Hi Everyone!
Yesterday I watch the live stream of the Lupus Summit.
This is where hundreds of people in the medical field, sponsors, heads of all kinds of departments for lupus research gather in Washington DC from all over the world. After all of the introductions and thanks to the sponsors, the information becomes very interesting. Everyone knows that Clinical research is the key to better outcomes for people living with lupus. The more voices that congress hears give us a better chance for research dollars. Everyone with lupus, or if you are a caregiver or just know someone with lupus plays an integral role. The Lupus Advocacy Summit shares vital information from the pharmaceutical industry researchers. Several key players explained their opinions on very exciting research. Research expenses are astronomical. When the, "thing" took office he reduced or ended many medical researches. He actually zeroed out all Lupus research. Let me say that again. The "thing" ZEROED out ALL Lupus funding. However, people stood up. We went to congress, we made our voices heard, and guess what. Congress listened. They put back 10 million and then in the new budget increased the NIH by 4 hundred million. That was last year at this time. The new budget from the "thing" has again cut ALL Lupus funding and the NIH. Along with that, access to care has been cut as well. Medicare and Medicaid cut and ACA not renewed. If you do have insurance we now have to have a pre-authorization that takes weeks to see a specialist. Step therapy, and the lack of transportation for appointments. All of these barriers hinder the lives of people with lupus. I have several lupus friends that died last year. Lupus doesn't have a cure, Lupus doesn't care how old you are. Lupus doesn't care what nationality your are. Lupus doesn't care if you are male or female. All Lupus cares about is killing us from the inside out.
Your voice matters. Speak up! Join the millions that are at the White House right now fighting for us.
Check your local area for Lupus support and advocacy.
Please watch this.
I hope you get the support you so desperately need.
ReplyDelete...be strong, my friend!!!
ReplyDeleteGood luck
ReplyDeleteMore power to all of you Lupus Strong people and may federal lupus funding be restored!
ReplyDeleteReally important post. can really feel how much this summit and this issue mean to you, especially the way you bring in both the science and the real-life impact on patients and families. I also appreciate the reminder that advocacy actually changes things when people speak up together. That part about research funding and access to care really stays with you, because it’s not abstract, it’s daily life for so many.
ReplyDeleteThank you for sharing something so personal and important, and for encouraging others to get involved and stay informed.