Support for LateToSchool

jym626 · March 28, 2008, 6:59pm

Got it, LTS. Sending many emails with references and comments from my peers your way. Please let me know if they are of help. Some of my colleagues asked some additional questions, which I sent you backchannel. If you have any additional info from the scans, I’ll forward that on to my listserv.

mominva · March 28, 2008, 7:00pm

Cherry Blossoms
LTS, take the time you need and deserve…
just post where and when…
(Smithsonian station is closest to the Tidal Basin)

mafool · March 28, 2008, 7:01pm

Just saw the cherry blossoms in DC, on NBC nightly news, and smiled as I thought of you, LTS.

mafool · March 28, 2008, 7:06pm

Cannot take any credit for the drink recipes for either the Spandrel or the Cherry Blossom! I merely suggested the names (and that the Spandrel should be vodka!)

To you, LTS!

jym626 · March 28, 2008, 9:19pm

The drink we originally named for you in SA was “moxie”, but it turns out there really already IS a drink (softdrink) called Moxie! Who knew!

mafool · March 28, 2008, 9:26pm

^^^oops, jym626. That was “before my time.”

(I am a new denizen of Sinners Alley)

CountingDown · March 28, 2008, 9:39pm

LTS,
Next weekend is fine. Any time, any place. Have already told DH of my plans.

We went down to see the cherry blossoms today – the rain held off and it was sunny and breezy. Not too crowded, relative to the throngs that will be there this weekend for the marathon, Cherry Blossom festivities, kite-flying contest, etc.

Every year since the kids were born, we have gone down to the Tidal Basin and I’ve taken their pictures under a particular cherry tree. One of these days I have to actually assemble all eighteen pictures into one frame!

latetoschool · March 28, 2008, 10:36pm

Faline, you got it. Since diagnosis I estimate I have spent over $3,000 downloading various studies and reports out of Journal of Onc and other periodicals. Then, more time reading over the articles again and again and again trying to comprehend them, eating up lots of valuable time that is not being spent with my clients, and the non-work parts of my life. I am not a doctor; I am a high school drop out who has not visited a formal classroom since 10th grade or so. So you can imagine what it takes for me to comprehend what I am reading (against my will, on a daily basis, I am forced to learn new words that I would prefer to not know), and try to align what I am reading into concise, straightforward dialog for my medical providers, actually comprehend what they say in response, and execute decisioning on a treatment plan.

But the other side of this is generally speaking, my sense of the industry is that oncologists as a group are terribly challenged for time. Some of this is certainly because of cancer striking 1 out of 4 persons; but a lot of it is due to economic pressures, recent changes to Medicare, insurance company games, and no offense against legal counsel, especially Epistrophy and the other lawyers here, but unrestrained frivolous lawsuits against medical practitioners surely haven’t helped much. So since their time appears to be so compressed, I don’t see where oncologists have a whole lot of time to entertain endless questions, and sometimes naive and frivolous questions, and, when you further consider that the majority of lung cancer patients probably tend to be of lower socioeconomic status, one can imagine what sorts of questions oncologists might get cornered with.

(Happily for me, my current oncologist actually spends time with me, not only in person but also actually calls me on the telephone. And my radiation oncologist, I actually have his home telephone number. I never had anything close to this level of attention in Miami. But even with this sort of access, I still need and want the information pulled from reports, because one or two opinions, even based on extensive successful experience, does not satisfy me; it shouldn’t satisfy anyone else, either.)

There has to be some solution to this. People who have serious illnesses are desperate for information; doctors have little time, and searching the internet yields horrors.

As a side note, most people don’t realize that even the best search engines only access about 17% of cached web pages at any one time, and that a google search yields only google’s version of whatever their spyders went out and captured most recently. There are an estimated 700 qunitillion websites and documents in the hidden internet - these are sites and documents that are not indexed and will never be captured by any search engine. There have to be simply nuggets of gold in that supply of information. The average cancer patient can only hope to find small bits and pieces of the total brain trust of information actually available about THEIR specific disease, even if we have thousands of dollars to spend, and lots of time to throw at it.

