July 19, 2004
Meet Jerry Mayfield.
figures he has had two lucky breaks. The first was after he was
diagnosed with leukemia, and found a new drug called Gleevec,
making headlines because of its astonishing effects in some cancer
patients. The second was after Gleevec failed him, and Mayfield
enrolled in an experimental trial for the next-generation Gleevec,
designed to help people precisely like himself. And he wants people
to know about it. ... 'I would probably be dead now were it not
for the Internet,' Mayfield said in a telephone interview. 'When
I was first diagnosed in 1999 I went to my local doctor, then
went over to Shreveport to see a transplant doctor. They said
a (bone marrow) transplant was my only option.' But Mayfield had
no close relative who could donate. 'I remember asking the doctor
over at Shreveport was there anything experimental out there and
he looked me in the eye and said no.' Mayfield did not take no
for an answer. 'I went straight home and went on the Internet
and immediately found a Web Site where they were discussing Gleevec.
Had I not had the Internet and just took his word for it, I would
probably be dead by now.'"
More and more people
are leaving the doctor's office with a diagnosis and taking that
diagnosis to the Internet. The world of cancer treatment is changing
quickly, and it doesn't appear that it will slow down anytime
"The U.S. Food and
Drug Administration plans to speed up government approval of new
cancer therapies by creating an office dedicated to medicines,
the agency announced on Friday. The new office will oversee a
variety of different cancer drugs, including biotech drugs and
related products like dyes used for imaging technologies. Such
'changes will make the review process stronger and more efficient,'
said Health and Human Services Secretary Tommy Thompson. The new
office will centralize all cancer-related drug efforts, allowing
for better coordination among FDA reviewers, reduced costs and
less duplication, officials said. While the new structure aims
to speed up the approval process, 'the reality is that oncology
approvals already go pretty quickly if the drug has been shown
to be effective,' said John Jenkins, head of the FDA's Office
of New Drugs."
Even before these therapies
have been approved, they are in clinical trials like the one Jerry
Mayfield was so happy to find.
also called cancer treatment or research studies, test new treatments
in people with cancer. The goal of this research is to find better
ways to treat cancer and help cancer patients. Clinical trials
test many types of treatment such as new drugs, new approaches
to surgery or radiation therapy, new combinations of treatments,
or new methods such as gene therapy. A clinical trial is one of
the final stages of a long and careful cancer research process.
The search for new treatments begins in the laboratory, where
scientists first develop and test new ideas. If an approach seems
promising, the next step may be testing a treatment in animals
to see how it affects cancer in a living being and whether it
has harmful effects. Of course, treatments that work well in the
lab or in animals do not always work well in people. Studies are
done with cancer patients to find out whether promising treatments
are safe and effective."
With so much changing
so quickly, how can doctors keep up?
require anywhere from 12 hours (Alabama) to 50 hours (several
states) of continuing medical education (CME) per year for license
reregistration. Some states also mandate CME content, such as
HIV/AIDS, risk management, or medical ethics. In addition, many
states also require that a certain percentage of CME be category
1, as measured, for example, through the American Medical Association
Physicians Recognition Award."
Each state has different
requirements. For more specific information about where you live,
you can view the table found at the American Medical Association
site accessible through the above link. In addition to these differing
state requirements, what each hospital requires of its doctors
often differs, as well.
As a patient, who do
you trust? You doctor has been through years of medical training
(and continuing education), but there is so much more information
on the Internet that was never mentioned as a treatment option?
What does it all mean? Now what do you do?
First, you can keep in
a study in the Sept. 17, 2003, issue of the Journal of the American
Medical Association, of 433 Web sites examined, most made misleading
or unproven health claims about the herbal remedies they sold.
For that reason, it's important to investigate each site you visit."
Most were misleading.
Some were not. Who do you trust? Where do you start?
"Check out the site sponsor. Web sites created by major medical
centers, national organizations, universities and government agencies
are highly credible.
"Determine the site's objective. Is the sponsor trying to
educate you or sell you something? Stay away from sites that don't
clearly distinguish between scientific evidence and advertisements.
"Find out if the information is current. Look for a date.
Older material may not include recent findings, such as newly
discovered side effects or advances in the field."
What about popular complementary
and alternative medicines?
alternative medicine (CAM) may give you more treatment options,
but some of those options can help you, and some can hurt you.
When considering CAM, steer a middle course between uncritical
acceptance and outright rejection. Be open-minded yet skeptical
at the same time. Assess the credentials of anyone who advocates
CAM. Gather information from a variety of sources and evaluate
the information carefully."
Whether talking to your
doctor, listening to a report on the radio, or reading an article
online, it helps to know the meanings of some key terms:
refers to evidence-based, or mainstream medical treatments that
have been tested following a strict set of guidelines and found
to be safe and effective.... The treatments used in mainstream
medicine have been approved by the Food and Drug Administration.
"Research or investigational
treatments are therapies being studied in a clinical trial. Clinical
trials are research projects that determine whether a new treatment
is effective and safe for patients....
to supportive methods that are used to complement, or add to,
mainstream treatments. Examples might include meditation to reduce
stress, peppermint tea for nausea, and acupuncture for chronic
back pain. Complementary methods are not given to cure disease,
rather they may help control symptoms and improve well-being....
is a term that refers to the combined offering of evidence-based
mainstream and complementary therapies.
"The term unproven
or untested can be confusing because it is sometimes used to refer
to treatments with little basis in scientific fact, while it may
also refer to treatments or tests that are under investigation.
Adequate scientific evidence is not available to support its use.
to treatments that are promoted as cancer cures. They are unproven
because they have not been scientifically tested, or were tested
and found to be ineffective. If used instead of evidence-based
treatment, the patient may suffer, either from lack of helpful
treatment or because the alternative treatment is actually harmful.
to the promotion of methods that claim to prevent, diagnose, or
cure cancers that are known to be false, or which are unproven...."
While the above articles
have been addressing cancer issues, the same ideas would apply
when researching another diagnosis. Valid research fills the pages
of medical journals and web sites, and clinical trials are ongoing
for various new treatments.
"There is new hope
in the treatment of the most common cause of blindness. Australian
doctors are trialling new drugs which not only treat the symptoms
of macular degeneration, but in some cases, can actually restore
vision.... Doctors at Melbourne's Centre for Eye Research are
now trialling three new drugs which are injected into or just
behind the eye to stop the blood vessels growing. Trials so far
have shown more than half the patients had some improvement in
their vision after six months. 'This is the first time in this
disease that some of the vision which has been lost could be regained,'
Dr Guymer says. James Riddell has been taking part in the trial
for two and a half years. 'Its done a heck of a lot of good in
my right eye, I can now see through it where I couldn't before.
What's been done to me has made me feel terrific. Its made my
life again,' Mr Riddell says. The drugs are being trialled at
eye hospitals around Australia. It will be at least two years
before they are approved for general use."
Questions of the Week:
When you, or someone you care about, is given a diagnosis, what
do you do with that new information? Where can you look for safe
and effective treatment options? How can you safely use information
you find on your own in conjuction with the suggestions offered
by your doctor? Why is it important to discuss these alternatives
with your doctor?
Please email me with any ideas or suggestions.
Note: Due to increasing amounts of SPAM sent to this account, please include "QOW" in the subject line when sending me email.
I look forward to reading
what you have to say.
Health Community Coordinator
Access Excellence @ the National Health Museum