Tuesday, July 28, 2009

Pink Ribbons and The Comprehensive Health Care Bill

The Comprehensive Health Care Bill is scary for a number of reasons. Currently, I am most afraid of the end of life issues it contains. Those of us who are young and in the midst of raising our own children spend little time thinking about end of life issues. The current bill contains language that will set up a system that requires the elderly to receive counseling every five years about end of life care. The hope is to expand the Hospice Care which provides care for those who are dying. The government hopes to save on costs of people nearing the end of life. Government is always a bureaucracy and will define end of life simply by a random age based on statistical information. If you are above this age, you will not be given treatment as an option; only hospice.

When I was a freshman in high school, a fellow student did a speech on Breast Cancer. Her mother had breast cancer, and she was resigned to the fact that she would have it as well. Her speech talked about preventative treatment and being aware of your risks. I thought this was at best, odd. What fourteen year old thinks about breast cancer at some far off point in the future? Since then, I have found that Breast Cancer Survivors are a unique club. I have seen pink ribbon tattoos on the ankles of fifty year olds, pink ribbons on bumper stickers, pink ribbons the size of a house hanging from office buildings. I have read stories of these survivors and have seen how they continue to support awareness and treatment funding long after they have been cured. Once in the club, you are always a member. If your mother joins, you join in spirit.

My mother was recently diagnosed with breast cancer. We believe we have gotten all the cancer, but she will begin preventative chemo-therapy tomorrow. She is seventy-four years old and in better shape than I am. It is unclear if she would be allowed treatment under the rules of the new bill. Her treatment will continue into her seventy-fifth year of life.

As my fourteen year old friend knew, breast cancer is nearly always hereditary. If your mother or grandmother had it, your chances are greatly increased. Will you get it at thirty, or forty, or seventy-four? If you do get it, do you want the government to determine whether or not you receive treatment? It is one of those diseases, that if a loved one has suffered from it, we are forced to think about our own future. There are other diseases of this nature as well.

I am all for dialogue about end of life care. I do think we need to look at pain management and creating an atmosphere of love and attention over the option of Euthanasia. I hope the elderly and sick will have many options for care rather than thinking they have a responsibility to kill themselves when they are no longer considered productive. I do not think rejecting treatment for yourself is wrong. I think all treatment should be a risk/benefit analysis. But it is one of the most personal decisions a person can make. Quality of life is one of the most subjective things in existence. Some of us are wired to want to live at any cost under any circumstances. Others see death as a welcomed friend. I have seen rewiring based on circumstance and pain but never on a magic birthday.

So, if you are in the Breast Cancer Club or your mother was or your daughter may be, think twice. If you are a survivor of any age, do you want other women to be denied whatever treatment they wish to undergo? What age guarantees a woman should surrender the battle and let the cancer win? For every woman who loses the battle, those in the club mourn. For every success story, the club celebrates the victory. We respect personal choice with regard to treatment, but for the government to deny treatment to one of us should enrage all of us.

If the Comprehensive Health Care Bill should become law, be prepared to mourn more of our fallen sisters and to be enraged.


  1. What about the 45 year old woman newly diagnosed with breast cancer, mother of young children, uninsured and being denied treatment? Are you not enraged about that? Are you mourning the loss of our fallen unisured sisters?

  2. I do not know of any real life scenarios of which you speak. I participated in fund raisers to help pay for care for the uninsured. Treatment is never denied based on ability to pay up front. But the question is why is someone uninusred. Is it not a choice? The poor have government provided health care via the medi-cade system. Those who are not financiallly elligible for medi-cade have chosen different priorities for their money. They have the right to do this. The current bill allows for no personal choice in the matter. Through an enormous loss of liberty to us all, the government seeks to force people to MAKE medical insurance a family priority. No one in this country dies for lack of insurance. If you know of a situation where this has occurred, I would be interested in the details.

