Wow. Living here in Washington, DC I am impressed that you were able to attend a meeting of so many "heavy-hitters" in healthcare. I wonder what I might say if asked. I wonder if those folks have a grip on issues that affect us all. I hope you enjoyed the day.
It was nice to be present. I did get up and ask a question at the very end of the day. I honestly wonder if there is an understanding of what it is like navigating the health system from the patient's point of view.
It was nice to be able to go downtown. Very long day indeed. I got on the metro by 6:30am, walked to the Willard from Metro Center (3 blocks), attended the pre-forum briefing (with breakfast), then the forum which lasted until 2:30pm, went back to the metro, came home.....and slept for 2-3 hours straight on the couch. On Friday, I went in and out of wakefulness and sleep (fatigued unconsciousness, lol) most of the day. So completely exhausted, but still I'm glad I went.
That resulting fatigue proves to me that although I'm doing well with my MS, there is no way I could actually work a regular job. At least I got to sit on the metro both ways (only had to ask someone for a seat on the 6:30am train).
Great article. Thank you for bringiing up the topic and doing it so well.
I often feel as though I am the poster child for insurance reform. My stories would make even a lawmaker’s head spin…..incluiding the quote for a $4,000 monthly premium!
I have often wondered if we could save MEDICARE on a voluntary basis? In other words, how many of us beneficiaries would voluntarily pay an extra $5, $10 or $20 (or more?) per month for the privilege of having Medicare if we knew it would preserve the system? I would bet that quite a few of us would. I have just finished my first year on Medicare and know that I saved thousands and thousands of dollars.
My monthly premiums are hundreds of dollars less than they were. My deductible is thousands of dollars less than it was. There is no worrying or wondering if the doctor will be paid what they billed (I can’t tell you how many times the doctor billed $500 and insurance paid $120!) and there is no worry about the group being cancelled and losing my insurance altogether…….or is there?
Yes, I would gladly pay more each month voluntarily if I knew that it would help preserve Medicare and I am sure that I am not alone. Of the 45,000,000+ million people on the program, there must be others who feel as I do. Call it “insurance for the insurance.” By 2020 there will be almost 40,000,000 more people on the program and something has to be done…….or Medicare will become as lousy as the other insurance that is out there.
Raise the age limit (to 68?), raise the premiums, raise the deductible……..but only a little in each case. The fact is that our lawmakers in Washington, DC will never do it.
Another reason why they should listen to patients.
The last comment regarding paying a small amount for Medicare to continue..... I just started on Medicare this month and in that short time I already breathe a sigh of relief. I can go to this or that doctor and know I won't have to pay out-of-pocket anymore. My deductibles are lower. I am delighted I can now make appointments with other doctors I have desperately needed to go to but have put off because I could no longer afford to pay any more medical bills on my own. Would I be willing to pay a small amount for Medicare to survive? You bet.
My worry is that my son's generation will have no entitlements by the time the government of my generation is done and gone. I want to leave this world knowing it's a better place to live for my son, and for his generation, than it is for me. Is that now possible? I just don't know.
Amen. Just... amen. times of change then it seems to me as if the field is not catching up to the fact that people who live with chronic illnesses and conditions are becoming empowered and have a right to be the leader of their medical team. The notion of compliance is outdated and if doctors continue to expect us to meekly accept their word as gospel, they are bound to be disappointed. Unless they start including us in the front and center position on panels like this, they are going to lose relevance.
Featuring Content From:
By using this service, you accept our Terms of Use. Please read them. The consumer health information on is for informational purposes only and is not a substitute for medical advice or treatment for any medical conditions. You should promptly seek professional medical care if you have any concern about your health, and you should always consult your physician before starting a fitness regimen. Copyright © 2013 Remedy Health Media, LLC. All Rights Reserved.
Test Your MS Knowledge 
10 Symptoms That Could Be MS 
10 Foods That Fight Inflammation 
Unusual Multiple Sclerosis Symptoms 
Good article, Lisa.
Was anyone from WHO speaking?
In 2008 Benedetto Saraceno, a Director at the World Health Organization, said that health care is moving from a disease-oriented approach to focus on patient experience and needs. I thought that sounded promising. It sounds as if we are not there yet. Too bad.
Thanks Vicki,
Nobody from WHO was speaking. The topic of "patient-centered" care is huge right now in health policy circles. Here is a document from the Agency for Healthcare Research and Quality (AHRQ) in 2002 discussing it :
"Expanding Patient-Centered Care to Empower Patients and Assist Providers" (2002)
Things move SLOW it seems.
Below is the agenda from Thursday. Before the event was a briefing regarding a Drug Trend study released by Express Scripts. I'll have to share that at some point. It has some interesting tidbits of information, especially related to MS drugs.
9:00 a.m. Welcome Remarks – Elizabeth Baker Keffer, President, AtlanticLIVE, and Vice President, The Atlantic
9:05 a.m. Keynote Address – Francis Collins, Director, National Institutes of Health
9:25 a.m. Panel Discussion – Health Care 2020: Reform, the Deficit, & the Future of American Health Care Policy moderated by Clive Crook, Senior Editor, The Atlantic, featuring:
10:15 a.m. Keynote Address – Governor Peter Shumlin, State of Vermont
10:45 a.m. Panel Discussion – Integrated Care: Can Coordinating Service Lower Costs and Improve Quality? moderated by Megan McArdle, Senior Editor, The Atlantic, featuring:
11:35 a.m. Panel Discussion – The Future of Medicine: Physician Education, Research, and New Models of Care, moderated by Clive Crook, Senior Editor, The Atlantic, featuring:
12:25 p.m. Lunch
12:55 p.m. Keynote Interview - Senator Ron Wyden (D-OR), Co-Author, Healthy Americans Act interviewed by Josh Green, Senior Editor, The Atlantic
1:25 p.m. Panel Discussion – Behavioral Economics: The Role of Patients and Caregivers in Health Care moderated by James Gibney, Features Editor, The Atlantic, featuring:
2:15 p.m. Closing Remarks – Elizabeth Baker Keffer, President, AtlanticLIVE, and Vice President, The Atlantic