AIDS issues and support

by Deborah Franklin. Patient Power: Making Sure Your Doctor Really Hears You.

by Deborah Franklin
http://www.nytimes.com/2006/08/15/health/15cons.html

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New York Times
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The Consumer
Patient Power: Making Sure Your Doctor Really Hears You

[ illustration ] Christopher Silas Neal

By DEBORAH FRANKLIN
Published: August 15, 2006

It’s one thing to feel like a master of the universe when wearing
a buttoned-down power suit. But how can you negotiate anything —
how can you even contemplate "Getting to Yes," as one
motivational best seller puts it — when standing barefoot in a
paper gown under the fluorescent lights at a hospital or a
medical clinic?

Research shows that although most people claim to want as much
information about their medical conditions and treatments as they
can get, even the most confident are struck dumb — or at least
awkward, anxious and often ineffective — when talking to
doctors.

The power gap often shuts patients down.

"My doctor’s great in most ways," said Katherine Rosenberg-Wohl,
a Harvard-trained lawyer turned playwright who has stood up to
more than her share of glowering judges and corporate stiffs.

"If we need to talk about something important, he waits until
after the exam, after I have my clothes on, and has me come into
his office," she said. "But even that doesn’t help much.

"He’s still the guy with the white lab coat behind the giant
desk. He’s moved on to being David Letterman, and I still feel
like the schlub in the paper dress."

In the last few years, medical schools have started trying to
bridge this gap by teaching students clinical communication
skills — Bedside Manner 101.

As part of earning a medical license, for example, third- or
fourth-year students are now required to face actors playing the
roles of patients with myriad diseases and dispositions.

The students are then tested on how well they interview the
patient, conduct the physical exam and convey the findings to the
patient and to colleagues.  Empathetic skills are considered a
big plus.

The training doesn’t stop after graduation. In March 2005, the
Communication Skills Laboratory at Memorial Sloan-Kettering
Cancer Center began offering a series of three-hour interactive
workshops intended to give hospital oncology residents practice
in "Breaking Bad News," "Discussing Prognosis" and
"Responding to Patient Anger," among other touchy topics.

Still, with all the emphasis on doctor-patient communication,
the patient side has largely been neglected.

Sure, there are plenty of patient "empowerment" Web sites and
books, like "You: The Smart Patient: An Insider’s Handbook for
Getting the Best Treatment," published this year. Written by two
physicians — Michael F. Roizen and Mehmet C. Oz — the book is a
well-written guide, packed with pep talks and tips to help
patients cut through medical jargon, find a good surgeon or
hospital, get a second opinion and
navigate health insurance problems.

But like others in its genre, the book tends to skimp on the
rules of etiquette and body language that can transform a hostile
or misunderstood exchange into a smooth connection. It offers a
checklist of 34 questions you should ask your doctor before
surgery, but it doesn’t provide guidance on how or when to raise
those questions — or even how to get through the list — without
alienating the guy who’s about to carve you up.

Under the time pressure that is part of any medical visit, how
exactly do you respectfully disagree with your doctor and still
get the help you need?

Virginia Teas Gill, a medical sociologist at Illinois State
University, said the number of encounters that require a
negotiation between the doctor and the patient seemed to be on
the rise.

This is not just because of the time and financial squeezes
imposed on every visit by health insurance companies but also
because new therapies and sensitive scans and tests are
permitting diagnosis and treatment for many diseases much earlier
than ever before.  Lumpectomy or mastectomy? Injectable insulin
or a pump? Statins or simply more exercise and less food?

In many cases, Dr. Gill said, when and whether to treat has
become as legitimately debatable as what treatment to use.

Some patients show up to a scheduled appointment with a fistful
of questions, "and that’s fine, that’s very good," Dr. Gill said.

"But," she continued, "to get them answered, write the questions
down beforehand, and say at the outset of the office visit: ‘I’ve
got some questions. When would be the best time for me to ask
them?’ "

That alerts the doctor — who has to keep an eye on the time —
to what the patient’s agenda is, so that the two can prioritize
what to cover and decide whether they’ll need a follow-up
meeting, Dr. Gill said.