  3. There are millions of these examples out there. Care is denied all the time. Spend a day at the lab with me, working on trying to get insurance to pay for stuff. A specific example. My next door neighbor's daughter started loosing cognitive ability, lost her job, racked up $34000 in debt, car repossessed. She was in San Diego. They didn't find all this out till 6 months alter when a neighbor noticed how trashed her house was and that something was really wrong with her when they talked. They brought her home, found out she had a large brain tumor. Because she had not been with it, she had neglected to sign up for Cobra. Uninsured. Her parents are retired/live on very little. They have had to mortgage the house/use their retirement/do fundraisers to pay for her brain surgery. Or, like my mom who brings home about $3000/mo and pays $900/mo for coverage. She's a teacher. BCBS of Kansas. $1000 deductible. It pays nothing of prescriptions, her total $2-300/mo. Basic bills, retirement, she's left with not much. Luckily she no longer has any kids to support. Or what about my uncle who pays crazy amounts for insurance because he had testicular cancer in his 30s. And he knows if he doesn't pay what they ask, no one will cover him. 40 million uninsured do not just have different priorities for their money. They aren't living in expensive houses and driving new cars, they are struggling to pay basic bills. Google up stories of the uninsured. Walk a mile in their shoes. I'm not saying govt run healthcare is the answer and won't have many flaws. But the current system is deeply flawed. But that's a whole nother post. I need to dig out my grad school paper on cost containment in healthcare. Even beyond the uninsured, you have to look at the underinsured. Insurance companies are crooks. As a Catholic, I think it is crazy that we allow good hard working people to rely on emergency room care, to have to mortgage their lives and do fundraisers to pay for care.

  4. Sheila,

    First - I gotta say, I have LOVED reading your blog. Bet you didn't even know I was reading it. It's been at times delightful, but mostly very thought-provoking...and I thank you for that!

    I gotta tell you though, you're wrong about people not dying due to being underinsured or completely uninsured. I am a SEVEN year breast cancer survivor...yep...chemo, bilat masts...the whole shebang. Personally, I'm doing great, and have been fortunate to have the insurance that we have always been blessed to have. And yes - President Obama's plan scares the *&^% out of me. I think it could drive out of business private insurance, ultimately creating a health insurance system that is inffective and way to slow to move.


    I DO know of MANY women...YOUNG women...who have lost jobs, homes, and yes, lives, due to insurance issues. Loss of job leads to loss of income, which leads to loss of insurance, which leads to compromised treatment...do I really need that chemo? surgery? medicine?...or do I make my mortgage? Or maybe lose my home, but get treatment? There are SO MANY complicated issues surrounding young diagnosis and treatment...I only speak to that b/c that is what I KNOW quite a bit about. I'm sure it's complicated on any level...regardless of age and diagnsis. I thank my lucky stars all the time that I was dx when I was...a new mother of a three month old baby...all the time in the world to pursue treatment...and as I'd decided to stay at home with him, no problem with regard to loss of income.

    Now I'm rambling. I guess my point is that it is SO much more complicated than someone choosing to spend their money out of priority.

    Eva is right...our current system is horribly flawed, but I sure don't know where the answer lies.

    Oooh - and one other thing...breast cancer is not nearly always hereditary. Certainly, there are two genetic mutations (BRCA I & II) that increase a woman's risk of a breast cancer diagnosis by anywhere from around 40-66%. But the percentage of our population that is estimated to carry the mutated genes are .1-.2 percent. And yes, there are probably undiscovered genetic links. Estimates of hereditary breast cancer are anywhere from 5-27%. But certainly not the majority. In my case, it was not BRCA 1 or 2...which leaves me to think it must be something environmental...

    And that's a whole other really interesting topic...many blogs about that!

    Sara (Kaiser) Truelson

  5. P.S. I can't believe I wrote all of that without saying that I wish your mother well. I'm tucking her name in my prayer book...

