May 6th, 2008 by Dr. Val Jones in Patient Interviews
1 Comment »
Cameron J. Mitchell was diagnosed with a glioblastoma multiforme (or GBM, an aggressive form of brain cancer) over four years ago. The prognosis for this tumor is usually grim, as most people succumb to it within 4 to 18 months of diagnosis. However, Cameron got involved in a clinical trial for a promising new therapy and has beaten the odds. Since Revolution Health was founded partly in response to Dan Case’s battle with a GBM (and I had the opportunity to participate in the Race for Hope to benefit Accelerate Brain Cancer Cure last weekend), I thought it would be great to highlight Cameron’s story. Cameron also happens to be a close friend of one of our staff at Revolution Health.
Dr. Val: Tell me about how you were diagnosed with a brain tumor. What symptoms did you have? What led up to the diagnosis?
First of all as you can imagine getting the news is like being hit by a truck. You think, “this just can’t be happening to me.” And of course the “why me?” scenario comes into play.
My initial diagnosis came after having a bout of seizures, both grand mal and partial. After a series of tests and procedures they determined that the ongoing problem was the result of a brain tumor. The typical protocol requires 6 weeks of radiation along with oral chemotherapy followed up with a visit to your oncologist to determine a plan of action.
Dr. Val: How did you find out about the Duke clinical trial?
Being that the “plan of action” did not have a very favorable outlook I asked my oncologist, “What would you do in this case?” He suggested I contact the Duke Brain Tumor Center. He actually made the initial call. Later that night I received a call from Dr. Henry Friedman saying that they could help. By the end of the week I received a call from Dr. John Sampson telling me that he was working on a specific clinical trial. As long as I could meet some prerequisites I would be eligible to participate. A lot of thought and pondering goes into that decision: “Is it the right one?” “What if it does not work?” But at that point nothing else had been proven, so my wife and I decided that I have nothing to lose to give it a chance.
Dr. Val: What have the treatments been like for you? Do you have any advice for other patients with GBM?
The treatments are an ongoing, once a month procedure, and I travel from Michigan to North Carolina for them. So it definitely is a huge sacrifice but at for very worthy cause. Having MRIs every two months can create a lot of anxiety not knowing if the tumor is back or not.
The four main pieces of advice I could give to new GBM patients are: 1) Get as much as information as you can. Ask lots of questions. 2) Keep a positive attitude (SO IMPORTANT). 3) Keep a strong group of supporters like family, friends and especially spouse. 4) Remember that this is NOT your fault.
There are a lot of very good sites out there on the internet for advice. But one thing to keep in mind, some of them are a little outdated. The better sites allow you to ask questions.
Dr. Val: What advice do you have for family members and loved ones of those diagnosed with a GBM?
Family members must be informed about what is going on. Under absolutely no circumstances should they be left out in the cold. Most patients find out early that their spouse has at least as much (if not more) difficulty dealing with this disease as the patient.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
May 5th, 2008 by Dr. Val Jones in Uncategorized
No Comments »
I’m excited to be attending The Big Sleep Show in Chicago this Friday and Saturday, as Revolution Health is the Title Sponsor of the expo. I’ll be perched in a special sponsor booth, giving out frozen yogurt – so to all three of my Chicago-based blog fans: please meet me there!
To prepare for the event, I interviewed Reid Blank, Chief Executive of the Big Sleep Show, about sleep debt in America and how it impacts physicians. Enjoy the audio podcast or read his responses below.
Dr. Val: A recent poll at Revolution Health indicated that our viewers’ #1 health concern was “getting enough sleep.” Tell me a little bit about how America is doing with sleep debt, and how we compare to other countries.
Reid: As far as I can tell, America is not getting any better where sleep debt is concerned. Most Americans fall short of their ideal sleep requirements by an hour to an hour and a half per night. We have too much going on in our lives and sleep is the easiest thing to exclude. This is probably why the energy drink business has taken off like crazy – it’s now a 3.5 billion dollar industry – and it’s really growing in popularity among 18-23 year-olds. So we’re all looking for ways to solve our sleep debt.
