Put Patients First Blog

Join the National Health Council this Friday, May 11, from 2:30-3:30 EDT for a Twitter chat on Access to Health Care. Experts from the National Psoriasis Foundation and the National Health Council will be available on Twitter at @NHCouncil and #Access2Care to answer questions about how access to quality health care affects people with chronic diseases and disabilities.

We'll be teaming up with other NHC member organizations to direct you to resources and information that help make effective and affordable health care a reality.

To Join the Conversation, go to www.twitter.com and search for the hashtag #Access2Care. You can also join us at https://www.twitter.com/#!/NHCouncil.  

Tell Your Friends and Family about the Twitter chat by clicking here.

When you're a patient with a chronic condition, one of the best ways to communicate with your doctor and health care team is by asking questions. Establishing an effective line of communication with your health care provider is important to building trust and an open exchange of information, which leads to better health outcomes.

This week Washington is flooded with advocates headed to the Supreme Court to speak in support of the Affordable Care Act (also known as health care reform). We must protect patient access to affordable and effective health care that meets the 5 Principles of Putting Patients First.

The National Health Council believes the Affordable Care Act, though not perfect and certain to evolve over time, is already improving and will continue to improve the lives of people with chronic conditions.

Here's how you can help:

• Sign the Petition to uphold the Affordable Care Act. The Supreme Court needs to hear from everyone who wants health care that Puts Patients First.
  
• Follow the NHC on Facebook and, Twitter.  Show your support for Health Care that Puts Patients First!

Thank you for all that you do to make health care improvements a reality.

After months of negotiations, the Food and Drug Administration (FDA) finalized its Prescription Drug User Fee Act (PDUFA) agreement and submitted it to Congress. The legislation must be passed to reauthorize PDUFA before its expiration on September 30, 2012. In January, similar agreements were also submitted to Congress for new generic drug and biosimilar user fee programs. The Medical Device User Fee Act agreement has also been tentatively reached by the FDA and industry stakeholders; however it has not yet been sent to Congress.

Read more about NHC's work on PDUFA in the March edition of Council Currents Newsletter.

On January 20, the NHC hosted a Congressional briefing on essential health benefits (EHB) attended by more than 120 Congressional staff and representatives from various stakeholder organizations. Expert speakers offered background information on the issue, discussed the NHC's work, and offered a pathway for moving forward toward creating an EHB package to meet the needs of patients.

In December 2011, the Centers for Medicare and Medicaid Services released a guidance bulletin that described that states determine the essential benefits that insurance plans in their state must cover by choosing a sample plan from their state as a benchmark.

Read more in the NHC's March edition of Council Currents Newsletter.

The Patient-Centered Outcomes Research Institute (PCORI) will hold a National Patient and Stakeholder Dialogue on its first draft National Priorities for Research and Research Agenda on Monday, February 27, from 9:30 a.m. to 5:00 p.m. Eastern time at the National Press Club in Washington, D.C. NHC's Executive Vice President and Chief Operating Officer Marc Boutin will attend the event and present as part of a panel of patient and caregiver advocates.

Watch Boutin and others speak by registering now to watch the event webcast live on February 27. 

Interested in providing input on PCORI's research agenda? PCORI is looking to patients, caregivers, professionals, and public for help shaping it's national priorities. Visit their website to comment and learn more at http://www.pcori.org/provide-input/.

Life is full of teachable moments and perhaps we learn the most valuable lessons in our most tested times. For retired teachers Dick Johnson and Eleanor Solien, their greatest test was not in a classroom. It was life itself. Dick and Eleanor have passed each other in the hallways of the Henning Public School for the past six years. In the evenings, they greet one another as next-door neighbors, sharing local news tidbits or marveling at the erratic Minnesota weather. Yet, for all they appear to have in common, there is a more deep-seated connection: both have experienced the painful lessons of being caregivers to loved ones suffering from Alzheimer's.

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