Archive for the 'Health' Category
September 18th, 2009 by Trisha Torrey
Update on this post: AdvoConnection is launched! Patients are being helped, and patient advocates are ready to help you. Learn more at: www.AdvoConnection.com.
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Hard at work we’ve been! And AdvoConnection, a dream of mine for several years, is getting ready to launch.
Since beginning my advocacy work almost five years ago, and being highly visible on the web, I hear from desperate patients on an almost daily basis:
- They cannot get an accurate diagnosis, know they need treatment, and need someone to help them find the doctors, or get the tests, that can help them.
- They are seeing too many specialists who aren’t coordinating their care. They need someone who will take a look at their reams of medical records to help them sort out their treatment.
- They are having trouble with their insurer, who isn’t paying as promised, or who is denying them care.
- They have received doctor or hospital bills that they can’t sort out or decipher. Or they believe they have been billed for services they did not receive. They’ve read that up to 80% of hospital bills are incorrect, and they want someone to help them negotiate with whomever has billed them.
- I hear frequently from adult children of elderly parents, perhaps living in a different location, who need assistance for their parents, either to help them find a nursing home, or for eldercare or home health care.
- The biggest heartbreakers are the parents who have run into brick walls trying to help their children. Or the left-behind person who lost a loved one to a medical error. They need to know who to turn to — an advocate? a lawyer? to get the support they need.
Now you can see why I wanted to develop AdvoConnection. It is a service for matching patients to the help they need in the form of patient advocates, patient navigators, billing assistance and other forms of medical system assistance that will help them navigate the waters of our dysfunctional health care system.
There are two aspects to this new site and service:
AdvoConnection for Patients – www. AdvoConnection.com – will launch October 1. Patients will be able to search for an advocate or navigator by location and service provided — at no cost to them. They will have the information they need to contact that advocate to inquire more about their services. It’s a directory type service that will help patients and caregivers find the help they need.
Any patient or caregiver who thinks s/he might need patient advocacy assistance can be added to the email list to be alerted when the site goes live (or, if you read this after October 1, 2009, go directly to the site itself.)
AdvoConnection for Advocates – http://members.AdvoConnection.com – provides advocates and navigators will the interface to be a part of the directory for patients described above. It also provides additional business services such as marketing assistance, and a forum for connecting with other advocates. By early 2010, it will also provide them with access to an ask-a-doctor service, and other services they may seek to help them grow their advocacy businesses.
Any patient advocate interested in participating with AdvoConnection may apply for membership through that site: http://members.AdvoConnection.com
August 31st, 2009 by Trisha Torrey
I’ll begin this post by saying that I understand the basics — that many parents of children with autism believe that autism was brought on by vaccines. And that scientific research has over and over again proven that link does not exist.
Then I watched the Dateline / Matt Lauer interviews and exposé, A Dose of Controversy, about where that suggestion came from, profiling Andrew Wakefield, the doctor/scientist who first suggested that link existed, and who is now hailed a hero by many of those parents who still believe in the connection. Also interviewed were two more major players in the argument – Brian Deer, a British journalist who has exposed Wakefield over and over again, and Dr. Paul Offit, infectious diseases expert from Children’s Hospital of Philadelphia, who has written a book called Autism’s False Prophets which lambasts Wakefield’s work.
Matt Lauer pulled no punches in his questioning of any of the three. It’s very clear that the worshipping behavior of these parents who believe that somehow Andrew Wakefield represents the second coming is misplaced. But even more than that – it’s very easy to see how we observers must use the follow the money rule on all three of these men. Perhaps an even bigger lesson has to do with LISTENING.
But we also must remember in the midst of this — that many studies (I can’t find a number, but it was suggested there were at least dozens) — studying, literally, MILLIONS of children — have proven every time (not just some, but every time) that an autism-vaccine link DOES NOT EXIST. Even The Lancet, a highly respected medical journal, the one which originally published Andrew Wakefield’s article about that link, has stated that they never would have published it if they had known how Wakefield’s work had been funded (see below.)