In terms of other countries, there is not a lot of research comparing sleep debt between them, but it does seem that Asians are as sleep deprived as we are. In Europe they may be a little less so.
Dr. Val: There has been a lot of debate about how much sleep is enough. What’s your take on that?
Reid: It’s a little bit obvious, but basically you need as much sleep as feels right for you. On average we need about seven and a half to eight hours, but sleep needs follow a bell curve, so some people can get by on less than others.
Dr. Val: Are there any tests to help people figure out if they’re getting enough sleep?
Reid: Yes, the Epworth Sleepiness Scale is a good sleep debt questionnaire. Actually, at the Big Sleep Show we’ll be debuting the Glidewell Rapid Sleep Screener which is a web-based tool that allows people to find out (within a couple of minutes) whether or not they’re at risk for a sleep disorder. The National Sleep Foundation and the National Center on Sleep Disorders Research also have great websites where people can determine their level of sleep deprivation or whether or not they have a sleep disorder.
Dr. Val: I see that Google has special nap pods available for their employees. Do you think this is a good idea?
Reid: Absolutely. Napping is a great way to address sleep problems and can help to counter fatigue. Every day from 3-5pm we all have a “circadian slump” which is why there are siestas in Latin American cultures and “high tea” (the caffeine in the tea probably counter acts sleepiness) in England.
The National Sleep Foundation sponsored a poll recently and found that as many as 30% of employers were open to the idea of an employee nap program, but only 15% had any appropriate facilities for it. There’s still a bit of a disconnect between wanting to offer employee naps and being able to implement such a program.
Dr. Val: I’d like to see napping programs implemented in surgical residencies. Ha, ha.
Reid: Don’t laugh. At Alertness Solutions we worked with the Veterans Administration hospitals to conduct some pilot programs to put napping in the hospitals. As far as I know initial trials were very successful and they’re working on implementing napping now.
Dr. Val: As a physician, I was sleep deprived through much of my residency training. Some studies suggest that sleepy doctors are not a threat to patients. Do you agree with that?
Reid: Wow, I’m not aware of those studies but I suppose there’s always a counter argument. We’re all human beings and we operate on the same basic principles. We’re not biologically geared to stay up all night and sleep during the day. Shift work makes you tired and makes you prone to errors and accidents.
Some folks with large egos may feel that they’re resistant to fatigue. It’s like “The Right Stuff” syndrome where pilots and astronauts are beyond fatigue. Surgeons and doctors may share that attitude as well.
Dr. Val: Right, surgeons don’t experience the “circadian slump.” What is the Big Sleep Show and how will attendees benefit?
Reid: The Big Sleep Show is the first ever consumer health expo that’s solely devoted to sleep and alertness. It addresses a gap between the education that’s available and the access that consumers have to it. The show puts consumers face-to-face with experts both on the healthcare side and the industry side. They can attend dozens of workshops on a variety of topics such as how napping improves brain function or how you can be prettier by sleeping better.
Dr. Val: If people can’t attend the conference, how can they best educate themselves about their sleep concerns?
Reid: The nice thing is that we are debuting in Chicago but the plan is to create a model show that we can offer in other major cities across the country. We’ve been getting email from people around the country (and even Canada) who want to know how to host a sleep show in their own city. There are a lot of resources on our website, and I also highly recommend Revolution Health, The National Sleep Foundation and the National Center on Sleep Disorders Research.
*Listen to Dr. Val and Reid Blank discuss sleep*
*Join Revolution Health’s “Can’t Sleep Cafe” with neurologist Dr. Steve Poceta*
This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
April 30th, 2008 by Dr. Val Jones in Announcements, Quackery Exposed
No Comments »
Sorry for the late notice, folks… but Revolution Health’s sister site, HealthTalk, is hosting a call-in podcast with Dr. Stephen Barrett, founder of Quackwatch.org, TONIGHT. The name of the show is, “One Man’s Mission To Expose Medical Quackery” and Dr. Barrett is a polarizing figure for sure. Love him or hate him, it should be a great interview. To join, go to this page.
