I’m just one person. But my ego is big enough to speak on behalf of the 50 MILLION Americans suffering from autoimmune disease. So here goes: We’re sick of seeing doctors. We’re sick of writing our blogs. We’re sick of being advocates. We’re sick of being sick. And so are the people who love us.
We Need a Goal
A wise man once taught me about the Big Hairy Audacious Goal. I think our community needs a BHAG: Get us healthy and kick us the heck out of our overtaxed health care system.
If we cured autoimmune disease tomorrow, that’s $100 BILLION of direct health care costs wiped away. And that’s likely a conservative estimate. The $100 BILLION figure is based on the National Institute of Health (NIH)’s study on the 24 autoimmune diseases for which good epidemiology studies were available. As one who is stuck in lupus limbo, my investments don’t count toward those costs. And neither do my friend Racquel’s, who is now disabled due to a rare autoimmune condition that doctors are just now beginning to recognize and study. She’s in her 30s raising four kids and running a small nonprofit organization. And every month her meds cost more than most people earn in a month.
We’re Making Headway
- Last month, advocates from around the country descended on Washington for a special Congressional briefing on Capitol Hill. There they presented a new lupus research plan to guide the nation’s scientific community toward a cure! Lupus Colorado’s Executive Director Inez Robinson attended, along with our partners in the Alliance for Lupus Research and the Lupus Research Institute. The new National Institutes of Health (NIH) Action Plan for Lupus Research presents a comprehensive roadmap that builds on decades of NIH research efforts, yielding a wealth of new information toward improving understanding of lupus.
- Just this week, a possible trigger for lupus was identified, thanks to research funded by Lupus Colorado’s partner Lupus Research Institute (LRI).
- Other research from 2016 is indicating that only 20% of lupus is due to genetics. And there’s evidence that lupus patients have a unique microbiome, or bacterial makeup in their gut.
- There’s lupus research funding available.
- Personalized treatment of autoimmune disease is on the horizon.
Kick Us Out with a Cure
We’re ready. And you can help. Supporting lupus research is a win for us all. Since lupus is a systemic disease (meaning it messes with pretty much every system of the body you learned about in middle school), the more we know about it, the better off we’ll be to treat a plethora of diseases. In the autoimmune disease realm alone, there are 80 defined diseases. And an increased understanding of immune system activity can benefit us beyond lupus — people who receive transplants, AIDS patients, cancer patients, and patients of infectious disease are also likely to benefit from increased knowledge.