How in the world to fix it…find a cure for this stuff is the only thing I can think of; it all comes full circle back to electing the right leadership, and getting adequate funding in place for research…in other words, no solution any time soon.

latetoschool · March 28, 2008, 10:41pm

Jym626, I answered you, and sent to you the text from the MRI. Please send my thanks to the listserve.

Re cherry blossoms, I am good with either next Saturday or Sunday, does everyone else have a preference?

overseas · March 29, 2008, 1:31am

LTS,hey, I copied and pasted one of your comments on the spiders and consequently the surfers accessing such a small part of what is out there on the internet. It’s a reminder to me, to include it with a lesson coming up for my 18 year old no-it-alls. That is why public and accessible university/college libraries are so important for us. Communities can purchase the expensive databases for use by their citizens. Librarians can help in the searches. Maybe Franklin didn’t see the internet coming, but he understood how important information was for the health of a society in more ways than one.

As I was writing this I got one of those cancer newletters describing the results of the latest study on bone health…I also got a text message on my cell from a good friend on the west coast who is about 2 years out from her lung cancer diagnosis. She was pretty intensely involved to get the best care as well.

My best…

jym626 · March 29, 2008, 1:37am

mafool-
It was actually just a few weeks ago that we discussed naming a drink for LTS in SA (see post #10198 – its the start of the discussion and putting the plan into effect). As far as I am concerned, the more named drinks the merrier for LTS! And welcome to SA!!

LTS-
I posted your additional information to my listserv and will send you shat I get. I have sent you a link to a site that gives you free access to some psychology/neuropsychology journals. It probably isnt as good as pubmed or medline, but its free!!! See what you cant find there. Any academic/faculty folks on this list can probably help you with free access to library/journal info as well. Anyone out there a university faculty member??

jym626 · March 29, 2008, 1:47am

LTS-
Here’s a link to the pubmed site that should get you free copies of some of the older medical journal articles <a href=“http://www.ncbi.nlm.nih.gov/sites/entrez?db=pmc[/url]”>http://www.ncbi.nlm.nih.gov/sites/entrez?db=pmc</a>

Here’s their main site/homepage for the newer articles <a href=“http://www.ncbi.nlm.nih.gov/[/url]”>http://www.ncbi.nlm.nih.gov/</a>
See if this helps too.

epistrophy · March 29, 2008, 1:47am

FYI, I came across this organization the other day, which (irrespective of what one might think about the legal difficulties, etc., that Michael Milken had in the past) looks potentially very intriguing and worthwhile:

FasterCures is dedicated to saving lives by saving time. Our mission is to identify and implement global solutions to accelerate the process of discovery and clinical development of new therapies for the treatment of deadly and debilitating diseases.

FasterCures is a force to catalyze systemic change. We:

<pre><code>* Evaluate current systems of disease prevention, research, development, and treatment;

Identify barriers to efficiency, effectiveness and expediency in those systems;

Create achievable action plans to improve those systems;

Provide seasoned leadership and expertise in implementing those action plans in concert with organizations searching for new medical solutions.
</code></pre>

FasterCures distinguishes itself as an “action tank,” reflecting our aggressive efforts to remove the barriers that slow the discovery and development of new medical solutions.

Based on our work and input from the medical research community, we have drafted an Acceleration Agenda that addresses the need for change in three key areas. By implementing this strategic plan, we believe that we can make the complex machinery that drives breakthroughs in medicine work for all of us faster and more efficiently.

[FasterCures:</a> Mission](<a href=“http://www.fastercures.org/sec/mission]FasterCures:”>http://www.fastercures.org/sec/mission)

<hr>

Medical malpractice litigation raises a lot of different issues; consider, for instance, the following article (and in the meantime, hey, don’t worry about ever causing me any “offense” by criticizing the behavior of some lawyers - just as I wouldn’t presume to take credit for the many noble acts that other lawyers have performed, I don’t feel responsible in the slightest for the less-than-noble acts of others):

“The Medical Malpractice Myth
Forget tort reform. The Democrats have a better diagnosis.”

The Republican answer to runaway health-care spending is to cap jury awards in medical malpractice suits. For the fifth time in four years, Senate Majority Leader Bill Frist tried and failed to cap awards at $250,000 during his self-proclaimed “Health Care Week” in May. But this time, the Democrats put a better idea on the table.

