Sent to me by Carlene Hobbs. News segment highlighting cell regeneration and the future of growing organs from the body's own cells. A medical break though.
This is a pretty compelling reason why everyone, and especially patients with chronic illness and their loved ones, should support medical research in general and stem cell research in particular. Check out the news story from CBS News.
Wednesday, May 13, 2009
Wednesday, May 6, 2009
Vertigo, Imbalance, Dizziness resources
Vestibular Disorders Association | Vertigo, Imbalance, Dizziness resources - Home
http://www.vestibular.org/index.php
"Vestibular (inner ear balance) disorders
Vestibular disorders can cause dizziness, vertigo, imbalance, problems with hearing, nausea, fatigue, anxiety, concentration, and other symptoms. They can deeply affect a person's day-to-day functioning, ability to work, social relationships, and quality of life."
http://www.vestibular.org/index.php
"Vestibular (inner ear balance) disorders
Vestibular disorders can cause dizziness, vertigo, imbalance, problems with hearing, nausea, fatigue, anxiety, concentration, and other symptoms. They can deeply affect a person's day-to-day functioning, ability to work, social relationships, and quality of life."
Wednesday, April 29, 2009
Article -- Off-Label Drugs: What You Need to Know
[Thanks to Blades49456 (Bruce MacDonald) for bringing this to my attention via post to several vasculitis groups. Meaghan is currently subject to approval for Rituximab, which as many of you know has been successfully used to treat Churg-Strauss vasculitis. Still, it may come under this "off-label" designation, and now I know any refusal by the insurance to allow treatment is not only debateable on a factual basis, but debateable on a legal basis as well. Hopefully there will be no problems. -- Joseph]
Navigating the Health Care System: Off-Label Drugs: What You Need to Know
http://www.ahrq.gov/consumer/cc/cc042109.htm
"Off-Label Drugs: What You Need to Know
By Carolyn M. Clancy, M.D.
April 21, 2009
What should you do if your doctor prescribes a medicine for you and you find out that the medicine is not normally used to treat your condition?
Ask your doctor. It's possible you've been prescribed a medicine for an "off-label" use.
Off-label prescribing is when a physician gives you a drug that the U.S. Food and Drug Administration (FDA) has approved to treat a condition that is different than yours. This practice is legal and common. In fact, one out of every five prescriptions Exit Disclaimer written today is for off-label use.
Under Federal law, the FDA must approve all new prescription drugs using evidence that the medicine is safe and effective for a particular condition. This allows a drug maker to market a drug for the use the FDA agreed it works. While a company is not allowed to market an approved drug for other purposes, the law does let physicians prescribe the medication to treat a condition for which it is not approved.
Are off-label drugs safe?
This is a good question to ask your doctor. Most doctors only prescribe off label when they are confident the medicine will work well for treating a condition. Off-label drugs can help patients when approved treatments aren't working or when patients have rare conditions that don't have approved treatments.
Heart medicines, antipsychotics, and antibiotics are commonly prescribed off label. Beta blockers, for example, were first approved for treating high blood pressure but have since been found to be good for treating heart failure and migraines. Some medicines designed to treat depression also are used to treat chronic pain.
All drugs carry risks, however. Treatment decisions involve weighing possible risks against possible benefits. Sometimes the risks outweigh the benefits. When it comes to off-label drugs, sometimes there isn't enough reliable evidence to make informed decisions.
Research funded by my agency, the Agency for Healthcare Research and Quality (AHRQ), shows that some newer antipsychotic drugs developed to treat schizophrenia and bipolar disorders are prescribed to millions of Americans who suffer from depression, dementia, and other conditions. But there's no evidence that these drugs work to treat them. That is a problem because another AHRQ study found that adults who took certain antipsychotic drugs had a higher risk of sudden death from heart disease than patients who did not take them. This research should help doctors and patients weigh the risks and benefits of these drugs before prescribing them for depression or for other off-label uses.
