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Old 03-26-2009, 07:06 PM
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Exclamation Genes, insurance, law, discrimination

If anyone is considering getting genetic testing out of curiosity, you may want to think this through carefully. In the near future, if you change insurance carriers, you may have to provide that company information on your genetic test results (if they don’t already have it!). Articles I’ve read stated that this requirement was the federal law, but I am not sure if this is true, or if these laws are in flux.

Long term care insurance companies are still enjoying an odd loophole -- that may or not be fixed. This article below points to concerns from the patient perspective. If any of you have any updates on this Orwellian issue, please do share.
________________________________

Friday, Jan. 30, 2009
Privacy concerns are target of DNA bill
Legislation would forbid insurance companies from using genetic tests to reject clients, change rates
by Douglas Tallman | Staff Writer

ANNAPOLIS — Lawmakers are being asked to ponder an issue with "Brave New World" overtones. Should Maryland prevent discrimination based on the contents of a person's DNA?

"This is not unlike any other kind of discrimination in this country or in the world," said Del. Roger Manno on Tuesday before the House Health and Government Operations Committee.

"It's more sophisticated. It's more elusive. It's less understood, but it is discrimination just like any other type."

Manno (D-Dist. 19) of Silver Spring has introduced bills that would forbid insurance companies from using genetic tests to reject or change the rates in life insurance and disability insurance. The bills follow legislation enacted in 2008 that forbids discrimination in long-term care insurance.

In the 1990s, Maryland was one of the first states to prohibit genetic discrimination in health insurance.

"We're hitting all the major loopholes that exist," Manno said in a recent interview. "If we were to pass this, there's no doubt in anybody's mind that Maryland would be at the apex of genetic privacy and protections in the United States, maybe in the world. But this is a pretty ambitious agenda."

The 1990s legislation was sponsored by Sen. Jennie M. Forehand, who is the Senate sponsor on the 2009 bills.

"I think that some of these issues, as the research goes on, we need to get them clarified," said Forehand (D-Dist. 17) of Rockville.

Although the 2008 bill was passed after the legislature and the insurance industry reached a consensus, the 2009 bills are meeting resistance.
Insurance carriers are concerned about "information asymmetry," when customers know more about their health than the insurance company can find out from the medical reports to which applicants provide access.

If a person professes to have a clean bill of health, but has a genetic test that states otherwise, the person could receive life insurance at an incorrect premium, said Deborah Rivkin, a lobbyist representing insurance companies.

"When that happens too much — because people start coming in and getting information and knowledge that we don't have — the prices go up, because we haven't quoted the correct premium and the healthy individuals leave," Rivkin told lawmakers.

Besides, she said, insurance companies don't use genetic tests because they are inaccurate and expensive.

"Everything you heard today is not based on what's happening today," Rivkin said. "It's based on a fear of the unknown and a fear of something that may happen in the future."

She said that within 10 years, people will be able to order tests over the Internet, and the information could be shielded even from their own doctors.

Until then, genetic markers now help set the price of life insurance, said Ken McKusick, vice president of product development at Monumental Life in Baltimore.

"We're using these factors in order to differentiate and to rate, but in general not to decline. That's an important characteristic because no insurance company ever made a buck from anybody they declined," McKusick said.

But Del. Donna Stifler offered her family's story with cancer, which revealed her own fears of being declined for insurance. Tests have shown several relatives carry the marker for a cancer gene, she said. Several members have died or have had prophylactic surgery to remove breasts or ovaries.

She and some other members have refused to be tested, however.

"I refused and have refused to this day because I was young enough to be fearful of the manifestations of insurance discrimination," said Stifler (R-Dist. 35A) of Forest Hill.

She asked if a fear of discrimination was placing a risk on her family's health.

"We should not have the hindrance and the fear of denied insurance," she said.

After the hearing, Rivkin said existing laws should protect Stifler and her family.

Disability insurance offers another wrinkle.