Sens. Hillary Clinton and Barack Obama also want to save on health care. But rather than capping jury awards, they hope to cut the number of medical malpractice cases by reducing medical errors, as they explain in an article in the New England Journal of Medicine. In other words, to the Republicans, suits and payouts are the ill. To the Democrats, the problem is a slew of medical injuries of which the suits are a symptom. The latest evidence shows the Democrats’ diagnosis to be right.

The best attempt to synthesize the academic literature on medical malpractice is Tom Baker’s The Medical Malpractice Myth, published last November. Baker, a law professor at the University of Connecticut who studies insurance, argues that the hype about medical malpractice suits is “urban legend mixed with the occasional true story, supported by selective references to academic studies.” After all, including legal fees, insurance costs, and payouts, the cost of the suits comes to less than one-half of 1 percent of health-care spending. If anything, there are fewer lawsuits than would be expected, and far more injuries than we usually imagine.

As proof, Baker marshals an overwhelming array of research. The most impressive and comprehensive study is by the Harvard Medical Practice released in 1990. The Harvard researchers took a huge sample of 31,000 medical records, dating from the mid-1980s, and had them evaluated by practicing doctors and nurses, the professionals most likely to be sympathetic to the demands of the doctor’s office and operating room. The records went through multiple rounds of evaluation, and a finding of negligence was made only if two doctors, working independently, separately reached that conclusion. Even with this conservative methodology, the study found that doctors were injuring one out of every 25 patientsand that only 4 percent of these injured patients sued.

The Harvard study stands for a large body of literature. On their own, however, the results don’t disprove the Republicans’ thesis that many medical malpractice suits are frivolous. Maybe badly injured patients don’t sue, while the reflexively litigious clog up the legal system, making tort reform a viable solution. But a new study, released in May, demolishes that possibility. Dr. David Studdert led a team of eight researchers from Harvard School of Public Health, Brigham and Women’s Hospital, and the Harvard Risk Management Foundation who examined 1,452 medical malpractice lawsuits. They found that more than 90 percent of the claims showed evidence of medical injury, which means they weren’t frivolous. In 60 percent of these cases, the injury resulted from physician wrongdoing. In a quarter of the claims, the patient died.

When baseless medical malpractice suits were brought, the study further found, the courts efficiently threw them out. Only six of the cases in which the researchers couldn’t detect injury received even token compensation. Of those in which an injury resulted from treatment, but evidence of error was uncertain, 145 out of 515 received compensation. Indeed, a bigger problem was that 236* cases were thrown out of court despite evidence of injury and error to patients by physicians. The other approximately 1,050 cases, in the research team’s opinion, were decided correctly, with damage awards going to the injured and dismissal foiling the frivolous suits.

Nor is there evidence to show that the level of jury awards has shot up. A recent RAND study looked at the growth in malpractice awards between 1960 and 1999. “Our results are striking,” the research team concluded. “Not only do we show that real average awards have grown by less than real income over the 40 years in our sample, we also find that essentially all of this growth can be explained by changes in observable case characteristics and claimed economic losses.”

Which brings us back to the Republicans’ and Democrats’ divergent approaches. The Obama-Clinton legislation fits well with Studdert’s and RAND’s findings. It also builds on successful efforts by the nation’s anesthesiologists and a few hospitals to reduce their medical malpractice payouts.

Anesthesiologists used to get hit with the most malpractice lawsuits and some of the highest insurance premiums. Then in the late 1980s, the American Society of Anesthesiologists launched a project to analyze every claim ever brought against its members and develop new ways to reduce medical error. By 2002, the specialty had one of the highest safety ratings in the profession, and its average insurance premium plummeted to its 1985 level, bucking nationwide trends. Similarly, feeling embattled by a high rate of malpractice claims, the University of Michigan Medical System in 2002 analyzed all adverse claims and used the data to restructure procedures to guard against error. Since instituting the program, the number of suits has dropped by half, and the university’s annual spending on malpractice litigation is down two-thirds. And at the Lexington, Ky., Veterans Affairs Medical Center, a program of early disclosure and settlement of malpractice claims lowered average settlement costs to $15,000, compared with $83,000 for other VA hospitals.

