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Lupus LA Advocacy in Washington D.C. 2015
On March 24, 2015, three members of the Lupus LA team went to lobby on Capitol Hill in Washington
D.C. The trip was organized by the Lupus Research Institute (LRI), our research partner and included
lupus groups from all over the country. We were able to meet with a number of legislative aids from
our region’s leadership, as well as a one-on-one meeting with Congresswoman Lucille Roybal-Allard.
We described the impact of lupus on our lives and the lives of others. Then we asked them to support
legislation and initiatives that concern Lupus patients. This year, we had four points which are described
below.
Patient Engagement
We asked that the patient engagement provisions in evolving 21st Century Cures legislation in the
current House draft be retained. The patient perspective in the regulatory process is often ignored. We
also asked for streamlined clinical trials.
Patient Focused Drug Development Initiative at the FDA
We asked our legislators to write letters to the commissioner of the FDA. Several disease-specific public
meetings will be held in 2016-2017. We want one to be about Lupus!
Lupus Research Plan Report and NIH Funding
We asked our legislators to tell the Labor/Health and Human Services subcommittee to include report
language on the new National Institutes of Health effort to update the Lupus Research Plan. We also
asked that they support at least $32 billion in funding for the National Institutes of Health in fiscal year
2016.
Patient Access to Treatment Act
We asked that members of the House cosponsor the Patient Access to Treatment Act (PATA) which
would preserve fixed co-pays for biologics. Some health insurance co-pays currently range from $500 to
$5,000, some up to 50% of the drug cost.
Now you can help make sure every member of Congress from every state hears how they can help
lupus patients by becoming a virtual advocate. Use LRI’s automated Legislative Action Center
(http://www.congressweb.com/lri) to email your federal legislators and ask them to help find a cure for
Lupus.