Talk with your doctor if you have concerns about any medicine or treatment, particularly if it may be off label. Here are several questions to ask:
* Is this the approved use of the medicine? You may not know if the use is off label. This question can help you start the conversation with your doctor about your medicines.
* Is the off-label use of this drug likely to be more effective than one approved to treat my illness? This is important because the off-label drug may not be as well tested for your condition.
* What evidence shows that this off-label drug can treat my condition?
* What are the risks and benefits of off-label treatment with this drug?
* Will my health insurance cover off-label treatment with this drug?
As we like to say at AHRQ, "Questions are the answer," meaning that it's important to ask your doctor plenty of questions about any medicines he or she prescribes. When you understand why you are taking certain medicines—including off-label drugs—you are more likely to take them correctly.
I'm Dr. Carolyn Clancy, and that's my opinion on how to navigate the health care system.
More Information
Agency for Healthcare Research and Quality
Effective Health Care
Efficacy and Comparative Effectiveness of Off-Label Use of Atypical Antipsychotics
http://effectivehealthcare.ahrq.gov/healthInfo.cfm?infotype=rr&ProcessID=5&DocID=64
Agency for Healthcare Research and Quality
Use of Atypical Antipsychotic Drugs Increases Risk of Sudden Cardiac Death in Adults
http://www.ahrq.gov/news/press/pr2009/antipsychpr.htm
Agency for Healthcare Research and Quality
Questions are the Answer: Get More Involved With Your Health Care
http://www.ahrq.gov/questionsaretheanswer/
U.S. Food and Drug Administration
Information for Consumers
http://www.fda.gov/cder/info/consumer.htm
National Cancer Institute
Q&A: Off-Label Drugs
http://www.cancer.gov/clinicaltrials/learning/approval-process-for-cancer-drugs/page5
Consumer Reports Best Buy Drugs
Off-Label Drug Use-The Pros and Cons
http://www.consumerreports.org/health/best-buy-drugs/index.htm Exit Disclaimer
Current as of April 2009
Internet Citation:
Off-Label Drugs: What You Need to Know. Navigating the Health Care System: Advice Columns from Dr. Carolyn Clancy, April 21, 2009. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/consumer/cc/cc042109.htm"
Navigating the Health Care System
Advice Columns from Dr. Carolyn Clancy
Carolyn Clancy, M.D., Director, AHRQ
AHRQ Director Carolyn Clancy, M.D., has prepared brief, easy-to-understand advice columns for consumers to help navigate the health care system. They will address important issues such as how to recognize high-quality health care, how to be an informed health care consumer, and how to choose a hospital, doctor, and health plan. Check back regularly for new columns.
Dr. Clancy, a general internist and researcher, is an expert in engaging consumers in their health care.
Navigating the Health Care System: Off-Label Drugs: What You Need to Know
http://www.ahrq.gov/consumer/cc/cc042109.htm
"Off-Label Drugs: What You Need to Know
By Carolyn M. Clancy, M.D.
April 21, 2009
What should you do if your doctor prescribes a medicine for you and you find out that the medicine is not normally used to treat your condition?
Ask your doctor. It's possible you've been prescribed a medicine for an "off-label" use.
Off-label prescribing is when a physician gives you a drug that the U.S. Food and Drug Administration (FDA) has approved to treat a condition that is different than yours. This practice is legal and common. In fact, one out of every five prescriptions Exit Disclaimer written today is for off-label use.
Under Federal law, the FDA must approve all new prescription drugs using evidence that the medicine is safe and effective for a particular condition. This allows a drug maker to market a drug for the use the FDA agreed it works. While a company is not allowed to market an approved drug for other purposes, the law does let physicians prescribe the medication to treat a condition for which it is not approved.
Are off-label drugs safe?
