Living with Cancer, Dying with Insurance
Published August 10, 2009 @ 03:39PM PT

A very long month ago, I woke up in my sunny Brooklyn apartment with this thought: I am going to die.
The next thought was no less comforting: I am dying.
I am turning thirty in a few days, but I have had cancer for ten years. I went for my regular test at Sloan-Kettering a month ago, and I thought to myself over and over before submitting to the general anesthesia, "All I want for my thirtieth birthday is a clean scan. Good news, good news, good new--" and that's where I stop remembering. When I came to, four hours later, some part of my brain was still repeating "Good news good news good news." But I was wrong.
I found out that I have to start chemotherapy again. I remember 2001, having a biopsy of a large tumor in my hip joint on my birthday. I remember singing a dirge-like "Happy Birthday" under my breath to myself, alone with the doctors, shaking uncontrollably from the medication coursing through my veins in that freezing cold operating room.
But it was not having cancer for a decade, not finding out I had more cancer after already dealing with cancer every day, that made me think I was dying.
It was wondering how to pay Oxford.
A month ago, I did not know what would happen if I lost my medical insurance. Maintaining it seemed so necessary, it had such a stranglehold on my life, that it was and is all that I think about. My coverage was running out fast. Without it, and with my bank account already drained from a year and a half of COBRA payments, I thought the only possible resolution to my situation was that I would slip through the cracks, and I would die. Now, I was looking at an individual insurance policy on the open market and finding it would cost $2600.00 a month. Now, I was talking to a social worker who told me I would have to move into a shelter to qualify for Medicaid.
And now, I was talking to a woman in Arkansas on the phone, whom I called as part of a phone bank to urge her to call her senator, Blanche Lincoln, and ask her to support a public option. Now I listened as she told me that she "did not believe in anything Obama stood for" and that the answer to my predicament was not the government insuring its citizens, treating health care as a UNIVERSAL HUMAN RIGHT, but instead that God would help me.
I don't exactly know why I can live and thrive with cancer, but am reduced to such unadulterated fear when it comes to maintaining my insurance coverage. Having cancer? I've been brave and strong and fierce. Losing the only way to maintain my fleeting health? I can't face it. I'm reading this blog, reading about people who have died because they do not have insurance, who have died trying. Will I be one of them?
(Photo credit: Paulo Romalho on Flickr.)
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Comments (15)
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I am a Canadian, and I cannot believe the situation that you are in; you have all my sympathy! I can only hope that people stop fighting the solution and stop telling other people that THEIR problems are not MY problem! I care about you and I know there is a better way. Bless you; be strong! Bless all of us!
Posted by Jan Hemmings on 08/10/2009 @ 08:30PM PT
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Oregon state health plan will pay to kill you, but not keep you aliveposted at 2:00 pm on June 20, 2008 by Ed Morrissey
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Opponents of state-run medical insurance argue that government rationing would result in people being consigned to die. Opponents of right-to-die legislation argue that it presents a slippery slope in which the state would eventually have people killed. A harmonic convergence of sorts has taken place in Oregon which proves both points:
After weeks of bad news, things turned Barbara Wagner's way this week.
Last month her lung cancer, in remission for about two years, was back. After her oncologist prescribed a cancer drug that could slow the cancer growth and extend her life, Wagner was notified that the Oregon Health Plan wouldn't cover it.
It would cover comfort and care, including, if she chose, doctor-assisted suicide.
Excuse me? Oregon's state-run health care plan won't cover a new drug that could extend her life - which is, after all, the entire point of health insurance and health care - but will gladly pay the bill if she decides to stop costing the state more money. What's next - a Logan's Run option for "renewal" at 30?
Lady Logician wonders the same thing, as oncologists in Oregon report that this is not an isolated case:
This is the kind of "care" that all Americans (not just Minnesotans and Utahns) can expect should government run health care become a reality. Is this really the kind of care we want for our aging parents or our children or even ourselves? Somehow I think the answer is a resounding no!
Jazz Shaw:
Whenver I hear either of our presidential candidates shouting about health care reform I get a prickling senstion in my palms and a pronounced tic in my left eye. It's not that we don't have a need for health care and insurance improvements in our country - clearly there is work to be done. But I've been watching and participating in elections since Nixon's day and all too often I've gawked as our Federal government's well intentioned but ham handed attempts to "fix things" turn into a case of Ferdinand the bull trampling the flowers he was attempting to sniff. ....