Follow the money (FTM) — it’s the rule that helps explain a lot of the “why’s” in healthcare. Here are examples, as applied to the questions about autism:
FTM explains why Andrew Wakefield would continue asserting that the MMR vaccine causes autism — because he is/was paid in at least two ways to make sure that was clear. First, he was paid at least $750,000 by a company that developed a measles-only vaccine that could have been used as a substitute for the MMR. Now, under suspicion for other (unspecified) charges in his native England, he has set up an outpost in Austin, Texas (have to wonder about the wordsmithing there — Austin and Autism) — but is not licensed to practice medicine in the United States. Parents are paying thousands of dollars to have their children tested for certain gastrointestinal problems possibly related to autism, but it was unclear as to whether any children have actually been helped by Wakefield. Further, outside of parents talking about how wonderful he is, none seemed to be able to pinpoint exactly why — except that he listens.
(All other doctors of every stripe — please take heed of that — HE LISTENS.)
Brian Deer – his FTM is a bit easier to track. He is paid to do his investigating and writing, so finding a goldmine like Andrew Wakefield is job security. It should be noted that Deer also needs the money to defend himself legally. He has been sued a number of times by Wakefield — always unsuccessfully — Deer has always prevailed, able to prove that his allegations about Wakefield were accurate and defensible.
Dr. Paul Offit requires some FTM analysis as well. Beyond the income from his book where he alleges that parents have been scammed by Wakefield for more than 10 years, he is full-on supportive of vaccines – including the fact that he is the developer-inventor of one vaccine. So yes, he makes money as the developer of the vaccine, which seems to be unrelated to autism. Interestingly, he has an expense many would not ever think of — he is forced to pay for bodyguards, because some of those Wakefield supporting parents have threatened his life.
Here are some beliefs I hold, which affect my beliefs about this controversy:
- I absolutely believe each of these parents who has observed their children well enough to say “She was fine, then she got the vaccine, and something happened.” I don’t question that for a minute, because I do believe parents are THAT WELL tuned in to their children.
- I also know human nature well enough to understand why parents cling to any belief that would help them explain something that is otherwise not understandable. As humans, we all want to assign blame. It’s the reason we can’t cope with problems like Hurricane Katrina, or any other mother nature related catastrophe — because there’s really no one to blame. By clinging to the vaccine-as-perpetrator, parents have someone to blame, plus the bonus of a hero in Wakefield. (Plus making Jenny McCarthy a hero — another story for another day.)
- When people are desperate, like these parents with autistic children, they will go to extremes, even when those extremes don’t make sense. To so desperately believe in something that has been disproven in so many ways, and to be threatening the life of someone who truly makes sense — these are moves of desperation.
Combining those beliefs, and having done a brief FTM analysis – we have to look at some bigger picture questions, too. I provide no answers here — I’m just sayin’…
- So what if Wakefield and all these parents are right? What if the MMR vaccine DOES trigger something that causes autism? Maybe it’s not the vaccine itself — maybe the child happened to have eaten something that day, or has another very mild, asymptomatic virus or bacteria in his body — or ? It could be the vaccine in a combination with something else – I do know a genetic link is being studied, too.
- Even if there is a link — how does that change things for the parents whose children do have autism? It doesn’t mean there is a cure. You can’t subtract the vaccine from their bodies. So why would parents put so much energy into their hero-making – at the expense of taking time away from their own children to do it?
- Autism is a “spectrum disorder” — is it possible it’s not just one thing? Is it possible that even though the symptoms and some of the behaviors are similar, that these children really have different disorders — triggered by different things? Whose to say that some forms of ADHD, for example, aren’t really a part of that spectrum? I know there are many discussions of misdiagnosis among both autism and ADHD diagnoses….
Finally — I believe the bottom line here is the fact that NONE OF THESE PROFESSIONALS get the fact that the passion and desperation fuel this fire and that the people who feel the most maligned (the parents who believe in Wakefield) do so because they feel that he LISTENS.
And that is the bottom line for today’s very long-winded post. We all need to listen more because listening, then responding appropriately, will lend itself to compromise and understanding — no matter what the controversy.
I’m listening — what can you tell me that will help explain what I don’t understand?
July 29th, 2009 by Trisha Torrey
As Congress continues to struggle with healthcare reform, I suggest that there is one way to look at it that might make the arguments simpler than they currently are.
I see only two points of view. No matter who you are or what your interest in reform is, you fall into one of these categories:
Lives First
(Then Money)
or
Money First
(Then Lives)
“Lives First” people understand that lives are more important than money. Not that money isn’t also important. It’s just that they believe that aspects such as no insurance denials for pre-existing conditions, or making sure rewards are in place for innovation, or assuring access for everyone (everyone must participate) or making sure there is focus on health outcomes improvement — are more important than how reform will initially be paid for.
