Put Patients First Blog

When you visit the doctor, do you get all the answers you're looking for? Do you understand the reasoning behind the tests and procedures you're given?

Today more and more, people are able to answer 'yes' to these questions as patients take more power in their medical decisions. After all, it's your health. You call the shots.

The National Health Council wants you to get the most out of your health care. There's a lot you can do.

NHC President Myrl Weinberg published an article in the American Journal of Pharmacy Benefits on using the federal review process to expedite access to treatments.

Click here to read it!

Proposed legislation put forth in numerous states, most recently New York, would require that people be automatically added to the state donor registry unless they have previously declared to opt-out of this program. The ability to opt-in or out is given when acquiring identity cards or drivers licenses.

Advocates of this system believe that automatically assuming a person's consent or "presumed consent" will increase registries for organ and tissue donation and therefore help people in need of organs. 

According to Donate Life America, only 37% of adults in the U.S. (18 and older) are currently designated donors. Numerous European countries, including France, Austria and Spain, have an automatic opt-in system already in place and report an increase in organ availability. 

Read more about this topic by clicking here and tell us what you think about the idea.

Recently developed applications allow patients to check before their appointment if their doctor is on time or running late. At drug stores across the country people are able to buy devices that will allow them to extract their personal DNA information in an effort to see possible risk of various diseases.

Does technology improve health care for people? Let us know what you think about these stories here by making a comment.  

NHC President Myrl Weinberg published an article in the American Journal of Pharmacy Benefits on removing barriers to treatments for people with chronic conditions.

Click here to read it!

Beginning today, a free clinic in Los Angeles, California prepares to treat over 8,400 patients for medical and dental needs. 

Organized by the nonprofit Remote Area Medical Foundation, with space donated by the Los Angeles Memorial Coliseum Commission, this week-long clinic includes eye care, dental care, mammograms and diabetes screening among various other medical services.

The NHC is dedicated to advocating for health care that meets the 5 Principles for Putting Patients First.®

Check out How Health Care Reform Stacks Up by clicking here.

Want more information?

Tonight, Health and Human Services Secretary Kathleen Sebelius and Small Business Administrator Karen Mills will be holding a live, online Q&A session at 7:00 p.m. Eastern time to answer your questions about the health care reform bill and how it affects you. To view the program, go to http://www.healthreform.gov/.

People are asked to e-mail questions in advance to Healthreform@hhs.gov. According to the announcement they will try to get to as many of the questions as they can during the web chat and answer more of them via the www.healthreform.gov site afterwards.

We encourage you watch the broadcast and tell us what you think about it - Comment Here!

After a year of working tirelessly for health care that Puts Patients First, our goal is now within reach.  This Sunday, the House of Representatives will vote on legislation that will dramatically affect the patient community. Make your voice heard. Don't let Congress delay this issue any longer.  Sign the petition for health care change if you have not done so already! Tell your friends, family members, and neighbors, to sign as well. Congress needs to hear from everyone who wants health care that Puts Patients First. Find it here: www.puttingpatientsfirst.net/petition

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 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.

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

What do you do when you can't afford your co-pay?   See a recent NHC advertisement about out-of-pocket costs that appeared in Roll Call, Politico, and the Washington Post.

Since I was 40 (I'm now 64), I've had Sjogren's Syndrome, a little-known autoimmune disorder. I've been lucky to always have a job with a public agency, where access to health insurance has not been a problem.  Expensive, yes, but available. I retired early (age 60), not on disability (technically), but because the symptoms of this disease were making it increasingly difficult to do my job well. 

Read more  of her story and help Nancy advocate for the care we need!  

It's hard for others to understand that dry eyes can translate into an inability to read and work on a computer for very long at a time.  A severely dry mouth can: make simple conversations difficult; make it impossible to take a bite of most foods without drinking a beverage at the same time; affect your whole digestive system (digestion begins with the saliva in your mouth); and cause thousands of dollars dental work (I have no dental insurance).

