Are fears of Alzheimer’s overblown?

Margaret Morganroth Gullette’s op-ed in last week’s NYTimes dared to suggest that our fears about Alzheimer’s
may be overblown.  The Brandeis-based writer said:

 The mere whiff of perceived memory loss can have terrible consequences in an insecure economy in which midlife workers are
regularly (and illegally) laid off on account of their age. This epidemic of anxiety around memory loss is so strong that many older adults seek help for the kind of day-to-day forgetfulness that once was considered normal …Greater public awareness of Alzheimer’s, far from reducing the ignorance and stigma around  the disease, has increased it.

Today’s letters to the editor included several outraged responses

Having witnessed the disease firsthand, I can truly say there is something worse than death…I truly hope that Margaret
Morganroth Gullette and those she loves never experience the disease as my family has. I implore her not to use her public platform to minimize the horror that is Alzheimer’s.

But, Douglas Powell, described as the author “The Aging Intellect” and a psychology instructor at the Harvard Medical
School, came to her defense

Studies that followed up mildly impaired elders for three to five years found that a large minority remained stable and about 14 percent returned to normal. No one yet knows why.

Broken women put back together again

Two items of note in the local press.

In the Globe, master obit writer Bryan Marquard offers a remembrance of Angie Scardino, the Franklin women who allowed the former Globe reporter Alice Dembner to chronicle her life after a hip fracture. According to the Mayo clinic, nearly  half of all hip fractures occur in adults older than 80 years. While bone loss is a factor, most hip fractures are caused by falls.  

Mrs. Scardino, who most recently lived with her daughter in Franklin, but always thought of the house she and her late husband bought in Scotia, N.Y., as her home, died of congestive heart failure Friday at Beth Israel. She was 86.

Allowing herself to become the public face of an injury that takes the lives of so many older patients was, in many ways, uncharacteristic of Mrs. Scardino, who was so private she usually avoided trading stories with friends about the ailments of age.

Also, Rachel Zimmerman over at Commonhealth, offers a Q &A. with Dr. Roseanna Means who “started the nonprofit, Women of Means, in 1999, when she realized that help for the homeless was primarily geared toward men and overlooked the specific medical needs of women.  Earlier this month, Dr. Means was presented with a Community Health Leaders Award for her work by the Robert Wood Johnson Foundation.”  She begins with the Q:  How does a pedicure constitute medical care?

Finally, on the blogs, check out this week’s Health Wonk Review, which features another Q & A, this one with Evan Falchuk, President of the Boston-based company Best Doctors. Speaking to local consultant Dave Williams, Falchuk describes his company this way:

Evan Falchuk: We sell an employee benefit to companies that they give for free to their employees. We help people get the right diagnosis and the right treatment.  The way we do it is by collecting information from the patient, doing an interview, compiling records, having doctors analyze all the information and then consulting with experts from our Best Doctors database to figure out the right course of treatment.

This week’s HWR is brought to you by The Insure Blog.

Boston Blogs: Some cancer patients don’t want to be “brave”

Cancer patients hear it all the time – Be brave…you can win this battle…lick cancer…etc…

Some of them are sick of it. Cancer, they say, stinks. A positive attitude and all the pink ribbons in the world won’t save someone whose chemo has failed, they say. And, they are tired of all the chirpy advice. (See writer Barbara Erinreich’s comments from a 2001 Harper’s article, “Welcome to Cancerland.”)  

All of this is now being hashed out among three local bloggers. It started when prolific blogger Kevin Pho of New Hampshire ( Billed as “Social media’s leading physician voice.”) posted a chapter from a new book by  e-patient Dave. Dave deBronkart  the energetic embodiment of the connected patient, writes about “hope as a resource” in his take of surviving Kidney cancer — “Laugh, Sing and Eat like aPig.”  

Some people with cancer object to the constant barrage of “be positive” rhetoric, as reflected in comments on the site.  One goes like this:

… this excerpt makes me cringe inside. As someone with metastatic cancer, I often hear from friends and others who have read accounts of people who appear to have cured themselves of cancer by having the right attitude. The media loves (sic)to trot out this theme. The suggestion is that anyone who is sufficiently upbeat can prevail over their cancer. And, by extension, that anyone who does poorly must have the wrong attitude…

People with hepatitis or diabetes or broken bones do not get told to adjust their attitude. They are offered treatment regimens and told to stick with them. But cancer patients, particularly those without solid treatment options, are constantly urged to “think positive.”

Now, BIDMC CEO Paul Levy weighs in.

I started to write this post to offer my appreciation to Kevin, MD, for posting a chapter of ePatient Dave’s Laugh, Sing, and Eat Like a Pig, and for Dave and his publisher for graciously allowing anybody to read the entire chapter without having to buy the book. The story is compelling, and this particular chapter is especially so.

But that was before I read the exchange of comments on Kevin’s blog. At least one commenter took offense at her perception that Dave was glorifying the role of hope in the treatment of cancer, and in so doing might be disparaging people who do not experience that hope, suggesting that they are somehow weak and inadequate. As you read through Dave’s response and that of other observers, it becomes clear that he certainly did not intend to suggest such a conclusion.

