The unanswerable question, “What If?” often dominates the talk when it comes to illness. What if the tumor had been caught earlier; what if the child’s ache taken more seriously? When it comes to suicide, the agonizing “What Ifs?” can run rampant.
Recently, following three suicide deaths by high school students in Newton, Mass. there has been much talk about what, if anything, might have been done to prevent these acts.
A new national study offers no easy answers — indeed, many people who die by suicide do so without any prior mental health diagnosis, researchers report. But this new research does suggest there may be opportunities — through primary care doctors, and other specialists, for instance — to more accurately identify people at risk for suicide, and perhaps intervene before it’s too late.
The new federally-funded study — based on a longitudinal review of more than 5,800 people who died by suicide from 2000 to 2010 — found that nearly all of these individuals (83 percent) saw a doctor or received some kind of health care in the year prior to their death, but half of those individuals did not have a mental health diagnosis. Moreover, researchers report: “Only 24% had a mental health diagnosis in the 4-week period prior to death.”
Also, strikingly, one in every five people who died by suicide “made a health care visit in the week before their death,” says the paper’s lead author Brian K. Ahmedani, Ph.D., assistant scientist in the Center for Health Policy and Health Services Research at Henry Ford Health System in Detroit, who speaks about the work in an accompanying video.
The study, published online in the Journal of General Internal Medicine, concludes that: “Greater efforts should be made to assess mental health and suicide risk. Most visits occur in primary care or medical specialty settings, and suicide prevention in these clinics would likely reach the largest number of individuals.”
Of course, that’s easier said than done. Anyone familiar with a typical primary care visit knows it can be, well, a bit rushed — not quite the perfect venue for dwelling on complicated emotional issues that may be difficult to articulate. Unless specific psychiatric symptoms are raised, they are often not part of routine care, says Massachusetts General Hospital psychiatrist Steven C. Schlozman, Continue reading →
Giving birth can be a trying experience all by itself. Imagine going through labor in hand-cuffs or leg restraints. The Patrick administration is taking steps to make sure that doesn’t happen in any jails or prisons in this state.
“Regulation is good, but here, law is better. The legislature is considering a bill that would make this ban law. I want to be clear that I support this bill and I urge the legislature to send it to my desk for signature this session,” Patrick said.
State undersecretary of criminal justice Sandra McCroom says the practice was already prohibited at state-run prisons, but the new rule also applies to county houses of corrections operated by sheriffs.
“Sheriffs are all independent elected officials, and their policies aren’t regulated by us in any way. So now the Governor has insisted that the Department of Corrections create immediate regulations that resolve that issue,” she said.
The executive director of the Massachusetts Sheriffs’ Association says he knows of no sheriffs who permit women to be shackled during labor, but activists, including the group NARAL Pro-Choice, say they’ve heard otherwise. Megan Amundson, Executive Director of NARAL Pro-Choice, says, “We’re hearing from facilities across the state that the practice is still happening. We are hearing from doctors and from women that they are being shackled during labor.”
“They Would Not Remove The Cuffs”
“When I was in active labor the jail medical staff had denied that I was in the late stages of labor that I was,” said Kenzie, a woman who asked that WBUR only use her first name because she doesn’t want any more problems with the criminal justice system.
Kenzie says she was restrained by correctional officers from the Western Massachusetts Regional Women’s Correctional facility.
“This being my sixth child, I kept telling them that it was time. They just kept denying me, saying I wasn’t really that far into labor because I was not hysterically screaming. It wasn’t until I had said that I had the urge to push that they decided to take me seriously,” she said.
“On the car ride there, I asked if they could remove my cuffs because I needed to be able to hang on, and, not only, so I didn’t fly around the hard plastic seats but also just to brace myself and be able to not push, and they would not remove the cuffs.”
And she says the restraints stayed on once she got to the hospital, driven there by two correctional officers — one male and one female. The female correctional officer stayed with her during delivery.
“… Right immediately after delivery, they immediately shackled my leg to the bed,” she said. “You know, no woman should ever have to go through that. If you ever delivered and had a child you would understand.”
