nationalhealthmuseum.org

Question of the Week
July 19, 2004

Hello,

Meet Jerry Mayfield.

"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.'"
http://www.reuters.com/newsArticle.jhtml?type=healthNews&storyID=5698646

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 soon.

"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."
http://www.reuters.co.uk/newsArticle.jhtml?type=healthNews&storyID=5695126§ion=news

Even before these therapies have been approved, they are in clinical trials like the one Jerry Mayfield was so happy to find.

"Clinical trials, 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."
http://www.cancer.gov/clinicaltrials/resources/taking-part-treatment-trials

With so much changing so quickly, how can doctors keep up?

"Fifty-four boards 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 Physician‚s Recognition Award."
http://www.ama-assn.org/ama1/pub/upload/mm/40/tab14-04.pdf

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 mind that:
"According to 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."
http://www.mayoclinic.com/invoke.cfm?id=SA00078

Most were misleading. Some were not. Who do you trust? Where do you start?

"When evaluating medical claims:
"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."
http://www.mayoclinic.com/invoke.cfm?id=SA00078

What about popular complementary and alternative medicines?

"Complementary and 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."
http://www.mayoclinic.com/invoke.cfm?id=SA00078

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:

"Proven treatment 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....

"Complementary refers 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....

"Integrative therapy 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.

"Alternative refers 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.

"Quackery refers to the promotion of methods that claim to prevent, diagnose, or cure cancers that are known to be false, or which are unproven...."
http://www.cancer.org/docroot/ETO/content/ETO_5_1_Introduction.asp

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."
http://www.abc.net.au/news/health/sophie_scott/newsitems/s1140611.htm

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.

Cindy
aehealth@yahoo.com
Health Community Coordinator
Access Excellence @ the National Health Museum
http://www.accessexcellence.org

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