Because it provides income protection as opposed to paying health claims, the coverage is different from health insurance, said Leah Walters, legislative director of the American Council of Life Insurers.

However, the National Conference of State Legislatures says 15 states have some form of restriction on discrimination in disability insurance.

Manno said he introduced the bill to clarify state law. Other statutes that affect health insurance also affect disability insurance, he said.

Regarding the "genetic loophole," he said that people are "getting turned away or summarily denied policies simply because there was a modicum of risk that they would somehow, someday get sick," he said in an interview. Insurance, he said, should manage risk, not eliminate it. If you take a large pool of people, some are high risk and very sick, and some are very healthy, and most are in between.

"By spreading that high risk over a large number of people, it makes it profitable for the companies, and it also reduces premiums," he said.

The delegate also has filed a bill that would allow individuals who believe they are the victims of genetic discrimination from their insurance carrier to file a claim in court. Under current law, the state's insurance commissioner would settle a claim, and damages could include restitution and the loss of an insurance carrier's certification.

"The commissioner has the authority to yank an insurer's right to do business in the state," said Marta D. Harting, a lobbyist representing State Farm. "I don't know what stronger incentive you need than that to prevent carriers from violating the law."

A legislative analysis said eight states allow individuals to take a genetic discrimination claim to court.

In the interview, Manno allowed that the bills have an uncertain fate.

"What I'm learning down here is, if you make progress on one issue one year, don't necessarily expect that you can come back the next year and expand it," he said. "It may take several years to get another bite at the apple."

Full article at:
http://www.gazette.net/stories/01302009/polinew200902_32506.shtml
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  #2  
Old 03-26-2009, 08:07 PM
Deborah Deborah is offline
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Default Obama's plan... computerizing medical records

Well, yeah... that's a question. On a similar and somewhat related issue... part of the big new plans being put into place is interrelated medical records. "Computerizing Medicine" It makes so much sense in so many ways... prescriptions can be easily found in any state so wherever you are, refills are simple and mistakes of conflicting scripts less likely to happen. Doctors can see the histories so tests can be compared, etc. Plus it will force even small doctors to computerize, then having access to better information, new treatment options, etc.

Of course, that also means prescriptions CAN be found from all places/states... so no one can 'cheat the system' by getting similar scripts from different doctors at different pharmacies (like say... oxcodone from pain doc and percocet from GP because the oxy just doesn't knock back the pain sufficiently). That's a good thing... since it will highlight the incredibly small group that may be getting scripts for resale, but it does also hit our personal rights a bit. Histories available to doctors are also available to insurance companies and most likely (in one way or another) even any company that might hire you. So, if you've been depressed while fighting back pain, repaired the back and off the anti-depressants... a company will see you've been treated for depression. Good? Maybe. How about the insurance company that now sees "mental disorder" or "orthopedic problems" (what if the back was hurt in an accident?) or simply "too many doctor visits" as a preexisting condition... and refuse to cover someone?

I'm an American first, then you have to layer Texan on top which is likely affecting my perspective. Quite frankly I don't think our gov't or records kept to track us, should be determining what we can do. I think all that computer power should be used to allow us to access to clear and precise information, but y'know, if Joe decides he needs another script and a doctor prescribes it, so be it. If Susie tends to lose things and misplaces her script and gets another one, it's her business. But I don't even find it appropriate for there to be work histories quite frankly... probation periods cover what someone is and isn't capable of...what they did before shouldn't be used to jade opinions of them (usually before they even get the chance to interview... I know; I did it). Anyway, I honestly do not like the thought my medical history is going to be 'out there' with comments from both qualified docs and quacks I've seen. (I wonder what it really reads like? LOL) On the other hand, it could also have docs only noting those things that are truly pertinent and appropriate for anyone to read.

