I will be going back to school tomorrow as I attend a day long legal seminar on Advocating for Cancer Patients.
Why does this matter?
I figure the same laws that protect cancer patients when they get their treatments, will also apply to cases where vasculitis patients are denied insurance payments for reasons like, "This medication is an investigational or experimental treatment," or "This therapy is not a standard of care." Both reasons can be invalid for denying patient care if the prescribing physician has followed the accepted practices for a vasculitis specialist. Who decides what those standards should be? Is it the insurance companies? No. In the case of orphan diseases, like vasculitis, it is more often the doctors who specialize in treating the condition that collectively determine the appropriate standard of care.
Now tomorrow, I will look to learn how to put some teeth behind that statement. Something they might have to sit up and pay attention to.
As I prepare to learn how to better advocate for my daughter's medical care, I may also pick up a few skills along the way. If you wish to know more, keep an eye on this blog, or consider coming to a monthly meeting. If I know you are coming, I can prepare a summary presentation on this topic including handouts. RSVP anyone?
Here is the low down on what is going to go down...
Showing posts with label advocacy. Show all posts
Showing posts with label advocacy. Show all posts
Friday, September 24, 2010
Thursday, August 20, 2009
Health care reform: Insurance insider speaks out
Most agree we need to improve the health care system in America and the way it is financed.
We need MEANINGFUL HEALTH CARE REFORM. Not a patch, not a patsy, not a lie intended to sooth without addressing the core problems. We need a meaningful solution.
For myself, I worry about whether or not my daughter will one day be able to get insurance. The words "preexisting condition" hang out there like a death nell, ringing in the language some claim adjuster may one day use to deny her coverage and refuse to pay her medical bills.
[Knock on wood. Knock on wood. Knock on wood.]
Without other options, it is possible that one day Medicare may be her only hope for assistance with managing this expensive vasculitis condition, so how all these potential changes will affect Medicare and Medicaid is also a big concern for our family.
We who are collectively patients, caregivers, doctors, nurses, etc... could take action to save some expensive waste in the clinics and hospitals and bring that cost number down. It seems that multiple approaches will be necessary to tackle this big beastie.
One huge core issue right now seems to be trust. The patients could be more agreeable, communicate better so clinic double-booking is not considered necessary, etc. However, many patients basically do not trust that any potential savings will be shared on to them. The bookkeepers at the medical facilities still have to pay those bills to keep the lights on, provide myriad types of medical consumable supplies, and so forth. Some of them now seem to believe the patients are the enemy, and the cause of the problem. Both sides would be correct in different ways. In the absence of trust an adversarial atmosphere has arisen where people choose not to cooperate until they have some assurances of mutual gain.
So, who is going to put down their barrier first, and come to the table to work this out? Or will they both stand their ground and lose out on this historic opportunity to make changes that could leave both the patients and the medical care providers with a better system?
So, what about those insurance companies? I know I depend on health insurance through my employer to help pay for services that keep my daughter alive and in relatively good health, considering her vasculitis condition. I think I am one of the lucky ones so far, and I really have no idea how long that luck will last before the dark side emerges. It causes a lot of stress when I think of all the what ifs. Speaking out feels like looking a gift horse in the mouth, but I have to speak to the larger problem.
This thing is split right down party lines. Some republican folks out there are saying that the democrats led by the Obama Administration are leading us into too much public interest in health care. Read that, too much government control over health care, and too much tax payer money being spent on health care. I ran some numbers, and one $600 billion annual cost estimate turns out to be an approximate per capita tax increase of $2000.00 per year if we all divided it evenly among 300 million people. Wow. I mean really, Wow. It leaves me nearly speechless, but not quite.
One prominent insurance insider seems to be leaning the other way, by stating in a CNN interview that Obama's health plan is actually capitulating too easily to those special interests with a profit motive by removing the parts of the plan that provide alternatives to high cost private insurance and thereby actually help people in need of reform.
This would seem to be the dark side of the agenda promoted by certain powers that be who are ostensibly against health care reform, are actually trying to promote health care reform according to their own wish list. By killing the public plan option, they are actually promoting reform that puts even more money in their pockets.
They are the businessmen, not the medical care providers. There is a big difference between them. They serve the money, and they have lots of money to spend on lobbyists and advertising.
America, wake up. Get involved. Write your personal health care story and sent it to your congressmen. Let them know you need their help. Focus on your facts, and do it now.
