and discrimination based on that single word 'cancer'.

First, let me say times are changing and it is getting better for those of us with cancer. I met a young woman once who was diagnosed with thyroid cancer at age 17 about 1980s. Her parents were embarrassed that their family member (daughter) had cancer and never told her and never allowed he to have the appropriate follow up treatment, radioactive iodine. She has had multiple recurrences since. Times are certainly better but not perfect, as seen in today's headlines.

For those of us with cancer, we face these issues all the time:

Fear: how many of you have been avoided after your cancer diagnosis? All? I think so. Those are the 'friends' who are scared cancer is 'catching'. Or they do not know how to react to someone with cancer.

Discrimination: Don't tell your current or any potential boss you have cancer or you will face discrimination somewhere along the line. "She's a perfect candidate, but with her health will she be able to do the job long term? She will probably need a lot of time off for doctor appointments." This is illegal but it happens. Its not shouted but whispered. And all it takes is one person to think this who looks at your resume to put it in the discard pile to seal your fate.

Bias: You are sick so obviously cannot be expected to be in with the 'cool kids' any more. You are in with the dweebs at the back of the class again. Your social fate is also doomed. And those who welcome you are doing so with phony smiles over their secret fears.

With our cancer diagnoses under our belts, we learn who are friends are and go forward with them to face the fear, discrimination, and bias that is now in our lives forever. With big smiles on our faces.

Non-impartial doctors

Do I expect my doctors to be my best friends? No. But I do expect them to impartial and have no biases when treating me. I try to do my part - show up for appointments, take my medicines are directed, and take fairly good care of myself. I have had a few doctors which I have felt I didn't really gibe with but in my mind, I really want good care, not buddy-buddy.

A new study (because we always need new studies) shows that more than 40% of doctors state they have biases to certain groups. Some of those include obese patients, patients who do not speak English, or have emotional problems.

"The most common reason that doctors said they stereotyped patients was because of their emotional problems, which elicited biases among 62% of physicians, followed by their weight, which 56% of male and 48% of female physicians said provoked biases for them. Other triggers were patients' intelligence, language differences, insurance coverage, age, income level, race and attractiveness."

Hmmmm..... Well doctors are human beings and I think every person would admit there are just some people that make them recoil a tiny bit. I admit I am not perfect and have my own cringe factor for some people - like the scary homeless guy on the subway yelling obscenities. (I realize that their problems are probably worsened by lack of medical/psychiatric treatment and they should not be blamed for their issues but I just don't want to sit next to them.)

The problem is that when doctors have biases, whether conscious or subconscious, the patient usually gets a lower standard of care. That's a real problem. Its not ethical for doctors to provide for different standards of care for different groups but if its a subconscious bias, how do they stop themselves.

Insurer bias - or why insure (expensive) sick people?

One of the big issues with healthcare reform was so that sick people could be insured instead of being left hanging at the mercy of their insurance company. The act did eliminate pre-existing conditions from precluding someone from health insurance. But the jury is still out as to the bias issue.

Several groups are claiming that bias is creeping back into the insurance system. First patients try to figure out which plan is best for them. But the information on what drugs are covered and what are the co-pays for them are not on the top of the list of information.

For healthy people, this would not matter usually. But for us non-healthy people with potentially expensive medications, this does matter. I have one drug that my copay is $105/month. I consider that expensive. But its not. Some co-pays are in the thousands. If a drug is $80,000 or $100,000/year or more and the co-pay is 35% of the retail price, you can do the math.

I can see the issue insurance companies are facing. Sick people are expensive to take care of. Their medications can be very expensive. They require many doctor visits, and maybe surgeries, procedures, and hospital stays. Hospitals can negotiate with insurance companies to get discounted rates. But they don't seem to get anywhere with pharmaceutical companies in terms of negotiating prices.

Pharma companies claim that drugs take so long to develop and one in several hundred or thousands actually make it to market which is why that charge such prices. Then there are the whole positioning factors which come into list prices (this is true for everything from a candy bar to a car) as to what image they project. Expensive means it must be better. That is a whole other discussion that I have blogged about before and am sure I will again.

Back to the insurance companies. They put all these people into a pool and the premiums paid cover all the sick and healthy people. But the really sick, screw it up and can cost them lots of money. So insurance companies look for ways to cut costs and big ticket items, like expensive prescriptions, are on the top of the list.

And they hide the co-pays and things like that because its only in the details. And they say things like generics are this much, and branded drugs in this category are this, and the next category, and the next category, etc. And its not simple and easy to figure out.

To figure out what you would pay if you are sick, you can't just compare premiums, co-pays and expected number of visits from each company and get a number you think is the lowest. You need to call them and get them to tell you the costs of all your branded prescription drugs, plus you add in the number of expected doctor appointments, their co-pays, out of pocket maximums, and all those fun things. Then you get to decide. But its a lot of work.

Each year  you need to review where your drugs are in each little category and their new co-pays. And what if you need a new drug mid-year and it comes with a whopping high cost?

I don't think I blame the insurance companies but I think the data needs to be a bit more available for all of us sickies.

Sexist biology

Research on mice and other animals has historically been done on male lab mice. Because the female lab mice's cycles might mess up the scientific research. Hmmm...

This one makes me think. If all medical research is done on males, of course it is going to be biased. Just like when all legislators are male, women's rights lag.

So why the controversy? This has been a long running problem. As a layperson I have been aware of this for a few paltry decades. But now it is hitting the forefront as feminist biology is interfering and causing a few ruffled feathers.


So here's my layperson take on this. If all research is done on male mice so the little bitty mouse girly cycles don't interfere with the results, why do they think they can extrapolate and start using their findings on female anythings - from mice to humans - without complications.

