The Lupus Research Alliance’s advocacy efforts focus on urging Congress to provide the funds needed to support research into lupus that can lead to better treatments and ultimately a cure. You can make your voice heard too.
Members of Congress leave Washington to go home to work in their districts during Congressional recesses, so this is a good chance to visit them in their local office!
As a lupus advocate, your goal for your meeting with legislators locally is to highlight why funding for lupus research is so important. They may not know much about lupus or why better treatments and a cure are needed. But they will care more and fight harder if they understand how lupus really affects people – people like you or your loved one.
The U.S. federal government is the world’s largest public funder of lupus research and allows scientists to further advance the work we fund. The National Institutes of Health(NIH) is the nation’s medical research agency — making important discoveries that improve health and save lives.
The Lupus Research Alliance worked hard to convince Congress to create and continue supporting a special Lupus Research Program within the Department of Defense Congressionally Directed Medical Research Programs. Why? Defense Department data shows that there are more women – a population at greater risk than men for lupus — in our armed forces than ever before. Additionally, our nation now has over 2 million women veterans.
Our Legislative Action Center provides information on how to contact for your representative and senators :
- Click here to find out more information about your representative and senators that includes contact information, their staffers and what committees they are on.
- You can also call the United States Capitol switchboard at (202) 224-3121 and ask to be connected to the office of your representative or senators.
- Look up the local office of your representative and senators. Senators can have offices in many locations throughout the state so you want to find the one closest to you.
The House and Senate are home for extended periods of time throughout the year, but their schedule can book up quickly. It’s best to call a couple of weeks ahead to make an appointment and explain why you’re interested in meeting.
Your goal in the meeting is to highlight why funding for lupus research through the NIH and the Lupus Research Program is so important. Your legislator needs to understand the problem – what people with lupus face – and that the only solutions will come from more research. Which means more federal funding.
They may have questions for you. One to be prepared for: why is research so important to you. The answer can be simple – because there is no cure, existing treatments have side effects and do not address all of the symptoms, and there has been only one drug approved specifically for lupus in over 60 years!
Bringing materials to leave behind will also serve as a reminder of your conversation. Here is a fact sheet about the disease, its symptoms and complications that you can bring along to refer to and leave behind. There’s a space for you to write in your name and email so staff can reach out to you for more information in the future.
Know in advance that it is possible you may meet with a staff person instead of your legislator. Meeting with the staff person can be just as effective since they help bring issues to the attention of the legislator.
Most visits will last between 10-20 minutes, so you want to make the most of your time. Be sure to arrive on time. If you’re running late, call to let the office know. You need to be able to state your case quickly and clearly. Know what you want to say and practice.
- Start the meeting by thanking the legislator and any staff present for taking time to meet with you. Introduce yourself and anyone with you. Let them know your connection to the Lupus Research Alliance and why you support the organization’s mission to fund scientific discovery. Ask if they know about lupus; be prepared to describe lupus as a chronic, potentially life-threatening autoimmune disease in which the immune system attacks instead of protects the body.
- State clearly that you would like the legislator to support funding for lupus research through allocations to the National Institutes of Health and the Department of Defense Lupus Research Program as described earlier. Tell them your own experience with lupus whether you have the disease or you’re there for someone else. Describe lupus’ impact to show why research to find new treatments is so important.
- If you’re meeting with a member of the House of Representatives, click here to look up in advance if they are a member of the Congressional Lupus Caucus which works to raise awareness of lupus among their fellow legislators. If they are, thank them for their support. If not, ask them to consider joining.
- You may be asked something you are not sure of. You don’t have to answer on the spot; it’s fine to say you don’t know but will get the information. Following up is a great chance to further build the relationship. If you’re stuck, email us after the meeting, and we’ll help provide an answer.
- Before you end the meeting, feel free to ask to take a photo with the legislator. You can share on social media and tag them so the office can share your post. They welcome a chance to show support for their constituents, and other people with lupus may be inspired by your post.
Close the meeting by once again thanking the legislator and any staff for their time and for considering your request for more federal funding for lupus research. Mention that you would be happy to answer any questions they may have in the future about lupus and that you will stay in touch.
Within a day or two, send a thank you note that includes any follow up you promised during your meeting. This is not only good manners, but another chance to further build your relationship and a chance to remind the legislator of your key points. Here’s a sample thank you letter you can copy or refer to when writeing your own.
One contact, letter, or meeting probably will not necessarily influence your legislator’s decision on an issue. But by building a relationship with your legislators and their staff – through letters, phone calls, and visits – you can make an impact. Feel free to reach out to them regularly – a phone call or email every now and then helps remind them of lupus issues.
You might forward eblasts from the Lupus Research Alliance to show how research discoveries are improving peoples’ lives. Legislators especially like to see news about what’s happening in their state or district. You could send an article about a local scientist working in lupus or a person whose story also shows the struggles lupus causes. We will post suggestions throughout the year for ways to keep in touch with them.
You also become a trusted resource, and they may come to you when they need information or the patient point of view. They are likely to want the facts when it comes time to consider a particular bill, and you can be a valuable asset. Be your legislators’ expert on lupus!