In a surprising announcement earlier this month, the Treasury Department decided to postpone the employer mandate, as it is called, in the Affordable Care Act (ACA) until 2015. One of the key provisions of the law, the mandate requires employers with over 50 employees to either offer health coverage to their workers or pay a per-employee penalty. It seems nobody saw the decision coming and speculations on the consequences ran rampant. Thankfully, the shock has worn off and implementation of the ACA is moving forward with few impacts. Read full story.
As a small disease-specific organization our vision is to be the best resource for people in Colorado impacted by Lupus with emphasis on the newly diagnosed.
Our mission to improve the quality of life for people living with lupus through community education, client services, support of research and advocacy guides our decisions.
Please take time to review our annual report to see how we work to stay true to our mission, how our finances are managed and how so many people come together to help make our organization successful!
LRI launches federal provider program
Singer Toni Braxton Shares Personal Story of Lupus
The Lupus Research Institute (LRI) National Patient Coalition participated in today’s launch of the Lupus Initiative®, the culmination of its five-year advocacy campaign resulting in $4.6 million in Federal funding to make the healthcare provider education program possible.
Helping to draw attention to the need addressed by the Initiative to train professionals in lupus diagnosis, six-time Grammy award winning singer Toni Braxton shared her personal story as a lupus patient and Board member of Lupus LA, an LRI Coalition partner. “It took years to be diagnosed with lupus,” said Ms. Braxton. “There were so many signs like joint pain and extreme fatigue, but it wasn’t until my white blood cell count dropped twice that I was finally tested for lupus. Proper treatment can only begin after lupus is diagnosed, so early detection is very important.”
Client Support in the 21st Century
From Debbie Lynch, CEO
One of the issues we have struggled with for the last 10 years is how to facilitate providing support, other than financial assistance, for those with lupus and their families.
In the early part of the decade we organized support groups, 18 to be exact, in various parts of the state. A written manual and training were available for group leaders as was a quarterly stipend for meeting expenses.
About 9 months into the first year, imagine our surprise when we were ready for the quarterly conference call and no one called in! Follow up phone calls found that for various reasons groups were not meeting, had disbanded altogether or had decided to call each other as needed.