Read the different opinions and learn what is going on and how this can and will affect you. The purpose for fear is to motivate you to action, but let your cooler head prevail when you write those letters. Be calm, be insistent, and let your voice be heard.
To learn more about how to contact your legislators, see the page at the VF website: Contact Your Federal Elected Officials. Also, be sure to also check out the page on how to prepare your message.
We need MEANINGFUL HEALTH CARE REFORM. Not a patch, not a patsy, not a lie intended to sooth without addressing the core problems. We need a meaningful solution.
For myself, I worry about whether or not my daughter will one day be able to get insurance. The words "preexisting condition" hang out there like a death nell, ringing in the language some claim adjuster may one day use to deny her coverage and refuse to pay her medical bills.
[Knock on wood. Knock on wood. Knock on wood.]
Without other options, it is possible that one day Medicare may be her only hope for assistance with managing this expensive vasculitis condition, so how all these potential changes will affect Medicare and Medicaid is also a big concern for our family.
We who are collectively patients, caregivers, doctors, nurses, etc... could take action to save some expensive waste in the clinics and hospitals and bring that cost number down. It seems that multiple approaches will be necessary to tackle this big beastie.
One huge core issue right now seems to be trust. The patients could be more agreeable, communicate better so clinic double-booking is not considered necessary, etc. However, many patients basically do not trust that any potential savings will be shared on to them. The bookkeepers at the medical facilities still have to pay those bills to keep the lights on, provide myriad types of medical consumable supplies, and so forth. Some of them now seem to believe the patients are the enemy, and the cause of the problem. Both sides would be correct in different ways. In the absence of trust an adversarial atmosphere has arisen where people choose not to cooperate until they have some assurances of mutual gain.
So, who is going to put down their barrier first, and come to the table to work this out? Or will they both stand their ground and lose out on this historic opportunity to make changes that could leave both the patients and the medical care providers with a better system?
So, what about those insurance companies? I know I depend on health insurance through my employer to help pay for services that keep my daughter alive and in relatively good health, considering her vasculitis condition. I think I am one of the lucky ones so far, and I really have no idea how long that luck will last before the dark side emerges. It causes a lot of stress when I think of all the what ifs. Speaking out feels like looking a gift horse in the mouth, but I have to speak to the larger problem.
This thing is split right down party lines. Some republican folks out there are saying that the democrats led by the Obama Administration are leading us into too much public interest in health care. Read that, too much government control over health care, and too much tax payer money being spent on health care. I ran some numbers, and one $600 billion annual cost estimate turns out to be an approximate per capita tax increase of $2000.00 per year if we all divided it evenly among 300 million people. Wow. I mean really, Wow. It leaves me nearly speechless, but not quite.
One prominent insurance insider seems to be leaning the other way, by stating in a CNN interview that Obama's health plan is actually capitulating too easily to those special interests with a profit motive by removing the parts of the plan that provide alternatives to high cost private insurance and thereby actually help people in need of reform.
This would seem to be the dark side of the agenda promoted by certain powers that be who are ostensibly against health care reform, are actually trying to promote health care reform according to their own wish list. By killing the public plan option, they are actually promoting reform that puts even more money in their pockets.
They are the businessmen, not the medical care providers. There is a big difference between them. They serve the money, and they have lots of money to spend on lobbyists and advertising.
America, wake up. Get involved. Write your personal health care story and sent it to your congressmen. Let them know you need their help. Focus on your facts, and do it now.
Read the different opinions and learn what is going on and how this can and will affect you. The purpose for fear is to motivate you to action, but let your cooler head prevail when you write those letters. Be calm, be insistent, and let your voice be heard.
Wendell Potter's blog | Center for Media and Democracy
"Wendell Potter has served since May 2009 as CMD's Senior Fellow on Health Care. After a 20-year career as a corporate public relations executive, last year he left his job as head of communications for one of the nation's largest health insurers to try his hand at helping socially responsible organizations -- including those advocating for meaningful health care reform -- achieve their goals. "
http://www.prwatch.org/blog/35267
Whistle-blower: Health care industry engaging in PR tactics - CNN.com
"WASHINGTON (CNN) -- Wendell Potter knows a little something about the health care industry's practices and is not afraid of to speak out as the health care reform debate heats up around the country.
Wendell Potter once was a vice president in the public relations department for insurance giant Cigna.
Wendell Potter once was a vice president in the public relations department for insurance giant Cigna.
