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Protect Patients' Genetic Information

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In combination with the new penalties for violations of the HIPAA Privacy Rule, a use or disclosure of genetic information in violation of the HIPAA Privacy Rule could result in a fine of $100 to $50,000 or more for each violation.

The interim final rule will help ensure that genetic information is not used adversely in determining health care coverage and will encourage more individuals to participate in genetic testing, which can help better identify and prevent certain illnesses.

"Echoing the late Senator Ted Kennedy, our efforts to protect Americans undergoing genetic testing from having the results of that testing used against them by their insurance companies is one of the 'first major new civil rights' of the new century," said HHS Secretary Kathleen Sebelius.

Consumer confidence in genetic testing can now grow and help researchers get a better handle on the genetic basis of diseases. Genetic testing will encourage the early diagnosis and treatment of certain diseases while allowing scientists to develop new medicines, treatments, and therapies.

The interim final rule with request for comments and the notice of proposed rulemaking implement Title I of the Genetic Information Nondiscrimination Act of 2008 (GINA). Under GINA, and the interim final rule, group health plans and issuers in the group market cannot:

  • increase premiums for the group based on the results of one enrollee's genetic information;
  • deny enrollment; impose pre-existing condition exclusions;
  • or do other forms of underwriting based on genetic information.
  • In the individual health insurance market, GINA prohibits issuers from using genetic information to deny coverage, raise premiums, or impose pre-existing condition exclusions.
  • Group health plans and health insurance issuers in both the group and individual markets cannot request, require or buy genetic information for underwriting purposes or prior to and in connection with enrollment.
  • Plans and issuers are generally prohibited from asking individuals or family members to undergo a genetic test.

"Today's genetic technologies yield data that are vital to helping Americans make personal, medical decisions. It is essential that we protect such information and ensure it is not misused by health plans or insurers," said Labor Secretary Hilda L. Solis. "The rules issued today protect individuals against the unwarranted use of information related to their personal health because no one should have to fear that disclosure of their medical data will put their job or health coverage at risk."

Additionally, HHS, through its Office for Civil Rights (OCR), issued a notice of proposed rulemaking with a 60-day comment period, to propose changes to the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule to prohibit health plans from using or disclosing genetic information for underwriting purposes.

Please visit http://edocket.access.gpo.gov/2009/pdf/E9-22504.pdf to view the new regulations and www.dol.gov/ebsa for more information about them. For additional information on the OCR notice of proposed rulemaking, please visit: www.hhs.gov/ocr/privacy.

HHS Secretary Kathleen Sebelius released a new report, Preventing and Treating Diabetes: Health Insurance Reform and Diabetes in America.

"Americans with diabetes are suffering in our current health care system," Secretary Sebelius said. "Health insurance reform will help ensure these Americans can get the prescription drugs and supplies they need and bring down premiums so all Americans can have high-quality, affordable health insurance."

As affordable treatment remains inaccessible to many Americans suffering from chronic diseases, people with diabetes shoulder some of the nation's highest health care expenses.


Annual health care expenses for a diabetic topped $11,477 in 2007.


The report notes:

  • One in six individuals with diabetes report avoiding or delaying needed medical care because of cost. A box of 100 test strips for blood sugar monitors can cost up to $60 while the price of a vial of insulin can range from $30 to $70, mainly because generic brands are not manufactured in the United States.
  • A study showed that 80 percent of people with diabetes went uninsured after having lost coverage due to health insurance transitions triggered by job change or layoff, a move, divorce, graduation from college, or a change in income or health status.
  • If all states improved diabetes control to the level of the top four best performing states, at least 39,000 fewer patients would have been admitted for uncontrolled diabetes in 2004, potentially saving $216.7 million.
  • Fourteen percent of American Indians, 12 percent of African Americans, and 10 percent of Hispanics have type 2 diabetes. These rates of diabetes are greater than in the non-Hispanic White population, which has a rate of only 7 percent.

The report outlines the ways health insurance reform will lower costs and improve access to quality health care services for Americans with diabetes. Health insurance reform will lower health care costs for people with diabetes by capping annual out-of-pocket expenses, eliminate discrimination for pre-existing conditions and health status, create a health insurance exchange so families can shop for suitable plans, provide coverage for preventive screenings, and reduce health disparities so that all Americans can have access to quality, affordable health care.

To learn more about how health insurance reform will help Americans with diabetes and view the complete report, visit www.HealthReform.gov.

The Dartmouth Atlas of Health Care Costs

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Having just tried to find more cost effective health insurance and long term care insurance, I can tell you how frustrating it is to get good data.  We live in Los Angeles and one would surmise that a large city is more expensive than smaller communities -- but the long term insurance rep said it was less expensive.  

So where is the real data?  I found it!  The Dartmouth Atlas of Health Care!  And believe me,  location matters!

