"The wish to live just one more day can be limitless. How can anyone say that a few extra days with their loved one is not worth the cost? Well, in all honesty, I can...
"...built in to [a cancer drug's] cost-analysis is the quality of life that is gained. While the glossy marketing material might make attractive claims for new drugs, a closer inspection often shows a different story...
"...even if a drug extends your life by, say, two months, but does so with crippling side-effects, such as constant nausea and diarrhoea, was it worth it?
"The cost here is not financial but physical and emotional. As the Lancet article says: 'Patients should be spared toxic effects and false hope.' There are many people who would rather live a few weeks less but be able to get out of bed and make it to their daughter’s wedding, for example. Yet this reality is ignored. Where is the discussion about quality of life? If the quality of life that the drug provides is not worth living, this is its real cost," from "Surely the true cost of a cancer drug is the quality of life it gives the patient," by Max Pemberton in The Telegraph. (October 3, 2011.)
A week ago The Telegraph ran another intelligent, provocative article on the cost and effects of the highly touted miracle cancer drugs (actually not available to most of us): "The big C: cancer treatment is increasingly unaffordable" by Karol Sikora.
I'm not sure the American public is ready for the discussion on rationing health care that the British media has already begun--but we need to get there and fast. Globally, we are facing a growing aging population and spiraling health care costs. Americans out-spend other countries on medical care but we don't have the best results. Something is wrong with this equation. Part of the problem: the high cost of cancer treatment, especially in late stages, fueled by our cultural appetite for false hope. A diagnosis of cancer renders many easy prey to the hope-mongers, including doctors trained to "fight" the disease. They have "won" if they remove cancer (and chunks of your body) and kill more of it (and your body) through chemo and radiation. Never mind if you only live two weeks beyond treatment, they have won a battle.
As I read the British articles, I knew how the argument would be formed here: Only the rich can afford the newest drugs--and how unfair is that to the rest of us? The AARP will be lobbying Congress for equal access to drugs that, so far, are more likely to give the patient an extra few bad months than "cure" cancer. Why aren't we doing the quality of life cost analysis? We have a hard time acknowledging our mortality here in the Colonies. Among my cohort, the aging Boomers, once dubbed the "Me" generation, many are most reluctant to acknowledge that they won't be active, spry, mentally sharp and sexy at 100. Everyone has a Miraculous Aged One to site as anecdotal evidence.
Frankly, my dears, I don't give a damn if the rich and very well-insured have access to drugs that aren't available to me. If they don't mind being medical experiments, good for them. Their experience with the medications will help researchers refine the drugs and eventually come up with something that works better for our children and grandchildren. How can anyone villify them for this contribution to society?
Ironically, money is the issue that has tripped me up for most of my life, especially after I moved to New York City.
On the one hand, I had an ultra casual approach to managing money, spending it freely when I had it, expecting someone else to spend on me when I didn't. In recent years, I added a layer to that: Anyone looking for writing advice/contacts got stuck with the check--I've had it with girls who want to be mentored pro bono--but sometimes people who didn't fit that category got stuck with checks too, simply because often I didn't carry cash or a card. I had a sense of entitlement rooted in my background. The object of my mother's obsessive attention and indulged by grown sisters and their husbands, I was raised to be a kept wife. In "kept wife" mindset long after I divorced the Good Husband, I didn't aggressively pursue ghostwriting clients who owed me money. I 'handled' the situation by taking on more work, sometimes with less desirable contracts. But that's really not the whole story. There is more.
Underlying the careless disregard of money is an ugly truth: I didn't value myself unless I had money--which made me a typical New Yorker--albeit a self-sabotaging one.
When we let money define us, we impart that value system to offspring; and we are drawn to people with the same issues. Many of them are phonies--posers and pretenders, users who have no interest in anyone not of monetary or social value to them. So we pretend to be of value to them. How foolish is that? I've been in and out of therapy for years, coming to terms with money issues, secrets and lies. I am clear now thanks in part to my friends Lorraine and Mel--and cancer.
Beautifully dressed and cosmopolitan, a model couple for the enlightened good life--they suffered a devastating business loss some years ago when they had five children at home dependent on them. Worse, they were betrayed by people they trusted, their partners. Refusing to see themselves as victims--or let friends paint them into the role--they rose up and kept going, "putting one foot in front of the other" as Mel says, until they had rebuilt their business, even better.
"You do what needs to be done," Lorraine says.
In surmounting obstacles and doing it their way, they are an example to me; and I love hearing the stories of their life together. I don't know what the odds of rebuilding a business are, but I'm sure they are sobering. If they could do what they had to do with the pressing responsibility of children, I can be in charge of my own dying. They reinforce my determination. I won't be a cancer "victim" reduced to an emotional state, dependent on others to choose for me.
Cancer has given me two gifts: clarity of vision and the final release from defining myself by money. I have accepted the good and the bad about me and forgiven myself. My best memories have no price tags attached; their value is beyond that.
When it comes to health care, Americans often seem to be self-sabotaging, focused on what they can get from insurance companies, Medicare, their doctors and other medical providers, wanting the newset drugs without researching them. People, it's not always about what you want or even can get. Sometimes it is just about what you need.
IF YOU'VE MISSED THE PREVIOUS POSTS--
Dying, The End Game, Part Six: A Quickie on Questions People Ask
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