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  7. I appreciate your perspectives. I am glad to know of personal testimonies of how the issue affects people you know. Most people I know without insurance have chosen to opt out in order to use their money in ways they find to be more important to them at the time. I have also read statistics showing up to half of the uninsured make between 50-80k a year. I also personally do not know of people who have been denied treatment due to being insured and underinsured. I do know the costs of treatment can be devastating, but I have never read any documented situation where someone was denied treatment resulting in death. Sarah, the issue of compromised treatment is a different issue and one I had not thought about before.

    I do not lack empathy for those who are in difficult situations especially those who had no choice in the matter but were the victims of circumstance, but I am not sure it is wise to base law on them.

  8. Sheila,

    I'm so curious about what you wrote that you removed. I hope I didn't totally offend you. After all, this is your blog...not mine!

    I am appalled at the concept of offering only Hospice instead of treatment based on age...that's ridiculous. But so too is someone forgoing chemo b/c if she does, she'll accumulate so much debt that she'll likely lose her house and end up in backrupcy. I know someone who did just that (the forgoing chemo part...she rolled the dice and luckily, three years later...so far so good).

    Anyway, I would never think that you lacked empathy for victims of circumstance. I just wanted to say that I really do know some...they really do exist.

    As for basing law on anecdotal evidence, I agree, bad idea. I wish I had answers, suggestions...anything.


  9. Sheila, love your blog. In response to some of the comments, I’m sure, as pointed out, one can find individual circumstances of people who truly can’t afford health insurance and are in a bad way because of it. But the 40 million number that is thrown around is, well, a little high. There are not 40 million “next door neighbor’s daughters” or Google results. If you look at the data that number came from you pull two things immediately away from it. The first is that the totals include 9.487 million people who are not a citizen. These are people who are not paying taxes. The second is that of this 40 million, there are 8.3 million uninsured people who make between $50,000 and $74,999 per year and 8.74 million who make more than $75,000 a year. That’s roughly 17 million people who ought to be able to “afford” health insurance because they make substantially more than the median household income of $46,326. That brings our 40 million down to 13 million, or around 7% of the population. There is also data to suggest that another 2 to 4 million are younger people who choose not to pay for insurance with another 1 or 2 million insured but not aware that they are insured. This puts things in proper perspective.

    The fact of the matter is that this is a more of a power grab than a crisis. You can’t name 3 things the government runs well and there is no reason to think they will do this well. Think of the DMV. These are the same types people who will be handling your healthcare. These are also the same people who will be discussing end of life issues with our parents. No thanks. I will take a private company, estate planner or lawyer who I can pull my business away over a gov’t that leaves me no choices but the gov’t.

    As for the 3 or so million left without health care, there are many places to turn and many people that would help them.

  10. wow Sheila! you touched a nerve with this one! i wrote my response on scrap paper at swim lessons the other day. this is my first chance to put it up here.

    The idea that after a certain age or diagnosis a patient shoulbe counseled regarding hospice should not be offensive. After decades of a medical establishment which has held that life at any cost is the only couse, knowing about options is welcomed. You are right it is a personal choice. All options should be open for discussion. Seems that nearly everyone you talk to will say that they would never want to end their life in a nursing home or hooked to machines, but most people don't make those choices in a way that will allow them to be carried out to avoid that end. Educating yourself and reeducating yourself as age and circumstances change is essential. Decisions made from fear and stress are rarely reflective of our true feelings or wishes.

  11. Thank you to everyone for taking the time to read and comment. I love the thought provoking discussion.

    Sarah, No offense taken. I really do appreciate your unique perspective.

    Anonymous, I think we read the same article. You summarized it better than I could have.

    KSL, How did you write in the pool? :) I agree knowledge is power. I think Hospice is beautiful. It is not the counselling that bothers me, but that it is required, but more than anything, that the govt. would not allow certain procedures or treatments to people who want them based simply on age. Is that even legal? I think all who have commented do agree on that point.

    Thanks again to all!

  12. So sorry to hear about your mom's diagnosis. She, and all of your family, will be in my prayers.