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Am I My Genes? The Question Of Fate, Free Will And Genetics

“I live with knowledge of my own death,” she told me. “I found out I have the Alpha mutation, and that it will eventually kill me.”

Individuals who learn they have a genetic mutation often feel this way. They may struggle to cope with this sense of fate, and frequently wonder: “Why me?”

The answers are not easy.

Genetic testing is on the rise and beginning to confront us with profound questions of who we are, and why. The human genome was first decoded only 10 years ago. But the price of sequencing the full 3 billion “letters” that make us has fallen from $10 billion per person to less than $1,000 per person, and will soon probably be only $100. Hence, many medical centers are now arranging to sequence every patients’ genome. In a few years, most, if not all of us will have our full genomes mapped, whether we like it or not. We will learn what mutations we each have, and what diseases we may get.

This knowledge can potentially help in preventing certain diseases, and determining which medications, at which doses will work best for us.

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How to Win Facebook Friends and Influence People

Instead of picketing outside company headquarters, an advocacy group is using Facebook ads to try to influence people whose profiles identify them as employees of Freddie Mac or JPMorgan Chase.

The anti-foreclosure ad campaign, which launches today, asks Freddie and Chase employees to talk to their CEOs about a veteran — a former Marine — who’s facing eviction in California.

“This is not any sort of attack on the employees there,” said Jim Pugh of Rebuild the Dream, which is running the ad campaign. “We’re trying to let them know what’s happening.”

The ad that targets Freddie Mac employees features a small picture of CEO Charles Haldeman’s face, and the message, “Freddie Mac did what???? Freddie Mac is evicting a former Marine who’s been trying to pay his mortgage. Tell CEO Haldeman to work out a fair deal with him!” according to a copy of the ad provided by Pugh.

The JPMorgan Chase ad is similar, but with a Chase logo instead of an executive’s face.

We’ve contacted Freddie Mac and JP Morgan Chase spokespeople for comment, and also reached out to Freddie Mac and JPMorgan Chase employees on Facebook. If you’ve seen one of these ads, please let us know.

Targeted online advertising is nothing new. (As anyone who has changed their Facebook status to “engaged” can tell you, a simple update can bring a deluge of new ads.) But political campaigns and advocacy groups are increasingly adopting the same microtargeting tactics that companies use.

Rick Perry’s campaign, for instance, targeted faith-focused ads to people in Iowa who listed themselves as Christians on Facebook, and ads featuring his wife to the state’s female conservatives, Politico reported.

According to FEC data, Endorse Liberty, a super PAC that supports Ron Paul, has led the way on Facebook expenditures, spending a total of $241,508 through January 2012.

And it’s not just Facebook and Google where campaigns and activists are doing microtargeting. The music site Pandora announced last year that it would be selling political ad space targeted to the zip codes of particular listeners, the Wall Street Journal reported.

There’s nothing inherently problematic about targeted ads. Campaigns have been using direct mail to target particular voters for decades. Digital targeting can be a cost-effective way of spending advertising dollars, especially for smaller groups, like Rebuild the Dream, which sees the ads as a great way to get more bang for their buck in terms of reaching their intended audience. (The group also launched a special donation drive specifically for the Facebook ad buy.) ProPublica even used Facebook ads to try to find sources for our 2009 series, When Caregivers Harm.

But as the ability to use data to reach particular people grows more sophisticated, targeting risks crossing privacy lines, as demonstrated by a recent New York Times article on how Target knew a teenage customer was pregnant before her father did.

What’s clear is that if all this microtargeting translates into electoral gains, the scale and sophistication of these efforts will continue to grow, and the data science that gained traction in 2008 will become a regular part of campaigning. In the meantime, the Obama campaign’s already substantial data team continues to hire statistical modeling analysts and analytics engineers.

The increasing ease and flexibility of online targeting also raises new questions about how politicians are presenting themselves to different audiences, how much campaigns need to tell their supporters about the personal information they collect — and what will happen to the massive databases of voter information collected during the 2012 presidential campaign. Will they be sold? Passed on to other politicians?

