promoted by BooMan.
I really shouldn’t be blogging because this week has been a personal nightmare for me healthwise, but my doctor’s office suggested I do further research on the internets today regarding kidney related Lupus tests that I need to have very soon and I came across a bill that needs support. Everything’s political, isn’t it?
more…
Bill S.756 (text – please read it), The Lupus REACH Amendments of 2005 (note the catchy acronym) was introduced on April 11, 2005 by Senator Bennett (R-UT) and has been co-sponsored by Senators Barbara Boxer (D-CA), Orin Hatch (R-UT), Mary Landrieu (D-LA), Patty Murray (D-WA), and Richard Shelby (R-AL).
REACH stands for Research, Education, Awareness, Communication, and Healthcare. The Lupus Foundation of America, Inc. is calling on interested citizens to contact their senators to sign on to this bill and has provided relevant links on their site.
The Office of Legislative Policy and Analysis provides a more in-depth look at Lupus and the reasons for these amendments. (Note: I know absolutely nothing about the politics of OLPA, but that’s just not a huge concern to me here, because this is an important health issue and their summary is non-partisan.)
From the OLPA site:
Lupus is one of many disorders of the immune system known as autoimmune diseases. In autoimmune diseases, the immune system attacks parts of the body it is designed to protect, leading to inflammation of and damage to various body tissues. Lupus can affect the joints, skin, kidneys, heart, lungs, blood vessels, and brain. Lupus can affect people of all races, but African American women are three times more likely to have lupus than white women and are more likely to die from it. Lupus is also more common in women of Hispanic, Asian, and Native American descent. At present, there is no cure for lupus; however, it can be effectively treated with drugs, and most people with the disease lead active, healthy lives.
The site then provides a detailed look at Lupus research to this point under the direction of the The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) along with the key provisions of the bill:
- Require the Director of NIAMS to act through the Secretary of Health and Human Services to increase lupus research at the Institute
- Delete the requirement that NIAMS must conduct and support research to determine the reasons underlying the elevated prevalence of lupus in women, including African American women
- Clarify that NIAMS would have to conduct and support basic research to discover the pathogenesis and pathophysiology of the disease
- Expand the number of racial categories that NIAMS would have to study to determine the reasons for the higher prevalence of lupus in these populations
- Delete the requirement that NIAMS conduct information and education programs for health care professionals and the public
- Add a requirement that NIAMS conduct and support research to validate lupus biomarkers and develop improved diagnostic tests
- Delete the authorization of appropriations section
If you have any questions about these provisions, please refer to the complete summary on OLPA’s site that explains the reasons for these amendments.
I don’t necessarily understand all of this at this moment because my head is so muddled from my illness right now, but – I trust Barbara Boxer and if she is co-sponsoring this bill, that’s good enough for me.
Although I’m Canadian and this is a US Senate Bill, the ramifications of this further research will definitely affect the quality of my life with Lupus in the future, so I urge you, even if I’m the only person you’ve ever heard of who has this disease, please take a moment out of your day and contact your senators. All of us with Lupus need your help.
Thank you.
Update [2005-6-10 15:14:51 by catnip]: In a very quick response to an e-mail I sent earlier today to the Lupus Foundation of America, I have some new information to share:
* first of all, I didn’t realize that the Senate Committee on Health, Education,
Labor and Pensions acronym is HELP. I like that.
* secondly, the bill now has 12 co-sponsors. Check to see if your senators are on that list.
* both senators from these states have already signed on: UT, MD and NJ.
* there is a House bill in the works and action will be called for when that hits the floor too. Contact your congresscritters.