“Money First” people understand that controlling costs and reining in spending are more important than worrying about who gets what kind of options for care or access. They understand that yes, people die or get sicker (and more expensive) when they don’t have access, but that denying access to some means others can get better care. They tell the Lives First people that if money isn’t the first consideration, then it will mean rationing for all, as if that is something new. (A bogus argument, by the way, because rationing is already a part of our care.)
Some generalizations, although I realize there are exceptions:
The Lives First people are often people who have had their access challenged due to cost (or they have watched a friend or loved one who has desperately needed access and could not afford it.) I’ve been there. Although I had high deductible health insurance when I suffered my misdiagnosis, the co-pays were back breakers. I lost every penny I had in savings just trying to keep up — all for the privilege of proving the medical experts were wrong.
The Money First people are typically people who do have access, either because their employer subsidizes their health insurance or because they are already age 65 and older and have Medicare. They see reform as something that will impinge on their income because it certainly won’t get in the way of THEIR access. They don’t need to worry about other people’s lives. They only need to worry about their money. (I have to wonder about the Medicare recipients who think money is more important – do they have this conversation with their children?)
Based on that description, which do you think I am? There’s probably not much question in your mind — but this may surprise you: My husband and I have good healthcare coverage because he is retired from the Air Force and that gives us access to a government payment system for the rest of both our lives. Healthcare reform will end up costing us more money than we pay now, there’s no doubt. Based on my own generalizations, you might expect me to be a Money First person….
But of course, I am not. I hear from too many of those people who don’t have access, who have bankrupted because of medical needs, who work up to four or five jobs just so they can buy into a high deductible, catastrophic plan, just like I had. They get sicker, or they lose a loved one, not because the care wasn’t available, but because they could not afford it, or because they were denied care since they had no insurance.
Don’t get me wrong. I understand that money is an extremely important consideration in the debate. We need to be responsible about the money questions, and yes, I get the “don’t want to mortgage our children’s future” argument. I believe we need both points of view to hammer out the best approach.
But, if you are a Money First person, I ask you to consider that Lives First may be the more fiscally responsible approach. If we build a new healthcare system that assures access, even if it’s quite expensive to begin with, then over the longer term, we will be “building” a healthier populous — one that won’t need as much of the same kind of expensive access we have today. In the long run, the system will cost far less with healthier people who won’t have to go bankrupt just to get the care they need.
Ask yourself: What’s more important to you? And which profile is yours? I wonder if maybe you’ve even put yourself into the wrong category to begin with? Does this food for thought shift your thinking at all?
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Do you have concerns about healthcare reform? Have a rumor or concern you want clarified? Pose it here and we’ll try to uncover the truth.
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June 4th, 2009 by Trisha Torrey
This story was sent to me by my friend Debi. It’s not a story about the healthcare system, but it most certainly teaches us a lesson that we can apply:
Barbara Walters, of Television’s 20/20, did a story on gender roles in Kabul , Afghanistan several years before the Afghan conflict. She noted that women customarily walked five paces behind their husbands.
She recently returned to Kabul and observed that women still walk behind their husbands.
From Ms. Walters’ vantage point, despite the overthrow of the oppressive Taliban regime, the women walked even further back behind their husbands, and seemed to appear happy to maintain the old custom.
Ms. Walters approached one of the Afghani women and asked, ‘Why do you continue with an old custom that you once tried so desperately to change?’
The woman looked Ms. Walters straight in the eyes, and without hesitation said… ‘Land Mines.’
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According to Debi (and the millions who forwarded this before her): The moral of the story is (no matter what language you speak and where you go) is: BEHIND EVERY MAN, THERE’S A SMART WOMAN.
But I actually see it a bit differently (you knew I would!)…
I think instead it teaches us that we can’t simply place judgment, or accept what we are told, or what we see, without looking behind it. Without asking why? or what else don’t we know? or for some sort of explanation.
When something doesn’t seem to make sense, then there is something we don’t know. If you are diagnosed, you need to ask, “How did you arrive at that conclusion? What else can it be?”
When your doctor tells you what treatment you need, you need to ask, “What other possible treatments are there? What do I need to know about how this treatment will affect me?”
To get the healthcare you deserve… NEVER stop asking questions.
