Friday, October 31, 2008
Thursday, October 30, 2008
New Bloggers with MS
I've recently discovered some new MS bloggers out there in the blogosphere. Enjoy.
Marie blogs at Nourish and has been telling her Journey to MS diagnosis.
Rich blogs at Everyone Here is Jim Dandy. One of his writings appeared in the Carnival of MS Bloggers #1 back in January 2008.
Please welcome these folks to the MS blogosphere.
Wednesday, October 29, 2008
Change Is Coming - But Maybe Not Where You Expected
Thanks Sid for turning me onto this new Campaign. The Hope of this Country is in the Next Generation.
Who is Generation We?
Millennials are the largest generation in American history. Born between 1978 and 2000, they are 95 million strong, compared to 78 million Baby Boomers. They are independent—politically, socially, and philosophically—and they are spearheading a period of sweeping change in America and around the world. No one knows the Millennials like Eric Greenberg. In Generation We, Greenberg explains the emerging power of the Millennial Generation, shows how they (and their supporters from other generations) are poised to change our nation and our world for the better, and lays out a powerful plan for progressive change that today's youth is ready to implement.
Visit www.Gen-We.org for more information.
Generation WE: The Movement Begins... from Generation We on Vimeo.
Who is Generation We?
Millennials are the largest generation in American history. Born between 1978 and 2000, they are 95 million strong, compared to 78 million Baby Boomers. They are independent—politically, socially, and philosophically—and they are spearheading a period of sweeping change in America and around the world. No one knows the Millennials like Eric Greenberg. In Generation We, Greenberg explains the emerging power of the Millennial Generation, shows how they (and their supporters from other generations) are poised to change our nation and our world for the better, and lays out a powerful plan for progressive change that today's youth is ready to implement.
Visit www.Gen-We.org for more information.
Generation WE: The Movement Begins... from Generation We on Vimeo.
Tuesday, October 28, 2008
Speak Up!! Make Your Voice Heard!!
From October 27, 2008 through November 3, 2008, you have a unique opportunity to make your voice heard on health information privacy issues, their impact on the Health 2.0 movement, and how best to build public trust in these technologies. (hat tip to: The Health Care Blog)
They are seeking to gather feedback from the public on the important privacy issues that confront all of us as we promote the movement to e-health. A report will be generated based on the responses, so it is important that a broad range of stakeholders participate. Go to www.thenationaldialogue.org to find out more and to log on!
About The National Dialogue:
In late October, just before a critical presidential election, citizens and stakeholders around the nation will join a unique experiment in 21st century democracy. The National Academy of Public Administration, on behalf of the Federal CIO Council, the Office of Management and Budget, and the General Services Administration, will host an online national dialogue that demonstrates a fundamentally different approach to the work of government.
This national discussion will engage a diverse group of voices in tackling one of the key issues confronting the nation's health care system: How can we use information technology to improve the way patients interact with the healthcare system, while safeguarding their right to privacy? Participants will have an opportunity to discuss challenges, generate breakthrough ideas, and recommend principles that will be presented to the next Administration.
How can I participate in the National Discussion?
The National Discussion is open to everyone. It's easy to submit and rank ideas. To learn more, please read our tutorial on using this site.
How will my participation in the National Discussion make a difference?
The National Discussion will produce concrete, actionable suggestions for government leaders. A panel of Fellows from the National Academy of Public Administration will distill the results of this dialogue into a report that captures “citizen-centric” recommendations. The report will be presented to the transition team for the new Administration, as well as OMB, the United States General Services Administration, the Federal CIO Council, and other relevant Federal agencies.
Who is hosting the National Discussion?
The National Discussion on Health Information Technology and Privacy is being hosted by the National Academy of Public Administration, in partnership with AmericaSpeaks and Delib. Established in 1967 and chartered by Congress, the National Academy is a non-profit, non-partisan coalition of top public management and organizational leaders who tackle the nation's most critical and complex challenges. As the home of The Collaboration Project, the National Academy is uniquely positioned to host this discussion. We are proud to be working in partnership with AmericaSpeaks and Delib, non-partisan experts in online and face-to-face citizen engagement and public deliberation.
For more information, contact the National Academy of Public Administration info@thenationaldialogue.org
They are seeking to gather feedback from the public on the important privacy issues that confront all of us as we promote the movement to e-health. A report will be generated based on the responses, so it is important that a broad range of stakeholders participate. Go to www.thenationaldialogue.org to find out more and to log on!