The former vice president of corporate communications at insurance giant Cigna, who left his post, says the industry is playing "dirty tricks" in an effort to manipulate public opinion.
"Words matter, and the insurance industry is a master at linguistics and using the hot words, buzzwords, buzz expressions that they know will get people upset," he told CNN Wednesday.
Now a senior fellow on health care for the watchdog group Center for Media and Democracy, Potter writes a blog on health care reform. He is focusing on efforts to defeat legislation supporting a government health care plan -- something he supports.
In early July, Potter testified before the Senate Commerce Committee, telling senators that "I know from personal experience that members of Congress and the public have good reason to question the honesty and trustworthiness of the insurance industry."
Potter described how underwriters at his former company would drive small businesses with expensive insurance claims to dump their Cigna policies. Industry executives refer to the practice as "purging," Potter said."
http://www.cnn.com/2009/POLITICS/08/12/health.industry.whistleblower/
Wendell Potter Says 'The Fat Cats Are Winning,' This is A 'Pig of a Bill.' | Crooks and Liars
"Not only is Obama clearly ready to throw the public option overboard, he is embracing the requirement that we all be forced to buy insurance from private insurers. That means your tax dollars and mine will be used to pay subsidies to the big insurers to provide coverage to people who can't afford to buy their policies, because the big insurers charge far more than they should because Wall Street investors demand that they do.
One of the people who undoubtedly talked Obama away from the public option and into supporting this mandate is his new BFF, Aetna CEO Ron Williams. Williams, who made $65 million off of Aetna's policyholders' premiums over the past two years and who was the mastermind behind Aetna's shedding of eight million members a few years ago to meet Wall Street's demands, is the insurance industry's leading champion of requiring us all to buy insurance. And, of course, without a public option, we'll all be forced to buy coverage from Aetna or one of the other private insurers."
http://crooksandliars.com/susie-madrak/wendell-potter-says-fat-cats-are-winn
To learn more about how to contact your legislators, see the page at the VF website: Contact Your Federal Elected Officials. Also, be sure to also check out the page on how to prepare your message.
Health Care Reform - Take Action Now!
If you are like me, you are very interested in the current hullabaloo about health care.
To anyone with an interest in Vasculitis, you have to know that the words, "Preexisting Condition," strike fear in the heart of those who worry about getting insurance to help pay for health care.
The issue of health care reform is huge for vasculitis patients and their families. To me it is a great feeling of running out of time. Not enough time to write the letters I feel need to be written.
To learn more about how to contact your legislators, see the page at the VF website: Contact Your Federal Elected Officials. Also, be sure to also check out the page on how to prepare your message.
If you are like me, you are screaming mad about all the misinformation being tossed about on the airwaves, and in the streets, by people who don't care enough to discover the facts, or who have been convinced by a minority viewpoint that the facts are contrary to their interests.
It is hard to know what is right these days, unless you really spend some time getting knee deep in this stuff, and read all around an issue. It is not enough to watch one channel, or read one newspaper. You have to work a bit to learn why people are hopping mad, and some even mad as in the Mad Hatter.
I found two media references in particular that I find useful for framing the question, "What is going to happen, and what can I do about it?"
That gets the message across that you had better put your two cents in, because things are going to happen with or without your participation. Fire up the word processor, the fax machine, and the Email client, and send mail to your representatives and congress persons.
The other very interesting media bit that I came across recently was a roundtable discussion including several highly placed persons from multiple sides of this issue. It is a video about 45 minutes long, but well worth your time if you want to get a handle on this health care debate:
Speaking of the cost of health care, here is some data that might shock most Americans, but maybe does not come as a surprise to those of you with vasculitis:
Once again, to learn more about how to contact your legislators, see the page at the VF website: Contact Your Federal Elected Officials. Also, be sure to also check out the page on how to prepare your message.
Whatever you do or don't do personally, be prepared for changes in the way health care is financed in this country. One way or the other, reform are coming. Act now if you want to be a part of shaping that future.
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
Or, call Joseph Carpenter at (505) 255-1366 for more information.
To anyone with an interest in Vasculitis, you have to know that the words, "Preexisting Condition," strike fear in the heart of those who worry about getting insurance to help pay for health care.
The issue of health care reform is huge for vasculitis patients and their families. To me it is a great feeling of running out of time. Not enough time to write the letters I feel need to be written.
To learn more about how to contact your legislators, see the page at the VF website: Contact Your Federal Elected Officials. Also, be sure to also check out the page on how to prepare your message.