Rebuild the Dream, which focuses on economic issues, was launched by MoveOn.org in 2011, but has been independent since January, Pugh said. The group’s president is former Obama green jobs adviser Van Jones.

Pugh worked on the Obama campaign’s digital analytics team in 2008 while also trying to finish a Ph.D. dissertation in robotics, and later did similar work for the Democratic National Committee. He said he was not sure what kind of reaction the ads would receive.

“I would imagine that people are fairly used to targeted ads at this point,” he said. But while people who work in politics and advocacy may be used to receiving Facebook ads targeting specific causes, “It’s hard to know in advance how unusual it will seem to the employees of Freddie Mac and JP Morgan Chase.”

This piece first appeared at ProPublica.

It’s a Healthy Expense That CEOs DREAD … Well, WAKE UP!!!

Most chief executives in America DREAD the nightmare they experience each year when it comes time for their companies’ annual health insurance renewal.

Just as with any nightmare, of course, the answer is to wake up.

Unfortunately, most CEOs can’t wake up from this nightmare because they don’t have a clue how to manage skyrocketing employee health costs — now the third largest expense in business today.

That’s hardly surprising, given that the healthcare industry appears at first to be completely immune from normal market forces and economic incentives. I learned this shortly after I graduated from college with a Master of Health Administration and started running hospitals — 10 different hospitals, in fact, in five different states. And as I traveled the country, I became fascinated with the economics of health care. Costs kept surging year after year, far outpacing inflation or average earnings.

What’s more, there seemed to be a curious lack of checks and balances in the system. As providers, we all made more money the more patients we saw. The government paid us our costs, so the more we spent to attract the doctors who could admit the most patients, the more we got paid by the government.

Where were the market incentives, the economies of scale, that drive other industries? Who had a financial incentive to keep people from falling off the health cliff and getting sick? The answer is, no one did. We all made more money by driving our expensive ambulances up to the bottom of the cliff and waiting for the next person to fall off.

It’s no secret what causes people to fall off that cliff. Poor health habits represent the cause of the majority of health claims. Indeed, six out of seven full-time workers in the U.S. — that’s 86 percent of them — suffer from a chronic health condition.

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Give Young Adults Needed Privacy for Health

Under the 2010 health care overhaul, millions of young adults in the United States can access health care on a parent’s health insurance policy. That’s a good thing because it means they are more likely to get preventive care that can keep them from getting sick in the first place.

Yet a glitch in the system means that young adults might forgo treatment for conditions they don’t want their parents to know about — such as sexually transmitted diseases.

These young people are afraid, and rightly so, that an insurance company will send an explanation of benefits home to the parent who holds the health insurance policy. And that means Mom or Dad will know about the services they received at the doctor’s office.

Research suggests that young adults ages 19 to 26 will skip a visit to the doctor if they are worried about privacy. In the worst-case scenario, that translates to no treatment at all or delayed care for sexually transmitted diseases, mental health problems, substance abuse, domestic violence, unplanned pregnancies and many other serious and potentially costly conditions.

EOBs do serve an important function. These letters document receipt of health care services, listing specific information such as the type of care, the patient’s name, the provider, total payment made and the date of service. They’re required by law in most states, because they notify the patient about services received and encourage them to report errors or fraudulent billing to the insurer — and in this way, they save money for our health care system.

At the same time, this glitch in the system can negatively affect an individual’s health. For example, if a young woman doesn’t want her parents to know about an unplanned pregnancy, she might delay getting the prenatal care that helps lead to a healthy pregnancy and a full-term baby. If a young man with serious depression doesn’t get treatment, he might end up losing a job, or worse.

And if we consider the effect that this privacy glitch could have on the spread of STDs, it is easy to see this problem as a public health issue.

Chlamydia is the most common STD in the United States, causing more than a million reported cases of infection every year. Yet health plan data shows that chlamydia screening has remained below the 50 percent mark since 2000. Some experts attribute the low testing levels among privately insured young women to concerns about confidentiality.