This isn't a case of bad doctors. This is a system following rules meant to improve the process which wind up veering off into realms better suited to science fiction.
It's more than that. This is the entirely predictable result of the shift in thinking of human life as sacred to an entirely materialistic view. Human life becomes a commodity, especially when the state has charge of it and responsibility for its costs. When the state assumes the cost for the most personal and private functions of its citizens, the private and personal become public, and the limits of government disappear.
Do you like French fries? Those cause heart disease, which costs the government X billions of dollars per year, so those are out. How about tanning booths? Skin cancer treatments cost $X billions, too, so we'll outlaw those. Finally, so what if you want to extend your life an extra couple of years? You can't generate enough revenue to make up for the cost of the treatment, so the state won't allow it. If you'd be so kind as to drop dead now, though, that will save some money for a badly-needed sex-change operation.
Fortunately, Wagner got rescued from her own state government. Who played the hero? The evil pharmaceutical company that produces the drug she needs, who gave it to her for free out of disgust.
Posted by James Dunham on 08/13/2009 @ 09:33AM PT
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i want obama to answer why canada's system can't work in america? i am for single payer and the gov't paying the tab. tax more efficiently. get people eating healthier for both themselves and the environment. get people walking more for themselves & the environment.
legalize cannabis to help chronic sufferers such as yourself. this would bring down the cost of healthcare in so many different facets. and BIG PHARMA IS GONNA LOSE SOME BENJAMINS, sorry big pharma. sorry DUPONTS, oil barrons, tree farmers. the time is upons us to rationally end the war on cannabis & HEMP to help pay for single payer healthcare!
Posted by jeffrey C oldman on 08/11/2009 @ 12:57AM PT
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Some facts to consider:
Canada has about 10% of our population.
70% of Canadians have private insurance because the state system doesn't cover some very serious needs. The definition of what is considered "elective" is literally life-threatening at times. And the existence of private insurance somehow eliminates the wait times.
Some things aren't covered: optometry, dentistry and outpatient prescription drugs.
"The evidence shows that delays in the public health care system are widespread and patients die as a result of waiting lists for public health care" - Supreme Court of Canada, June, 2005
Video evidence/report: http://www.youtube.com/watch?v=l9u2UU6-wlk
"Limited in what treatments they can offer, doctors sometimes fail to advise patients of every option available - or every possible complication." http://www.nytimes.com/2009/08/16/weekinreview/16lyall.html?_r=1
I have to wonder, especially when we have been told it is a "moral dilemma" whether to "give" certain treatments to certain people under certain circumstances because of cost, whether the above is something to fear.
The 50 million "uninsured" population includes: (1) those only temporarily uninsured during the year; (2) children and others who have access to insurance programs but don't apply for them; (3) those that can afford insurance and choose not to purchase it; (4) illegal aliens; (5) those who are genuinely uninsured and cannot afford it. New numbers are coming out in September, but right now it is estimated that the truly uninsureable may be as low as 12-15 million depending where you read.
Our government programs are responsible for 10% of the new drugs on the market, some say due to the lack of a profit motive. The remaining 90% is in the private sector. http://www.youtube.com/watch?v=l9u2UU6-wlk
The head of the CMA says the current program in Canada is "imploding" and is on an "unsustainable" path (sounds familiar?).
There are currently 12 plans (including the principals outlined by the President) which can be viewed on a side-by-side chart here. Both Parties have made proposals. http://www.youtube.com/watch?v=l9u2UU6-wlk
Posted by James Dunham on 08/20/2009 @ 09:53PM PT
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Kelly, I urge you to personally contact President Obama. If he is willing, he will be able to pull the strings to get you the medical care you need.
The "public option," even if it survives the legislative process, will not kick in for many years (2013 for just a few people, 2019 for most).
I predict that any "reform" that passes this year will fail so spectacularly that within 2-5 years single-payer Medicare for All will be instituted as the only solution.
But you, Kelly, and tens of thousands of other critically ill Americans without, or soon to be without, insurance coverage, cannot wait.