“I was in the emergency room, and it took a lot of convincing but the CO finally had taken the cuffs off of me so I could take my pants off and be able to get checked and get onto the bed safely,” she said.
But Kenzie says she was back in cuffs pretty quickly.
“We left the jail at 9:50 a.m. and my son was born at 10:01 a.m. and right immediately after delivery, they immediately shackled my leg to the bed,” she said. “You know, no woman should ever have to go through that. If you ever delivered and had a child you would understand.
We asked a representative of Hampden County Sheriff Michael Ashe for comment. Patricia Murphy, Assistant Superintendent of the Western Regional Correctional Center, says the facility has had a policy for some twenty years not to shackle during labor. She admits the restraints are allowed during transport from the correctional facility to a hospital. She says that even under the Governor’s new policy, restraints during transport are allowed.
Kenzie is out of jail now after serving 15 months of an 18-month sentence.
Before her release, her son was diagnosed with leukemia. He’s in remission now, but she says she spends a lot of time traveling with him from Western Massachusetts to Boston for medical treatment.
Editor’s note: This post was expanded on 2/25 with additional material, including the response from Patricia Murphy of the Western Regional Correctional Center.
If there’s a science equivalent to the Oscars, or People magazine’s Sexiest Man Alive, this might be it: last year Cancer Immunotherapy – a technique that harnesses the body’s own immune system to fight cancer — was named Science magazine’s “breakthrough of the year.”
In bestowing the honor, Science Editor-in-Chief Marcia McNutt, whose own father died of lung cancer, wrote: “We believe that 2013 marks a significant moment in cancer history, and today’s achievements merit recognition and celebration, even if uncertainties remain.”
The idea of exploiting the body’s own immune system to battle cancer isn’t new. But what’s getting all the buzz lately is some promising new data.
In December, 2013, researchers led by Dr. Carl June, director of translational medicine of the Abramson Cancer Center at the University of Pennsylvania, reported the results of a study testing immunotherapy on children with acute lymphoblastic leukemia (ALL). Of the 22 patients treated, 86 percent experienced complete remissions. And new research out of Memorial Sloan-Kettering Cancer Center this week shows that the treatment also had an effect on 14 out of 16 adult patients with ALL.
(A bit about how it works: This type of treatment, known as T-cell immunotherapy, functions a little like a blood transfusion. After a patient gives blood, scientists isolate T-cells, a white blood cell that is part of the immune system. They genetically alter these cells in a laboratory — programming them to kill cancer cells — before they are reinfused into the patient. Dr. June calls these modified cells “serial killer” T-cells.)
Despite the excitement, it’s still too early to tell what the long-term effect of this type of therapy might be, or why it doesn’t work in some of the patients who were treated.
AM: Could you explain the concept of immunotherapy?
CJ: Immunotherapy is an approach that can be used for a number of diseases, from things like asthma and hay fever to cancer. In the case of cancer, where my laboratory has worked, there are a number of approaches to harness the immune system so that it can attack the cancer cells. In animal models, one can show that it can cure animals that have very advanced cancers. Continue reading →
At a forum on public safety today, Gov. Deval Patrick said the practice of shackling female inmates while they are in labor should end immediately. He said he’s issuing emergency regulations through the state Department of Corrections to ban the practice in all correctional facilities.
Here’s what the governor said (according to a spokesperson, who emailed me his comments):
While on the subject on the use of restraints, let me be clear that we will also end — finally, completely and immediately — the use of restraints on pregnant inmates in labor. Our current regulations prohibit this in state prisons and today the Department of Corrections will issue emergency regulations extending that prohibition to all facilities, including Houses of Correction. Regulation is good but here law would be better. The Legislature is considering a bill that would make this ban the law. I support that bill and I urge the Legislature to send it to my desk for signature this session.
The bill that Patrick referred to has been on file for over a decade, according to Megan Amundson, executive director of NARAL Pro-Choice Massachusetts.
