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Tag: Cancer

Stop Cancer Research?

Now here is a novel idea to save lives and stop the cancer plague; stop trying!  Sounds as crazy to me, as it does to you, but this idea actually may have merit.  Some smart people are saying that we have spent too much money for little gain, thus it is time to give up and by retreating win more battles in the war on cancer, than by charging ahead.

The Cancer Prevention and Research Institute of Texas (CPRIT) is the second largest cancer research agency in the United States, after the National Cancer Institute, controlling a pot of $3 billion dollars, most of which funds basic science and clinical research.  At recent hearings, university scientists and leaders in biotech proposed that CPRIT cut back on the money it is pouring into laboratories.  As Professor John Hagan of the University of Texas proclaimed, “If people didn’t get cancer in the first place, CPRIT would accomplish much of its mission.”

This radical idea was echoed in a scary article in the September issue of Lancet Oncology, entitled “First do no harm: counting the cost of chasing drug efficacy.” This editorial reviewed data, which shows that between 2000 and 2010 many new cancer drugs produced marginal extensions in survival and simultaneously increased risk of treatment associated death and side effects. The Lancet authors emphasized the vital need as we develop new therapies to carefully measure both benefit and harm before FDA approval and for careful post-marketing follow up after drugs are released to the general population.

Now in reality no one is saying that we should shut down cancer research labs and simply hope for the best.  Eventually we will completely cure this disease and basic science, as well as the development of new therapies, is key to that future. Perhaps what we should hear from these words is an idea about a different balance in health and healthcare.

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A Time for Boundless Energy and Optimism

2012 has been a challenging year for me.

On the personal side, my wife had cancer. Together we moved two households, relocated her studio, and closed her gallery. This week my mother broke her hip in Los Angeles and I’m writing from her hospital room as we finalize her discharge and home care plan before I fly back to Boston.

On the business side, the IT community around me has worked hard on Meaningful Use Stage 2, the Massachusetts State Health Information Exchange, improvements in data security, groundbreaking new applications, and complex projects like ICD10 with enormous scope.

We did all this with boundless energy and optimism, knowing that every day we’re creating a foundation that will improve the future for our country, communities, and families.

My personal life has never been better – Kathy’s cancer is in remission, our farm is thriving, and our daughter is maturing into a fine young woman at Tufts University.

My business life has never been better – Meaningful Use Stage 2 provides new rigorous standards for content/vocabulary/transport at a time when EHR use has doubled since 2008, the State HIE goes live in one week, and BIDMC was voted the number #1 IT organization the country.

It’s clear that many have discounted the amazing accomplishments that we’ve all made, overcoming technology and political barriers with questions such as “how can we?” and “why not?” rather than “why is it taking so long?” They would rather pursue their own goals – be they election year politics, academic recognition, or readership traffic on a website.

As many have seen, this letter from the Ways and Means Committee makes comments about standards that clearly have no other purpose than election year politics. These House members are very smart people and I have great respect for their staff. I’m happy to walk them through the Standards and Certification Regulations (MU stage 1 and stage 2) so they understand that the majority of their letter is simply not true – it ignores the work of hundreds of people over thousands of hours to close the standards gaps via open, transparent, and bipartisan harmonization in both the Bush and Obama administrations.

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CancerLand – The Undiscovered Country

Diagnosed with metastatic esophageal cancer on June 8, 2011 Christopher Hitchens found that he had been transported to a foreign place.  Until his death 18 months later the award winning author picked up pen and wrote about his travels in a “new land” where everyone “smiles encouragingly,” “where the cuisine is the worst of any destination” and where a language is spoken that “manages to be both dull and difficult.” The recently published book “Mortality” is his voyage into “sick country,” a place we will call CancerLand.

The idea of moving far away is also described in Chet Skibinski’s 2012 diary-like book, “Cancer Country. “ “On May 15, 2008, I stepped into a foreign country” with freakish rules and disturbing customs.  Skibinski takes the reader along on his journey though several years of complex care and metamorphosis, not only medical, but also social, spiritual and personal.

CancerLand is a place not only of a body which visits hospitals, clinics, subjected to knives, drugs, x-rays and deconstruction by machine, but it is a destination of mind, where confusion, isolation, and fear transform knowing, growing and comfort in a bizarre, painful, spinning world which tries to break down the soul to yield suffering.   As both patient authors note, it is a transit from which it is difficult to return.
Cancer patients are cast out from safety, stability and control to a state of danger, chaos and subjugation.   Understanding the disease process as a distinct place, with strange language, customs and goals provides clues to the survival of body and mind.  Seeing CancerLand as an unwelcome Kafkaesque journey may help us fight the disease and adjust to the changes that occur.