You can send in your questions in advance, listen to the call live (8:30pm EDT, Wednesday, April 30th), or listen to the podcast post-show. Hope to meet you there!
Here are a few of my recent posts about how to discern truth from error in medicine:
Good Science Makes Bad Television (And Other Truths)
The Three Pillars of Trustworthy Science: Credibility, Plausibility, and Reproducibility
Plausibility, Homeopathy, and Science Fiction
False Positive Research Findings: The Deck Is Stacked
Reproducibility: The Final Pillar of Trustworthy Science
The Rise of Snake Oil In America
The Placebo Effect: Whatever Works?This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
April 23rd, 2008 by Dr. Val Jones in Expert Interviews, News
5 Comments »
Imagine that you were diagnosed with cancer, and were told that you had one of two treatment options: 1) you could receive a one time dose of a medicine that will go directly to the tumor cells and kill them only, having very few noticeable side effects or 2) you could undergo months of exposure to toxic chemicals that will kill the tumor cells and many other healthy cells as well, resulting in hair loss, bowel damage, nausea, and vomiting. Which would you choose?
Unfortunately, choice number one may no longer be an option for lymphoma patients due to government funding cutbacks, and the development of such treatments for other cancers is in jeopardy as well.
Radioimmunotherapy (RIT) is a relatively new approach to cancer treatment, new enough that the government is having difficulty categorizing it correctly. (RIT involves targeting cancer cells with special antibodies that carry tiny, lethal radiation doses to individual cells.) In fact, drugs like Bexxar and Zevalin have been misclassified by CMS as “supplies” rather than medications, and so the reimbursement allowed doesn’t come close to covering the cost of the therapy. Although there are many new targeted therapies under development, investors are worried that the drugs will never be used in patient care because the country’s number one payer (Medicare) is unwilling to cover their costs. Other health insurers often follow the government’s lead when it comes to treatment coverage policies. If no one will pay for the cost of the drug, then ultimately no one can afford to make it available.
Similar funding problems are beginning to limit access to diagnostic nuclear imaging modalities like PET scans, PET CT, cardiac SPECT scans, and bone scans. Reimbursement levels that do not cover the cost of the imaging drugs means that facilities cannot afford to offer these diagnostic technologies to patients, and centers are slowly reducing the number of tests they offer. Nuclear imaging studies are often critical in diagnosing heart problems, infections, and early detection of cancer. Senator Arlen Specter had his cancer recurrence diagnosed at the very earliest stages thanks to PET scanning technology. Early treatment offers him the best possible prognosis, but he is in a dwindling group of people who have access to this imaging modality.
I spoke with Dr. Peter Conti, professor of radiology at the University of Southern California, and former president of the Society of Nuclear Medicine, from Spain this week – as he is attending the 6th International Workshop for Nuclear Oncology, a lymphoma conference where the crisis in reimbursement for targeted cancer therapies is being discussed, along with exciting advances in treating patients with lymphoma. The two different RIT drugs (Bexxar and Zevalin) for non-Hodgkin’s lymphoma are in jeopardy of not being available to Medicare patients due to proposed cuts in reimbursement. Recent plans to cut payment for these drugs have been halted by a temporary moratorium from Senator Kennedy. Here’s what Dr. Conti had to say:
“Let’s face it, lymphoma is not as high profile as other cancers such as breast, colon, or prostate. However, we’ve found a fantastic treatment option for it, and there are implications for the more common cancers, but that treatment option is being denied to lymphoma patients because facilities cannot cover the costs of offering it. I’d like the entire cancer community to rise up in support of lymphoma patients so that Congress will tell Medicare to fix the funding problem. If this doesn’t happen, it’s only a matter of time until novel RIT treatments are no longer an option and we’ll be stuck in the dark ages of non-specific chemotherapy and radiation treatments that harm the good cells with the bad. Personalized, targeted therapy is the future – and we’re missing the opportunity to further develop these novel therapies due to budget cuts.”