About The National Dialogue:
In late October, just before a critical presidential election, citizens and stakeholders around the nation will join a unique experiment in 21st century democracy. The National Academy of Public Administration, on behalf of the Federal CIO Council, the Office of Management and Budget, and the General Services Administration, will host an online national dialogue that demonstrates a fundamentally different approach to the work of government.
This national discussion will engage a diverse group of voices in tackling one of the key issues confronting the nation's health care system: How can we use information technology to improve the way patients interact with the healthcare system, while safeguarding their right to privacy? Participants will have an opportunity to discuss challenges, generate breakthrough ideas, and recommend principles that will be presented to the next Administration.
How can I participate in the National Discussion?
The National Discussion is open to everyone. It's easy to submit and rank ideas. To learn more, please read our tutorial on using this site.
How will my participation in the National Discussion make a difference?
The National Discussion will produce concrete, actionable suggestions for government leaders. A panel of Fellows from the National Academy of Public Administration will distill the results of this dialogue into a report that captures “citizen-centric” recommendations. The report will be presented to the transition team for the new Administration, as well as OMB, the United States General Services Administration, the Federal CIO Council, and other relevant Federal agencies.
Who is hosting the National Discussion?
The National Discussion on Health Information Technology and Privacy is being hosted by the National Academy of Public Administration, in partnership with AmericaSpeaks and Delib. Established in 1967 and chartered by Congress, the National Academy is a non-profit, non-partisan coalition of top public management and organizational leaders who tackle the nation's most critical and complex challenges. As the home of The Collaboration Project, the National Academy is uniquely positioned to host this discussion. We are proud to be working in partnership with AmericaSpeaks and Delib, non-partisan experts in online and face-to-face citizen engagement and public deliberation.
For more information, contact the National Academy of Public Administration info@thenationaldialogue.org
I'm going to speak up, will you join me?
Sunday, October 26, 2008
Carnival of MS Bloggers #22 - Election Edition
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Election Edition
One of the most memorable things that was said during the campaigning this year was when Hillary was speaking at the convention and she said that her mother was born before women had the right to vote but that this year her daughter had voted for her mother for President. That really struck a cord for me. We’ve come so far and we’re getting so close. Puddin’ and I early voted earlier in the week, and in four years we’ll go again and take FuzzyHead with us. This is one of the many traditions that I’m proud to be passing down to my daughters.
While I don't agree on all issues with Senator Obama; I agree on most. He has my vote because he is cool, calm, and collected. THAT is the hand I want shaking hands with our allies, reaching out to our enemies, saluting our troops, holding our nuclear weapon codes, and raised in oath to carry out the duties of the President of the United States of America.
I’ve seen McCain/Palin Signs around, and while they definately aren’t my choice, I would never physically ever take someone’s sign out of their yard, or do anything to disfigure it. The beauty of this country is that we have freedom of speech and the freedom to express our opinions, and everyone is allowed their opinion.
That being said, I have seen a few different signs around town that have been disfigured.. and I kind of wonder what “Political Sign” that the disfigurement represents. Personally I would not want to be part of a group that did that sort of thing. I hope its not a “Sign” of our times, or a “Sign” that people think they did something cool by defacing other’s property. All it does when I see that kind of thing, is make me think of what a small mind the person who did it must have…
Palin Campaign Rally
by Word Salads
Because we have universal health care in this country we often don't think about what an illness can do to families financially. This is much more evident in the US but it does affect Canadians as well.
My mother was quite ill when she was pregnant with me. I wasn't a very good guest apparently. As a result of not being able to keep anything down and the threat of miscarriage a few times, when mom went into labour, the specialists were called in to help with the delivery and to care for what they thought was to be a tiny baby. The minute I was born, they wheeled the incubator out of the room and the specialists all started to leave. Mom asked where everyone was going. She was told they weren't needed as I was big and healthy (and screaming), at 7 pounds, 14 ounces.
My father is fond of reminding me it took them 3 years to pay for my birth because of the precautions needed and the specialists required to be there. I never understood that statement until I was a teenager and learned about our health care system. Canada has only had universal health care since the mid '60s (I was born in '63). Yes, they had insurance, but that only covers so much. My parents have been adamant over the years that I have insurance for everything, and I do.
I have been a consumer of health care since before I was born. All the usual childhood diseases, tonsils came out at 10, occasional trips to emergency for sprains, stitches, etc., regular doctor visits (they now call them "well woman" visits instead of paps), irregular doctor visits for severe colds or flus, MS onset and diagnosis and most recently my surgery for ovarian cysts (I can't imagine the costs associated with that whole experience).
If I added the costs of my health care together, I'm sure I'd be at the million dollar mark by now. But it has basically only cost me parking. And the occasional over the counter medicine.
