KNOW YOUR RIGHTS provides easy to understand explanations of legal issues facing patients, and trains readers - patients, spouses, families, friends, medical providers - how to navigate the system.
Saturday, March 2, 2013
Friday, March 1, 2013
supplements - which as this journalist says isn't necessarily bad as long
as you understand the risks and mechanisms involved. Always make sure your
physician knows if you are taking supplements as they can interact with
other drugs and supplements.
PHARMA & HEALTHCARE
Emily Willingham 2/28/2013
There's Nothing Special About Alternative Medicine
I know that a lot of people turn away from industry pharmaceuticals and to
'natural' or 'alternative' meds because 'natural' sounds better for healing
and health than 'industrial' does, and 'alternative' implies a mavericky
nosethumbing at authority. There's a reason Aretha Franklin sang about
feeling like a natural woman, instead of an industrial or artificial or
But here's the thing: Whether the drug you're taking came to you by way of
'Big Pharma' or 'Big-AltMed' or 'Big Street Dealer', if it has an effect,
it's doing that in the same basic way: It interacts with some molecules in
your body and changes the way a process happens. That change is what you
feel, unless you're just enjoying the relative innocuousness of the placebo
effect. No drug varies from this basic framework of activity, regardless of
where it came from. 'Natural' doesn't mean 'my body will know this one
better and it will be safer because they're both Nature'.
Where the difference between 'natural' and industry comes in is that what
you get from regulated drugs, whether synthetic or naturally derived, has
been tested. Once results from simulated lock-and-key fitting of molecules
or case studies hint at possibilities, several levels of testing come next.
The candidate drug goes from testing in a lab dish to rodents and usually
through several stages of clinical (with people) trials. Researchers follow
it every step of the way, often in different research groups, evaluating a
variety of doses in assorted patient populations, tracking side effects and
adverse events and developing a 'safety profile' for the intervention. The
dosages are standardized, and when you get such a medication, you generally
know what you're getting.
It's the rare alt-med intervention that has undergone this level of
evaluation or standardization. Any related scientific studies tend to be
scattered and in search of a hypothesis, and results often contradict each
other. When investigators do conduct trials, the findings are often
disappointing. Echinacea, I'm talking to you.
The alt-med types of interventions tend to come to us instead by way of the
anecdote grapevine or, worse, peddlers of such things who tell you what
problem you have and then try to sell you an unregulated alt-med to solve
it. They've got an industry, too, you see. There are two possible
explanations for people who go this route and claim benefit: The placebo
effect is real, or … well, if the meds are really doing something
therapeutic for you, then they're doing it within exactly the same basic
biological framework as a regulated drug. 'Natural' and 'alternative' are
simply cultural appellations with their attendant cultural meanings,
designations that our physiology doesn't give a rip about.
Yes, research suggests a bias toward favorable findings in industry-funded
studies. There have unquestionably been real tragedies with some
industry-derived drugs. Yet, alt-med also has a muddied track record,
sometimes because of erratic dosing or drug interactions and sometimes
because they redirect a person from life-saving conventional medicine. A
breast cancer specialist once told me that in one year, she'd had four
women come to her with a previously detected breast cancer who'd been
trying alternative meds as treatment — for too long. By the time they got
to her, their cancers had progressed beyond what would have been a
relatively treatable stage.
And then there's the concept of the informed patient. With any federally
approved pharmaceutical–say, bupropion–I can go to the prescribing
information for that drug and read it, in its entirety. There, I will find
details about the standardized studies with this drug and the results. I'll
get long lists of all events that happened to people while they were on
treatment in a study and their frequency. I'll see tables of information
comparing placebo outcomes with those of the drug and data from animal
The prescribing information will tell me how the drug works–if that's
known. It says who shouldn't be taking the drug and why or what they
shouldn't take it with, something we know thanks to those thorough
laboratory and clinical studies. It's all there, the information I need to
make an informed decision about an intervention that will interact with
some molecules in my body, cause a change, and have an effect. And in the
case of bupropion, if the effect fails, regulators tracking post-marketing
reports get the alert and try to find out why.
And that kind of evidence-based data gathering is something that I
generally cannot do with alternative meds, supplements, or other untested
interventions because that information usually does not exist. You've got a
choice between often-not-at-all-tested versus
There's nothing inherently wrong with choosing alternative meds, 'natural'
meds, and supplements if you find that for you, there's a benefit, and
particularly if you can find evidence-based information about what they do.