I reached out to the current president of the Society of Nuclear Medicine, Dr. Alexander J. McEwan, for comment:
“Molecular imaging offers critical tools for the early detection, diagnosis and treatment of many life-threatening diseases, including cancer. SNM recommends that CMS establishes appropriate reimbursement for all forms of nuclear and molecular imaging and radioisotope therapies at levels that allow optimum access and improved outcomes for all patients.”
Denial of RIT to lymphoma patients may be the first sign of a new trend limiting the development of high tech therapeutic innovations. Will America’s research engine run out of gas before we figure out how to treat cancer without side effects? Should we buy one more tank to get us over the crest of the targeted therapy hill? This is a judgment call that affects all of us at a time of great need and limited resources. What’s your take?This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
April 22nd, 2008 by Dr. Val Jones in Medblogger Shout Outs
5 Comments »
Welcome to Grand Rounds 4.31, Dr. Val’s edition of the weekly rotating carnival of the best of the medical blogosphere. There are many approaches to summarizing submissions to Grand Rounds, and I have chosen one that has never (to my knowledge) been used before.
That’s right – I’m taking my inspiration from the limbic system, and have organized the posts according to the dominant emotion they elicit from readers. And because Dr. Val was one of those annoying medical students who brought 10 different colored highlighters to study class, I will also label some of the posts with the following tagging system (in brackets) to offer advanced readers an additional nuance:
[:-)] = A post that demonstrates literary excellence
[{] = Early bird – an author who got his/her submission in early, which is really convenient for the host(ess)
[:-/] = Naughty – an author who forgot to submit an entry to Grand Rounds but who was included nonetheless
So without further ado, here’s the Grand Rounds that will make you laugh, cry, stomp your feet, and become enlightened in the process.
Amusing
The fun begins with the Clinical Cases and Images Blog, featuring a hilarious blogger “sweat shop” video to illustrate the heart attack-inducing stress that bloggers face on a daily basis. His post is called: “Death by blogging?”
Dr. Rob Lamberts from Musings of a Distractible Mind has some parenting tips (including pole vaulting avoidance strategies) in his post called “The Sins of the Father.”
Happy, the Happy Hospitalist offers his perspective of what it would mean if physician satisfaction surveys (rather than patient satisfaction surveys) mattered.
Allen Roberts of GruntDoc describes how one misspoken word can result in unexpected innuendo.
[:-/] Dr. Wes predicts an upcoming hospital “performance Olympics” after one patient receives a record fast, door-to-balloon cardiac intervention.
Touching
[:-)] Laurie Edwards of A Chronic Dose tells the touching and amusing story of how one sick young girl was ostracized at summer camp – and how new camps designed for chronically ill children are revolutionizing the camping experience. Her post is called, “Summer Camp: Sick Style.”
Barbara Kivowitz, from In Sickness and in Health, describes a husband who knows just the right thing to say in a stressful time. Her post is called “Mars/Venus Who Cares?”
Lisa Emrich, from Brass and Ivory describes what it’s like to experience a relapse of Multiple Sclerosis and an MRI to evaluate the progression of her disease. Her post is called “Surfing the Magnetic Tube.”
Dr. A from Doctor Anonymous wonders if peace and contentment come from accepting one’s lot in life. His post is called, “With Age Comes Happiness?”
Infuriating
ER Nursey relays the tragic story of a baby that died of a preventable illness. His mom decided not to vaccinate him against pertussis and was trying to treat the infection with “natural methods.” Her post is entitled simply: “Whooping Cough.”
[:-/] Abel Pharmboy at Terra Sigillata explains that since 1994, dietary supplements cannot be removed from the market until there is evidence for lack of safety, meaning that consumers must first be harmed before FDA is authorized to intervene. His post is called, “Must People Die Before DSHEA is Repealed?”
