Put Patients First Blog

It may be called Lou Gehrig's Disease, but in February 2004 it became Lorri Carey's. Strikingly beautiful and poised, Lorri remembers the life-changing moment her doctor told her that what she thought were leg cramps from exercise and arthritis in her hands were actually the telltale symptoms of ALS, a fatal neurodegenerative disease that erodes one's ability to move.  As the disease progresses, its victims become trapped in a body they no longer can control, unable to walk, talk, breathe, or even blink an eye. The cause of ALS is unknown and its treatment is limited to one FDA-approved drug, which only extends life in some patients by about three months.

"Somebody had to die for me to live," Mike McSweeney soberly acknowledges. Despite extensive military training and service that took him all over the world, including two deployments to Iraq, Mike never anticipated that his own near death experience would play out in the Kansas University Medical Center just miles from his home base in Leavenworth. It is hard to imagine that this incredibly fit 41 year-old Army Lieutenant Colonel was brought to his knees, not by enemy fire, but a rare genetic disease called Alpha-1.

The holidays are often a time of joy and happiness. It is a time when families and loved ones get together to share memories, laughs, and good cheer. This year, people with chronic conditions have much to be thankful for as more of the Affordable Care Act goes into effect.

We now have

• Access to health insurance for people with pre-existing conditions
• Extended health insurance coverage for young adults - our country's future
• Coverage for preventive care and programs to strengthen the primary care and rural health care workforce
• No life-time limits on insurance coverage
• Improved care and prescription programs for seniors

The National Health Council and WebMD, the leading website for health information, have partnered again on a new initiative to deliver important messages and information to help people with chronic diseases and disabilities and their family caregivers. Officially launched in September, A Different Normal: Living with a Chronic Condition is a new blog focusing on people with chronic conditions. The web page is already averaging about 23,000 page views per month.

After years of hard work, the National Health Council (NHC) can proudly report that its first original piece of legislation, the Modernizing Our Drug & Diagnostics Evaluation and Regulatory Network (MODDERN) Cures Act, has been introduced in Congress by Representative Leonard Lance (NJ-7). Introduced on November 18, the MODDERN Cures Act will also be known by its official bill number: HR 3497.

In October, the President's Council on Jobs and Competitiveness released a report entitled Taking Action, Building Confidence: Five Common-Sense Initiatives to Boost Jobs and Competitiveness. The report contains language supplied by the NHC that recommends that the FDA improve the regulatory system to encourage investment and job creation in the life sciences sector.

This Thanksgiving season, the National Health Council (NHC) gives thanks for Patient Protection and Affordable Care Act (PPACA) policies that help people with chronic conditions diseases and their family caregivers.

As mentioned in last week's blog post, the Department of Health and Human Services (HHS) is seeking broad public input on what should be included in the essential health benefits package to be provided by qualified health insurance plans. Meetings are being held around the country this month. See the previous blog post for additional details.

The NHC is committed to ensuring that the package best meets the needs of people living with chronic diseases and disabilities. The NHC has researched what the costs of a "typical" benefits package might be and has developed recommendations and proposed regulatory language that it shared with HHS. Check out NHC's materials on essential health benefits on the NHC website at http://www.nationalhealthcouncil.org/pages/page-content.php?pageid=78.

Our report has received excellent coverage in the press.

Panel Urges Affordable Health Plans
By Louise Radnofsky, Wall Street Journal
http://online.wsj.com/article/SB10001424052970204294504576615403560699170.html

Health-care law benefits must be limited to ensure affordability, panel says
By N.C. Aizenman, Washington Post
http://www.washingtonpost.com/national/health-science/health-care-law-benefits-must-be-limited-to-ensure-affordability-panel-says/2011/10/06/gIQA3K5URL_story.html

In health insurance, what counts as 'essential'?
By Sarah Kliff, Washington Post
http://www.washingtonpost.com/blogs/ezra-klein/post/in-health-insurance-what-counts-as-essential/2011/10/04/gIQAd9cKLL_blog.html           

What are you doing this month? How about helping to decide what health benefits should be covered by qualified insurance programs under health care reform? Public meetings are being held around the country this month.

New York
14-Nov (RSVP by 9-Nov)
10 AM - noon
26 Federal Plaza, Suite 3835
New York, New York 10278
Joynetta.Bell@hhs.gov

Kansas City
15-Nov (RSVP by 10-Nov)
10 AM - noon
Bolling Federal Office Building
8th Floor SSA Conference Room
601 E. 12th Street
Kansas City, MO 64106
Cindy.Cento@hhs.gov  

Atlanta
16-Nov (RSVP by 14-Nov)
10 AM - noon
61 Forsyth St. SW, Suite 5B95, Atlanta, GA 30303-8909
ORDAtlanta@hhs.gov

Seattle
17-Nov (RSVP by 14-Nov)
2 - 5 PM
Jackson Federal Building, 915 2nd Ave, South Auditorium, Seattle, WA
Viveta.VanderSanden@hhs.gov

Denver
18-Nov (RSVP by 10-Nov)
10 AM - noon
999 18th St. South Terrace, Suite 400 Denver, CO 80202
Ezra.Watland@hhs.gov

San Francisco
21-Nov (RSVP by 15-Nov)
...

NHC Executive Vice President and COO, Marc Boutin, will be presenting on November 3 at the California Healthcare Institute's Annual Meeting in San Francisco, California. Boutin will discuss the NHC's first original piece of proposed legislation - the MODDERN Cures Solution - that seeks to ensure that innovative treatment therapies are continually being developed, in the hope that each new change can bring patients closer to prevention, early diagnosis, and even a cure.

Read more about the meeting and comments from Marc Boutin by clicking here.