Regarding the governor’s order today, Amundson said: “We applaud the governor for taking this action.”
But, she added, the proposed legislation “is more comprehensive in terms of supporting and also protecting women’s health. The bill protects women’s health throughout pregnancy and labor and postpartum. The regulations ensure that women aren’t shackled during labor but the bill is stronger, and having something in statute is stronger than having something in regulation because it ensures the protection of women’s health going forward.”
In a press release issued after the governor’s announcement, NARAL Pro-Choice Massachusetts said:
…We look forward to seeing the emergency regulations when they are filed later today.
We join the Governor in calling upon the legislature to pass the Anti-Shackling bill (S.2012), currently in Senate Ways and Means, this session to put an end to this practice and ensure that the health of all pregnant women in the Commonwealth is protected. Massachusetts needs to join the 18 states – including Texas and Louisiana – that have already passed laws to ban shackling of pregnant women in jails and state prisons.
The Massachusetts proposal would prohibit the practice and create streamlined laws in both county jails and the state prison system “banning the shackling of pregnant women during childbirth and post-delivery recuperation — unless they present a specific safety or flight risk.”
This winter is a struggle. We’re awash in excuses not to get outside and move freely, and exercise seems secondary to just getting through the day. Yesterday, when it started raining ice, for instance, didn’t you just want to wrap up in layers with a hot cup of sweet tea? But, of course, that’s precisely what you shouldn’t do.
Two recent reports re-emphasize everything you already know, but with added detail: fitness (and that involves weight, nutrition, exercise and overcoming a sedentary lifestyle) matters.
Why? Well, here are some of the specifics (that are not actually about exercise per se, but related to it): for women, staying at a healthy weight and avoiding obesity can truly allow you to age (past 85, even) without disability.
When the researchers looked at the impact that obesity or being overweight — calculated by body mass index — took on the women’s health, “we found that women with a healthy body weight had a greater chance of living to 85 without developing a chronic disease or a mobility disability,” Dr. Rillamas-Sun said. “The heavier you are, the worse your chances of healthy survival.”
And in another blow to the reclining life, researchers at Northwestern report that “every additional hour a day you spend sitting is linked to doubling the risk of being disabled.”
This is less a “why to exercise” finding than a “why not to sit” finding. Still, my point is that the more you’re jogging (or doing water aerobics, or yoga, or shoveling when necessary) the less you’re sitting.
Here’s how the Northwestern news release sums things up: “If there are two 65-year-old women, one sedentary for 12 hours a day and another sedentary for 13 hours a day, the second one is 50 percent more likely to be disabled.” Continue reading →
A proposal to prohibit the scary practice of handcuffing pregnant inmates during labor has cleared its first hurdle through the Massachusetts Legislature. If passed, the so-called “anti-shackling bill” would “create uniform laws in county jails and the state prison system banning the shackling of pregnant women during childbirth and post-delivery recuperation — unless they present a specific safety or flight risk,” according to an earlier WBUR report.
“This bill has been on file for over a decade — the language has changed a bit — but it’s never seen the light of day,” says Megan Amundson, executive director of NARAL Pro-Choice Massachusetts. The bill was reported out of committee on Friday, and now it will be given a new number and then most likely go to the House Ways and Means Committee, Amundson says.
Here’s more from the NARAL Pro-Choice Massachusetts news release:
In a step toward joining the 18 states that have passed legislation banning the shackling of pregnant incarcerated women, the Massachusetts Joint Committee on Public Safety has released the Anti-Shackling Bill, a bill the prohibits the practice of shackling pregnant women in our jails and prisons, sponsored by Senator Karen Spilka. The bill has now passed the first hurdle to passage.
“As hard as this is to believe, it is not unusual for pregnant women in Massachusetts jails to be handcuffed to the hospital bed even while in labor,” said Megan Amundson, Continue reading →
Researchers at Children’s Hospital Boston report that children who have been bullied suffer not only the immediate blow of humiliation or worse, but that the toll of such childhood insults may linger for years — particularly if the bullying re-occurs — and lead to dramatically worse mental and physical health.
