Put Patients First Blog

By a vote of 219 to 212, the House of Representatives narrowly passed landmark legislation Sunday night to overhaul the nation's health-care system. http://www.washingtonpost.com/wp-dyn/content/article/2010/03/21/AR2010032100943.html?hpid=topnews.

Jane E. Brody with the New York Times writes one of the best, insightful columns about personal health care. Her column on March 15 was probably the most touching piece of that I have read. It was about the decision to place her husband in hospice care. The National Health Council's fifth Principle for Putting Patients First® is that people should have access to long-term and end-of-life care. Brody wrote, "(Richard, her husband) wanted nothing to do with drastic therapies that might grant him a few extra months at the expense of his comfort and his ability to do what needed doing before he died." I encourage all to read: http://www.nytimes.com/2010/03/16/health/16brod.html?emc=tnt&tntemail1=y.  

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 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.

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.

In the preamble to the Declaration of Independence, the founders of the United States of America wrote about "a decent respect to the opinions of mankind." Too often in the course of debate over health care reform, respect for opposing views flies out the window. Meaningful reform will be the product of open and honest discourse. There are numerous writers in the blogosphere -- patients, providers, policy makers -- who chronicle their opinions and actions in an effort to bring about effective health care reform. It is also encouraging when they talk about the work of the National Health Council and respond to our efforts to educate others about the Campaign to Put Patients First.

* There's Regina Holliday's blog. She shared with us her loving and touching story about caring for her husband -- http://reginaholliday.blogspot.com/2009/05/please-join-this-group-that-is-fighting.html. You can also learn about her health reform mural project in Washington, DC -- http://www.tedeytan.com/tag/reginaholliday.

* Vote Healthcare.org is the effort of Kathie McClure to bring about change. She encourages people to sign the NHC Petition for Health Care Change -- http://www.votehealthcare.org/Article.aspx?ID=24

* Disruptive Women in Health Care addressed the NHC's views on comparative effectiveness research -- http://www.disruptivewomen.net/author/smensh/

* Dr. Healthcare's blog responded to our request to educate readers about the Campaign to Put Patients First -- http://blogs.biproinc.com/healthcare/?author=1

Let's keep the dialog going!

The Wall Street Journal ran an article today on estate planning for people with chronic diseases. "Developing an arrangement that addresses the likely progression of your disease and your future needs can help you maintain control." One suggestion that caught my attention - consider having a plan for when you might be temporarily incapacitated and another for when you need someone to manage your...

As they say, the "devil is in the details." When it comes to new funding for comparative effectiveness research, a more appropriate cliché may be the recently passed stimulus package was "only half the battle." After much hard work by numerous organizations, Congress included $1.1 billion for research to evaluate the impact of different treatment options for different medical conditions. It is a...

 

Too often having health insurance is not protection enough from escalating out-of-pocket costs for health care. The American Cancer Society and the Kaiser Family Foundation have released a report illustrating the financial burdens faced by cancer patients. A New York Times article reported...

Is a good health provider hard to find? Is the research a patient should do to find one too onerous? I hosted a gathering of my neighbors last month to survey their opinions on the health care delivery system in this country in response to a public call from the incoming Obama Administration. Those with employer-provided health insurance simply picked a primary care doctor off a list. Not very scientific....

Susan Dentzer, editor-in-chief of Health Affairs, wrote in the January 1 edition of The New England Journal of Medicine: "The news media need to become more knowledgeable and to embrace more fully our role in delivering to the public accurate, complete, and balanced messages about health." What is the role of patients in educating journalists. . .