For more than 20 years, the Dartmouth Atlas Project has documented glaring variations in how medical resources are distributed and used in the United States. The project uses Medicare data to provide comprehensive information and analysis about national, regional, and local markets, as well as individual hospitals and their affiliated physicians.

Look up your region on this handy interactive map: 


This interactive US Atlas of Health Care shows you various information by local areas... the best, the growth, by hospital referral region.

As you can see, the Los Angeles region has a bit of a difference in prices and cost increases than counties north and south of it.  Hmmmm....

The cost of providing health care to seniors is rising more than twice as fast in Dallas as in San Diego, and Medicare now spends nearly three times more to care for its enrollees in Miami than it does in Honolulu.
This illustrates how huge inefficiencies in the U.S. health care system are hamstringing the nation's ability to expand access to care, according to a new analysis of Medicare spending by researchers of the Dartmouth Atlas Project published in February 2009 in the New England Journal of Medicine.

Nationally, Medicare spent an average of $8,304 per enrollee in 2006, and national spending grew at a rate of 3.5 percent annually from 1992 to 2006. Among states, New York was tops in spending per enrollee, at $9,564. Hawaii was lowest, at $5,311.

Where Medicare spending per enrollee grew at an annual rate of 5 percent in Miami, the rate was less than half, at 2.4 percent, in San Francisco. Medicare spent $16,351 per enrollee in Miami in 2006, almost twice the spending of $8,331 in San Francisco.

The researchers project that, at current spending rates, Medicare will be $660 billion in the red by 2023. But by reducing the annual growth in per capita spending from 3.5 percent, the national average, to 2.4 percent, the rate in San Francisco, Medicare could save $1.42 trillion and turn the deficit into a healthy surplus.

Small Differences Make a Huge Savings

"The good news is that small differences, because of compounding, can make an enormous difference for the long-term solvency of Medicare and our ability to expand coverage for the uninsured," said co-author Jonathan Skinner, Ph. D., the John Sloan Dickey Third Century Chair of Economics at Dartmouth College.

The authors call on physicians to lead an effort to reform how the U.S. delivers and pays for health care to bring spending under control.

Systems of Quality Care

They write: "Payment systems could then shift from purely volume-based payments to systems ... that foster accountability for the overall costs and quality of care, allowing physicians to align their work more closely with the values that brought them to health care. "

"This work demonstrates why health reformers should work to realign private and public payment schemes to benefit quality performance over the volume of services," said Dr. Risa Lavizzo-Mourey, president and CEO of the Robert Wood Johnson Foundation. "Clinicians who successfully provide high quality care and slow spending growth should be rewarded, not penalized."

About the Dartmouth Atlas Project
For more than 20 years, the Dartmouth Atlas Project has documented glaring variations in how medical resources are distributed and used in the United States. The project uses Medicare data to provide comprehensive information and analysis about national, regional, and local markets, as well as individual hospitals and their affiliated physicians. These reports, used by policymakers, the media, health care analysts and others, have radically changed our understanding of the efficiency and effectiveness of our health care system.

About The Robert Wood Johnson Foundation
The Robert Wood Johnson Foundation focuses on the pressing health and health care issues facing our country. As the nation's largest philanthropy devoted exclusively to improving the health and health care of all Americans, the Foundation works with a diverse group of organizations and individuals to identify solutions and achieve comprehensive, meaningful, and timely change. For more than 30 years the Foundation has brought experience, commitment, and a rigorous, balanced approach to the problems that affect the health and health care of those it serves.

Depression Care Research Results

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Depression often coexists with other long-term health problems, presenting additional complexities. About 60 percent of depressed outpatients have at least one other chronic medical condition as well, such as a heart problem, high blood pressure, or diabetes.

The US Department of Health & Human Services, through the Agency for Healthcare Research and Quality  has funded research to track effective care of depression. 

Heart Attacks and Depression

Research results have shown that patients with a history of heart attacks have 1.8 times more depressive spells in a year and more persistent symptoms than depressed patients without a history of heart attacks.

Chronic Conditions and Depression in Older Persons

The challenge of treating depression as one of multiple chronic conditions is especially an issue in older persons. AHRQ research comparing elderly patients with and without depression in a primary care clinic found that the depressed patients had:

  • Nearly $200 more in annual diagnostic test costs.
  • Almost 1.5 more ambulatory care visits per year.
  • Over 12 percent more annual visits to the emergency department.
  • Five percent more hospitalizations each year.

To reduce the cost of care and improve outcomes for older persons with depression, coexisting psychiatric and medical illnesses must be targeted for treatment.

Best Care Mental Health Specialists or Medical Care Providers?

The organization of care can affect care delivery for depression. One AHRQ-sponsored study showed that shifting patients away from mental health specialists to general medical providers (as is the practice in some managed care arrangements) may lead to fewer improvements in patient functioning but costs two to three times less.

