Lupus Advocates Lead the Way in 2022

With 2022 now behind us and 2023 underway, there is no better time to briefly pause and reflect on the past year and appreciate the incredible impact that lupus advocates have had through their passion and commitment to improving the lives of people with lupus.

For 365 days in 2022, lupus advocates never missed an opportunity to make their voices heard – and when there wasn’t an opportunity, they created their own. From meeting with their members of Congress to advocate for policy change, to telling their story to raise awareness of this debilitating disease, lupus advocates demonstrated their commitment to this fight day after day.

We are incredibly honored to advocate alongside lupus advocates, and together with them, we were able to make significant progress in improving the lives of people with lupus.

Congress approves $22 million in lupus funding

Late in December, Congress passed an omnibus spending package for fiscal year 2023 that included $22 million in new funding for critical lupus research and education programs, as well as an additional $47.5 billion in funding for the National Institutes of Health. $22 million for lupus-specific programs is the most Congress has ever approved in a single year. To learn more about the omnibus and the programs it funds, click here.

Lupus advocates supported these programs throughout the year, starting in March when they urged their Representatives to sign onto the Congressional Lupus Caucus’ Dear Colleague letter in support of these programs. The programs were also an advocacy priority for the hundreds of advocates who met with their members of Congress at the 2022 Advocacy Leadership Symposium and at the 2022 Digital Lupus Advocacy Summit.

Important changes to Medicare Part D

In August, President Biden signed into law the Inflation Reduction Act which included a $2,000 out-of-pocket cap in Medicare Part D and the ability for Part D beneficiaries to spread high drug costs over the course of the year. The out-of-pocket cap will be phased in starting in 2024 and be fully in place starting in January 2025. For context, it’s estimated that in 2020 more than 1.4 million people served by Part D had drug costs over $2,000, and that number is expected to be significantly higher by the time the cap is fully in place in 2025.

An out-of-pocket cap in Part D has been a priority for the Foundation for quite some time, and lupus advocates supported its inclusion in the landmark legislation by advocating in support of it during their meetings with their members of Congress at the 2022 Digital Lupus Advocacy Summit. The MAPRx Coalition, a group of nearly 60 patient advocacy organizations focused on Part D that the Foundation founded in 2005 and continues to convene, has also made an out-of-pocket cap an advocacy priority for the last several years.

Additionally, the Inflation Reduction Act included a number of other victories for people with lupus that the Foundation helped to champion. Notably, the legislation extended through 2025 Affordable Care Act subsidies to help people access health insurance.  Moreover, the legislation expanded eligibility for the Medicare prescription drug low-income subsidy, from 135 percent of the federal poverty level to 150 percent.  Both provisions will help make healthcare more affordable for thousands of Americans. Lastly, the legislation makes vaccines free for adults covered by Part D plans, an important step for public health.

Supporting step therapy reform around the nation

The Foundation continues to tackle step therapy protocols at both the state and federal level to protect people with lupus from needless delays in accessing their medications. To find out more about how step therapy affects people with lupus, check out our policy webpage on it.

Currently, 29 states have passed legislation protecting patients from step therapy protocol, but even existing laws occasionally need to be updated. In one such case, the Foundation helped to make history in Kentucky with step therapy reform. In March, Kentucky Governor Andy Beshear signed SB 140 into law, a bill which creates a path for physicians to override step therapy protocols in several situations, primarily when the protocol would require the patient to try a different medication than the one the patient is currently using to successfully treat their condition 

At the federal level, we are also advocating for the Safe Step Act which will further protect the relationship between people with lupus and their doctors. While the legislation was not passed during the 117th Congress, we made significant progress in collecting cosponsors and building support for the bill – we are optimistic that we will be able to push the legislation across the finish line under the new 118th Congress.

Advocacy Chairs in all Foundation regions 

The Lupus Foundation of America has spent the last year establishing more robust state advocacy infrastructure throughout the country. This will allow us to be more proactive in our advocacy at the regional and state level. The Foundation has recruited and trained Advocacy Co-Chairs in each of our regions:

• Pacific Northwest: Sanjay Mishra & Erin Elsasser
• Southern California: Shannon Lee & Natasha Shah
• Northeast: Olga Lucia Torres
• Southeast: Gina Schell & Jeanette Alston-Watkins  

By having highly-trained Advocacy Co-Chairs across our nation, we will be able to improve access to our advocacy efforts all over the country. The Advocacy Co-Chairs work closely with the National Office and their Regional Directors to build relationships with their state and local legislators and partake in special advocacy opportunities as they arise. In the coming year, we will work to expand our advocacy efforts into our chapters and local communities.

Additionally, the Foundation continues to grow its network and reach in order to advocate for a wide range of issues important to people with lupus.  We are leading members of multiple national and state coalitions, including the State Access to Innovative Medicine Coalition and the Partnership to Protect Coverage Coalition, which focus on access to healthcare issues related to prescription drug coverage and policy, Medicaid and the Affordable Care Act, and other key issues. These coalitions allow us to broaden our advocacy, helping us to address more issues at the federal and state level.  This is just the beginning of our expansion into state advocacy!

Lupus Awareness Month Proclamations

The month of May is Lupus Awareness Month. As one or our many activities during the month, our advocates were able to obtain several proclamations that promoted lupus awareness among elected officials and the general public. In total, we were able to obtain 10 proclamations throughout the nationa. To see where these proclamations came from, click here.

Be a part of the next success story!

Without the strength of our advocacy network and the willingness of people with lupus to share their stories, none of our victories in 2022 would have been possible. We have even bigger plans for 2023, and we hope you'll join us on our mission to create a world without lupus.

• Sign up to join our network of advocates. You will receive emails on opportunities to contact important policymakers in Congress and in state legislatures to support of people with lupus. 
• Register to attend the 2023 National Lupus Advocacy Summit this April! Back in-person for the first time since 2019, at the Summit in Washington, DC you'll connect with hundreds of your fellow lupus advocates and meet with your members of Congress to urge them to join our fight against lupus.