Put Patients First Blog

Check it out. The National Health Council (NHC) announces the launch of a new online community with a unique digital access, distribution, and multimedia approach to serve the more than 133 million Americans with chronic diseases and disabilities.

The WebMD Chronic Disease and Disability Exchange brings trusted experts together with people with chronic conditions to freely share information in both public forums and private, invitation-only settings.

WebMD turned to the NHC in search of "health experts" on non-clinical topics. The WebMD Expert for the Exchange is nationally recognized patient advocate Richard M. Cohen, a former news anchor, New York Times bestselling author, and public speaker on the doctor-patient relationship. He is also a cancer survivor living with multiple sclerosis.

Check it out and add your voice at http://exchanges.webmd.com/chronic-disease-and-disability-exchange.

The Obama Administration has posted an outline of what it proposes Congress should include in a health care reform bill. Read it here: http://www.whitehouse.gov/health-care-meeting/proposal/whatsnew/overview.

The National Health Council is reviewing the document to see if it moves our country closer to the Five Principles for Putting Patients First®. Will this proposal produce a health care delivery system that will help curb costs, cover more people, abolish exclusions for pre-existing conditions, eliminate lifetime caps, and ensure access to long-term and end-of-life care? What does this mean for you?

We encourage you to read the proposal and tell us what you think about it - Comment Here!

The House is back in session this week; the Senate returns next week. Much work is yet to be done to make health care reform a reality, and the National Health Council will continue its effort in support of the Five Health Care Principles. An Associated Press article states "Americans would see only a modest rise in health care costs under the Senate's plan to extend coverage to 34 million people who currently go without health insurance." Read the article on the Washington Post's website.

The FDA is warning the public about criminals posing as FDA special agents and other law enforcement personnel as part of an international extortion scam. The following is from the FDA news release: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm195814.htm.

The criminals call the victims -- who in most cases previously purchased drugs over the Internet or via "telepharmacies" -- and identify themselves as FDA special agents or other law enforcement officials. The criminals inform the victims that purchasing drugs over the Internet or the telephone is illegal, and that law enforcement action will be pursued unless a fine or fee ranging from $100 to $250,000 is paid. Victims often also have fraudulent transactions placed against their credit cards.

The criminals always request the money be sent by wire transfer to a designated location, usually in the Dominican Republic. If victims refuse to send money, they are often threatened with a search of their property, arrest, deportation, physical harm, and or incarceration.

The National Health Council was recently featured in an article appearing on the Change.org's Health Care Blog.  Using the NHC's recent analysis of the House and the Senate legislation, the author evaluates both bills against the NHC's 5 Principles to Put Patients First. 

Check it out: Do the Healthcare Bills Put Patients First?

I was initially diagnosed with Sjogren's Syndrome nearly 10 years ago while I was completing my PhD.  Upon completion, I moved back to my home town of Racine, WI and began teaching full-time.  My health was beginning to worsen, so I went to the Mayo Clinic in Rochester, MN where SLE (Lupus) was added to my initial diagnosis.  My workload is limited by my diseases, but I battle everyday to work to be productive.  Health insurance is expensive but so are the multitudes of additional medical related products I need to buy to function.  I am one of the lucky ones in that I know what I am facing and I have the resources to make my life as easy as I can.  We all need to work together to make health care available and affordable to us all.

The subject of health care reform is so serious, you have to find some humor in it somewhere. The creator of "A Parrie Home Companion" Garrison Keillor did. But as you read and chuckle you realize his core message goes to the heart of the debate. Enjoy: http://tinyurl.com/ksjbgt

The Washington Post's Ombudsman wrote an interesting column for Sunday's paper (August 30) entitled A Missing Ingredient in Health-Care Coverage. "Readers say that too many stories have been about process or politics. . .Many have said that Post stories routinely assume a foundation of knowledge that they simply don't have. Some said that they don't understand basic terms like 'public option' or 'single payer.' They want primers, not prognostications. And they're craving stories on what it means for ordinary folks and their families."

Do you agree? The National Health Council has published a two-page document debunking some of the false statements about health care reform. Would it help you if we also prepared a primer on some of the terms being bantered about when politicians talk about health care reform? Let us know. We'd like to hear what you think.

Read the column at http://www.washingtonpost.com/wp-dyn/content/article/2009/08/28/AR2009082802613.html.

Comcast Local Edition Interview with Myrl Weinberg, President, National Health Council Thursday, 23 July, 2009.

On August 12, FDA announced changes to the rules covering access to promising drugs that are still under development to make the rules clearer for the patient and the health provider, while still preserving the integrity of clinical trials designed to find out whether a drug has a desired effect on some disease or condition. You can read more about it on the FDA website at http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm176845.htm.