[:-/] David Gorski at Science Based Medicine takes a critical look at the claims of a popular alternative medicine practice: colon cleansing. His post is called, “Would You Like a Liver Flush with that Colon Cleanse?”
[:-)] John Crippen from NHS Blog Doctor explores the difference between a young doctor’s “gallows humor” and a senior physician’s deep and abiding concern for patients in this reflection on death certificates in Britain. The post is called “Ash Cash.”
A Canadian Medical Student and author of Vitum Medicinus tells the story of how a patient asked her doctor a question that she already knew the answer to, just to see if he was current in his knowledge of recent health news. The post is “What Trickery Is This?”
David Williams of The Health Business Blog points out the fallacies inherent in one writer’s attempt to vilify the health insurance industry. His post is called, “There is no Health Insurance Mafia.”
Enlightening
This large group of posts may be further organized by the topic of enlightenment. First up we have practical health tips.
Health Tips
[{] We begin this section with an anonymous psychiatrist blogger at How to Cope with Pain. She has captured my little Rehabilitation Medicine heart with her three-part series describing office ergonomics, therapeutic exercises, and how to avoid computer-induced postural strain. Her very practical post (that will be very useful to you readers) is called: “How to Sit at Your Computer to Avoid Pain.”
Ramona Bates at Suture for a Living explains what to do if you’re bitten by a cat – she does a wonderful job describing the treatment options and possible infections that can result. Her post is aptly named, “Cat Bites.”
Paul Auerbach at Medicine for the Outdoors teaches us everything we need to know about preventing and treating foot blisters caused by hiking/walking. His post has the shortest name of this Grand Rounds: “Blisters.”
Jeff Benabio at The Derm Blog offers a comprehensive analysis of the dangers of tanning salons with some tips for safe sun exposure. His post is called, “Is The Tanning Industry The New Big Tobacco?”
Nancy Brown at Teen Health 411 warns that outdoor tanning is also not safe. Her post is called “Sun Safety.”
Jolie Bookspan, The Fitness Fixer, tells the story of how a woman living in the Yukon learned that “doing exercises” doesn’t heal an injury if you go back to bad movement habits the rest of the day. The post is called, “Fixing Herniated Disk and Reclaiming Active Life.”
[:-/] TBTAM at The Blog That Ate Manhattan has practical tips for patients preparing for a new patient visit with an Ob/Gyn. Her post is called: “TBTAM’s Healthcare Team Tips for New Players.”
[:-/] Dr. David at Musings of a Pediatric Oncologist teaches us that HPV can predispose people to oral and throat cancers as well as cervical cancer. All the more reason to vaccinate boys as well as girls. His post: “HPV and Cancer Revisited.”
Kenneth Trofatter, at Fruit of the Womb offers a detailed analysis of when it might be appropriate to use Fondaparinux to reduce the risk of clotting in pregnant women. His post: “Use of Fondaparinux During Pregnancy.”
Joshua Schwimmer at Tech Medicine offers some tips for doctors. Practice makes perfect, and this new teaching mannequin has some nifty bells and whistles. His post is: “The iStan Medical Mannequin: it Sweats, Bleeds, and Breathes.”
More healthcare for dummies is offered by Jan Gurley of Doc Gurley Blog. Her post is called: “Playing Surgeon.”
Next up, a series of posts about Web 2.0 principles.
Web 2.0
Allergy Notes describes a small study in the BMJ demonstrating that text message reminders can improve compliance with asthma medication regimens. The post is called, “Text Messaging Can Help Young People Manage Asthma.”
[{] Sam Solomon of Canadian Medicine describes a new trend in Canadian medical research – using blog tools to analyze public opinion. His post is called, “Putting Clinical Depression under the Microscope and on the Blogosphere.”