The negative impacts of chronic bullying may accumulate and snowball, researchers report, with ongoing bullying associated with greater depression symptoms in kids and lower self-worth over time.
We analyzed data from 4297 children surveyed at 3 time points (fifth, seventh, and tenth grades) in 3 cities. We used multivariable regressions to test longitudinal associations of bullying with mental and physical health by comparing youth who experienced bullying in both the past and present, experienced bullying in the present only, experienced bullying in the past only, or did not experience bullying.
RESULTS: Bullying was associated with worse mental and physical health, greater depression symptoms, and lower self-worth over time. Continue reading →
An 1895 image of “perfection,” which fits about as comfortably as perfectionism does today. (Wikimedia Commons)
“Perfect is the enemy of good.”
Don Murray, a writer, writing coach and professor whom I sometimes edited at the Boston Globe, used to say that all the time. It took me a while to absorb it, because I had grown up being taught to aim for perfection. But it’s true.
If you expect yourself to be perfect, you may get so tied up in knots that you won’t even manage to be good. And, conversely, if you let go of perfection, you may get better results than you’d ever dreamed — as I did on the scale this week. (More on that later.)
Don taught me to write something, anything, just get it up on the screen and then worry about polishing it later – and, at some point, stop polishing it and just turn the damn thing in. Deadlines make that easier; you can’t keep polishing forever with an editor breathing down your neck.
So, when it came to writing, I got pretty good at abandoning my hopes of perfection. When it came to living, though, not so much.
I couldn’t just have a fairly clean house – it needed to be spotless. I couldn’t just serve dinner every night – it needed to be entirely homemade, absolutely healthful and completely delicious. And I couldn’t just exercise a little – I needed to do it exactly right, or not do it all.
And that’s the problem with perfectionism: If I wasn’t doing it perfectly, why bother to do it at all? The dust bunnies, pizza boxes and abandoned treadmill in my house speak all too eloquently of the results. Perfect is, indeed, the enemy of good.
In a nutshell, that’s why I jumped at the proposal to do Project Louise. First of all, I’d have a bunch of deadlines: a weekly one, to show up and report what I’d done, and the end-of-year one, reminding me every time I thought about it that I was aiming for solid, measurable improvement in a specified period of time. I wasn’t just vaguely vowing to get healthier; I was promising to take active steps, every week, toward a permanent change in how I live my life.
It also seemed to me that having a whole year to make these changes, and having a huge team supporting me along the way, would make it easier for me to accept the idea of gradual, sustainable change. I wouldn’t have to do anything overnight; as I instinctively knew, and as my coaches have reminded me from the start, it was more important to take small but permanent steps forward, and to give myself permission to mess up along the way, than to try to get everything “perfect” from the start.
But lately I’ve found myself beset by questions of whether I’m doing it “right.” Continue reading →
You’re diagnosed with cancer. Your life changes in an instant and you’re faced with big choices and no road map. Consider this scary statistic: Five-year survival rates for common cancers can vary by 50 percent depending on where a patient is treated. And this: You often can’t get precise answers on which type of cancer responds to which type of treatment.
The uncertainties could drive anyone mad; and if you’re like Marty Tenenbaum, a cancer survivor, computer scientist and Internet entrepreneur who thrives on data, it can make you truly crazy. “Patients are dying because information is not evenly distributed – which is outrageous in the Internet age,” Tenenbaum says. “Your treatment is based on your mail ZIP code, not the molecular ZIP code of your tumor.”
He cites the 50 percent variation number often as evidence that better information can save many lives. He recalls when he first learned of his cancer, “I went running around to six different doctors, each had a different treatment recommendation, but there was no data with which to make a rational decision on what would work best for me.”
