LRI Helps Amplify Call for Better Access to Better Lupus Care

Enlisting Lupus Community to Sound Nation’s Patient Voice

Despite the benefits of the Affordable Healthcare Act (ACA) many patients still face serious barriers to accessing quality care.

The Lupus Research Institute (LRI) is among the 333 patient organizations that signed the “I Am (Still) Essential” letter to Secretary of Health and Human Services (HHS) Sylvia Mathews Burwell calling for immediate measures to improve how the Affordable Care Act is implemented in the coming year. Critical issues highlighted include: restrictions to benefits, expensive co-payments for patients, and difficult-to-understand plans. Many members of the LRI National Coalition, including the S.L.E. Lupus Foundation, also signed the letter in support.

“I Am (Still) Essential” Campaign STILL Working for Millions of Patients
This letter to Secretary Burwell builds on the “I Am Essential” campaign that brought together hundreds of patient groups in a coalition that pressed for comprehensive coverage in the Essential Health Benefits. The coalition has been re-launched under the name “I Am (Still) Essential” to address ACA implementation issues and, as stated in its letter, to work with Secretary Burwell on efforts to revise the Essential Health Benefits for future plan years.

Help Advocate for Better Access to Better Care
Greater access to quality care for people with lupus is a high priority for the LRI and our National Coalition of patient groups throughout the country.  Please use the LRI Legislative Action Center to add your voice -- email your legislators in the House of Representatives about the need to support the Patients' Access to Treatments Act (PATA), HR 460. PATA is designed to hold rising patient co-payment drug costs down and increase access to quality treatment.

In addition, August is a perfect time to meet with your legislators to make them aware of lupus and issues important to lupus patients! While Congress is in recess for the month, your Senators and Representatives are often available to see constituents in their hometown offices.  To prepare, here is a brief webinar and toolkit with background on the relevant issues for people with lupus and tips on how to advocate effectively.

Your visit could make the difference with a vote supporting the PATA bill and other legislation to increase research funding and improve treatment for lupus!