Lupus on the Hill 2020

This month, due to concerns over the COVID-19 virus, both the Lupus Research Alliance (LRA) and the Lupus Foundation of America (LFA), decided to cancel their annual advocacy events in Washington D.C.  Normally, hundreds of patient advocates and allies from the lupus community meet with their congressional representatives and senators.  However, concern over that number of people, many with compromised immune systems, led to both organizations cancelling in-person aspects of these important events.

Instead, Kaleidoscope Fighting Lupus joined LRA and others across the nation, in contacting each of our representatives and senators by telephone on March 10th, passionately advocating for their support for lupus research funding in the upcoming budget.

Our requests were straightforward and targeted to the budgets for research at the National Institutes of Heath (NIH), the Department of Defense (DOD), the Food and Drug Administration (FDA) and for each representative to join the Congressional Lupus Caucus.  We have listed more details of each below.

In their response to the current restrictions, the Lupus Foundation of America made their entire 2020 National Lupus Advocacy Summit a digital / virtual event.

On March 16, our partner Lynn Gagnon, from the Pioneer Valley Lupus Support Group, and lupus advocates from all around the country logged on to their computers to chat with other advocates, visit a virtual exhibit hall, and listen to panelists on topics that included everything from research to navigating the health system.  This prepared them for participating in the virtual meetings via conference calls with their senators and representatives later in the day.

From Lynn:

“Here are photos of me listening to the panelists and visiting the exhibit hall. The last photo shows me speaking with 3 other participants on the first conference call: 2 lupus patients giving their stories, one speaking for her daughter with lupus, and me.  I gave the senator's assistant our 4 asks: funding for the National Lupus Registry, Lupus Research Program at the Department of Defense, Lupus program at the Office of Minority Health, and National Institutes of Health.

It was an empowering experience!”

So how can you help?

You can still contact your own representative and senators directly and ask them to support lupus programs and research. Click on the following links to find information about the government officials in your area:

State Representatives
https://www.house.gov/representatives/find-your-representative

State Senators
https://www.senate.gov/general/contact_information/senators_cfm.cfm

When you call, you might talk to a staffer or you may be sent to voicemail to leave your message.  We are asking for the following:

  • For the National Institutes of Health (NIH): The NIH is the largest funder of lupus research in the world!  We need Congress to increase funding by $3 billion in 2021 ($44.7 billion total) in order to continue and expand its lupus research.

 

  • For the Department of Defense: We want Congress to continue the same $10 million level of funding as this past year, specifically for their Lupus Research Program (LRP).
  • For the Food and Drug Administration (FDA): The FDA is responsible for supporting the pharmaceutical industry’s efforts to conduct research and fast track new drug treatments to treat and one day eradicate diseases such as lupus. We are asking that Congress to increase funding by $120 million.

 

  • The Congressional Lupus Caucus: Ask your representative (not your senators) to join the Congressional Lupus Caucus.   This caucus has been instrumental in advocating for Congress to invest in the research needed that is crucial for individuals living with lupus. We would like House members to join this caucus and become our allies in our efforts to fight lupus.