This is a good question to ask your doctor. Most doctors only prescribe off label when they are confident the medicine will work well for treating a condition. Off-label drugs can help patients when approved treatments aren't working or when patients have rare conditions that don't have approved treatments.
Heart medicines, antipsychotics, and antibiotics are commonly prescribed off label. Beta blockers, for example, were first approved for treating high blood pressure but have since been found to be good for treating heart failure and migraines. Some medicines designed to treat depression also are used to treat chronic pain.
All drugs carry risks, however. Treatment decisions involve weighing possible risks against possible benefits. Sometimes the risks outweigh the benefits. When it comes to off-label drugs, sometimes there isn't enough reliable evidence to make informed decisions.
Research funded by my agency, the Agency for Healthcare Research and Quality (AHRQ), shows that some newer antipsychotic drugs developed to treat schizophrenia and bipolar disorders are prescribed to millions of Americans who suffer from depression, dementia, and other conditions. But there's no evidence that these drugs work to treat them. That is a problem because another AHRQ study found that adults who took certain antipsychotic drugs had a higher risk of sudden death from heart disease than patients who did not take them. This research should help doctors and patients weigh the risks and benefits of these drugs before prescribing them for depression or for other off-label uses.
Talk with your doctor if you have concerns about any medicine or treatment, particularly if it may be off label. Here are several questions to ask:
* Is this the approved use of the medicine? You may not know if the use is off label. This question can help you start the conversation with your doctor about your medicines.
* Is the off-label use of this drug likely to be more effective than one approved to treat my illness? This is important because the off-label drug may not be as well tested for your condition.
* What evidence shows that this off-label drug can treat my condition?
* What are the risks and benefits of off-label treatment with this drug?
* Will my health insurance cover off-label treatment with this drug?
As we like to say at AHRQ, "Questions are the answer," meaning that it's important to ask your doctor plenty of questions about any medicines he or she prescribes. When you understand why you are taking certain medicines—including off-label drugs—you are more likely to take them correctly.
I'm Dr. Carolyn Clancy, and that's my opinion on how to navigate the health care system.
More Information
Agency for Healthcare Research and Quality
Effective Health Care
Efficacy and Comparative Effectiveness of Off-Label Use of Atypical Antipsychotics
http://effectivehealthcare.ahrq.gov/healthInfo.cfm?infotype=rr&ProcessID=5&DocID=64
Agency for Healthcare Research and Quality
Use of Atypical Antipsychotic Drugs Increases Risk of Sudden Cardiac Death in Adults
http://www.ahrq.gov/news/press/pr2009/antipsychpr.htm
Agency for Healthcare Research and Quality
Questions are the Answer: Get More Involved With Your Health Care
http://www.ahrq.gov/questionsaretheanswer/
U.S. Food and Drug Administration
Information for Consumers
http://www.fda.gov/cder/info/consumer.htm
National Cancer Institute
Q&A: Off-Label Drugs
http://www.cancer.gov/clinicaltrials/learning/approval-process-for-cancer-drugs/page5
Consumer Reports Best Buy Drugs
Off-Label Drug Use-The Pros and Cons
http://www.consumerreports.org/health/best-buy-drugs/index.htm Exit Disclaimer
Current as of April 2009
Internet Citation:
Off-Label Drugs: What You Need to Know. Navigating the Health Care System: Advice Columns from Dr. Carolyn Clancy, April 21, 2009. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/consumer/cc/cc042109.htm"
Navigating the Health Care System
Advice Columns from Dr. Carolyn Clancy
Carolyn Clancy, M.D., Director, AHRQ
AHRQ Director Carolyn Clancy, M.D., has prepared brief, easy-to-understand advice columns for consumers to help navigate the health care system. They will address important issues such as how to recognize high-quality health care, how to be an informed health care consumer, and how to choose a hospital, doctor, and health plan. Check back regularly for new columns.
Dr. Clancy, a general internist and researcher, is an expert in engaging consumers in their health care.