Clinton and Obama would offer federal grants and support to unroll such programs nationwide. And they want to create a national database to track incidents of malpractice and fund research into standards, procedures, and technologies that would prevent future injuries. So, what say you, Bill Frist? Is it time for another Health Care Week?

[The</a> medical malpractice myth. - By Ezra Klein - Slate Magazine](<a href=“http://www.slate.com/id/2145400/]The”>The medical malpractice myth.)

epistrophy · March 29, 2008, 7:07am

“giving 'em hell”

Let me preface thsi by appologizing for being long winded, poor spelling and getting on my advocate soap box, but you asked for it so here it is

As a stage 4 Lung Cancer survivor with tumors through out my body I made a decision to either sit and wait for somebody to make things happen and get treated if I live that long, or get focused and help make things happen I believe in making things happen. I never waite for somebody else. " Nothing happens until somebody does something"

I was shocked that there have been very few changes in lung cancer over the last 40 years and that the life expectancy has not changed since the Nixon administartion when he waged war on Lung Cancer. 15% lung cancer patients with a 5 year survival rate and most of those are early detection. Most such as myself had a pain, mine was in my leg. I was diagnosed with stage 4 thoughout my body, more tumors than sand on the beach. 2 tumors or 200 the result is the same.

By the way there is no history of cancer in my family, I never smoke, never ever had a drink including beer, have not eaten red meat in 26 yrs, worked out 2-3 hrs a day 6-7 days per week. Pretty good shape. My mother died at 100 my father at 90. I only had 4 sick days in almost 30 yrs. and never even took an Asprin. Never got sick.

Since I go to Emory-Winship Cancer Center in Georgia I decided to help them. They have great research, one of the best research teams in the country brought in from the best cancer centers such as MD Anderson, Sloan, and others but NO money for Lung Cancer Research. I started banging on doors and “yes” I got appointtments. I was odd, a living Lung Cancer person wanting to make things happen. most people say I am a “Lung Cancer Survivor” That my friends is an Oxymoron.

Emory asked me to be an advocate for the “Lung Cancer research Team” I eagerly took it and also joined the Lung Cancer support group at the hospital. It is 1 of 2 support groups in Georgia. Support groups are great they consist of a lot of people who sit around once a month and talk about how sick they are. One man a successful builder stood up crying that he has a tumor. I offered to share some of mine but he refused. I can not understand why. Only one lady who I call my partner started working as a team. The support group people who are dying will not even sign a pertition to fight for state or federal monies, I bring books to help them understand, they refuse them. Thats right they do not take one book. They complained because I would talk about helping the hospital help us, lets pitch in and get recognition and money for Emory. NO< NO< NO. You have heard of the Ostritch. Put your head in the sand and nobody will see you. Sorry its not for me. I quit. It was like arranging the deck chairs on the Titanic, better just to get off and start swimming.

Over a period of 6 months my team, Linda with a medical background, Tammy with great fund raising skills and me, past International speaker and ability to get to any person, we made things happen. Boy did we make things happen, and they “Ain’t seen nothing yet”.

We have a celebrity golf tournament set up for October. people flying in from all over including Canada and a Senator or 2. It will be big, very big, there will also be an auction. We should raise after expenses approx. $1/2 million. We have the 2 national Senators firmly behind us in Washingtom along with a Congressman. At least 5 State Senators who have given us the nod. We joined Lung Cancer Alliance in DC. The only 100% Lung Cancer group in the country. web site name below… We are now the Georgia advoctes for LCA. We have been asked to attend a conference in DC in April for Lung Cancer and attend meetings on the hill. We have now started our own chapter of LCA - Georgia we tie in directly with Washington so we are much stronger to fight. We are going after the $48 billion yes thats BILLION awarded to Georgia but Lung Cancer never sees a penny of it. It all goes to “Friends and pay offs” by the Governor and senate. Do not be alarmed each state received BILLIONS of $$$ and spend NOTHING ON CANCER especially LUNG CANCER. They got the award settlements because cigarettes gave people Lung Cancer and YOUR state kept it ALL for them selves, Golf courses, streets, pay backs, debits, etc. We are going after CDC with the LCA they get million of $$$ a year from the feds to spend on Cancer, They NEVER spend a dime on Lung Cancer. We have all of the contacts. How about American Lung Association, NO Lung Cancer, yes on breast cancer and prostate cancer but Lung Cancer is lumped in with a series of 6 or 7 other respitory diseses. The Biggest killer in the country and its lumped in, Why? I was told because your people do nothing and they all die. GOOD ANSWER, right.