Tenenbaum was diagnosed with metastatic melanoma in 1998 at the age of 55. “The wicked thing about melanoma is that it can metastasize anywhere — and it does,” he said. A cure, in his case “was almost out of the question…treatment options were minimal.” Tenenbaum’s cancer had spread such that surgery wasn’t considered viable. Still, Tenenbaum, a tenacious guy who got rich in the dot.com boom, set out to find a surgeon, which he did — Donald Morton, the renowned cancer surgeon and researcher.
Sixteen years later, Tenenbaum is now an advocate for what he calls “precision oncology 3.0” – using molecular profiling and sophisticated computational methods to reverse-engineer the putative networks that drive a given patient’s tumor, and attack these drivers with combinations of targeted therapies. He founded the nonprofit Cancer Commons to level the cancer playing field so that all patients get access to the same, top-rate data. “Awareness is not the problem today,” he says. “We need science, data, so patients can approach their cancer in a systematic way.”
Every patient experiences this: you face a life or death decision, which often must be made in days. You go out for second opinions and get conflicting recommendations. You’re thrust into this strange world with no maps, no Zagat’s, no nothing.
Cancer Commons, which exploits the “convergence of recent developments in genomics, big data informatics, social networks, and personalized medicine,” aims to radically transform cancer research and treatment. Here’s how it works. If you’re a cancer patient, you share your data (anonymously) — what type of cancer you have, its molecular signature (if you’ve got that), what types of therapies and treatments you’ve tried and whether they worked or didn’t.
What you get in return is highly targeted news and updates on developments that may be clinically relevant to you — including results from the latest medical conferences and researchers, tweets on the top takeaways from the annual personalized medicine meetings, and relevant patient blog postings. You also get access to a curated data base linking molecular subtypes of cancer, with recommended treatments and trials. That knowledge is continually updated based on scientific developments and actual patient outcomes.
When the Commons grows big enough, the thinking goes, there will be a large pool of useable data available for all. (Currently there are only a couple of thousand patients involved, with the focus on melanoma, lung and prostate cancer, but Tenenbaum says a big expansion is in the works.) “Once we get enough data, patients will be able to know, for the first time, what their peers are actually doing and how it’s working. If they then report back what they did, a virtuous learning cycle ensures, resulting in better and better data.”
Put another way, he says Cancer Commons hopes to build “a consensus model of the various subtypes of cancer and how best to treat them with the latest targeted- and immuno-therapies, to learn from each patients’ outcomes whether the experts got it right or not, and then to rapidly disseminate the results in time to help the next patient.”
I caught up with Tenenbaum recently at MIT in Cambridge where he was giving a talk — provocatively titled, “How To Beat Cancer.” In it, he argued that often, what are considered to be “incurable” cancer cases may, actually, “be beatable by exploiting biological features unique to each individual’s cancer.” Like others, he suggests, “we’re on the cusp of managing cancer as a chronic disease using new cocktails of targeted therapies much like treatment for HIV.”
He agreed to answer a few more questions. Here, edited and condensed is some of our conversation:
RZ: You talk about a basic problem in cancer care that hinges on patient data. What is the problem?
MT: Every patient experiences this: you face a life or death decision, which often must be made in days. You go out for second opinions and get conflicting recommendations — each doctor knows what they know and they each know different things. You’re thrust into this strange world with no maps, no Zagat’s, no nothing. So no one could tell me: ‘Which treatment is best for me?’ [Part of the problem is that] no one shares data — neither the de-identified data from personal health records, nor the data that drug companies collect during clinical trials – not even the data from the control arms of trials, or from failed trials. The only ones with the incentive and urgency to share the data are cancer patients.
After your cancer recurred and you were enrolled in a clinical trial, you describe a kind of “aha” moment. Can you explain?
In 2003, I entered a cancer vaccine trial. Shortly after I went off the vaccine I had a recurrence. I opted for more surgery and went back on the vaccine, but after six months the vaccine was no longer available. The trial had been halted because, statistically, patients on the vaccine arm were not doing better than those on the control arm. However, the vaccine appeared to help some people – and I was fortunate to be among them, having experienced a particularly strong immune response. The vaccine company had no interest in trying to understand why a few patients, like me, benefitted. This is a big shortcoming with clinical trials based on population statistics…to do science, you really need to figure out why it worked in one person and why it didn’t in another person. Many good drugs have been rejected by failing to do this level of analysis.