Richard Frankel, a medical sociologist at Indiana University who
helped develop a training program that Kaiser Permanente is now
using to teach its doctors to be better listeners, suggests that
medical encounters often go wrong because doctors assume that the
first symptom or concern a patient raises is the only one — or
at least that it’s the most important.

Instead, Dr. Frankel said, studies show that the most important
symptom or worry — a suspicious mole or lump, for example, or
the feeling that life isn’t worth living — is often the third or
fourth item on a patient’s list, blurted out at the very end of
an appointment. This may be because the patient is afraid, the
problem is hard to admit or the patient didn’t understand how
medical exams were typically structured.

Dr. Frankel advises patients to put all the items on the table at
the start of a visit. If the doctor interrupts to focus on the
first problem, say something like: "You know that’s one concern,
but maybe not my most important. Could I give the full list
before we go on so we can prioritize?"

Rather than be offended, most doctors are likely to listen more
attentively, he said.

"Patients always have the right to question or refuse treatment
or tests," Dr. Frankel added. "Anyone worried about offending the
doctor might find it easier to begin such a discussion with
something like: ‘Could you please review the benefits of this
treatment for me again so that I can write them down?  Good. Now,
could we talk about risks, too? O.K, so tell me again why you
think the benefits outweigh the risks in my case?’ "

Patients can improve the quality of their care — and their lives
— by also being straightforward with a doctor, but as specific
as possible.

"Instead of asking, ‘Is it important that I start the
chemotherapy next week?’ don’t be afraid to tell the doctor: ‘My
cousin’s wedding is next week, and I’d like to go. Would it be
O.K. to start the chemo after that?’ " suggested Carma Bylund, a
behavioral scientist in the psychiatry department at
Sloan-Kettering who helped create the hospital’s communication
skills program for students.

Bringing a trusted friend or family member to the exam can also
help make sure that delicate questions are asked and answered.

Preliminary research suggests that the Internet is already
transforming many medical encounters, Dr.  Bylund said. Some
patients now come armed with sheaves of journal articles and
printouts, and demands for specific treatment.

However, she cautioned, just because patients now have access to
much of the same information that doctors do doesn’t mean they
have the expertise or experience to weigh that information.

Doctors don’t like confrontation any more than patients do; they
may give in to a patient’s request if it is made in an assertive
manner. In a study under review for publication, Dr. Bylund found
that patients who persistently asked for a specific treatment or
test, based on Internet research, were more likely to get it than
patients who came in with a vague list of symptoms, or who were
more deferential to the doctor.

But be careful, she warned. Anyone who treats a doctor as a
dispensary instead of a trusted medical guide loses the
advantages of the physician’s experience.

Negotiating to win, in this case, may get you what you want, but
not what you need.
http://www.nytimes.com/2006/08/15/health/15cons.html
by Deborah Franklin

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by Dave Holmes. Deconstructing the evidence-based discourse in health sciences: truth, power and fascism

Damn those microfascists demanding evidence-based medicine!
http://scienceblogs.com/insolence/2006/08/damn_those_microfascists_de…

by Dave Holmes
Deconstructing the evidence-based discourse in health sciences:
truth, power and fascism
http://www.ucl.ac.uk/Pharmacology/dc-bits/holmes-deconstruction-ebhc-…

pdf viewer
http://view.samurajdata.se

Comments (2)

Re: Is my girlfriends urine flow normal?

"ferrari" <ferraribos…@yahoo.com> wrote in message

> My question is this, when she pees it is weak and she stops and starts
> is this a sign of a problem a longlasting infection?

http://www.health.state.ny.us/nysdoh/communicable_diseases/en/gonor.htm

Comment (1)

STD propaganda…

To be fair, San Francisco is littered with propaganda posters
encouraging safe sex and testing for STDs, but some parts of
town seem to contain more of them than others.

