Advocate to Impact the Affordable Care Act!

Almost all of us are affected by state and federal issues with gaining access to medical care. To help people understand how we can work together to overcome obstacles to medical care for people with lupus, the Lupus Research Institute presented a two-part webinar series on advocacy.

Part 1: A Basic Guide for Advocates, December 04, 2013

Part 2: Implementation of the Affordable Care Act - What Advocates Should Know January 14, 2014

Part 1: A Basic Guide for Advocates
December 04, 2013

This free webinar covered advocacy basics such as how Congress works, how a bill becomes a law, the budget and appropriations process, and how to work with members of Congress. Click here to listen to the entire presentation and follow along with slides.

Don’t Get Mad – Get Going!

Have you shown up for a procedure only to find out it was not pre-approved by your insurance?

Or been told your insurance company won’t cover a new medication until you “fail” on the old one first?

Don’t get mad – get going!

You might be thinking, “I am just one person so what can I really do.”  But as part of the lupus community, you are not alone. You are among 1.5 million Americans who have lupus. And we are getting heard.

Together with our National Coalition of patient advocates throughout the country, we are making a real difference on important issues like these that affect people with lupus.  But the more people voicing their opinion, the more our legislators are likely to listen. So we need you to get involved.

Watch this webinar from professional advocates in DC to learn how advocacy works and how to add your voice to ours to make the greatest impact for people with lupus.

Why Advocate

Advocacy is the process the First Amendment of the Constitution put into place to voice our opinion to our government leaders. We use advocacy to influence government to pay attention to lupus. We are more effective when we work together to bring the patient’s voice to Congress.

Government leaders WANT and EXPECT to hear from their constituents about what is important to them. If we don’t show them that research and better healthcare are important to their voters, why should they care? Other people are also trying to get lawmakers’ support for issues important to them.

You Can Do It!

Maybe you don’t know much about how the government works. Or you’re shy. Or you’re busy. Or a million other reasons why you don’t feel you can make a difference. But your vote is just as important as anyone else’s and there are many ways to be heard. Our webinar will help build your confidence and give you the skills you need to be an effective advocate.

What to Advocate About?

Keep up on the key issues for people with lupus by visiting the advocacy section of the Lupus Research Institute website

Be on the watch for emails from the LRI requesting action on particular issues. And let us know if something is happening in your state; we may be able to help get others involved.
View the latest presentation from Part 2 in our advocacy series to understand more about the ACA and how advocacy can improve how it is implemented to best help people with chronic diseases like lupus.

Part 2: Implementation of the Affordable Care Act - What Advocates Should Know
January 14, 2014

In 2014, one of the most pressing access-to-care issues is the Affordable Care Act (ACA). Although the ACA is a federal law, states have a major role in how many parts of the ACA are enacted.

The Affordable Care Act is a law enacted by Congress in 2010 to increase the number of Americans covered by health insurance and decrease the cost of health care. It requires most Americans to maintain minimum essential health insurance coverage. For people who are not exempt from this requirement and do not get insurance through an employer or government program, they can purchase insurance from a private company through the Health Insurance Marketplace or pay a penalty.

How to Use the Health Insurance Marketplace

The Health Insurance Marketplace is “where” individuals can compare and purchase private health insurance options online, in-person or by phone. People staffing the Marketplace are trained to help consumers understand and select a plan to meet their needs.

The Benefits

The webinar reviewed the Essential Health Benefits required under the ACA. The speakers also noted some other improvements including coverage of preventive care and routine costs for qualified individuals participating in approved clinical trials; annual and lifetime dollar limits for out of pocket expenses; and coverage for pre-existing conditions.

Challenges to be Addressed

Some of the confusion around the ACA stems from the variation in how it is being implemented across the country. In some states, the federal government is operating  the Marketplace while in others it is being run by the state government. Watch this presentation to learn about the situation in your state.
Our presenters also pointed out some things people should watch for when selecting a plan such as making sure the plan you select covers the medications you take.   While there will be an appeals process, it is unclear how easy or fast the process will be. Also, it is important to understand that the limits on out-of-pocket expenses only applies to in-network services so be sure you understand how the out-of-pocket caps work in your plan.

What Can You Do?

In watching this webinar, you have already taken the first step in making a difference in how the ACA will impact people with lupus and others.  As you use your plan, note what is working and what isn’t – then email or phone your state and federal representatives to let them know how it is going. They need, and want, to hear from real people who are encountering real situations, both good and bad.

Join with others. Visit the advocacy section of the Lupus Research Institute website to keep up on the news around the ACA.  Be on the watch for emails from the LRI requesting action on this and other issues. And visit our Facebook page to share issues you are finding that impact access to care for people with lupus.  It’s a great forum to exchange ideas and experiences.