In the genetic coding issue... frankly, I think the issue is the insurance side of it, not the record or information. Life insurance is generally a rip off (other than that required by businesses for key employees, I suppose). If we put aside that money wisely from an early age... just maybe it wouldn't be a consideration. Disability insurance is similar, and I do think it should kick in for all people who are wage earners... not just those who have a company that chose to add the insurance. No one should be 'planning a disability'. Yup, genetics could predict those that will have Huntington's for example, but you know... I kind of think those folks deserve the same disability insurance anyone else has.

So... I think what's important is that we pay close attention to ALL this legislation and we start NOW...SOON... to make changes at the core of insurance companies. The issues aren't the advancements in science, the issues are a completely unregulated business run amok. I'm anti regulation in general, but oversight and sensibly requiring certain equalities (like... ALL people get insurance if they pay for it or gov't provides, and ALL services are paid at a similar rate, not the huge differences now seen from company to company and the biggest hit to private pay!).

To answer the question you're actually asking, Harrison, I have to say that Hell No! I don't think we should prevent ourselves from learning all we can about ourselves. We should learn everything we can, and use those predictors to keep us healthier. I say Bull****! to being forced to avoid learning information about ME for ME.... because it could be abused? We *have* to take a strong stance to stop and even prevent abuse of our personal...everything. But fear isn't going to stop me from doing a D*&( thing.

Hmmm... sorry for the expletives. I'm visiting San Francisco and spent the afternoon at incredible Grace Cathedral and walked the labyrinths there, contemplating my path with God. I don't think expletives are a good thing, but these aren't directed at anyone... just directed at concepts. Concepts I love to consider and even debate.

Debi
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  #3  
Old 03-26-2009, 08:56 PM
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Default Right back at chya...

Debi,

Your concepts and thoughts are appreciated. And as someone from Taxachusetts, I must say as I wonder, “could I be Texan?” And speaking of expletives, how did you learn to read and write so damned fast?! Perhaps you should be working for Obama making sure he owns up to his promises…like reviewing the budget “line by line.” Right. When will that happen? !

It would appear that there are many other people that agree with your position and mine. I originally read an article in Time about all this “DTC” testing that scared the life out of me, and these doctors lament about it here: Personalized Genetic Scans: With gifts like these…

Debi, you are a great patient advocate, spouse and analyst. When Drew is back to 110%, let me know about your plans to change Washington….maybe you can help do the “line by line thing” and free up a measly trillion dollars.
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  #4  
Old 03-27-2009, 03:48 AM
Deborah Deborah is offline
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Default

It's fast because I write and hit SEND. I don't reread and just live with all the typos (which probably makes some people crazy... including myself if I read it again... ok, sometimes I *have* to read it again, but try to leave my thoughts and just fix the typos. I obviously didn't reread anything here).

I didn't know I was a Texan until after I moved there. LOL The "Don't mess with Texas" (actually at least started as a campaign against littering) slogan has a lot of meaning. Leave us alone, we want to do it our way, which is to keep as many individual rights as we can. (There's more, and <coff> it does vary a bit from town to city.) The common claim is that Texas is the only state that includes the right to choose to secede from the Union in their state constitution. I don't think that's actually true, although it does say "All political power is inherent in the people ... they have at all times the inalienable right to alter their government in such manner as they might think proper." It's that notation in the constitution along with the often repeated 'legend' that Texas is the only state specifically 'allowed to secede' that sort of defines the general attitude. In reality I believe all states have the 'right' but I think Texas is the only one that flaunts that.

So, we shall see where things go with Obama. So far, I'm somewhat pleased with the direction, which scares the heck out of me! (Welcome to my life.)

Now I'm very interested in seeing what others may have to say. (Yeah, some Texans also listen, but while rubbing the well worn handle of our favorite handgun... mine's a glock 17.)
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  #5  
Old 03-31-2009, 08:50 AM
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Default Electronic Medical Records..Computerized Medicine?