NCI a fed agency in DC is another we are going after because they give where they get the most bang for the buck the Director VonEschenbach well I will not say what I think because i could get sued. I have articles writen by major newspapers, We give exclusives to the biggest papers (it works) NY Times, AJC, ABC TV and others.

If you think anybody cares they don’t. why because we (Lung Cancer) do nothing. Prostate Cancer has a 98% survival rate why because of 1 man the junk bond King who was in jail and took action, Breast Cancer a 98% survival rate. Why 1 womans fight and is so recognized that everybody wants to give $$$. Lung Cancer on the other hand, no change. Why? Nobody does anything except talk like the support groups at the hospital…Nobody cares.

What can 1 person do??? PLENTY if you want to. 1st you must get off of your behind, stop crying, start living and “Give 'em hell”

<a href=“http://elevitt.redtoenail.org/[/url]”>http://elevitt.redtoenail.org/</a>

Karen_Colleges · March 29, 2008, 7:11am

Randy Pausch had been mentioned a couple times on this thread, so I thought I’d pass this on.

He has a book coming out in April called ‘the Last Lecture’ and Diane Sawyer/ABC are doing a TV program about him on Wednesday, April 9th at 10pm.

binx · March 29, 2008, 10:34am

I wish I knew the answers to the health care problems. I was laying in bed last night trying to think it through. In the past week, I have had two migraines come out of nowhere - haven’t had one in years, and never one this severe. Wednesday afternoon I spent at the ER after I lost some of my vision. A brain scan showed “nothing” (sometimes I believe that literally.) I was told to get a follow-up appointment with an internist and a neurologist. I got recommendations, called the doctor, and found out he doesn’t take my insurance. I’m back to square one, and not sure I like having to go to the “cheapest” doctor. But I can’t afford the good guy.

I don’t like that insurance companies shop around to find PPO’s who agree to take a fraction of the cost, then I have to go to these guys or pay way more - higher deductibles, higher per-service. It’s back to what LTS has complained of many times - that only the wealthy can afford quality care, and the rest of us get WalMart doctors.

I wish the doctors would band together (I know it’s probably illegal - a violation of anti-trust or something) and agree upon minimum charges with insurance companies, so that some can’t low-ball. And I wish if doctors were willing to take lower prices from certain insurance companies that they would at least offer these lower prices to patients who choose to go outside their PPO docs. And I wish insurance companies weren’t allowed to have a separate deductible for out of network docs. (That is, have the higher deductible, but be required to apply it to the in-network deductible, too. Not double dip.)

Anyhow, all this doesn’t have anything to do with LTS’s specific situation; I’m just ranting.

LTS, I’m coming to DC next week (7th) for a week to spend with my H’s aunt. If I’m there during any get-togethers, I’d love to join in. Not looking forward to the long drive up there alone, but I keep reminding myself you did it!

jym626 · March 29, 2008, 10:52am

Hey binx-
So sorry to hear about the HA’s and trouble getting to a neurologist. While I wish Dr.s could discuss rates, fees etc, unfortunately you are correct-- it is a violation of antitrust laws. Soooo inconsistent-- the insurance companies can discuss the painfully low rates they will allow for in-network Drs. and in essence engage in price-fixing for the Drs willing to sign the insurance contracts, but the Drs. aren’t even supposed to discuss their rates or even whether or not they are staying in or resigning from a network. I agree with LTS, it is a broken system. The insurance companies and the middlemen are making a fortune, and they are outsourcing the claims and benefits jobs-- and the right hand often doesn’t know what the left hand is doing . So benefits quotes one thing, and claims does another. But I digress… sorry…

If you want to get a list of which neurologists are in network on your insu. plan in your part of town, I’d be happy to let you know who I know. I’ll be back in town Mon. night. Happy to help! Feel better.