For example, the Columbus/Washington Square area seems to be
devoid of them, while the Castro Street area is littered with
them.  As I arrive at the Castro Muni station, I walk by
dozens of posters promoting some AIDS walk, HIV testing,
encouraging those with HIV to restrict themselves to other
HIV+ individuals as parters, and lately they have been going
on about syphilis.  The new poster today featured a really
cute high school boy telling us how he gets tested for syph
every 3 weeks, not mentioning how in that time he could
probably infect several hundred others.

Since all things are equal in ultra-left San Francisco, why
are they wasting a disproportionate amount of propaganda
resources on a particular group that can’t possibly suffer a
greater rate of HIV and other STD infections than the general
population?

Comment (1)

Get Your X-Rays!!!

Listen up everybody, I figured out how diseases work.  The doctors are
just cultivating super-bugs with anti-biotics, and the real buisness is
getting your x-rays.  We all have disease growing inside of us, and
entities in our bodies.  And for some of us they grow into life
threatening cancers that can’t be cured with anti-biotics.  It isn’t
smoking that is causing cancer, but cigarette smoking and drug use
helps spread disease around, and smoking isn’t good for our lungs.
Oxygen is how our body gets all of our energy that helps us fight
disease.  But once you catch a bad case of the flu, and the
anti-biotics don’t work, your pipes start loosening up and food goes
down the wrong hole.  You start coughing up big chunks of stuff, and
throwing up every morning.  If you get an x-ray you can see all of the
desease growing in your chest and you can get radiation to clear out
your whole system.  And sometimes you get cancer in other areas too,
but I don’t know how to check for it.

They Call It Cancer Because You Know You Have It When You Are Sick In
July!!!

Comment (1)

Male circumcision 'promising' in fight against HIV

http://www.mg.co.za/articlePage.aspx?articleid=281129&area=/breaking_…

Male circumcision ‘promising’ in fight against HIV
Beth Duff-Brown | Toronto, Canada
18 August 2006 08:35
With people dying of Aids in far greater numbers than those who have
access to treatment and prevention, male circumcision could be a
promising tool in the prevention of transmitting HIV, scientists told
the International Aids Conference in Toronto, Canada, on Thursday.
Others cautioned that the procedure could give men a false sense of
security and may not protect women from contracting the disease.
Former United States president Bill Clinton said earlier in the week
that while two clinical trials under way in Africa were promising, it
would be a "headache" to implement, due to the medical and religious
debates surrounding the surgical removal of the foreskin from the
penis.
In June, the US National Institutes of Health announced that, following
an interim review, two ongoing trials in Uganda and Kenya should
continue examining the link between male circumcision and the risk of
getting the virus that 40-million people are living with today.
The virulent virus — for which scientists have yet to develop a
vaccine — has killed an estimated 25-million people since the first
cases of HIV were reported 25 years ago.
Between 2003 and 2005, the number of people in low- and middle-income
countries on anti-retroviral drugs increased by 450 000 each year. Yet
over the same period, the number of people who became infected with HIV
averaged more than four million a year.
Data from the trials, scheduled to conclude next year, could validate
findings reported in July 2005 from a South African trial, known as the
Orange Farm intervention trial, which showed a reduction of 60% in the
risk of acquiring HIV among circumcised men.
"The results of the two ongoing trials will help clarify the
relationship between male circumcision and risk of HIV in differing
contexts, which is key to determining the reproducibility and
application of the Orange Farm findings," said Dr Kevin de Cock, head
of the World Health Organisation’s HIV/Aids programme.
Clinton, whose foundation is heavily involved in Aids programmes, told
reporters that while current studies indicate circumcision may be
effective, it could lead to a whole new set of personal debate and
medical problems.
"I think for men the most promise is in the circumcision studies,"
Clinton said earlier in the week when asked about the current buzz over
promising HIV-prevention tools, such as microbicides for women. "But
it’s going to be a total headache trying to help them."
Catherine Hankins, chief scientific adviser for the United Nations
Joint Programme on HIV/Aids, said researchers are excited about the
potential use of circumcision as a tool to fight HIV, but cautioned
that it could give men a false sense of security and may not protect
women from contracting the infection.
"Even if further trials show a lower risk of HIV infection in
circumcised men, male circumcision will not provide complete protection
against HIV infection," she said. "Circumcised men can still contract
HIV and pass it to their partners. If male circumcision is proven to be
effective, it must be considered as just one element of a comprehensive
HIV-prevention package."
In Africa, about 70% of men are circumcised at birth or in tribal
ceremonies. The soaring HIV infection rates in sub-Saharan Africa are
found in communities that do not practice circumcision, such as
Swaziland, which has the world’s highest HIV infection rate of 33%.
Studies show that HIV infection rates drop dramatically in West Africa
and other parts of the continent where circumcision is routinely
performed.
Hankins said that tests have shown that the male foreskin is rich in
blood cells that are favoured targets of HIV. — Sapa-AP