If you are like me, you are screaming mad about all the misinformation being tossed about on the airwaves, and in the streets, by people who don't care enough to discover the facts, or who have been convinced by a minority viewpoint that the facts are contrary to their interests.
It is hard to know what is right these days, unless you really spend some time getting knee deep in this stuff, and read all around an issue. It is not enough to watch one channel, or read one newspaper. You have to work a bit to learn why people are hopping mad, and some even mad as in the Mad Hatter.
I found two media references in particular that I find useful for framing the question, "What is going to happen, and what can I do about it?"
Opinion: Health care reform dead? Think again - Breaking Bioethics- msnbc.com
"Commentary By Arthur Caplan, Ph.D.
msnbc.com contributor
updated 6:40 a.m. MT, Wed., Aug 19, 2009
From all the attention focused on the rambunctious town hall meetings, ranting about “death panels” and repetitive shrieking against government health care on right-wing radio, one might think health reform is pretty much dead in America. Think again.
Health reform is a lock to pass. The only issue is in what form. You need to look past the noise, fear-mongering, misquotes, inconsistent claims, inaccurate assertions and political gamesmanship and pay attention to what is truly at issue as Congress gets down to the business of reform in the fall. "
http://www.msnbc.msn.com/id/32468082/ns/health-health_care/
That gets the message across that you had better put your two cents in, because things are going to happen with or without your participation. Fire up the word processor, the fax machine, and the Email client, and send mail to your representatives and congress persons.
The other very interesting media bit that I came across recently was a roundtable discussion including several highly placed persons from multiple sides of this issue. It is a video about 45 minutes long, but well worth your time if you want to get a handle on this health care debate:
Hulu - CNBC Originals: Meeting of the Minds: The Future of Health Care
Watch the full episode now.
Speaking of the cost of health care, here is some data that might shock most Americans, but maybe does not come as a surprise to those of you with vasculitis:
An Unhealthy America: The Economic Impact of Chronic Disease
"In its groundbreaking study, “An Unhealthy America: The Economic Impact of Chronic Disease,” the Milken Institute details the enormous financial impact of chronic disease on the U.S. economy – not only in treatment costs, but lost worker productivity – today and in the decades ahead. It also describes the huge savings if a serious effort were made to improve Americans’ health."
http://www.chronicdiseaseimpact.com/
Once again, to learn more about how to contact your legislators, see the page at the VF website: Contact Your Federal Elected Officials. Also, be sure to also check out the page on how to prepare your message.
Whatever you do or don't do personally, be prepared for changes in the way health care is financed in this country. One way or the other, reform are coming. Act now if you want to be a part of shaping that future.
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
Or, call Joseph Carpenter at (505) 255-1366 for more information.
Thursday, January 8, 2009
NMVasculitis is on Facebook!
If you have a Facebook account, and are affiliated with the Vasculitis Foundation, or are active in the New Mexico chapter of the VF, then request to join our group!
The group is classified as "closed" because I do not want unaffiliated strangers joining and wrecking the vibe I hope will develop there.
Check it out here:
NM Vasculitis Foundation Chapter
http://www.facebook.com/group.php?gid=44602937338
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08 - Celebrating seven months without vasculitis symptoms!
Central NM Chapter - Vasculitis Foundation - http://www.nmvasculitis.org
The group is classified as "closed" because I do not want unaffiliated strangers joining and wrecking the vibe I hope will develop there.
Check it out here:
NM Vasculitis Foundation Chapter
http://www.facebook.com/group.php?gid=44602937338
: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08 - Celebrating seven months without vasculitis symptoms!
Central NM Chapter - Vasculitis Foundation - http://www.nmvasculitis.org
Saturday, November 22, 2008
New Hampshire law bans sale of prescriber-identifiable prescription drug data
Here is one example of a privacy issue that affects your health care. The case cited below related to a New Hampshire court case where data mining companies collect data about you, in order to then selel that data to various organizations for various purposes.
Lets be clear here. Some of these purposes are legitimate. Such as when a medical researcher collects data about patients in a clinical trial to figure out what works best. Or when researchers survey the larger body of patients looking for data that may identify disease trends.
The problem comes in when personally identifiable information about specific patients is collected and then sold for purposes that have NOTHING to do with their health care. One obvious example of this is when pharmaceutical companies use this data to fine turn their pitch to your doctor, so they can convince your doctor to prescribe some drug they want to sell, regardless of whether or not it may be the best treatment for your condition.