Deborah,

You’re funny and have a good command of the English language. But I hope I never meet you and your trusty Glock in a dark alley…unless you tell me a good joke before you kill me. Oops, I almost forgot you are Texan….shoot first, tell jokes later…

On this computerized medicine thing, I try to read different magazines to note the trends in how various pubs are covering changes in the biomedical area that affect us as patients. It’s an impossible chore. Conveniently, Time magazine published a recent article that got me thinking a bit more about this issue and it codified my thinking and concerns about EMR. After I read this article, it helped me decide against the EMR initiative endorsed by our new president.

There’s a long list of reasons; here are just a few:
  • HIPPA was an expensive headache for patients and doctors, even though IT consultants still love it. Why can’t we learn from past mistakes?!
  • $50 billion dollars goes to whom? What’s the problem we are solving, but more importantly, what others will result?
  • Dr. Haig eloquently expresses many other worthy concerns. After reading his take, I’ll say it my way about the future implications of EMR: take diagnostic & treatment choices away from patients and doctors and give them to…..insurance companies!
This doctor knows how the system works. And how it doesn’t. So please, please read this short article and comment when you can.

Wrong Prescription
By Scott Haig, M.D.
http://www.time.com/time/magazine/article/0,9171,1887841,00.html

Related article:
Electronic Health Records: What's Taking So Long?
http://www.time.com/time/health/article/0,8599,1887658,00.html
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Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
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  #6  
Old 04-24-2009, 12:15 PM
Deborah Deborah is offline
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Default Emr

First, you're ok in a dark alley if you behave well, just don't be on my property after dark without calling first. Other than that, its the usual 'don't commit a felony' kind of stuff. Texas is pretty normal except when it comes to protecting our families and our stuff. mildly pathetic and/or paranoid.

I obviously also lose myself in life, and lose track of where there might be a conversation on a board I've left fall flat, or off completely. My apologies. My major interest in life is actually philosophy and religion, ethics and morality, and the future of our country and world as we attempt to determine where God sits in our big plans <coff>. Healthcare is an important chunk of that, which I'm seeing evidenced in fascinating snippets such as http://www.facebook.com/ext/share.ph...u=Bbr2a&ref=mf .

This EMR issue is going to happen, I do believe it's needed. It's how it will be used that's critical overall from my perspective, requiring some new privacy legislation superseding state laws. I mean serious review of possible abuse and privacy issues and some serious lawmaking being done alongside any IT initiative.

The funding being properly used is a bigger issue. History has proven we're likely to completely blow the money on something ultimately ineffective or benefiting some single hardware or worse. If more isn't standardized what is now piles of bits of information scattered across country with a few wads here and there for varying purposes, will become a big was of information that's not useful or comparable; most likely not even effectively interfaced, beyond passing on info as if via fax.

If it's shortcut by having a list of what data needs to be nationally collectable (which is where it appears headed) being the only real requirement... I think the data collected will be outdated by the time its fully implemented... diseases cured, procedures changed, outcomes differing. Simply making certain all systems are using the same coding and have the same input/output data is the initial issue, and I can't find much on standardizing taking place.

The VA hasn't even made a system that works, with soldiers hand carrying records to their VA, then losing it all if they move. It's obvious the gov't is aware of this issue and intends to implement EMR here, to allow transition of records which will help some get more coverage, and will also rule out more using the VA system as records are interactive (comparing IRS to VA standards of income). In any case, right or wrong, the VA is an obvious base to start from. Unfortunately they are also likely the worst model to use. We should be examining the giants in healthcare providers who have the best ratings in effectiveness for patients, compare their systems (they're about the only ones that do have useful systems) and see how to interface - with each other, with the VA, with new EMR systems and with whatever gov't records its deemed necessary.

Another way of describing my concern for appropriate laws being implemented with any systems: This is a HUGE opportunity for massive abuse. However, I do NOT think that is a reason not to do it. We're better than that, and far further into the 21st century than we're thinking. It has to be done or we'll be losing ground on disease, if we aren't already. (and you thought this was because we wanted to 'improve'?)