Sjogren's is also the kind of disease that puts us at higher risk for certain lymphomas and for other autoimmune diseases as well.   Regular access to health care ensures that we can be monitored to avert these problems.  And it means that we can receive the medications we need to deal with our symptoms.   One kind of eye drops that I use, available only by RX, would cost over $100 per month without insurance. There are also special (RX) toothpastes, lotions, and pain meds that are quite costly.  

All this is on top of the fact that I was actually born with a pre-existing urologic problem.  Near-disastrous surgery when I was young has left me with a single kidney.  It's held up for 57 years, and I take care of it:  I watch my diet and limit my protein intake; I keep my blood pressure under control.  But if weren't under regular medical care, I could have lost it years ago when my blood pressure unexpectedly spiked for the first time.   

I know a number of people in our local Sjogren's group who have horrendous experience trying to deal with Sjogren's Syndrome (which can also cause severe fatigue, peripheral neuropathy, and lung damage) with no health insurance coverage.  My heart goes out to them. 

My name is Janet and am a teacher in El Paso, Texas.   My grandson has a pre-existing condition as a result of a kidney problem he was born with and must see a specialist and take medication daily. My daughter has thyroid disease, sees a specialist and takes daily medication.  My husband and I both take medication for hypertension. My grandson and my daughter have been continuously insured, with letters of credible coverage indicating no lapses. Now, neither will have insurance coverage as of September 1st.  

Read more  of her story and help Janet advocate for the care we need!  

My family at home now consists of my daughter (21), a single mother with a son, Aden (2) my mother (84), my husband (59), and myself (55). I work full-time as a social studies teacher, part time as an instructor training social studies teachers in the evenings and weekends, and part-time as a curriculum writer for the district. I work year round in order to make ends meet, which includes teaching summer school.  I am the primary breadwinner in the family. My husband stays home to take care of the Aden, who is now two, and my daughter works at a low-paying call center. My mother is too old to work outside the home. One of the main reasons why I have to work so much is because in the Socorro School District, my health insurance was $658 a month, with dental an additional $58 a month. I recently transferred to the EPISD district and was informed that the family insurance for employees in the district was going to increase to $1400 a month for healthcare, $38 a month for dental and that my daughter and grandson would no longer be included in my healthcare plan because of restrictions.  

I was shocked and confused at the possibility of not having health insurance because we are the guardians of our grandson (my dependent) and my daughter's work doesn't offer health insurance.  I have been looking at plans on the internet but because of their pre-existing conditions, none of their medication or doctors visits will be covered for their conditions for the 1st year. I am afraid to be without health insurance for my daughter and grandson because of their medical conditions. I can go across the border into Mexico and buy their medication, but they still need to see doctors and have blood test done periodically. Increasingly, I pray for a plan from Congress that will give us the opportunity to buy health insurance that we can afford.

Please give us something to hold on for. I and many others are desperately working to keep our families together, feed them, and provide for them especially in these troubling times. I am lucky enough to still have a job (actually 3 jobs). We need a completely reformed healthcare system that puts the needs of the working class and poor as the priority, not some insurance industry, or wealthy doctor, or hospital corporation. Stop listening to the fat cats and start paying attention to the people. "A government by the people, for the people". I believe that was the original intent from our forefathers.

I have had Psoriasis for 20 plus years. I recently found out that they are taking an immunosuppressant weekly injection off the market because it has been found to cause brain infections. My psoriasis has already started to come back full force.  We need to find better and safer medications.

Read more stories and help Debra advocate for the care we need!

Personal stories are extremely useful in educating policy makers on the effects that chronic diseases and disabilities have on the average person. By sharing these experiences in dealing with the health care system, we can persuade elected officials to ensure effective and affordable health care for all. Read below how some ordinary people are being affected by these critical...

It was reported in the news that shoppers are buying more vitamins at Wal-Mart .  To see a spike in purchasing seems a little strange to me....