When the MS diagnosis came along, I signed up for the Avonex drug study. For the duration of the study, the drug company, Avonex was going to cover the costs associated with the study: MRIs, blood work, etc. That was for almost two years. Then after the study, my insurance at work covered the prescription. But it would only do so for two years. This was in the midst of lobbying the various provincial governments to cover the enormous expense of the DMDs. Nova Scotia came on board with the plan around that time along with New Brunswick a few years later and eventually Newfoundland and Labrador. The rest of the country had already covered the drugs.
I get my prescription for Avonex filled every three months. I call the hospital pharmacy, give them my ID number and go pick it up the next day. They send me a bill for $9.54 for "dispensing fees" or some such thing and that's it. So for about $40 a year and parking I get Avonex. In September it will be 9 years that I've been on this drug. Since diagnosis I haven't missed any work because of MS. I have worked full time for the past 8 years (I was part time for several years before that), volunteered, and in general contributed to society (and to the government coffers).
A lot of folks complain about the government's take of income tax. I understand their frustration as I used to be one of them. But not now. I know why I pay taxes and my health is to show for it. I also sock away as much money as I can for retirement because I know that my retirement may one day be forced on me because of the MS.
I have repeatedly said over the years that I am one lucky duck. Not everyone can say that. Some folks may not be working full time or have full health coverage for other prescriptions or they may not be working at all. They may not be living where they want because of financial strains. Maybe they were the sole breadwinner before disability and can now no longer afford to look after their families the way they had been. Whatever the case, even in Canada, getting sick can cause great financial hardship, though it may not be because of the cost of the actual health care.
The Wookie moved to Canada from southern California when he was a teenager. His father (now semi retired) became a professor at one of the universities here. A few years after they had moved here, the Wookie's youngest brother was diagnosed with testicular cancer. Sadly, it was discovered too late and he passed away, but not before undergoing surgery and treatment. Both parents were working professionals but admitted that if they had still been in the US, the brother's medical care would have bankrupted them.
We have wonderful care in this country, wonderful doctors, and wonderful facilities. We also have problems with our medical system that we're trying to work out. The biggest complaint people have is wait times for tests or to see specialists. If your condition is emergent you will be seen and assessed quickly. If it turns out that you don't need emergent treatment, well, you'll wait...
Over the past several years I have watched walk-in medical clinics open up to help ease the strain on emergency departments. There is a shortage of family doctors and as a result, longer waits to see one even if you have one. That's part of what was driving folks to the EDs. The other part is that many people aren't proactive enough with their health, engaging in risky behaviour, not following doctors' advice , that sort of thing. The government and our doctors are not responsible for our health. We are. And we have to educate ourselves about...ourselves. We must become more knowledgeable about our health, we must lead healthier lives, and we must not take for granted the great things we already have.
S.
I’ve seen McCain/Palin Signs around, and while they definately aren’t my choice, I would never physically ever take someone’s sign out of their yard, or do anything to disfigure it. The beauty of this country is that we have freedom of speech and the freedom to express our opinions, and everyone is allowed their opinion.That being said, I have seen a few different signs around town that have been disfigured.. and I kind of wonder what “Political Sign” that the disfigurement represents. Personally I would not want to be part of a group that did that sort of thing. I hope its not a “Sign” of our times, or a “Sign” that people think they did something cool by defacing other’s property. All it does when I see that kind of thing, is make me think of what a small mind the person who did it must have…
Palin Campaign Rally by Word Salads
This is the Palin Rally we all attended early Monday morning! Here is Sarah and Piper, they were only a few feet from us!
Whoo hooo!
My first Rally!!!!
Hank Williams, Jr. reached out and shook my hand! WHOOT!
My family and some friends read this blog so I urge those thinking about voting for McCain to think again. The Wall Street Journal had an article on Monday about McCain’s ideas on how to change the health insurance market. Here are the points made in the article:
McCain’s health plan would cover 5 million Americans.
McCain’s health plan would cost 1.3 trillion dollars.
McCain wants less regulation, here is a direct quote from a paper he wrote:
"Opening up the health insurance market to more vigorous nationwide competition, as we have done over the last decade in banking, would provide more choices of innovative products less burdened by the worst excesses of state-based regulation."
McCain would start taxing your employer sponsored health insurance plan. Let’s say your company spends 10,000 a year on your health insurance. McCain would charge the employee income tax on that 10,000. The cause and effect of this is unknown but the belief is young, healthy employees would pass on the employer sponsored plan and go for a cheaper private plan. This would leave employers with older and high risk (me) employees on their plan. This might cause employers to end their health insurance plans due to high costs.