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Lewis Wraps IAC and Raps SA and other govts

http://news.bbc.co.uk/2/hi/africa/5265432.stm

Stephen Lewis
The government has a lot to atone for. I’m of the opinion that they
can never achieve redemption

South Africa Aids policy attacked
The United Nations special envoy for Aids in Africa has closed a major
conference on the disease with a sharp critique of South Africa’s
government.

Speaking at the end of the week-long gathering in Toronto, Canada,
Stephen Lewis said South Africa promoted a "lunatic fringe" attitude
to HIV/Aids.

Mr Lewis described the government as "obtuse, dilatory and negligent
about rolling out treatment".

A South African delegate reportedly hit back over Mr Lewis’ comments.

Health ministry official Sibani Mngadi told the AFP news agency that
Mr Lewis had a "vendetta" against South Africa.

Earlier another keynote speaker said South Africa’s health minister
should resign because she had minimised the role of anti-retroviral
drugs.

Manto Tshabalala-Msimang has strongly defended her approach to
fighting HIV and Aids, saying that building up the immune system is of
critical importance.

She said this week she wanted to give citizens choices, including
traditional treatments like garlic, lemons and beetroots, instead of
championing anti-retroviral drugs.

South Africa’s governing ANC party has said the government approach to
the disease was "responsible and integrated".

Harsh words

The International Aids Conference began in Toronto earlier this week
with high hopes.

Microsoft founder and philanthropist Bill Gates made the opening
remarks, and spoke optimistically of the potential of male
circumcision and microbicides to reduce levels of HIV infection.

Hours before Mr Lewis spoke on Friday, 44 activists from South
Africa’s main Aids lobby group were arrested while protesting against
Ms Tshabalala-Msimang’s policies.

The lobby group, the Treatment Action Campaign (TAC), had said it
would announce plans on Friday "to make sure the health minister is
sacked tomorrow".

Mr Lewis, who says he is "persona non grata" in South Africa as a
result of falling out with the health minister, criticised the arrest
of the group’s members.

"It really is distressing when the coercive apparatus of the state is
brought against the most principled members of society," he said.

‘Pavlovian betrayal’

The BBC’s Peter Greste, in Johannesburg, says Aids activists in South
Africa will applaud Mr Lewis’ comments.

He pulled few punches in a speech that drew loud cheers from the
Toronto audience.

South African Health Minister Manto Tshabalala-Msimang
Tshabalala-Msimang has provoked fierce opposition at home
South Africa’s Aids policy is "more worthy of a lunatic fringe than of
a concerned and compassionate state," he said.

He derided the government’s policies as "wrong, immoral [and]
indefensible".

Up to 800 people a day die of Aids in South Africa, Mr Lewis said.

"The government has a lot to atone for. I’m of the opinion that they
can never achieve redemption."