The tragedy of the situation is simply this: Left undetected and thus untreated, chlamydia can lead to infertility, pelvic inflammatory disease and potentially deadly ectopic pregnancies. If the EOB loophole were fixed, young adults would be more likely to be screened and treated, and we would prevent many of these costly complications.

Privacy concerns might also drive some minors and young adults to visit publicly funded clinics that provide care for STDs and other conditions — usually at a reduced price that the patient pays up front. In that case, young adults get the treatment they need without a breach in privacy due to a billing disclosure. But that means your tax dollars are paying for care covered by private insurance.

These public safety net providers already are strapped trying to care for uninsured patients who cannot get care any other way. Let’s not add to that burden.

So what’s the solution?

Individual states have eliminated EOB requirements when a dependent requests a sensitive service such as testing for an  STD. For example, Washington state allows young adults to maintain privacy for such services as long as a written request goes to the insurance company.

Many insurance companies eliminate the EOB when the holder of the policy, in this case a parent, has no financial obligation. But patchwork solutions will not give young adults all over the country the privacy they deserve.

We believe the time has come for a national solution to this problem, one that might follow the example set by the state of Washington. It is time for a national policy or rule that eliminates the EOB requirement when young adults seek access to or treatment for a limited set of sensitive services and conditions.

Young adults are just that: adults. And it is time we give them the privacy they need to access services they need to stay healthy.

Denise Chrysler is director of the Network for Public Health Law in the Mid-States Region. Robyn Rontal is network collaborator for health information data sharing at the Network for Public Health Law in the Mid-States Region. The views expressed in this article are those of the authors and do not represent the position or policy of the Network for Public Health Law or its funders.

Insurance Fraud, Abuse and Waste Could Be Reduced With High Deductible Policies

There is huge amount of money expended in the American health care delivery system – 17% of the GDP. Some of it is diverted through fraud, some is garnered via abuses and a lot is due to waste.

Fraud, abuse and waste are words used by politicians frequently. How much of each is there? Are there straight forward ways to reduce them? Among the best approaches is to enlist the patient as the first line of defense – with high deductible policies.

Not surprisingly fraud is relatively common in healthcare given the huge amount of dollars involved. As Willie Sutton once said when asked why he robbed banks – “That’s were the money is.” A Dallas-area physician stands accused of systematically defrauding Medicare of $350 million largely by excessive or grossly inappropriate referrals to home health agencies. Given all of the rules and regulations, how is it possible that such a gigantic fraud could be perpetrated over a five year period with no one noticing until recently?

The extent of medical fraud is uncertain. Commercial insurers estimate about $60 billion and Medicare/Medicaid estimates about $72 billion or more per year. In 2010 the US government was able to reclaim about $4 billion and convict more than 700 individuals of Medicare fraud and abuse.

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Hurdles to Accessing One’s PHI

What is a fair price to charge a consumer to provide them a copy of their records? That is a question I’ve been pondering since a friend of mine showed me the bill from the local Steward IDN which is owned by private equity fund, Cerebus.

My friend is switching doctors due to a change by her employer in health plans. As a result, she requested a copy of her records to bring with here to her new physician. Seems like a pretty simple, straight-forward request. Steward was more than happy to provide those 10 pages of records and following is the cost breakdown they wished to charge her:

Clerical fee: $18.04

Cost/pg: $0.61

Mailing cost: $1.16

Total Cost:  $25.30

Two dollars and fifty cents a page – Outrageous!

When I asked for a full copy of my pet’s records, about 20pgs, the Vet was more than happy to oblige, for free. When I asked for  full copy of my car repair records (5yrs worth) as I was selling the car, my local mechanic was more than happy to oblige, again for free. So why is that when one asks for a copy of their medical records, which frankly they already paid for in their office visit charges, a company like Cerebus/Steward feels they have the right to charge such an exorbitant sum? Creating such hurdles to a patient’s ability to access their own personal health information (PHI) does nothing to improve healthcare delivery. Its time to put an end to such charges once and for all.