Other AHRQ-funded research on the effects of changes in health care payment and delivery found that after switching to a prepaid plan, the health status of outpatients with depression did not appear to suffer although they were 12 percent less likely to use antidepressants and made 35 to 40 percent fewer visits to their mental health care providers.

Even where there is substantial agreement about how treatment for depression can be improved, changes to everyday practice have been slow. Past efforts by managed care organizations to improve compliance with guidelines for improving diagnosis and treatment of depression have met with only modest success.

Two AHRQ studies investigating academic detailing and continuous quality improvement interventions in managed care organizations concluded that these approaches were only mildly effective in improving clinicians' adherence to the recommended guidelines for care. However, promising early results from a current study evaluating ways to increase use of antidepressants and psychotherapy in managed primary care practice suggest that depressed patients in the intervention groups were more likely to receive these interventions and exhibit better outcomes.

The National Guideline Clearinghouseâ„¢ (NGC) sponsored by AHRQ in partnership with the American Medical Association and the American Association of Health Plans, allows physicians and other Internet users to assess and compare guidelines online at http://www.guideline.gov. The NGC is being used by Georgetown University Medical Center's Mood Disorder Program in the development of clinical practice guidelines on depression for primary care physicians in managed care settings.

How to Choose Health Insurance at Work

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Dr. Carolyn Clancey is the director of the US Agency for Healthcare Research and Quality.

Here's her advice in how to research and consider the various insurance options that might be available to you at your place of work.  Many of these options also apply if you are purchasing insurance on your own.

Many of the common health insurance plans today offer several choices for coverage, based on factors including cost, flexibility and how much of a role you want to play in managing and paying for your own health care. These include:

  • Preferred provider organizations (PPOs). These plans contract with doctors, hospitals, and other providers but typically do not manage your care. PPOs allow you to see providers outside the network, but you will pay more for your care if you do. These are the most common work-based health plans.
  • Health maintenance organizations (HMOs). Many of these plans focus on preventing diseases and staying healthy. If you join an HMO, you typically must receive all your care from network providers, except in medical emergencies. When you join, you pick a primary care doctor to manage your care. HMOs usually have copayments rather than deductibles or co-insurance.
  • Point-of-service organizations (POS). These plans are a combination of a PPO and an HMO. POS plans have a primary care doctor who manages your care but allow you to seek care from doctors and hospitals that are not part of the plan. You pay more for seeking care out of network, however.
  • Consumer-directed health plans. These newer health plans give  you more control over your own health care, both in choosing the care you receive and paying for it. They often require you to pay a substantial deductible (often $2,000 or more) before coverage starts, and are combined with a personal health savings account or another similar product that allows you to pay for care with pre-tax money.    

Picking a Plan that Works for You

Health insurance can protect you from hefty medical expenses that can easily bankrupt you if an accident or illness strikes. It also lets you pay for access to quality and timely care.

That's why I urge you to read the materials you get during open enrollment season and ask questions. Understanding how your plan works, learning what it does and doesn't cover, and considering the quality of care a plan provides are good ways to choose a plan.

My agency has developed a survey that provides information on consumers' experiences with health plans. The data are collected by different organizations, including the Federal Employees Health Benefits Program and Medicare. Some health plans also collect data and provide it to consumers. You should check to see if your plan provides this information.

To get the best plan at the right price to fit your needs, consider the following:

  • Avoid basing your decision only on the premium. Lower premiums typically mean care comes with higher out-of-pocket costs through deductibles, coinsurance, or copayments. If you're young and healthy, low premiums may be a good fit, but if you have a health condition or are older, it may not be. Review all potential costs before choosing your health plan.
  • Understand what a plan covers. Read the materials you receive with the following questions in mind: What type of doctor visits, surgeries, and hospital care are covered? Is there a drug benefit? If so, how much does it cover and what will it cost you? Are dental and eye care covered? Are there limits on what you pay or what the plan will pay for?
  • Review last year's coverage and care costs. Determine if it was a typical year, what your out-of-pocket costs were, and if it was a good plan for you after all.
  • Find out if your doctor, hospitals, and other providers are in your health plan's network. Decide if you are willing to see other providers, and if you aren't how much it will cost you to go out of the plan's network for care?
  • Look for ways to save money under the plan. Check to see if you can get cheaper prescription drugs if you order them by mail. If you have diabetes or another chronic illness, find out if the plan lowers copayments on medicines to keep your condition in check. Some plans even offer cash or incentives for you to get checkups or join disease management programs.

Picking the right health plan takes some time and effort. Even if you don't have a choice of plans, you need to know how your plan works. Asking questions and checking out your options isn't only good for your health, it can be good for your wallet too.


Read more columns by Dr. Clancey at the US Agency for Healthcare Research and Quality


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