It is known that some medications have different effects on males and females (take Viagra for the obvious example). Also at the end of years/decades of expensive research, the drug companies say they still need more years/decades of expensive research because their research didn't cover all potential groups who might benefit from the drug.

I know its a lot more complicated than that but if the basics of the research start off skewed, aren't the results going to end up biased? Let's start with a level playing field here.

#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.

Its not the patient's fault

It is never the patient's fault [unless their ailment was preceded by vast quantities of alcohol and the slurred statement of 'watch this!']. So why do people persist in being so insensitive to sick people? And then there are the people who know what you need to get better even though they never went to medical school. Or their religion will solve your problems.

"You have lung cancer, how many years did you smoke?"
"You have breast cancer, didn't you get your annual mammograms?"
"You just need to exercise and eat better and I'm sure the first 100 pounds will easily come off."
"You didn't pray enough so of course you got cancer." 


Whatever, if you have the ailment you find this all rude, insensitive, and sometimes worthy of a public bashing (e.g. Facebook slam).


But do you expect to run into it from practitioners of alternative treatments as well? I have from my accupuncturist. But at the same time she didn't understand the ramifications of my ailments. She would also ask when my lymphedema was going to resolve itself.

One person in this article is asked by their reflexologist after prostate cancer surgery - what did you do to bring this tumor on? And you hear the stories about someone passed away from cancer - and it is implied that they did not fight hard enough.

Sick people are people too. They may be going through a bad time in their life but they are still are people with feelings and sensitivity - and may be extra sensitive because they aren't feeling well.

Its not their fault.

Health discrimination

Discrimination can be in many forms. Sometimes its overt and sometimes insidious (I can use big words today but needed spell checker's help) and sometimes hidden away. But now health discrimination based on weight? That's taking it a bit too far.

A chef from South Africa was told by New Zealand authorities that he was too fat to live there. He has been there for six years and has lost 66 pounds since arriving. He now weighs 286 lbs which is not healthy unless he was really, really tall. Upon renewing his annual work visa, he was told his weight would cause health problems and they didn't want him. A little ironic since obesity is a big problem with 30% of New Zealanders being obese....

This is clear health discrimination. So what if I decided to move to New Zealand with my health background? Would I be welcomed? I have many more health problems than being fat. I would be a burden to any health care system....

So seriously New Zealand. Really? If 30% of your population is obese maybe its time to work on your national health guidelines instead of singling out a chef who has actually lost a fair amount of weight.
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Now on to happier news. I always wonder if anyone reads my blog and anyone cares about what I write. But apparently people do read it and do care. I am honored to say my blog was just named as one of the top 24 breast cancer blogs of 2013 by Healthline. I have a perky new label on the right and you can read about all the other blogs which also named here. I recommend following them to keep up on some great stories with coping with breast cancer.

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'?

Does it really matter?

A seasonal bit first.

The president enjoyed a bit of activity and lots of political rantings and ravings have ended in the Senate and the House and bills were signed. Finally, Don't Ask, Don't Tell is repealed. My question is: does someone's sexual orientation really matter?

President Kennedy was the first Catholic President. President Reagan was the first divorced president. President Obama is the first African American president. President Taft was so big he had a custom designed bathtub to fit him. President Roosevelt had polio and was in a wheelchair. President Lincoln was born in a log cabin, not a mansion.

Did any of that affect how they did their job? No. Does it really matter if someone is short, tall, fat, thin, white, Asian, African American, Protestant, Catholic, Amish, Atheist, Agnostic, Jewish, Muslim, Hindu, straight, homosexual, bisexual, blond, brunette, redhead, blue streaks in their hair, nose ring, multiple facial piercings, tattooed, athletic, or couch potato? Probably not.

The military has an issue with homosexuality because of the close confines etc, etc. But they allow women. Women if they are heterosexual would be interested in the men and vice versa. So what if there are men who are interested in men or women who are interested in women in close confines. They are there to do a job. They are not there for sex.

According to my husband, who was in the military, the real problem will be that so many people are not comfortable being around gays who are out. There are the social issues of family housing for gay couples, or survivor benefits, etc. In combat situations, people are there to do a job and are so dirty and tired and smelly, they do not want to be near themselves, let alone anyone else.

If you are in a car accident and get taken to the emergency room, are you going to make sure anyone who treats you is not different from you? Does it really matter if they are saving your life? Same thing, if they are fighting for this country, does it matter if they are gay, straight, or bisexual?

So if the real problem is that people are uncomfortable with people who are different? Oh, get over it.

Bullying, bigotry, and other bias

Last week a Rutgers college student committed suicide after his homosexuality was outed on the internet by his roommate and another student. Where they trying to be cool or something by secretly filming him and posting the video more than once on the internet? What were they trying to prove other than the fact that they are insensitive idiots?

Two issues here: First someone's sexual orientation is their issue and not anyone else's. I don't really care what someone's preferences are. Why should I? Their personal decisions don't really impact me.

Also, I do care about not seeing other people's sexual interactions. That is a private activity meant for privacy.

So what was the point here? I do think the actions of these two should be charged under hate crimes and that they get good long sentences for their insensitivity. Some may argue that they will ruin their lives. But they caused another person to decide they made his life not worth living.

This is another example of the bullying that has become so news worthy in recent years. Bullying is all about bigotry and bias. "I'm cooler than you" mentality.

But seriously we are all different. Some short, tall, fat, thin, white, black, Asian, Ukrainian, Swedish, Flemish, Lao, or any number of ancestries, Catholic, Jewish, atheist, Muslim. Why is one better than the other? We should accept our differences in that they are what makes the world and interesting place where we allow our differences to complement each other instead of allow them to create hate, fear, and bullies.