Therefore, each of you should individually petition the President for help. And don't give up until you get an answer.
My heart goes out to you.
Posted by Carla Rautenberg on 08/11/2009 @ 06:39AM PT
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Don't give up hope, Kelly! We're all here for you, and we're all trying to make sure that public option is available. This is proof--You are proof, like as Carla said, that uninsured cannot wait. I cannot imagine a single person who would deny healthcare reform after hearing your story. So go tell it, and soon your story will be a message of hope, because I am faithful that you will be one of the first success stories as soon as healthcare reform passes.
Posted by Dina Yazdani on 08/11/2009 @ 09:02AM PT
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Kelly, keep fighting for what you want. I grew up with you, and I know you will not give up. If there is anything I can do to help, let me know. I will sign a petition, call people, what ever you need.... I left my number on your private messages, give me a call; I may have some info on where you can go for your treatment.
Posted by Samantha Widener on 08/11/2009 @ 01:08PM PT
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Kelly,
I will continue to fight with you for your universal human right to healthcare as, I believe, God intends. IWe must help each other, provide for each other the gifts of healing, acknowledge that we are God's helping hands. I am ashamed of that woman's response to you. It was wholly un-Christian.
My prayers are with you, as well.
Posted by Harold Lewis on 08/11/2009 @ 07:48PM PT
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Kelly,
It sounds like you live in NYC. I hope that is the case. Contact Anthony Weiner, Eric Maasa, and Charlie Rangell. Contact Chuck Schumer. Tell them you want them to help you NOW. I have been at health care meetings where people have shared similar stories and the Congressman, Senator indicated they would help.
Contact your local cable access program. Share your story with them and see if they will air it.
I was thinking all day about what to say in my letter to Michelle Obama. Now I know. I will share your story with her.
Kelly, you will be in my prayers and thoughts daily.
Posted by Lauren Serven on 08/11/2009 @ 10:34PM PT
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My heart goes out to you Kelly and to the millions of people just like you that even if they have health insurance are forced to go to work taking chemo and fighting cancer. The richest country in the world. So wrong.
Posted by Mary Ann Thompson on 08/12/2009 @ 12:06PM PT
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Kelly,
Thank you for sharing your story - and I happen to know you are a force in NYC for reform - so thank you for fighting not just for yourself but for other people who are struggling in a terribly broken system.
Posted by Naomi Rothwell on 08/12/2009 @ 10:44PM PT
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Kelly,
Thank you for sharing your story. I happen to know you are a fierce advocate for health care reform in NYC. Thank you for fighting not just for yourself but for all people struggling in a broken health care system.
Posted by Naomi Rothwell on 08/12/2009 @ 10:47PM PT
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One often hears variations on Krugman's argument-that America lags behind other countries in crude health outcomes. But such outcomes reflect a mosaic of factors, such as diet, lifestyle, drug use, and cultural values. It pains me as a doctor to say this, but health care is just one factor in health. Americans live 75.3 years on average, fewer than Canadians (77.3) or the French (76.6) or the citizens of any Western European nation save Portugal. Health care influences life expectancy, of course. But a life can end because of a murder, a fall, or a car accident. Such factors aren't academic-homicide rates in the United States are much higher than in other countries (eight times higher than in France, for instance). In The Business of Health, Robert Ohsfeldt and John Schneider factor out intentional and unintentional injuries from life-expectancy statistics and find that Americans who don't die in car crashes or homicides outlive people in any other Western country.
Posted by James Dunham on 08/13/2009 @ 09:00AM PT
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Best Doctors in the WORLD!!!!!
Nearly 40 Years After 'War on Cancer' Declared, U.S. Medical Community May Be Gaining Upper Hand
Friday, August 14, 2009
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It's been almost 40 years since President Richard Nixon declared the "War on Cancer" with the signing of the National Cancer Act of 1971 and the allocation of $100 million to fight the disease.
The government now spends almost $5 billion a year to battle cancer and it appears that 38 years after the war was declared, the U.S. medical community is finally gaining the upper hand on some of the most common types of cancer.
Improvements in cancer screening and better treatments have resulted in steady declines in cancer death rates over the past three decades, U.S. researchers said on Thursday.