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My Open Source Cure

[youtube width=”475″ height=”300″]http://www.youtube.com/watch?v=5ESWiBYdiN0[/youtube]

TED Fellow Salvatore Iaconesi released this video along with his digital medical records – everything from CT and MRI scans to lab notes. He posted the health files to invite the online world to participate in the process of treating his brain cancer. As he wrote on his website:

This is my OPEN SOURCE CURE. This is an open invitation to take part in the CURE. CURE, in different cultures, means different things. There are cures for the body, for spirit, for communication.

Grab the information about my disease, if you want, and give me a CURE: create a video, an artwork, a map, a text, a poem, a game, or try to find a solution for my health problem. Artists, designers, hackers, scientists, doctors, photographers, videomakers, musicians, writers. Anyone can give me a CURE.

Create your CURE using the content which you find in the DATI/DATA section here on this site… All CURES will be displayed here.

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The New Doctor’s Desk Reference: How to Break Bad News (For Doctors)

News organizations used Dr. Judah Folkman’s death to report on his decades-long cancer research career. Given his status as a distant, non-celebrity, non-Nobel surgeon, you may be asking yourself why you, personally, should care about his death. Here’s why.

We were in our second year of medical school, feeling the growing pressure of clinical years just around the corner, when we would be thrown into the hospital system. For now, we had lectures in a large hall with 130 students sitting in chairs that sloped down to a stage. Professors came with presentations and handouts and complex diagrams. The immunology lectures were continuous strings of letters and numbers, with only the occasional verb, impossible to decode as human speech without months of training. Every tissue, every disease, every human physiologic function was discussed, down to the sub-molecular level. After hours of these lectures, the air would get stale and backs would ache and the squeak of weight shifting in chairs would become a metronomic beat marking out time that seemed to pass endlessly.

Then, one day, Dr. Folkman walked on stage. He asked us to put down our pens. He said he was going to teach us something that no one else would ever discuss, much less teach. I can’t imagine what he was thinking as he looked out on the sea of our faces. Give or take a few years, almost all of us were twenty-four years old. Almost all of us were single, ambitious, untouched by any of the major human experiences—no children, tragedies, severe illnesses or grief. The youth, the arrogance, the lack of world experience, all of it had to be a daunting, uninspiring sight. Dr. Folkman knew that in mere months, we would be keepers of information that would profoundly change lives. Pathology reports, cancer diagnoses, even the death of a loved one, those were all things we would be telling vulnerable people. Our actions and our words would be often unsupervised, particularly when disaster struck in the middle of the night.

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You Get What You Pay For

Two recent research papers remind us that it may be difficult to cut U.S. healthcare spending without harming quality. The first, written by a research team led by University of Chicago economist Tomas Philipson, appears in the latest issue of Health Affairs and has deservedly garnered a fair bit of media attention. The authors examine cancer spending and survival times for patients in the United States and ten European countries during the period 1983-1999 (later data were not available.) Their data confirm what we already know about health spending; the average cost of treating a cancer patient was about $15,000 higher in the United States. But the data also show that the typical U.S. cancer patient lives nearly two years longer; most of the difference is attributable to prostate and breast cancer patients. The gain appears to be due to greater longevity rather than early diagnosis. Using generally accepted measures of the value of a life, they conclude that the benefits of additional health spending outweigh the costs by a factor of 4:1 or higher. The latter calculation does not consider QALYs (quality adjusted life years) and so may be overstated. The authors acknowledge that other nations may do a better job of cancer prevention, so that their overall approach to cancer may be superior to that in the U.S., but they can find no evidence of this one way or another.

Philipson’s study suggests that U.S. healthcare consumers may get a substantial bang for their higher bucks. Maybe the U.S. system is not so inefficient after all. What about efficiency within the U.S. system? Some providers are far more expensive than others. Is the higher cost worth it? A new study by a team led by MIT economist Joseph Doyle, and released as an NBER Working Paper, suggests that you may get what you pay for within the United States. Doyle and his colleagues ask whether higher cost hospitals in the United States achieve better outcomes than lower cost hospitals. It is not easy to answer this question, because higher cost hospitals may admit more severely ill patients. This results in a statistical problem known as selection bias that is difficult to eliminate with available severity measures.