Sad thing about this whole story though is that under Massachusetts statute, Steward is allowed to charge up to $25.00. They discounted the bill $0.30 and lowered the bill to $25.00  Needless to say, I advised my friend to ignore the bill.

John Moore is an IT Analyst at Chilmark Research, where this post was first published.

Ask Not What Your Dog Can Do for You…

Every day, it seems I read about some wonderful thing our dogs do for us.

They cure our stress, they lower our blood pressure, they help our cholesterol. They find us when we’re lost, they sniff out our diseases, they wake us up in the middle of the night when the couch is on fire. One of them even helped us get Bin Laden.

And, really, I thank them for all of that. I love them dearly.

But love is a two-way street. Generally speaking, a little unreserved and unqualified affection is the least they can do.

With some notable exceptions — like people who shouldn’t even be allowed to own a houseplant and the occasional blood-sport sadist like Michael Vick (and no, I still don’t forgive), dogs have a pretty good deal.

We have two of them. I still find that interesting, because for much of my life, I happily assumed I would never have one. A very determined little girl changed that.

Neither my husband nor I had a dog growing up.

The closest thing to a pet in the home of my fastidious single mother were dust bunnies. I used to name them. My husband grew up in a Bronx apartment so small that his bedroom was a hallway. Not much floor space for a four-legged friend.

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IPAB Is Not the Solution

Imagine that your loved one required surgery, yet you were told by the government that the procedure was unnecessary and wouldn’t be covered by Medicare. A Medicare program with the Independent Payment Advisory Board (IPAB) crafted by President Obama ensures that this dilemma will become reality for countless seniors.

Since “ObamaCare” was passed into law, the American people have taken former House speaker Nancy Pelosi‘s advice and looked into the bill — and they don’t like what they see. Broken promises and an enormous price tag merely scratch the surface. Like an onion peeling back, ObamaCare continues revealing new and dangerous layers.

Besides costing our economy $1.8 trillion, raiding the Medicare program and violating our constitutional rights with the individual mandate, ObamaCare’s “cost-cutting” IPAB panel has the power to ration Medicare services for millions of seniors. Unless Congress can find equivalent savings, this 15-member board will mandate automatic Medicare cuts.

As a physician with more than 30 years of experience, I consider the doctor-patient relationship sacrosanct. IPAB is dangerous for many reasons, but above all, it drives a wedge between physicians and their patients. Health care decisions should be weighed carefully by patients, their family members and their doctor — not by Washington bureaucrats.

Without full repeal, this unelected, unaccountable and undemocratic denial-of-care board will shift decisions away from physicians and patients, bypass congressional oversight and focus on slashing Medicare costs instead of improving quality of care.

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5 Things Parents Should Look for in Their Children’s Medical Record

Many of us are clueless about the valuable information contained in our children’s medical records. Knowing what’s there can help us make smart decisions; not knowing can leave us navigating in the dark. Getting ahold of your child’s records has never been easier – or more important. It’s powerful knowledge anytime, and all the more so during the holiday travel season when you might be seeing an unfamiliar face in a clinic or ER.

Here are five things I think parents should look for in their children’s medical record and have at their fingertips:

1. BMI Percent – Parents are often stunningly wrong about whether or not their children are at a healthy weight, highlighted by a study released December 2011 in the Archives of Pediatrics and Adolescent Medicine. We are so familiar with our kids – and so many of their peers are overweight – that they often look normal to us even when they are not. And more than 75% of parents of overweight children aged 2 to 15 report never being told the child is overweight by the pediatrician – it can be uncomfortable to talk about and difficult to hear.

But childhood obesity is the great epidemic of our time, one of the biggest threats to our kids’ health. What’s a parent to do?

Know your child’s BMI Percent. The Body Mass Index is a calculation that looks at appropriate weight for height for a given age and gender. If children’s BMI is below the 5th percentile, they are likely underweight. If they are at the 85th percentile or above, they are likely to be overweight. Above the 95th percentile? Obese. Knowledge is the first step toward health.

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