Byt he way, there was a note in a pts chart many years ago that still makes me laugh. It is akin to what you said. It said “xrays of her skull showed nothing”. LOL!

epistrophy · March 29, 2008, 10:55am

Re problems generally with the state of health care, insurance coverage, etc., in this country, the website of Dr. William Buchholz (the oncologist I corresponded with recently, see #2081) has some interesting observations:

Comprehensive care for the patient and family with cancer

<pre><code> Our health care delivery system is broken. In an effort to contain costs the traditional healing relationship between patient and physician has been devalued and subordinated to an economic relationship between insurance companies or HMOs and covered lives. Medical decisions are often based upon costs rather than caring. Patients and physicians alike are dissatisfied with inefficient bureaucracies, fragmented health care and disrupted relationships. The central goal of medicine–to make and keep patients healthy–has been lost. The real center of the medicine–the doctor-patient relationship–has been lost.

    While the culture struggles to find solutions to these problems we propose a Common Sense Model of Medical Care based upon an educated partnership between patient and physician.  Insurance is necessary to pay for care but should not determine care.  Physicians are expected to consider the needs of the whole patient, proving direct medical care, education, and preventive services.  Patients are expected to be active partners, working along with their doctor, pursuing common goals. 

    Education is a necessary part of any treatment program.  We either provide or refer to classes on stress reduction, exercise, nutrition, developing healthy pleasures, understanding medications, motivation and motivational blocks, dealing with depression, dealing with panic disorders, etc.

    No one medical system has all the answers.  Illness affects both body and mind, emotions and spirit, the individual and the family.  For many serious illnesses full recovery requires addressing all of these: the physical effects on the body, the psychological effects on the mind, and the impact on the family system.  Conventional medicine is very good at treating certain problems such as some cancers, pneumonia, heart attacks, etc.  Psychotherapy is effective in treating emotional problems such as depression, anxiety, and family crises.  Complementary therapies have value in treating many problems that are not effectively addressed by conventional practices. When all of these are integrated, they offer a broader approach to complex problems than any one discipline can provide.

    We see patients in PPOs and various health plans.  We recognize, however, that what the insurance companies define as a covered benefit and are willing to pay for may not be adequate to solve the health problems patients have.  We urge you to accept the fact that insurance will not cover all of your medical expenses and be prepared to self insure for the services you want or need.

</code></pre>

[Buchholz</a> Medical Group](<a href=“http://www.buchholzmedgroup.com/philosophy.html]Buchholz”>Buchholz Medical Group)

<hr>

(As an aside, the problems with the mental health care system tend in most respects to be even greater than those with the physical health care system. Even many of the best health insurance policies have severe restrictions when it comes to mental health treatment. This is one reason why my wife, who was trained as a clinical social worker [doing psychotherapy, etc.] left that specialty to become [happily] an elementary school social worker several years ago; she didn’t want to have to spend her time begging, and fighting with, insurance companies. [Of course, even thinking about these issues in terms of a mind/body split is more misleading than it is illuminating, but that’s the dichotomy that still prevails in the health insurance world.]).

latetoschool · March 29, 2008, 10:55am

Binx, I am so sorry you are having migrains but I am greatly relieved your brain scan is clear.

Speaking of Walmart, please read this absolutely horrific story about Debbie Shank - the five year survivor in Texas sent it to me last night, hopefully this doesn’t violate TOS:

<a href=“Brain-damaged woman at center of Wal-Mart suit - CNN.com”>Brain-damaged woman at center of Wal-Mart suit - CNN.com;

Bottom line, Walmart successfully sued her for the money they paid for her health care while she was being covered by their plan; apparently this is somewhat normal. What makes the story so horrific is that her son was killed in Iraq one week after she lost her appeal. Walmart, if it chose, could have opted for compassion, an exception, but so far has not…and I will never, ever shop there again, for anything.

Binx, safe driving and hope to see you next week!

latetoschool · March 29, 2008, 11:00am

Epistrophy, Buckholtz makes a lot of sense. If my insurance won’t pay for something, I am fully prepared to pay for it myself. I haven’t had a problem yet, however, it’s interesting to note that only recently have insurance companies started authorizing PET scans for small cell…

By the way, if appropriate, if you will convey to him my appreciation for his responsiveness to your inquiry. I sincerely appreciate it.

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