In then end, I have no problem with big steps being taken in ways to reduce costs internally and externally. I have no problems with everything being more affordable. I'm personally convinced the fubar in healthcare insurance is the dramatic differences in compensation, requirements, etc, not the perceived cost of healthcare OR insurance.

I do believe the shift needs to be in who does what. We need doctors in IT determining codes, preferred methods, flexibility *required* (meaning if patient has diagnoses A, treatment can be from a variety of codes sorted in different ways to choose from plus room for new treatments and combinations), and assurance that its not an IT venture provided to doctors for use, but an IT venture driven by medical knowledge and standards.

I know personally that most new doctors not only want it, but feel healthcare is suffering tremendously without it. Older doctors are going to need an easy interface and bigtime training on the flexibility allowed. All doctors will need to be encouraged to continue as an Art of Medicine, not some new science of data and statistics.

Can I do it? Nope. All I have is opinions, but I, like many others far better qualified, better keep our eyes open for opportunities.

You might enjoy some of the calls for collaborative efforts such as http://www.casavaria.com/jr/2009/04/16/475/electronic-
medical-records-could-help-find-cures-speed-progress-cut-costs/. We'll see where everyone goes.

We're going to do it wrong as much as we do it right. What's important (in my humble initial opinion) is the controls put in to prevent overflow of information into the wrong hands we need to prevent, the flexibility built in for doctors to have input from research as well as statistics and be able to make use of the art they are trained to provide for the individual, the collectibility of information in a manner that there is a sleek interfaced continuing record available to all individuals about themselves and they alone should be able to give permission to any others (including the gov't) to review it, chunk by chunk (requiring appropriate ability to separate these chunks of information types).

Warm regards,

"Deborah"
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  #7  
Old 04-26-2009, 07:27 PM
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Harrison Harrison is offline
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Exclamation Good point, Tex...

Deborah,

As usual, you raise a myriad of really good points. And you seem to be very fair and objective in your assessment of EMR.

Did you see the latest story from Business Week on the subject of EMR? It’s nicely researched & written. There are many interesting points, most of which (previously) formed the basis of my concerns. Here’s my position: until most of the problems cited in the article are resolved, then spending money on these projects will trickle down to giants in the healthcare industry (GE, McKesson, Gingrich Consulting) and do little for us patients.

Can the thought leaders in health care reform slow down, think things through carefully and do something correctly? These issues are complex and have many moving parts!

_____________________

In Depth April 23, 2009
The Dubious Promise of Digital Medicine

GE, Google, and others, in a stimulus-fueled frenzy, are piling into the business. But electronic health records have a dubious history
________________________

And more importantly, referring to the intent to my original post (Genes, insurance, law, discrimination) – we all need to be very concerned with the consolidation of private and public information collected on us as individual human beings. Database aggregation, data mining and “behind the scenes information deals” aren’t even mentioned in this article, but we’ve talked about this in related topics. E.g., the ease at which detectives and skilled info-brokers can buy our individual medical records...

Ethics and the legal rights of individuals are not a priority in any of these governmental discussions; if they are mentioned, it’s a sales tactic or political rhetoric.
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  #8  
Old 06-02-2009, 04:03 PM
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Harrison Harrison is offline
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Default The Future of Unmanaged Care...

There's more writing on the wall. At least this continues to be my cynical opinion. E.g. today's news in the Wall Street Journal talks about future cutbacks in healthcare:
"...the American Medical Association, which represents doctors, is proposing to curb what it deems "overuse" in areas including Caesarean sections, back-pain management, antibiotic prescriptions for sinusitis and diagnostic imaging tests..."
___________________________

See the full article:

Health Groups Detail Plans to Reduce Costs
http://online.wsj.com/article/SB124388621755473351.html

WASHINGTON -- Health-care providers plan to help cut up to $1.7 trillion of costs over the next decade by improving care for chronic diseases, streamlining administrative tasks and reducing unnecessary care, major industry groups said Monday...
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