Chemobrain: How Cancer Therapies Can Affect Your Mind


Once a science writer, always a science writer.

Ellen Clegg, an editor at The Boston Globe, said she got the idea for her new book when a friend with breast cancer started complaining about “chemobrain.”

Clegg sensed a medical puzzle.

The former health editor did some digging and found new and ongoing research asking – do cancer therapies affect the mind? She says the evidence supports the notion that chemotherapy can trigger ailments ranging from fatigue to brain damage.

“Because a diagnosis of cancer is no longer always an automatic death sentence, there are millions of survivors out there who are done with their treatment but still coping with long-term side effects like chemobrain,” she said in a recent e-mail to BHN.

Clegg has a blog on the topic and she’ll be speaking at the Truro Library on Cape Cod on Friday, March 27.  With a family history of cancer, I think about these things. I would want a  book like this if I were facing chemo — reliable, just technical enough and not too self-helpy.

More here  from a 2007 NYTimes story: “Until recently, oncologists would discount it, trivialize it, make patients feel it was all in their heads,” said Dr. Daniel Silverman, a cancer researcher at the University of California, Los Angeles, who studies the cognitive side effects of chemotherapy. “Now there’s enough literature, even if it’s controversial, that not mentioning it as a possibility is either ignorant or an evasion of professional duty.”

Clegg notes that some teens and young adults successfully treated for childhood cancer face “a poignant double-whammy…long-term cognitive damage caused by the radiation treatments and chemotherapy that saved their lives.”

Dr. Christopher Recklitis at Dana Farber runs a clinic for them.

A bit off topic: I started to do some reporting on the long term effects of childhood treatments and ended up focusing on one – congenital heart defects. Here’s a story I wrote for the LA times.

 “When young heart patients become adults: Doctors are taking note of the unique needs of people whose defects started in childhood.”



Can computers save the health care system?

Obama’s team is relying heavily on HIT – health information technology — to bring some sense to the system. The approach takes aim at big problems, including administrative costs, medical errors and inefficiencies. It also promises to help doctors stay up on the science of what works and what doesn’t.

Your hospital may have the newest, multi-million dollar scanner. But, you might be better off if your doctor is up to date on the best way to handle that pain in your hip.

HIT includes examining room and bedside computers where doctors and other providers can access a patient’s history — and often, a medical library. My doctors at Harvard Vanguard electronically enter records, prescriptions and orders. I go downstairs to the pharmacy or lab and they’re ready for me. I can send them e-mails and they get back to me on the same day.  

It’s a whole new world of acronyms, like HIT and COPE — Computerized Provider Order Entry. At the Partners system here in Boston – Mass General, the Brigham and beyond — they call it “high performance medicine.” Partners now has COPE systems in most outpatient areas. Also, all Partner’s-aflliated primary care physicians must adopt EMRs (Electronic Medical Records) by the end of 2008.  Specialists have until the end of 2009. 

For more on HIT in the state and region,  check out the links to the right, especially  The  Massachusetts eHealth Collaborative.  And, watch here for my reports on regional HIT projects  and interviews with local players.

This just in from Tufts Health plan on IT

Details emerge on White House health reform plans

 3 p.m. update — HHS budget summary released today.  

Lots of advance reporting in today’s papers on health care proposals in the pending White House budget. (The Globe ran a version of The Washington Post story inside)

 Here’s a sample:


The cuts in health-care spending would affect managed-care companies, prescription-drug manufacturers and hospitals, according to a senior administration official. Lobbyists representing these industries reacted mildly Wednesday, emphasizing their interest in seeing health-care reform succeed — a sign of the momentum already built behind the effort.

 “We will be a constructive participant in efforts to reform all parts of Medicare,” said Robert Zirkelbach, spokesman for America’s Health Insurance Plans, a lobby group.

 The administration acknowledges $634 billion is not enough to pay the full cost of health-care reform that Mr. Obama and many congressional Democrats envision; the final price tag is estimated at more than $1 trillion over 10 years. The senior official who previewed the health plan Wednesday said the budget proposal is intended as a down payment and said the administration would work with Congress to find the rest.


The Washington Post

President Obama is proposing to begin a vast expansion of the U.S. health-care system by creating a $634 billion reserve fund over the next decade, launching an overhaul that most experts project will ultimately cost at least $1 trillion….

 We aim to get to universal coverage,” administration budget aide Keith Fontenot told health-care activists last night. Obama is “open to any ideas people want to put forward.

 He wants to work openly with the Congress in a very inclusive process.”

Virtually every major player in the health-care sector will find something to object to in Obama’s plan, an intentional decision made in the hope that “a little bit of pain” will be offset by the appeal of insuring millions more people, said one White House adviser.


The New York Times

To finance health care reform, administration officials suggested to senior aides in Congress on Wednesday that revenues could be raised by ending the policy of excluding the value of employer-provided health insurance from income taxes.

 But the officials emphasized that the administration was not advocating that option, which not only is anathema to some in organized labor and business but also conflicts with Mr. Obama’s position in last fall’s presidential campaign.