Mic Agbayani at GeekyDoc, suggests that patient privacy is violated by YouTube when a video is posted of healthcare professionals laughing during a surgical procedure to remove a foreign body from the rectum. His post is called, “Patient privacy and YouTube.”
[:-/] Richard Reece at Med Innovation Blog explains that doctors get a bad rap when it comes to EMRs and IT in general. See his post: “Bad Rap on Physician IT Use Not Deserved.”
[:-/] A counter-point argument for the mandatory use of EMRs (at his hospital) is made by John Halamka at Geek Doctor. His post is called: “Accelerating Electronic Health Record Adoption.”
Health Policy and Medical Ethics
This is our largest and final subgroup of enlightening posts. You’ll find some great reasoning here (and Dr. Val is partial to reason).
First up we have the inimitable Sandy Szwarc of Junk Food Science. She takes a close look at the numbers and shows that the current Student Nutrition Policy Initiative is failing to stem the tide of childhood obesity and poor eating habits. Her post is called, “JFS Special Report: Major Findings on Childhood Obesity Programs.”
Amy Tenderich at Diabetes Mine has a terrific post about the need to revise the Americans With Disabilities Act. As a physiatrist, I cheer her on. Her post: “Disability and Diabetes Revisited.”
[:-/] Dr. Rich at The Covert Rationing Blog explains the financial incentives behind Medicare’s new “never event” initiative and how it will impact care for the elderly, obese, and those with bleeding disorders. His post is called, “Never Events? Never Mind.”
Bob Coffield at Health Care Law Blog writes that some argue that preventing disease does not decrease health costs. Bob disagrees, but isn’t sure if he can prove his case. His post: “Is prevention cheaper than treatment?”
[:-/] #1 Dinosaur of Musings of a Dinosaur explains that reducing expenditures in a patient’s last year of life requires perfect foresight into his or her life expectancy. His post: “End of Life Care Costs: A Logical Fallacy.”
Maurice Bernstein at the Bioethics Discussion Blog argues that, over the past 50 years, the ethics of medicine has changed more than any other aspect of it. Technological advances and the advent of medical consumerism have changed the way medicine is practiced. His post is: “50 Years of Medical Practice: Changes, Benefits, Costs, Dilemmas.”
Louise Norris at the Colorado Health Insurance Insider would rather be treated by a salaried physician who has no incentive to order additional and perhaps unnecessary tests and treatments. Her post: “More Care Does Not Mean Better Care.”
[:-/] Charlie Baker at Let’s Talk Healthcare offers a nice summary of a recent NEJM article about how to cut healthcare costs in the US. See his post: “Partners HealthCare Weighs In On Health Care Costs.”
[:-/] Kevin Pho at KevinMD has a series of posts called “My Take.” This one on legitimate malpractice lawsuits and anti-aging is very interesting.
Kerri Morrone at Six Until Me raises her voice for Type 1 Diabetes awareness. Her post: “My Raised Voice.”
[{] Ian Furst from Wait Time and Delayed Care wonders if visual cues could be developed to reduce patient wait times. His post is called, “Clutter of the Brain.”
And finally, an anonymous medical student at a blog called From Medskool argues that there is no primary care shortage, that incomes are fine, and that PCPs won’t abandon Medicare. Anyone wish to debate this with him? His post: “Four Myths of the Primary Care Crisis.”
***
And here’s a special message from next week’s Grand Rounds hostess, Jan Gurley:
Grand Rounds in medicine often means a morgue-cold auditorium, a sea of starched white coats, and staccato squeaks from irritable chairs. Doc Gurley is hosting April 29th’s Grand Rounds of the medical blogosphere with a more WWF-type approach: Grand Rounds Smack Down Week. Do you want to take on a behemoth topic with some chest-beating frenzy? Or just climb into the Internet ring wearing your most outrageous verbal-costume? Here’s your chance to go for it.
Thanks to all who sent me submissions, and many thanks to Nick Genes our fearless leader. Let me know how this Grand Rounds made you FEEL!This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