How is Cancer Commons unique? There are other certainly other data-sharing, disease specific, patient-driven advocacy groups out there, Patients Like Me, for instance.
We’re patient focused and science based; Our mission is to aggregate and analyze data, to provide patients with the best information — up-to-the-moment, personalized, and actionable to help them make informed decisions…like a Lonely Planet guide to cancer.
Patients have the legal right to their data — the HIPAA law just changed this year and it makes it much easier for patients to get their data in digital form. But beyond that we want to build this consensus knowledge base — what are the molecular subtypes of this cancer and how should each subtype be treated.
Typically, tumors are analyzed with a genomic or panomic panel — you have data, then you have treatments recommended by experts based on trials. You want patients and their doctors to be able to consult this knowledge base, determine their subtype, determine their options or have a different option. The point is, do whatever it is you want, but tell us what you did and how it worked so this becomes a virtuous learning cycle. This way we can continually test the hypotheses of experts and continually refine them. Cancer is not generic. Patients in the same group who were thought to have the same disease respond differently. For instance, the current melanoma model has about 30 actionable subtypes [a few years ago we knew about 3] and this comes from widespread availability of molecular testing.
[An aside: Exhibit A when it comes to the potential of this molecularly personalized diagnostic testing and treatment is the high-profile case of Lukas Wartman, a young doctor diagnosed with Acute Lymphoblastic Leukemia, a cancer of the blood that is highly treatable in children, but often fatal in adults. Doctors discovered that in Wartman's case, a gene called FLT3 was being expressed at a much higher level than normal. So, using a drug-gene interaction database, doctors at the Genome Institute at Washington University "found a drug, Sutent, normally used in kidney cancer that targets a “hyperactive” FLT3 gene." Wartman's cancer went into remission.]
Why do you compare the current state of cancer care to the early days of AIDS?
Genetically, every cancer appears to be unique, and like AIDS, requires a custom cocktail of three or more drugs to treat it, and prevent it from evolving into a resistant form. With thousands of subtypes and tens of thousands of therapy combinations , the current clinical trials system, which was designed to test drugs as monotherapies on homogeneous populations, is unsustainable. There simply aren’t enough patients to populate a randomized trial for each rational drug combination.
For this reason, we’re designing Cancer Commons to support rapid proof of concept studies in small numbers of patients — or even individuals – by connecting them directly with researchers interested in their subtype of cancer. Continue reading →
A new study finds that the luxuries of modern life come at an extremely high cost: a greater chance of becoming obese or developing diabetes.
Researchers report that in lower-income countries, ownership of a household device — including a car, computer or TV — significantly “increased the likelihood of obesity and diabetes.” Specifically, owning these items was “associated with decreased physical activity and increased sitting, dietary energy intake, body mass index and waist circumference.” Of the three “devices,” owning a TV had the strongest association with the bad health outcomes.
In poorer countries, such big-ticket items are clearly less prevalent than in rich countries, however they are fast becoming more ubiquitous. And so, apparently, are the ills associated with sitting around watching TV, typing on a computer and driving.
Here’s more from the news release:
The spread of obesity and type-2 diabetes could become epidemic in low-income countries, as more individuals are able to own higher priced items such as TVs, computers and cars. The findings of an international study, led by Simon Fraser University health sciences professor Scott Lear, are published today in the Canadian Medical Association Journal.
Lear headed an international research team that analyzed data on more than 150,000 adults from 17 countries, ranging from high and middle income to low-income nations.
Researchers, who questioned participants about ownership as well as physical activity and diet, found a 400 per cent increase in obesity and a 250 per cent increase in diabetes among owners of these items in low-income countries.
The study also showed that owning all three devices was associated with a 31 per cent decrease in physical activity, 21 per cent increase in sitting and a 9 cm increase in waist size compared with those who owned no devices. Continue reading →