What is meant by "Advocacy" in the context of LUPUS?

There are four things relevant to LUPUS which need ongoing support:

• Research into treating the effects of LUPUS.
• Education of the medical professionals about the ways that LUPUS presents.
• Caring for the uninsured and the poor who struggle with the disease.
• Research into finding the source and the cure of LUPUS.

The Practicalities are:

FACT: The primary source of LUPUS research funding is the Federal Government. In fiscal 2001 Federal funds will provide approximately $55,000,000. (67%)

FACT: Private industry will fund another $21,000,000. (25.6%)

FACT: Non-for profit organizations will provide another $6,000,000. (7.4%)

Because the Federal Budget is the major source of Lupus Research Funds:

Advocacy attempts to sensitize the public and our legislators to these facts:

• LUPUS is a disease affecting almost 1 1/2 million Americans — a significant number of the population.
• LUPUS is a widespread, little-recognized, and potentially fatal disease affecting mostly young women and minority groups.
• LUPUS related research and support should get its fair share of the Health Care Budget (it has been historically under-subscribed).
• LUPUS has a symbol —- a bright orange loop. We use this symbol in the way that red ribbons are used for AIDS awareness, and pink ribbons for breast cancer awareness.

The Orange Loop —- besides being a recognizable symbol of the disease — also symbolizes for us the circle of knowledge that individuals at risk for lupus must possess —- to suspect their diagnosis; and to seek medical help from specialists who thoroughly understand the complexities of LUPUS diagnosis and treatment.

What do we hope will happen with Federal Funds?

It is the hope of our Advocacy program, that the funding for the National Institutes of Health - the world's largest medical research facility in Bethesda, Maryland - will be on the path to doubling its funding by the Congress by the year 2003. This would benefit research on all diseases. But we also need to be certain that sufficient funds will be there to support the National Institute of Arthritis, Musculoskeletal and Skin Disease, which is the primary NIH institute for LUPUS research.

But it is not only research that needs support. Grants are needed so that non-profit hospitals and health care institutions can provide medical care to poor or uninsured people with LUPUS.

The Lupus Alliance of America Advocacy Web Page contains information on current legislative priorities.

How can you help?

The Lupus Alliance Website gives a number of suggestions, including ways to become an advocate for governmental assistance.