Thursday, April 16, 2009
Brainstorming the Ultimate Vasculitis Knowledge Base
So, what if there were one place, where all the known good information about vasculitis were indexed, with summary articles to help you understand what the significance was to your condition? What might that be worth to the vasculitis community?
There are people in the vasculitis community talking about this very concept now. I am one of them. How to collect all this information, from so many sources, and review it so that only the most pertinent information makes it into the knowledge base, and even that is checked for relevance and accuracy.
Who is going to find all this information? It would take an army.
Or, maybe the collective computing power of the entire vasculitis community. That means you could help as much as anyone. Every patient has some kernel of knowledge that is not shared by the others. By sharing what you know, you are helping others as you help yourself.
There are many competent people out there now, looking for good information. They are starved for it so that they can treat or support a vasculitis condition. Okay, so what if we give them a place to put all their hard work? What if we let them contribute to a moderated WIKI so that the power of the many can work for the benefit of the one, and the power of the one, can work for the benefit of the many...
Sound like chaos?
Not necessarily. It has already been done. Wikipedia is just such a project. World editable, the mother of all wikis has become one of the GO TO sources of information for just about any topic one can imagine. The collective information power of all the people who contribute to the Wikipedia Project is immense.
Wikipedia is also subject to vandalism. What if we had a Vasculitis WIKI, and some moron could go in at any time and change "Methotrexate," to "Monkey Toothpaste." Well, that would not be a good thing. It would not even be funny... or not really very funny. Well, whether or not it was funny would depend on the context, would you not agree? :o)
Something as important as a Vasculitis WIKI would need to be moderated. That means that the world full of regular folks could write stuff, but it would have to pass muster from a team of moderators before getting published. It could also be gone over by a cadre of editors to glean out the typos, and misstatements, before going live on the world wide web.
Why just the other day, I said "this weekend" to a group I was addressing, when I meant to say "next weekend." One little word change and it could have meant a lot of people upset at me for driving all the way across town one week early. I mean if they had enough camping gear it might have worked out that they could wait it out, but really, that was not going to work.
My point is one little word can make a difference, so we cannot allow just anybody to hit the publish button. Really no one person should be able to do that. There should be at least two people approve something before it is considered good enough to print.
How then to discriminate between the threshers and the bailers? The threshers collect the wheat, leaving the chaff on the ground. The bailers bundle it all up and take it to market. This analogy is missing one job, the quality inspectors. A team of knowledgeable people. Medical doctors for some of the information, and experienced vasculitis patients and caregivers for other types of information. We might even recruit some crafty nurses to help too. Those nurses know stuff.
The system is fed information by the hundreds, thousands of people out there on the Internet just researching away about vasculitis. When they come across something they think is worthwhile, they submit the information to the project.
Then, some one of several people gets it, takes a look, and if it looks like something, they post it as a stub article, or attach it to an existing stub article for inclusion in a future update.
At some point a person with writing ability gets involved. They study the information, maybe do some additional research to confirm a few things, then write up a summary article to introduce the information. That summary could be a simple paragraph, or it could be a condensation of the original. That part would vary depending on the length and complexity of the summary. It would also depend on the copyrights attached to the information being summarized.
Once the summary writing finishes his or her bit, then the summary article would be up for review. Other editors in the project would try to improve it, or they would give it a pass after making sure it was not poorly done or that it duplicated other articles too closely.
With at least two people giving it the green light, the summary article, and the attendant information would be published to the WIKI for consideration as a resourse for and by the larger vasculitis community.
If we get enough of these articles, and do this for a while, then we could have the definitive source of known good information about vasculitis.
That is what some of us are talking about...
What do you think? Your comments will help guide this proposed idea.
Let me have it. Send me Email.
Joseph Carpenter
Email
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
There are people in the vasculitis community talking about this very concept now. I am one of them. How to collect all this information, from so many sources, and review it so that only the most pertinent information makes it into the knowledge base, and even that is checked for relevance and accuracy.
