Federal Legislative and Policy Priorities

Congressional Lupus Caucus

The Congressional Lupus Caucus provides a forum in which members of Congress and their staff can actively engage in a dialogue to improve the quality of life for people with lupus and their caregivers through supporting the advancement of lupus research and increasing awareness of lupus among the public and health professionals.

National Institutes of Health

The National Institutes of Health (NIH) is the largest source of funding for medical research in the world comprised of 27 Institutes and Centers.  The NIH currently funds most of the lupus research conducted.  Nonprofit groups, including the Lupus Foundation of America, and other sources provide the remaining dollars.  Thanks to these sources, we have recently made progress and now have important clues to the origins and workings of this mysterious disease.  We will continue to advocate for increased research funding at the NIH, especially for lupus.

Food and Drug Administration

The Food and Drug Administration (FDA) is a federal agency within the U.S. Department of Health and Human Services.  A core function of the FDA is to evaluate new and existing medications for their effectiveness and safety.  The Foundation works with the FDA to ensure they understand the complex nature of lupus as emerging therapies treating lupus move through the drug development process. 

Specialty Tier and Co-insurance

New medications and those in development to treat lupus are mostly biologics.  With a number of new and innovative treatments for lupus in the drug pipeline, these highly anticipated treatments will mean nothing if people with lupus cannot afford them.  Placing vital, life-saving, yet expensive, medications used to treat chronic diseases such as lupus on a specialty tier is becoming common practice.  The Lupus Foundation of America has joined with other organizations to form the Coalition for Accessible Treatments to ensure that people with lupus and other chronic diseases have access to their full range of treatments.

Coverage for Off-label Prescription Drugs

Most medications used to treat lupus are prescribed “off-label,” meaning they have not been approved by the FDA for lupus, but these medications are helpful in relieving many lupus symptoms. Some health plans will not cover medication prescribed for “off-label” use.  The Foundation works to ensure insurers cover these necessary medications. 

Implementation of the Affordable Care Act

President Obama signed the Affordable Care Act (ACA) in to law in March 2010, which will extend health insurance coverage to many Americans who currently do not have health insurance, as well as provide much-needed protections for people with lupus and other chronic conditions.  Some key principles within this law that are critical to people living with lupus include:  eliminating pre-existing condition exclusions, allowing young people up to age 26 to remain on their parents’ health insurance, eliminating annual limits and life-time caps on essential benefits, among others.  

Social Security Administration

The Foundation works with the Social Security Administration to revise the appeals process to make it easier for people with lupus and other chronic diseases to provide documentation in a reasonable timeframe to prove the severity of their condition.  The Foundation is hopeful our efforts will result in more people receiving Social Security Disability benefits in a timely manner.

District Meetings

The Foundation has created a slide presentation {PDF} on how to set up meetings in your state while your elected officals are back in their districts for a recess in August.  August in-district meetings provide an ideal venue to tell your elected officials how lupus impacts you and discuss issues critical to the lupus community.  Now is the time to urge them to support lupus research and legislation aimed at improving access to affordable medications.  You can leave these background documents with your elected officials if you make a meeting:  H.R. 460/Specialty Tier; Support funding for the NIH; and Join the Congressional Lupus Caucus.