 The administration is proposing a number of other politically contentious ways of offsetting the costs of the health care initiative. Mr. Obama wants to require drug companies to give bigger discounts, or rebates, to Medicaid, the health program for low-income people.

The trade groups began to respond yesterday. Bottom line – everyone supports health reform as a concept. Expect fierce opposition to the details as reform becomes a reality.  



 American Hospital Association

Boston’s Blumenthal and Obama’s health plan

Dr. David Blumenthal  of Harvard’s Institute for Health Policy is one of Obama’s health policy advisors.  Check out the Institute’s website for details. You’ll hear echoes of last night’s speech.

Dr. Blumenthal, founding director of IHP, and Dr. (James) Morone, chairman and professor of political science at Brown University, analyzed recently-released tapes of President Lyndon Johnson’s conversations in the Oval Office and other archival materials concerning the Medicare and Medicaid legislation.  Drs. Blumenthal and Morone argue that President Johnson played a larger role in securing passage of this landmark legislation than historians previously believed, and they outline lessons from Johnson’s experience for today’s leaders.


Find out what he and Dr.  Monroe have to say in this NEJM story.  

Budget deficit and health reform

This morning’s Boston Globe has a big headline:

 Summit vows healthcare push : Obama goal to insure millions intended to save money later

 So, I decided to look at how other papers are playing Obama’s approach to health care and the federal budget. The Newseum makes that easy. The D.C. museum posts front pages from around the world on its website each day.

 Most of the papers I looked at focused more broadly on the deficit. The Washington Post story was inside on page 5. The LA Times has a tease on the front to a story on the battle over effectiveness research, which I wrote about last week.

Secret meetings and health reform

So, I’m not The New York Times, which means I’m not the first journalist insiders go to with internal White House memos. Those go to Robert Pear at the Times, who recently gave us a peek inside the workings of the Obama health reform team.  (See “Backstory” on the NYT page for an audio inteview with Pear —  a joint effort with NPR’s The Take Away.)

 Since last fall, many of the leading figures in the nation’s long-running health care debate have been meeting secretly in a Senate hearing room. Now, with the blessing of the Senate’s leading proponent of universal health insurance, Edward M. Kennedy, they appear to be inching toward a consensus that could reshape the debate.

 Many of the parties, from big insurance companies to lobbyists for consumers, doctors, hospitals and pharmaceutical companies, are embracing the idea that comprehensive health care legislation should include a requirement that every American carry insurance.

While not all industry groups are in complete agreement, there is enough of a consensus, according to people who have attended the meetings, that they have begun to tackle the next steps: how to enforce the requirement for everyone to have health insurance; how to make insurance affordable to the uninsured; and whether to require employers to help buy coverage for their employees.

 I understand that some initial public policy debates have to take place in private. But, I’m not a big fan of secret meetings.  Remember Hillary Clinton’s secret team?  That process didn’t work out too well for anyone.  See what new-model journalism site ProPublica has to say about this.

 Also see today’s (2/22) Times for a 1A story on moves toward taming the second head of the health care beast – costs

 While some people have predicted that Mr. Obama would have to shelve his priorities given rising deficits, his determination to proceed, especially on health care, reflects his economic advisers’ conviction that the government cannot control its finances without reforming health care. The ballooning cost of health care, and thus Medicare and Medicaid, is the biggest factor behind projections of unsustainable deficits in coming decades.

“He wants to present an honest budget, he wants to focus on health care, and he will cut the deficit by at least half by the end of his first term,” Peter R. Orszag, director of the White House Office of Management and Budget, said in an interview.

The Boston Globe on infectious diseases

A lot of good infectious disease reporting in the Globe today, starting with Stephen Smith’s story on a recent case at MGH.  

 Massachusetts General Hospital waited four days before alerting Boston health authorities that a wave of gastrointestinal illness was sweeping through patients and staff on one floor. The delay earlier this week is an apparent violation of rules requiring prompt reporting of suspected infectious disease clusters.

 Dr. David Hooper, chief of the infection control unit at Mass. General, said the hospital moved swiftly to contain the illnesses internally, adding that the “so-called delay” was the result of the hospital collecting information it believed the Boston health agency needed for a comprehensive investigation…Dr. Anita Barry, the city’s director of communicable disease control, said yesterday that Mass. General “dropped the ball” in failing to report the illnesses sooner.

 Is it me or does it sound like MGH is a little defensive on this? Can you say nosocomial? That’s what we would call jargon in my writing class. The CDC has started calling these cases healthcare-associated infections. Here’s a link to a Q & A on nosocomial infections and some good news. The infection rate is going down.  

Also, fellow blogger Elizabeth Cooney follows up with a full story on 12-year-old Hunter Pope’s flu death by making a point I could have been clearer about in yesterday’s post – a flu shot won’t necessarily protect children from the kind of invasive infections that may have been at work here. Pope’s brave father, Ken, who has been talking to the media through his grief, again helps us all understand this case more clearly.   

 “They think that he died because he didn’t get his flu shot,” Pope said, referring to media reports. “That’s not the case. The doctors and everyone says, really, it doesn’t have a huge bearing on it.”