Slideshow: Surviving Cancer
Younger adults - those aged 35 to 45 years old - have experienced the steepest declines in cancer death rates, but all age groups have shown some improvement.
"Essentially, the younger you are, the faster your rates are declining," said Dr. Eric Kort of the Helen DeVos Children's Hospital in Grand Rapids, Michigan, whose study appears in the journal Cancer Research.
U.S. government estimates suggest there had been little improvement in cancer death rates throughout the 20th century, with rates only beginning to improve in the mid-1990s, Kort said. But that does not tell the whole story, he added.
"The way that these statistics are traditionally reported is they have averaged all of the age groups together to get a composite rate," Kort said in a telephone interview with Reuters.
"The problem with that is because most cancer deaths occur in older Americans, the average heavily emphasizes the experiences of older people. It's like watching the caboose of the train to tell when the train is changing direction," he said.
The average survival rate for all cancers combined increased almost 20 percentage points from 1975 to 2000 from 49.84 percent to 67.16 percent, according to the National Cancer Institute.
But for many of the most common cancers, the survival rates are much higher.
In childhood cancers, advances in treatments for leukemia and lymphoma mean many more people can survive cancers that were once considered a death sentence.
The 5-year survival rates for all childhood cancers combined increased from 58.1 percent in 1975-77 to almost 80 percent 1996-2003. This improvement in survival rates is due to significant advances in treatment, resulting in a cure or long-term remission for a substantial proportion of children with cancer.
And better screening for cancers that occur in older age, such as mammography for breast cancer and colonoscopy for colon cancer are spotting cancers at an earlier stage, when they are easier to treat.
Survival rates for breast cancer, for example, increased from 75.33 percent in 1975 to 90.55 percent in 2000, according to the National Cancer Institute. Survival rates for colon cancer increased from 49.43 percent in 1975 to 66.03 in 2000, while prostate cancer survival rates increased more than 30 percent - from 66.95 percent in 1975 to 99.21 percent in 2000.
Lung and bronchus cancer remain the hardest to treat, however, and survival rates for those cancers are still relatively low - increasing from 11.90 percent in 1975 to just 16.19 in 2000.
Kort's team looked at improvements in cancer deaths among groups of individuals born in five-year intervals starting in 1925.
Using that method, Kort said, "Everyone born since the 1930s has enjoyed a decreased risk of cancer death, at every age."
People in the youngest age group - those aged 35 to 45 - had a greater than 25 percent decline per decade in cancer deaths, he said.
Kort said cancer prevention - including smoking cessation efforts - have played an important role in these trends.
"We're also benefiting in profound ways from progress we're making in early detection and better treatments. Some of these advances benefit younger people first," he said.
Cancer remains the No. 2 killer of Americans, with about 560,000 deaths annually, topped only by heart disease, according to the American Cancer Society.
Posted by James Dunham on 08/14/2009 @ 01:17PM PT
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After being diagnosed with incurable and untreatable widespread cancer 4 years ago, then given a 99.9% chance of death within 6 months by multiple hospitals, all that was left was a trip to an Amish 'healer' as the last straw for my friend. The cancer case was so bad that no hospital would even undertake chemo or radiation treatments, though at least 5 big ones were consulted.
The Amish 'healer' told my friend that his body would heal itself if he would nourish it the right way. The 'right way' was this: a 100% organic vegan diet, consisting of only raw vegetables (the more dark green the better), a few raw fruits (cancer loves sugar of any kind), drink only purified water, and have organic juice twice a day made from fresh beets and celery. No poultry, no fish, no meat of any kind, no eggs, no dairy, no sugar, no refined wheat, and nothing cooked. Zilcho. And, begin a daily exercise regimen that included at least 30 minutes of increasingly strenuous aerobics.
At the 6 month checkup the cancer was completely gone. Today, four years later, my friend is the picture of health. He is still a vegan, wouldn't go back to the 'other' way of eating for anything, and says he feels better than at any other time in his life.
Perhaps the lesson from my friend is this: The best invesmnent is a better diet and exercise. And especially if you have nothing else, what harm to go 'the Amish way?'
Posted by Ken Wilson on 08/20/2009 @ 06:23PM PT
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