Who is going to find all this information? It would take an army.
Or, maybe the collective computing power of the entire vasculitis community. That means you could help as much as anyone. Every patient has some kernel of knowledge that is not shared by the others. By sharing what you know, you are helping others as you help yourself.
There are many competent people out there now, looking for good information. They are starved for it so that they can treat or support a vasculitis condition. Okay, so what if we give them a place to put all their hard work? What if we let them contribute to a moderated WIKI so that the power of the many can work for the benefit of the one, and the power of the one, can work for the benefit of the many...
Sound like chaos?
Not necessarily. It has already been done. Wikipedia is just such a project. World editable, the mother of all wikis has become one of the GO TO sources of information for just about any topic one can imagine. The collective information power of all the people who contribute to the Wikipedia Project is immense.
Wikipedia is also subject to vandalism. What if we had a Vasculitis WIKI, and some moron could go in at any time and change "Methotrexate," to "Monkey Toothpaste." Well, that would not be a good thing. It would not even be funny... or not really very funny. Well, whether or not it was funny would depend on the context, would you not agree? :o)
Something as important as a Vasculitis WIKI would need to be moderated. That means that the world full of regular folks could write stuff, but it would have to pass muster from a team of moderators before getting published. It could also be gone over by a cadre of editors to glean out the typos, and misstatements, before going live on the world wide web.
Why just the other day, I said "this weekend" to a group I was addressing, when I meant to say "next weekend." One little word change and it could have meant a lot of people upset at me for driving all the way across town one week early. I mean if they had enough camping gear it might have worked out that they could wait it out, but really, that was not going to work.
My point is one little word can make a difference, so we cannot allow just anybody to hit the publish button. Really no one person should be able to do that. There should be at least two people approve something before it is considered good enough to print.
How then to discriminate between the threshers and the bailers? The threshers collect the wheat, leaving the chaff on the ground. The bailers bundle it all up and take it to market. This analogy is missing one job, the quality inspectors. A team of knowledgeable people. Medical doctors for some of the information, and experienced vasculitis patients and caregivers for other types of information. We might even recruit some crafty nurses to help too. Those nurses know stuff.
The system is fed information by the hundreds, thousands of people out there on the Internet just researching away about vasculitis. When they come across something they think is worthwhile, they submit the information to the project.
Then, some one of several people gets it, takes a look, and if it looks like something, they post it as a stub article, or attach it to an existing stub article for inclusion in a future update.
At some point a person with writing ability gets involved. They study the information, maybe do some additional research to confirm a few things, then write up a summary article to introduce the information. That summary could be a simple paragraph, or it could be a condensation of the original. That part would vary depending on the length and complexity of the summary. It would also depend on the copyrights attached to the information being summarized.
Once the summary writing finishes his or her bit, then the summary article would be up for review. Other editors in the project would try to improve it, or they would give it a pass after making sure it was not poorly done or that it duplicated other articles too closely.
With at least two people giving it the green light, the summary article, and the attendant information would be published to the WIKI for consideration as a resourse for and by the larger vasculitis community.
If we get enough of these articles, and do this for a while, then we could have the definitive source of known good information about vasculitis.
That is what some of us are talking about...
What do you think? Your comments will help guide this proposed idea.
Let me have it. Send me Email.
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org
Sunday, April 12, 2009
Help wanted
I have been stretched a little thin lately, so keeping content in the website takes priority.
However, if you are a NM vasculitis caregiver or patient and have any interest at all in helping keep this effort alive, then I can use the help. I can delegate author rights to this blog and let people talk about anything that might be of interest to you or to other vasculitis patients. By stirring the pot, we keep things fresh.
You could start out by trying some Email submissions. Send me news about yourself, how are you doing, etc. Or just send that to the CNMVF Group, and let it be know you want it posted in the blog.