 All of this reminds me of stories I wrote in the 1990s about college students getting flu-like symptoms and dying within 24 hours. Many of those cases where linked to a different but similar bug — fast moving infections called meningococcal disease. Luckily, there are now vaccines that lower the risk of infection.

It also reminds me to encourage you to read the health news in the Globe.  Maybe even help keep the paper alive by springing for a hard copy. (Disclosure — a family member works there and I sometimes write for them.) 

Their  health reporting is very reliable.  And, we need to give the newspaper reporters and editors of the world some credit for doing more with less.  Go team!

Why do some kids die from the flu?


      Many of my writing students have been out with the flu. Usually they miss a class and show up for the next one tired and bleary-eyed.

     They usually don’t die.

     So, why did the flu kill a lively tween from JP? We don’t know yet.

      But in recent years, deadly cases of the flu in children have been associated with a drug-resistant bacteria called methicillin-resistant Staphylococcus aureus, or MRSA. Of the 22 kids who died from  influenza in 2006-2007, 15 children had MRSA infections, according to the Centers for Disease Control.

      People usually don’t die from staph infections either. But, in RARE cases they do. For parents worried about the flu, the best option is to make sure your kids are vaccinated and recognize the signs of an invasive infection. These infections move very fast.         

       I’m sure the web is filled with  misinformation on this topic. These infections are very rare and  not well understood –why are they fatal in some and not others?  And, vaccines are fodder for many urban myths. But, both the state and the Centers for Disease Control have good information on their sites.

        Here are some  flu “facts you need to know” in many languages.  And here are four words from me – wash your hands often.

Stimulus bill includes funds to compare effectiveness of medical treatments

            If you have a cold, what should you do? Take aspirin? Vitamin C? Flush your sinuses out with a little pot that looks like a lamp a kid would rub to release a genie? (I have one of those.) What about pain from gallstones? Should you let a doctor take out your gall bladder?  (I used to have one of those.)

            Dr. Elliott S. Fisher of Dartmouth Medical School in Hanover, New Hampshire talked to The New York Times this weekend about funding in the stimulus bill for what is known as effectiveness research. The money will be for “head-to-head comparisons of different treatments,” he told Robert Pear for a Sunday story. (Dartmouth has led in this area of research – finding out what works and what doesn’t.)  

The research, as he told the Times, will ask questions like:

Is it better to treat severe neck pain with surgery or a combination of physical therapy, exercise and medications? What is the best combination of “talk therapy” and prescription drugs to treat mild depression? How do drugs and “watchful waiting” compare with surgery as a treatment for leg pain that results from blockage of the arteries in the lower legs? Is it better to treat chronic heart failure by medications alone or by drugs and home monitoring of a patient’s blood pressure and weight?

Conservatives, however, object to what they see as the government dictating – often via bedside computers — how doctors should deliver care.  They used to call it “cookbook medicine.”

 Here’s what radio host Rush Limbaugh said about it last week:

The stimulus pork bill being voted on in the Senate contains the nationalization of health care, the computerization of everybody’s health records, rationing of medical care for seasoned citizens. (Editor’s note – RL-speak for the elderly)   If you’re a seasoned citizen and you go to the doctor, you have an ailment of some kind, the doctor will do a test.  The doctor will then consult your medical records.  The doctor will then consult federal guidelines to find out if you are to be treated.  And if the cost of your treatment as a seasoned citizen is deemed by the government to be too expensive based on how much longer you have to live, then you don’t get treated. 

Here’s a response to Limbaugh from a blog called Media Matters, which promises to correct “conservative misinformation in the U.S. media.”

 The bill “does not establish authority to ‘monitor treatments’ or restrict what ‘your doctor is doing’ with regard to patient care, but rather addresses establishing an electronic records system such that doctors would have complete, accurate information about their patients “to help guide medical decisions at the time and place of care.”

 So, expect to see effectiveness research cast one way by the administration and very differently by Limbaugh-style conservatives.

2/20 Update — WBUR’s  On Point did a show on this recently – Getting Health Costs Right

2/24 — I see the Washington Times compared this approach to Nazis doctors experimenting on Jews, complete with a photo of the führer.

Young and underinsured

    The kids who bike and skateboard down the railing at the community center near my house know how to land on their feet, literally. When if comes to staying healthy, they have numbers on their side too. That’s why the federal government was able to expand health coverage for kids – they are less likely to get seriously ill than those 65+ Medicare enrollees.

        But, several reports suggest that young people are the new underinsured. All it takes is a broken bone or minor surgery and a 20-something can be in for thousands of dollars in copayments.

        Even before Mass passed its mandatory insurance law, the state required coverage for college students. But, some say it is inadequate. Students at Tufts University recently formed a group to deal with it. Kay Lazar at The Boston Globe wrote about the problem last week, citing a 2008 GAO study.

        The Globe also has an op-ed today by local writer David Scharfenberg about poor coverage for young people in general. He cites a Commonwealth Fund study.

        The graphic  in the hard copy of the Globe op-ed looks like one of my neighborhood daredevils – except mine don’t wear helmets. Make sure yours do.

               P.S. Lazar also has a nice piece today in the soon-to-disappear Health/Science page on end-of-life decisions.



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