But it's important to know that if they are having an effect, when it comes
to your body, they're no different from industrial pharmaceuticals. The
meds interact with some molecules and change the way something works,
regardless of what you call them. It's just that with the alt-meds, we
often don't know anything else. By their 'natural', usually untested
nature, they leave us uninformed.
Date: February 20, 2013
The Disrupted and realigned Self: Exploring the narratives of New
Zealanders with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
Bell, Lara Joyce Milka
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) causes
pronounced, debilitating fatigue that is not alleviated by rest, along
with muscle and joint weakness, pain, cognitive difficulties and can
be worsened through mental and physical exertion. However, it is also
without an aetiology, and there is little consensus amongst both
medical and patient spheres as to what CFS/ME actually is. In this
thesis I draw on interviews with people with CFS/ME and participant
observation in a patient-led support group in order to explore the way
in which CFS/ME shaped participants' identities and narratives of the
self. I argue that participants moved through two stages that I call
'The Disrupted Self' and 'The Realigned Self'. Falling ill with CFS/ME
rapidly disrupted participants' understandings of the bodies, their
position within their family and the community, interactions with
doctors, and all the usual markers on which they had previously formed
their self-identities. In this state, I argue that participants and
those with whom they engaged viewed both CFS/ME and my participants as
liminal, 'betwixt and between' (Turner 1969) social roles and
contemporary New Zealand ideals of illness, the individual, and the
'sick person'. As the initial disruption and confusion of falling ill
subsided, however, my participants worked to develop a new secure
self-identity, the 'Realigned Self'. They move into a normalised
long-term liminal state by prioritising their health, adjusting their
expectations of their body, developing their own conception of the
aetiology of CFS/ME and forming a positive narrative of their new
lives. This identity work utilised wider cultural ideals about the
active, responsibilised and authentic self; common to late modern
contemporary life (Beck and Beck-Gernsheim 2001, Desjarlais 1994,
Giddens 1991, Rose 1996). Yet this realignment was often not reflected
in the views of my participants' friends, families and doctors. This
illustrates the diverse perspectives and different degrees of
liminality that exist within experiences and narratives of CFS/ME and
(c) 2013 Victoria University of Wellington
Thursday, February 28, 2013
Take for example cancer medicines. Let's say we want to treat metastatic melanoma – a skin cancer.
The cost of medication alone is $120,000 for four treatments, which might extend life a few months.
* * *
Dr. Wilkes asks the crucial question, "How much are we willing to pay for an extra month or two of life?"
If insurance/Medicare/Medicaid is willing to pay $120,000 to keep a cancer patient alive for a few months, then why would they not be willing to pay $20,000 a year to get a CFS patient back to work with Ampligen? This has been one of the concerns rumored around about why FDA won't approve Ampligen -- because insurance companies don't want to pay the high price for it. As long as it's considered "experimental", they don't have to.
Read more here: http://www.sacbee.com/2013/02/28/5222449/dr-wilkes-high-drug-costs.html#storylink=cpy
Wednesday, February 27, 2013
Tuesday, February 26, 2013
But that's not remotely true. The last time the OECD looked at this (PDF), they found that, adjusted for local purchasing power, America has the highest-paid general practitioners in the world. And our specialists make more than specialists in every other country except the Netherlands. What's even more striking, as the Washington Post's Sarah Kliff observed last week, these highly paid doctors don't buy us more doctors' visits. Canada has about 25 percent more doctors' consultations per capita than we do, and the average rich country has 50 percent more. This doctor compensation gap is hardly the only issue in overpriced American health care—overpriced medical equipment, pharmaceuticals, prescription drugs, and administrative overhead are all problems—but it's a huge deal.
Monday, February 25, 2013
Two of my favorites are Flexjobs.com and Ratracerebellion.com, which carefully screen listings and also post helpful articles and resources for virtual workers. Their job listings range from one-time gigs (such as a data entry project) to salaried, professional positions.
You can also search for virtual jobs on most of the larger job boards, such as Simplyhired.com and Indeed.com, by using their advanced search filters.
To ferret out the most appropriate listings when looking for telecommuting jobs online, combine "telecommuting" or "work from home" with the type of work you want, such as "telemarketing" or "copy editing."