McCain’s solution for the above situation is to over a high risk plan for the broken (actually they already have this) but it is very pricey and the benefits are horrible. There is a good change my medication would NOT be covered under such plan.
McCain would over a tax credit to individuals of 2,500 and 5,000 for families in order to purchase private insurance. I have been self insured before and it was 400 a month with no drug coverage. I would NOT be able to afford the 2,000 a month for Copaxone. The chances of a private insurance company actually insuring me is pretty small anyway. Pre-existing conditions would prevent me from qualifying. I probably have 2-3 different conditions… obesity, MS and thyroid issues.
Obama’s health plan would cover 34 million Americans.
Obama’s health plan would cost 1.6 trillion dollars.
Obama’s plan would be regulated by the government.
He would create a new government-run plan as well as an “exchange” in which private companies would offer insurance to compete with the government plan. New rules would require that insurance companies provide coverage to everyone, at consistent prices, even those with existing ailments. Parents would be required to cover their children, and large employers would be required to cover their workers or pay a fine.
Obama’s plan would regulate the benefits so that minimum standard would be set up. Additional benefits would be offered at a higher premium.
Obama’s plan would most likely require companies to offer these benefits to their employees.
Are either plan perfect? No, of course not. Is Obama’s plan a step in the right direction? YES! McCain’s is going in the WRONG direction! The tax to the health insurance benefit will effect millions of American families that can’t afford it. The cost of McCain’s plan will keep increasing along with the number of uninsured. Yes, it’s pricey but everyone should be able to see a doctor and have basic coverage. That is why I am voting for Obama.
Whoo hooo!
My first Rally!!!!
Hank Williams, Jr. reached out and shook my hand! WHOOT!
My family and some friends read this blog so I urge those thinking about voting for McCain to think again. The Wall Street Journal had an article on Monday about McCain’s ideas on how to change the health insurance market. Here are the points made in the article:
McCain’s Plan
McCain’s health plan would cover 5 million Americans.
McCain’s health plan would cost 1.3 trillion dollars.
McCain wants less regulation, here is a direct quote from a paper he wrote:
"Opening up the health insurance market to more vigorous nationwide competition, as we have done over the last decade in banking, would provide more choices of innovative products less burdened by the worst excesses of state-based regulation."
McCain would start taxing your employer sponsored health insurance plan. Let’s say your company spends 10,000 a year on your health insurance. McCain would charge the employee income tax on that 10,000. The cause and effect of this is unknown but the belief is young, healthy employees would pass on the employer sponsored plan and go for a cheaper private plan. This would leave employers with older and high risk (me) employees on their plan. This might cause employers to end their health insurance plans due to high costs.
McCain’s solution for the above situation is to over a high risk plan for the broken (actually they already have this) but it is very pricey and the benefits are horrible. There is a good change my medication would NOT be covered under such plan.
McCain would over a tax credit to individuals of 2,500 and 5,000 for families in order to purchase private insurance. I have been self insured before and it was 400 a month with no drug coverage. I would NOT be able to afford the 2,000 a month for Copaxone. The chances of a private insurance company actually insuring me is pretty small anyway. Pre-existing conditions would prevent me from qualifying. I probably have 2-3 different conditions… obesity, MS and thyroid issues.
Obama’s Plan
Obama’s health plan would cover 34 million Americans.
Obama’s health plan would cost 1.6 trillion dollars.
Obama’s plan would be regulated by the government.
He would create a new government-run plan as well as an “exchange” in which private companies would offer insurance to compete with the government plan. New rules would require that insurance companies provide coverage to everyone, at consistent prices, even those with existing ailments. Parents would be required to cover their children, and large employers would be required to cover their workers or pay a fine.
Obama’s plan would regulate the benefits so that minimum standard would be set up. Additional benefits would be offered at a higher premium.
Obama’s plan would most likely require companies to offer these benefits to their employees.
Summary
Are either plan perfect? No, of course not. Is Obama’s plan a step in the right direction? YES! McCain’s is going in the WRONG direction! The tax to the health insurance benefit will effect millions of American families that can’t afford it. The cost of McCain’s plan will keep increasing along with the number of uninsured. Yes, it’s pricey but everyone should be able to see a doctor and have basic coverage. That is why I am voting for Obama.
