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.
Nicole, I hadn't heard about Lupus until I started following you recently. I hope they fund the research again. In this day and age with technology you'd think most things could be cured or controlled better.
ReplyDeleteHello Nicole
ReplyDeleteHere in the UK we have 'Lupus UK' which is the only national registered charity supporting people with lupus and helping those being diagnosed. They offer information, resources and medical talks, a free helpline, regional support groups and an online forum with over 32,000 members and a grant programme for research.
All the best Jan
I didn't know he cut funding. That's nuts. Pre-authorizations are taking forever ..if they get approved and most times they don't, at least for my daughter.
ReplyDeleteI wish you all the best! Good health and happiness. I don't think it is good for people to cut funding on health!
ReplyDeleteI have two friends with this disease, so I know how hard it is.
ReplyDeleteBoa noite minha querida amiga Nicole. Assim como a Ananka. Passei a conhecer, mais sobre o Lúpus, através do seu Blogger. Desejo para você, toda saúde do mundo. Uma excelente noite de terça-feira e um grande abraço do seu amigo carioca.
ReplyDeleteThe sad part is thing is totally ignorant about so many things, especially since he only cares about things that help him. I'm glad money got put back because these things are so important. Hope you learned some new things too. hugs-Erika
ReplyDelete'The things' has caused problems in many fields I have heard, what a pity. I hope Lupus gets the funding it deserves once again this year. You take care.
ReplyDeleteLe loup is a great symbol for the fight against lupus.
ReplyDeleteThankfully there are other areas of the world doing medical research. The US is not the only game in town.
ReplyDeleteThe cuts to health care and research make me so angry. I certainly hope that changes in the future.
ReplyDelete