This issue relates to collected patient identifiable information which is then sold as a database for other commercial purposes.
Health care privacy is a big issue for those who have much to gain if information is shared properly and well, and much to lose if it is shared badly and without concern for the patient.
When the drug companies put sales ahead of solutions, then we have a problem. There is a reason why drug research for hair loss, obesity and erectile disfunction get the lion's share of the research funding, and rare diseases get the leftovers. There are more people with more money to spend on those drugs, than there are patients who need cures for vasculitis.
Decisions regarding what medications you should take must come from the informed partnership between you and your doctor. if either of those parties are unduly influenced, then the decision becomes biased. Would you rather take the name brand drug, or the one that works? They are not always the same thing.
I encourage all of you to keep your ears and eyes open and support anything that promotes your well being, such as a SECURE electronic medical records system that is PATIENT FOCUSED, and not that merely benefits the insurance and pharmaceutical companies, such as we have now.
Here is the latest on the New Hampshire case.
Electronic Privacy Information Center - http://epic.org/
Court Upholds New Hampshire Prescription Privacy Law
Today, the First Circuit Court of Appeals upheld a New Hampshire law that bans the sale of prescriber-identifiable prescription drug data for marketing purposes. In August, EPIC and 16 experts in privacy and technology filed a "friend of the court" brief urging the federal appellate court to reverse a lower court ruling that delayed enforcement of the New Hampshire Prescription Confidentiality Act. The experts said the lower court should be reversed because there is a substantial privacy interest in patient data that the lower court failed to consider. The New Hampshire Attorney General also defended the law, calling pharmaceutical representatives "invisible intruder[s] in the physician's examination room." Data mining companies challenged the law, claiming that the privacy measure violated their free speech rights. For more information, see EPIC's IMS Health v. Ayotte page. (Nov. 18)
Lets be clear here. Some of these purposes are legitimate. Such as when a medical researcher collects data about patients in a clinical trial to figure out what works best. Or when researchers survey the larger body of patients looking for data that may identify disease trends.
The problem comes in when personally identifiable information about specific patients is collected and then sold for purposes that have NOTHING to do with their health care. One obvious example of this is when pharmaceutical companies use this data to fine turn their pitch to your doctor, so they can convince your doctor to prescribe some drug they want to sell, regardless of whether or not it may be the best treatment for your condition.
This issue relates to collected patient identifiable information which is then sold as a database for other commercial purposes.
Health care privacy is a big issue for those who have much to gain if information is shared properly and well, and much to lose if it is shared badly and without concern for the patient.
When the drug companies put sales ahead of solutions, then we have a problem. There is a reason why drug research for hair loss, obesity and erectile disfunction get the lion's share of the research funding, and rare diseases get the leftovers. There are more people with more money to spend on those drugs, than there are patients who need cures for vasculitis.
Decisions regarding what medications you should take must come from the informed partnership between you and your doctor. if either of those parties are unduly influenced, then the decision becomes biased. Would you rather take the name brand drug, or the one that works? They are not always the same thing.
I encourage all of you to keep your ears and eyes open and support anything that promotes your well being, such as a SECURE electronic medical records system that is PATIENT FOCUSED, and not that merely benefits the insurance and pharmaceutical companies, such as we have now.
Here is the latest on the New Hampshire case.
Electronic Privacy Information Center - http://epic.org/
Court Upholds New Hampshire Prescription Privacy Law
Today, the First Circuit Court of Appeals upheld a New Hampshire law that bans the sale of prescriber-identifiable prescription drug data for marketing purposes. In August, EPIC and 16 experts in privacy and technology filed a "friend of the court" brief urging the federal appellate court to reverse a lower court ruling that delayed enforcement of the New Hampshire Prescription Confidentiality Act. The experts said the lower court should be reversed because there is a substantial privacy interest in patient data that the lower court failed to consider. The New Hampshire Attorney General also defended the law, calling pharmaceutical representatives "invisible intruder[s] in the physician's examination room." Data mining companies challenged the law, claiming that the privacy measure violated their free speech rights. For more information, see EPIC's IMS Health v. Ayotte page. (Nov. 18)
Monday, September 1, 2008
Contact Your Federal Elected Officials
Your goal is to get to know your elected official and for her or him to get to know you. Help your legislator learn about Vasculitis, the Vasculitis Foundation and important legislation. Click this image to learn more.
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