Mr Lewis also reserved some scorn for the G8 group of leading
industrialised nations, who he said were undermining their own
promises made at Gleneagles in 2005 to fight Aids, TB and malaria in
Africa.

Funds were running dangerously low, Mr Lewis said, accusing the G8 of
a "Pavlovian betrayal" of poorer southern nations.

No Comments

Re: Life changing nutrient—

[Pardon me if you've seen this before, but I haven't
seen a reply from rhonda yet, so I'm reposting
this to a different set of newsgroups than used before
to make sure she sees it.  For the first and last time,
I've included misc.health.aids, which is one of the
newsgroups where rhonda posted the original message.
I set the followup to misc.health.alternative, so
check there if you want to see her reply.]

rhonda radcliff wrote:

> I have personally heard many
> amazing testimonials of people being helped with things from cancer to
> diabetes, to constipation, to allergies, depression to autism. All
> these happened in days to weeks.
> Original Limu has many nutrients but the key nutrient is called
> fucoidan. There have been over 650 research studies on fucoidan, you
> can go to www.pubmed.gov and type in fucoidan and see for yourself or

Yes, here’s one!  What do you have to say
about this?  Doesn’t this mean it would be
unwise to take fucoidan if you have a cancer
that hasn’t metastasized yet?

Exp Cell Res 1998 Mar 15;239(2):301-10
Sulfated glycosaminoglycans enhance tumor cell invasion
in vitro by stimulating plasminogen activation.

Metastasizing tumor cells invade host tissues by degrading
extracellular matrix constituents. We report here that the
highly sulfated glycosaminoglycans, heparin and heparan
sulfate, as well as the sulfated polysaccharide, fucoidan,
significantly enhanced tumor cell invasion in vitro into
fibrin, the basement membrane extract, Matrigel, or through
a basement membrane-like extracellular matrix. The
enhancement of tumor cell invasion was due to a stimulation
of the proteolytic cascade of plasminogen activation since
the effect required plasminogen activation and was
abolished by inhibitors of urokinase-type plasminogen
activator (uPA) or plasmin. Sulfated polysaccharides
enhanced five reactions of tumor-cell initiated plasminogen
activation in a dose-dependent manner. They amplified
plasminogen activation in culture supernatants up to 70-fold
by stimulating (i) pro-uPA activation by plasmin and
(ii) plasminogen activation by uPA. (iii) In addition,
sulfated polysaccharides partially protected plasmin
from inactivation by alpha 2-antiplasmin. Sulfated
polysaccharides also stimulated tumor-cell associated
plasminogen activation, e.g., (iv) cell surface pro-uPA
activation by plasmin and (v) plasminogen activation by
cell surface uPA. These results suggest that sulfated
glycosaminoglycans liberated by tumor-cell mediated
extracellular matrix degradation in vivo might amplify
pericellular plasminogen activation and locally enhance
tumor cell invasion in a positive feedback manner.

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HIV: Mechanism of transmission and development to AIDS

Please correct me if I am wrong.

1) Virus enters the body
2) Looks for T4 cells
3) Doesn’t find them (in healthy bodies) die off quickly
4) finds them (in unhealthy bodies) and replicates.
4a) Is t4 the immune response to HIV?

5) Virus is at low levels
6) starts replicating again slowly-body seemingly has no response to it
this time.
6a) replication is at the expense of t4 cells which the body calls up
in response?

My question in all of this is simple. Is T4 cells the auto response for
HIV?
If it isn’t how does T4 get decimated by HIV?

Comments (23)

'Complex Pharmaceutical Needs'

I was walking down Castro Street yesterday (transferring to another bus,
not patronizing the Crisco Disco), and I walked by a pharmacy whose sign
boasted it served customers with "complex pharmaceutical needs."  I
wonder what kind of complex pharmaceutical needs residents of Castro
Street might have?  I don’t see that slogan at Walgreens, Rite-Aid, or
any other pharmacy I typically patronize, so what kind of medical
conditions do Castro Street residents suffer from that requires a
specialized pharmacy?

No Comments