 

State on back-to-school flu issues

From The Boston Globe

Massachusetts health authorities took the unprecedented step yesterday of deputizing dentists, paramedics, and pharmacists to help administer vaccines against both the seasonal flu and the novel swine strain expected to make a return visit in the fall.

From Mass DPH:

We continue our busy summer of planning for the fall flu season.  This week there was a great deal of emphasis on vaccination planning for seasonal influenza and also for novel H1N1 flu.  This year, because of expedited production, Massachusetts may see its supply of seasonal influenza vaccine earlier than ever.  It is likely that health care providers across the state could start vaccinating their patients for seasonal flu as early as the end of August.  This is important because while a vaccine for seasonal influenza won’t protect you from the new H1N1 flu, it WILL protect you from the seasonal flu — which will likely be circulating at the same time that H1N1 flu is circulating…

Simple Precautions to Help Stop the Spread of Flu Include:

• Wash your hands frequently with soap and warm water or use an alcohol-based hand sanitizer.
• Cover your cough with a tissue or cough into your inner elbow and not into your hands.
• If you are sick stay home from work and if your child is sick keep them home for 7 days, or 24 hours after your symptoms go away—whichever is longer.
• Stay informed about the latest developments on the H1N1 flu, by visiting www.mass.gov/dph.

Patient group joins breast cancer gene patent suit

Many Boston orgs have reps working with this not-into-pink,  Bay-area group, including Silent Spring Institute, Our Bodies, Ourselves and local breast cancer activist groups.

 Here from Breast Cancer Action’s press release:

 Breast Cancer Action (BCA) is challenging the legality of patenting human “breast cancer genes.” BCA is joining the American Civil Liberties Union in suing Myriad Genetics (a private biotechnology company based in Utah), that currently holds the patent on the two human genes known as BRCA1 and BRCA2.

The BRCA1 and BRCA2 genes are present in every human. However, people with certain genetic mutations on these genes are at an increased risk of developing breast and ovarian cancer. Myriad holds exclusive rights to these genes and their mutations and to the research performed on them. Testing for the BRCA1 and BRCA2 mutations can only be performed at Myriad labs and currently costs over $3,000.

Since 1998, when BRCA1 & 2 were first patented, BCA has maintained that the patenting of human genes interferes with patients’ access to genetic testing and medical care.

“The time has finally arrived for the courts to decide who owns our genes,” said Barbara Brenner, executive director of Breast Cancer Action.

Here’s a story on the topic from MIT’s Tech Review.

More than 6,000 clinical trials underway in Massachusetts

The Feds run a searchable site of clinical trials- tests of new drugs, devices and treatments.

ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial’s purpose, who may participate, locations, and phone numbers for more details.

I like to poke my head in there once in a while to see what people are studying.  A search on “Massachusetts” comes up with 6,419 trials.

Some are short and small. This one will involve 12 subjects and be finished by the end of the year. MGH is recruiting subjects for a study on “Tai Chi Mind-Body Therapy for Chronic Heart Failure”  It is one of 36 studies on the list looking at Tai Chi, which researchers define as a form of exercise that involves “both gentle physical activity and meditation”.

“This study will examine the effects of a tailored tai chi program on functional capacity and quality of life in patients with HF.

Participants will be randomly assigned to either a tai chi program or heart health education for 12 weeks. Participants in both groups will undergo a bicycle stress test at study entry and will receive weekly training sessions of their assigned intervention. Self-report scales and questionnaires will be used to assess participants at study start and at the end of 12 weeks.”

Some are long. I’m sorry to say that I’ll probably be dead by the time this one is over in 2036 – hopefully not from colon cancer. My mother had it and survived so I’m a colonoscopy vet.

“The Northern-European Initiative on Colorectal Cancer (NordICC)”

This is a Norwegian study but Harvard is running one of two US sites participating.

Colonoscopy can detect and remove CRC precursor lesions and may thus be effective for CRC prevention…However, while colonoscopy screening for the prevention of colorectal cancer is established in the United States and several European countries, no randomised (sic) trials exist to quantify the possible benefit of colonoscopy screening. NordICC is a randomised trial investigating the effect of colonoscopy on CRC incidence and mortality.

I found this one interesting because I thought it was well-established that screening lowers the risk of dying. But I see that is not quite true, according to the latest guidelines from U.S. Preventive Services Task Force (USPSTF)

 

For news about H1N1 flu, check links to the right.  Here’s the latest from the Globe.

The diagnosis of a probable swine flu infection on BU’s medical campus emerged even as the future trajectory of the viral disease outbreak remained uncertain. The number of cases in the United States continued to climb – to 244 – and by yesterday, the germ had arrived in 19 nations.

 But disease trackers derived a measure of comfort from reports showing that most Americans with the illness, which is also being referred to by its scientific name of H1N1, suffer no life-threatening symptoms. Specialists also remain intrigued by the finding that most people stricken with the disease are relatively young. In Massachusetts, for example, four of the six patients with confirmed cases are 9 to 14 years old.

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.”