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Give Big Tobacco a Kick in the Ash and Save Lives

What could be more pressing than ending suffering and death from cancer — a disease that kills 155 people every day in California?

A yes vote on Proposition 29 on June 5 to increase the tobacco tax by $1 will save lives from cancer and other lethal diseases caused by tobacco, protect kids from the tobacco industry’s predatory marketing, ease the enormous economic burden of tobacco use on the state and fund groundbreaking medical research on the leading killer diseases.

Yes on 29 is an opportunity to tell Big Tobacco that enough is enough. That we’re tired of the industry’s relentless assault on our children, our health and our economy. Proposition 29 was written by the state’s leading public health groups – the American Cancer Society, American Heart Association and American Lung Association – to empower Californians to fight back against Big Tobacco’s ongoing campaign of addiction and death. Proposition 29 will also help reverse tobacco’s debilitating drag on California’s economy, saving the state billions of dollars in health costs.

The tobacco industry spends every minute of every day surreptitiously recruiting new customers: our kids. During the past decade, Big Tobacco invested 10 times more on marketing its deadly products in California than the state spent on educating the public about its harmful effects. The tobacco industry spends more than $650 million each year targeting our state with deceptive marketing designed to recruit their next generation of customers – and has already spent nearly $40 million to distort the truth on Proposition 29.

The industry’s efforts are devastatingly proficient: California’s kids buy or smoke more than 78 million packs of cigarettes each year. Nearly 90 percent of the smokers in California started smoking before their 18th birthday.

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TEDMED 2012: Atul Butte

[youtube width=”520″ height=”270″]http://www.youtube.com/watch?v=dtNMA46YgX4[/youtube]

Supporters of the Big Data movement argue that data will change everything, but only once we break down the institutional and technological barriers that prevent us from getting at it. In his talk at TEDMED 2012 at the Kennedy Center, Stanford’s Atul Butte argues that the we already have more than enough to do real science, if only we know where to look.

Our Cancer Journey

Kathy heads to surgery tomorrow at 7am.   She’ll be NPO (nothing by mouth) after midnight.  She’ll wake at 5am, shower with Hibiclens (a antibacterial prep), and I’ll drive her to surgical check in.  Prior to surgery, the radiology department will insert a wire adjacent to the titanium markers that were placed in her tumor at first diagnosis.   Her surgeon will use this wire to guide the lumpectomy.

Her left breast will become smaller than her right.  She jokes that her career in exotic dancing will come to an end.

The operating room will call me at the end of her procedure and I’ll pick her up.   Since she’ll not have had general anesthesia, we’re presuming she’ll feel good enough for a bit of an extended ride home.   The last of our chickens arrives on Friday (Buff Orpington’s) and we’ll pick them up as we drive back to our new farm.

We’ll anxiously await the results of pathology.   If the margins on the lumpectomy tissue are clear, Kathy will start Radiation Therapy 1-2 months after surgery, likely late June or early July.

By Labor Day, if all goes well, this phase of our cancer  journey will end, although our continued vigilance for reoccurrence will be lifelong.

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Doctor Versus Doctor

I felt sad when I went to make rounds in the hospital.

One of my patients, a colleague, had been readmitted in poor condition for recurrence of a primary lung sarcoma.

I spent a few minutes examining Dennis and chatting.  He then, with a quizzical look, said, “Jim, I’m going to have to sue you.  I know I’m dying.  My wife Alice and the kids are still pretty young.”  He saw my look of surprise and added, “You know, I don’t have much life insurance or other very significant funds for them to live on.  It’s nothing personal.  I know you’ve given me good care, but my wife is upset and tends to blame you for the outcome.  I guess the hospital and others will be named.”

There wasn’t much more for me to say at the time except, “Dennis I can find another attending for you if you’d like.”  He replied, “No, I want to stay with you.”

Dennis was a well liked family doctor.  About five years earlier a “coin lesion” was discovered on a chest X-Ray.  This 2cm spot in the right upper lobe had a smooth rounded border and didn’t contain calcium.  A CT scan showed no enlarged lymph nodes and no other spots elsewhere.  A needle biopsy of the spot was not diagnostic.  We knew the spot was new because an X-Ray five years earlier was normal.  He hadn’t traveled to an area where Valley Fever or other fungal infections were common.

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