I will still post things myself, but I make no promises about my ability to keep my little one man band on the road without getting some help from other patients and caregivers.
It is not as difficult as you might think. I will do the hard parts, and I can also help with the writing. Just feed me news and content about things of interest to our chapter.
So. What's new?
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
However, if you are a NM vasculitis caregiver or patient and have any interest at all in helping keep this effort alive, then I can use the help. I can delegate author rights to this blog and let people talk about anything that might be of interest to you or to other vasculitis patients. By stirring the pot, we keep things fresh.
You could start out by trying some Email submissions. Send me news about yourself, how are you doing, etc. Or just send that to the CNMVF Group, and let it be know you want it posted in the blog.
I will still post things myself, but I make no promises about my ability to keep my little one man band on the road without getting some help from other patients and caregivers.
It is not as difficult as you might think. I will do the hard parts, and I can also help with the writing. Just feed me news and content about things of interest to our chapter.
So. What's new?
Joseph Carpenter
Parent, daughter with CSS (DX March '08)
Central NM Vasculitis Foundation Chapter
See us on the web: http://www.nmvasculitis.org - http://www.vasculitisfoundation.org
Thursday, March 19, 2009
Two meetings in March 2009 confirmed!
We will meet on Thursday, March 19th at 6PM. I know some old members are returning, so we may have some awareness week planning going on! That will be grand.
There was an RSVP, so we will also meet again on Sunday, March 22nd at 2PM. A new member may be coming down from Taos, so why not come to the meeting to greet her if she makes it?
Some of the ideas already on the table are:
Participating in the Rio Grande Run for the Zoo
The 24th Annual Run for the Zoo
Sunday, May 3rd 2009
http://www.bioparksociety.org/runforthezoo/
This has been on the back burner since last Fall.
The latest news is this will work best as a September event, when the ball parks are not as busy.
However...
What about talking to the Albuquerque Isotopes about doing a Vasculitis Awareness Night at the ball park? We could arrange to "give away" wrist bands (trade for discounted tickets?) or trade for donation? Get cost of wrist bands sponsored? How to get media exposure for this event? When to arrange it? Is it too late for this year?
More Awareness Ideas are posted on the Awareness Ideas page of the www.nmvasculitis.org website.
There was an RSVP, so we will also meet again on Sunday, March 22nd at 2PM. A new member may be coming down from Taos, so why not come to the meeting to greet her if she makes it?
Some of the ideas already on the table are:
Participating in the Rio Grande Run for the Zoo
The 24th Annual Run for the Zoo
Sunday, May 3rd 2009
http://www.bioparksociety.org/runforthezoo/
- Contact NM Biological Society
- Can some kind of partner deal be arranged?
- Get permission to set up a booth at the health fair?
- VF will supply some materials, brochures, flyers,
- We can give away stickers.
- We can sell wrist bands, T-Shirts, etc.
- Arrange with VF or local printer to acquire a banner for the walkers? Who pays?
- Arrange for 2009 Awareness Week T-Shirts for all of the walkers? Who pays?
- Can we get a sponsor for this event to pay for T-shirts and banner, etc.
- Media exposure
- Health fair
- Walking is also good for the health, we can be healthy and spread awareness.
This has been on the back burner since last Fall.
The latest news is this will work best as a September event, when the ball parks are not as busy.
However...
What about talking to the Albuquerque Isotopes about doing a Vasculitis Awareness Night at the ball park? We could arrange to "give away" wrist bands (trade for discounted tickets?) or trade for donation? Get cost of wrist bands sponsored? How to get media exposure for this event? When to arrange it? Is it too late for this year?
More Awareness Ideas are posted on the Awareness Ideas page of the www.nmvasculitis.org website.
Thursday, March 12, 2009
Sticking Together for a Cure
Don't Miss Your Opportunity "Sticking Together for a Cure" May 3 - 9, 2009 | ||
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