Canadian Health Care and Insurance by Shauna
My mother was quite ill when she was pregnant with me. I wasn't a very good guest apparently. As a result of not being able to keep anything down and the threat of miscarriage a few times, when mom went into labour, the specialists were called in to help with the delivery and to care for what they thought was to be a tiny baby. The minute I was born, they wheeled the incubator out of the room and the specialists all started to leave. Mom asked where everyone was going. She was told they weren't needed as I was big and healthy (and screaming), at 7 pounds, 14 ounces.
My father is fond of reminding me it took them 3 years to pay for my birth because of the precautions needed and the specialists required to be there. I never understood that statement until I was a teenager and learned about our health care system. Canada has only had universal health care since the mid '60s (I was born in '63). Yes, they had insurance, but that only covers so much. My parents have been adamant over the years that I have insurance for everything, and I do.
I have been a consumer of health care since before I was born. All the usual childhood diseases, tonsils came out at 10, occasional trips to emergency for sprains, stitches, etc., regular doctor visits (they now call them "well woman" visits instead of paps), irregular doctor visits for severe colds or flus, MS onset and diagnosis and most recently my surgery for ovarian cysts (I can't imagine the costs associated with that whole experience).
If I added the costs of my health care together, I'm sure I'd be at the million dollar mark by now. But it has basically only cost me parking. And the occasional over the counter medicine.
When the MS diagnosis came along, I signed up for the Avonex drug study. For the duration of the study, the drug company, Avonex was going to cover the costs associated with the study: MRIs, blood work, etc. That was for almost two years. Then after the study, my insurance at work covered the prescription. But it would only do so for two years. This was in the midst of lobbying the various provincial governments to cover the enormous expense of the DMDs. Nova Scotia came on board with the plan around that time along with New Brunswick a few years later and eventually Newfoundland and Labrador. The rest of the country had already covered the drugs.
I get my prescription for Avonex filled every three months. I call the hospital pharmacy, give them my ID number and go pick it up the next day. They send me a bill for $9.54 for "dispensing fees" or some such thing and that's it. So for about $40 a year and parking I get Avonex. In September it will be 9 years that I've been on this drug. Since diagnosis I haven't missed any work because of MS. I have worked full time for the past 8 years (I was part time for several years before that), volunteered, and in general contributed to society (and to the government coffers).
A lot of folks complain about the government's take of income tax. I understand their frustration as I used to be one of them. But not now. I know why I pay taxes and my health is to show for it. I also sock away as much money as I can for retirement because I know that my retirement may one day be forced on me because of the MS.
I have repeatedly said over the years that I am one lucky duck. Not everyone can say that. Some folks may not be working full time or have full health coverage for other prescriptions or they may not be working at all. They may not be living where they want because of financial strains. Maybe they were the sole breadwinner before disability and can now no longer afford to look after their families the way they had been. Whatever the case, even in Canada, getting sick can cause great financial hardship, though it may not be because of the cost of the actual health care.
The Wookie moved to Canada from southern California when he was a teenager. His father (now semi retired) became a professor at one of the universities here. A few years after they had moved here, the Wookie's youngest brother was diagnosed with testicular cancer. Sadly, it was discovered too late and he passed away, but not before undergoing surgery and treatment. Both parents were working professionals but admitted that if they had still been in the US, the brother's medical care would have bankrupted them.
We have wonderful care in this country, wonderful doctors, and wonderful facilities. We also have problems with our medical system that we're trying to work out. The biggest complaint people have is wait times for tests or to see specialists. If your condition is emergent you will be seen and assessed quickly. If it turns out that you don't need emergent treatment, well, you'll wait...
Over the past several years I have watched walk-in medical clinics open up to help ease the strain on emergency departments. There is a shortage of family doctors and as a result, longer waits to see one even if you have one. That's part of what was driving folks to the EDs. The other part is that many people aren't proactive enough with their health, engaging in risky behaviour, not following doctors' advice , that sort of thing. The government and our doctors are not responsible for our health. We are. And we have to educate ourselves about...ourselves. We must become more knowledgeable about our health, we must lead healthier lives, and we must not take for granted the great things we already have.
S.
This concludes the 22nd edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on November 6, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 4, 2008.
Thank you.
Comments for this post.Thank you.
Friday, October 24, 2008
Most Promising New MS Treatment Found in Campath?
As researchers continue to investigate more effective and safe treatments, we MS patients will continue to read positive reports of clinical trial results and continue to hope for better treatments and possibly a cure someday. This week was one of those weeks. Positive results from a Phase IIb trial comparing alemtuzumab (Campath-1H) with interferon beta-1a (Rebif) was announced by Genzyme Corporation and Bayer HealthCare Pharmaceuticals.
For more, read Campath (alemtuzumab) and MS Patients - Positive Phase 2 Results at Health Central.
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