November 16th, 2011 by Jessie Gruman, Ph.D. in Opinion, Research
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It is completely understandable if you associate the term “cancer survivor” with an image of glamorous, defiant Gloria Gaynor claiming that She. Will. Survive. Or maybe with a courageous Lance Armstrong in his quest to reclaim the Tour de France. Or perhaps it is linked for you with heroic rhetoric and pink-related racing, walking and shopping.
Phil Roeder from flickr.com
I never call myself a survivor because when I hear this term, I recall my experience following each of four cancer-related diagnoses. It has not been triumphant. It’s been terrifying and grueling. It hasn’t taken courage to get through the treatment. It’s taken doing the best I can. I am not still here because I am defiant. I am here because I am lucky, because I am cared for by good clinicians who treated my cancers based on the best available evidence, and because on the whole, I participated actively in my care. But mostly I am here because each successive diagnosis was made as a result of being followed closely with regular checks and screenings and because my doctors responded effectively to questionable findings and odd symptoms.
There are 12 million Americans living today who have been treated for cancer. Not only are we at risk for recurrences but, as Dr. Julia Rowland, director of the Office of Cancer Survivorship at the National Cancer Institute, notes, “Research shows that there are no benign therapies. All treatment is potentially toxic and some therapy may itself be carcinogenic. Today, people are living long enough to manifest the health consequences of efforts to cure or control their cancer.”
Who amongst our clinicians is responsible for helping us watch out for those consequences for the balance of our lives? Read more »
*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*
November 11th, 2011 by Jessie Gruman, Ph.D. in Opinion, Research
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Our ailing economy has boosted the number of people who are unemployed, without health insurance or with minimal coverage. The popularity of high deductible health plans is soaring as employers and individuals look for affordable insurance. Twenty-nine percent of bankruptcies are said to be caused by medical bills. Many of us now choose health care services and providers carefully, trying to stay within tight budgets.
The American people, long protected from the price of health care by insurance, are now forced to act as consumers. This situation is a free marketer’s dream. According to this model, we will rationally calculate the price/quality trade-offs of each doctor visit, procedure, test and drug. We will stop overusing services. We will demand better care. And the result will be reduced health care costs for the nation while the quality of care and the health of individuals will remain the same, if not improve.
There’s nothing like a good theory.
But the theory can only be tested if a) It’s easy to find publicly reported, relevant quality information about the services we need, matched with what we would pay out of pocket; and b) We use that information as the basis of our health care decisions. Neither of these conditions can be met today.
A new Cochrane review Read more »
*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*
October 29th, 2011 by Jessie Gruman, Ph.D. in Opinion
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“Being diagnosed with a serious illness is like being drop-kicked into a foreign country: you don’t know the language, you don’t understand the culture, you don’t have a map and you desperately want to find your way home.”
I wrote that following a cancer-related diagnosis six years ago that resulted in removal of a part of my colon. One year ago this week I was in the hospital longing for home while recovering from surgery for stomach cancer. Today I am traveling in Spain (feeling fine and minus the drop-kicked part) and am reminded of this analogy every day.
For example, I couldn’t figure out how to punch my ticket on the city bus. The driver told me in Spanish that I barely comprehend to turn the ticket over. No luck. His voice rose: “You put it in upside down.” Again, no luck. He shouted: “Use the other damn machine!”
Stupid tourist.
There’s a man who sits at the front desk at the clinic where I get most of my cancer care. He greets every person who walks past his desk as though Read more »
*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*
October 28th, 2011 by Jessie Gruman, Ph.D. in Opinion
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On October 4th, 2011, I delivered the Alex Drapos Memorial Lecture at Clark University as part of their ongoing President’s Lecture Series. Here’s what Jim Keogh, Director of News and Editorial Services, reported about my talk:
Gruman said American health care treads a fine line between trying to serve the good of the many and the interests of the individual. But no one has yet figured out a cost-effective, yet humane, way to do both. She asserted that the skyrocketing expense of health care — expected to rise to $4.64 trillion by 2020 — isn’t reflected in the quality of treatment people receive.
“Should we be able to choose whatever medicine we want, even if there’s no evidence it’s effective?” ~ Jessie Gruman
“There is much ineffective, extra, inappropriate care being delivered,” Gruman said. As an example she cited Read more »
*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*
October 21st, 2011 by Jessie Gruman, Ph.D. in Opinion
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Contagion is a thriller about a virus that rapidly spreads to become a global epidemic. There aren’t enough coffins. Gangs roam neighborhoods like ours because police have abandoned their posts, fearful of exposure. Garbage fills the streets because sanitation workers are dying. As scientists work feverishly to understand the virus and develop a vaccine, public panic unravels the fabric of civil society, fueled by terror and rattled by false claims of a homeopathic cure promoted by a charismatic charlatan.
The movie has grossed $76 million worldwide since it opened on September 9th. It has all the elements a successful movie needs: a just-believable dystopian vision of the future, flawed good guys, an evil schemer, suspense, heroic action…the works.
And while it’s an action-thriller first and foremost, you don’t have to concentrate hard to notice that it also shows:
- Why the Federal government is necessary: its authority to communicate, negotiate and work with other nations to solve a global problem; its ability to exert authority across state lines and to marshal resources immediately to protect its citizens from peril with no expectation of profit.
- How scientific research is iterative and complicated, not bumbling or malicious. Research is conducted by scientists—normal people with normal lives—who are Read more »
*This blog post was originally published at Prepared Patient Forum: What It Takes Blog*
