Has the Congressional Lupus Caucus Made Any Progress?

In 2012, Congress launched a lupus caucus that was supposed to work with the Lupus Foundation of America in order to bring awareness to all members of Congress. The caucus works with the Lupus Foundation to give members of Congress an understanding of how lupus impacts individuals, families, and society.

The caucus is also supposed to help Congress actively support and get behind the advancement of lupus research in order to bring awareness of this devastating disease to the public and health professionals.

Lupus is one of over 200 autoimmune diseases and affects almost 1.5 million Americans. Approximately 90% of those with lupus are women, but children and men can also develop the autoimmune disease. The disease strikes without warning, is unpredictable, and often has fatal side effects.

Lupus is difficult to diagnose, and in the early to mid-2000s, it took an average of 4 years for someone to get a definitive decision that they have lupus.

“The Lupus Foundation of America works each day tirelessly to improve the quality of life for all people affected by lupus. A Congressional Caucus is central to advocacy efforts to raise awareness of lupus and bring lupus to the forefront of the nation’s health care agenda,” said Sandra C. Raymond, President, and CEO, Lupus Foundation of America. “On behalf of people with lupus, we are so thankful to our Congressional champions for recognizing this need and working together with us to spearhead the Caucus that will help ensure all Members of Congress and their staffs are educated about the needs of people with lupus.”

The co-founder of the Congressional Lupus Caucus, Rep. William Keating (D-MA) seeks to work with bipartisan colleagues to bring an understanding of lupus to the public. Rep. Keating goes on to say that many of those in his district know the devastation that lupus brings every day. One of the challenges facing the caucus and the Foundation is knowing exactly how many people are affected by lupus. Knowing how widespread the disease is will give a greater impetus to funding and conducting research.

What has the Lupus Caucus done to date? A lot more than you think.

The Congressional Caucus on Lupus has not sat still since its foundation in 2012. In February of 2016, The Alliance for Lupus Research and the Lupus Research Institute along with the Congressional Lupus Caucus invited lawmakers to a lunchtime briefing concerning an Action Plan for lupus research. Presented were areas identified by the NIH and what new plans are being generated for lupus patients and scientists who are researching lupus.

One important direction outlined by the New Plan was a need for nondiscrimination policies in health insurance. These plans presented strong support for proposing that insurance companies ensure that all lupus patients are covered by their individual plans.

Read on to learn what else the lupus caucus has done for patients in recent years.