Prognosis and Hope: Today, people with lupus are leading healthier lives and living longer than at any time in history, thanks to researchers who continue to discover more about the underlying science of the immune system. When I was first diagnosed with lupus almost twenty years ago, this was not the case, and prognosis that people heard was not encouraging. Today life expectancy for lupus patient is much longer, and the information available about lupus life expectancy is more accurate and much more encouraging!
Lupus diagnosis, and other people’s’ negative idea of the prognosis
The first thing I heard from people after my lupus diagnosis was that my life expectancy might only be about ten years. Some people acted as if I had received a death sentence, and it sure sounded like the statistics were pretty grim. I was a young wife and mother, my doctor was more encouraging than everyone else, and I was concerned, confused, and frankly a little afraid. Why did everyone else think I was going to die prematurely, but my doctor said lupus was the good news in the diagnosis he had considered. I was diagnosed twenty years ago.
Lupus information in the “dark ages” before the Internet
My lupus diagnosis came during the early days of the Internet, when finding out information required physically going to a library and spending time in study. Although this sounds very cliché, “back then” we didn’t have the world’s information at our fingertips, not at work, at home, and certainly not in mobile devices! We didn’t even handheld electronic devices then, and there were only a few of the earliest mobile phones out there, in the hands of the wealthy few. It was definitely a totally different age and time, very unlike today’s information highway and instantaneous access to knowledge. What a vast difference a mere two decades have made!
Most of the medical and patient information books about lupus in the libraries were ten to fifteen years old. The bookstores were a little better, but not much. They all said much the same thing about lupus life expectancy as the widely held “live ten years” fable. There was little up-to-date information available to support a different outlook. Unfortunately, the false negative impression about life expectancy prevailed in what people thought then about lupus. Even though researchers had better information, the word was getting out very slowly, the old-fashioned way. Access to accurate information was slim and hard to find. Everyone pretty much still believed the ill-conceived fable. I asked myself and my doctor, “do I only have about ten years to live?” Fortunately, he knew better and encouraged me to be positive, but convincing other people was another matter!
How the grim 10-year lupus life expectancy myth started
I recently learned where the original wrong concept about lupus life expectancy started. Years ago, a major lupus research study was conducted over a ten-year period, and the patients’ lupus status was carefully followed for 10 years, and then the study ended. The widely publicized results of this ten-year research project were shared with the medical community and the public. The outcome was very good news for lupus patients. At the end of the 10 year study, more than 80 percent of the lupus patients who started out taking part in the study were still alive. But that is not what people “heard” when they learned about study.
Somehow, the news reports and information that was repeated from report to report about the study became slightly turned-around and turned upside-down to communicate a vastly different, almost opposite message! Instead, a false conclusion was propagated, misinterpreting the ten-year study results to say that “life expectancy for lupus patients is ten years.” Maybe it would have been less confusing if the researchers had explained it this way, “most lupus patients survive at least ten years after their diagnosis, or longer.” But the idea went out that way, and that is what seemed to stick in everyone’s minds. So, when I received my prognosis, the first thing people thought was that I would probably die in ten years. I am so glad that was wrong!!
Myth-blasting information, new lupus drugs and better prognosis
Now, there are some wonderful brand new medicines, such as the new biologic drugs like Rituximab (Rituxan) and Belimumab (Benlysta,) the latter of which was approved over a year ago by the FDA just for lupus, in March of 2010. Belimumab is the first new drug approved by the FDA for systemic lupus in over fifty years. Before that, the FDA had only approved three drugs for lupus: 1) aspirin, 2) prednisone, and 3) hydroxycholoroquine (Plaquenil.)
Our doctors and rheumatologists now know so much more about lupus than when the old “10-years” study was done. And even though that study really gave good news, the news is even better now. Doctors have learned more about lupus in the last ten to twenty years than in the 100 years before that. There are more new biologic drugs in research and development, and many are successfully progressing through clinical trials. Some of these new drugs will stand next to belimumab to help treat lupus in more effective ways.
This is the best time in history to have Lupus… although Lupus is still incurable, it is very, very treatable!
Yes, lupus can be fatal. In its most severe, organ-threatening flares, it can attack a patients organs, such as their kidneys, and quickly get them into serious medical trouble. This level of life-threatening lupus involves only the smallest percent of lupus patients. The key for all lupus patients is to get prompt medical attention, and to interrupt every single flare as fast as possible.
The role of lupus awareness in lowering mortality rates
One of my passions is helping spread two kinds of lupus awareness. Early diagnosis and treatment leads to less escalation of lupus severity, and that can mean lower mortality rates.
First, lupus patients need to know how to look at their disease in a way that will allow them to be victorious in reaching their goals and dreams. They need to know how to quickly get the medical care they need, and to find their best niche for happiness and a productive life. They need to be encouraged to cope with the hard parts of lupus, and to be resilient and to not let lupus destroy them or their joy.
Second, other people need to know more about lupus. Doctors, employers, family, friends and the community need to understand lupus better. They need to understand the importance of research, and more public involvement raising funding for research will help this important lupus research continue.
LFA lobbying in Washington, DC for lupus research funding
I heartily support the efforts of the Lupus Foundation of America (LFA) in getting the word out to raise lupus awareness, and to encourage financial investment in major lupus research. One of those activities is a well-organized annual grass-roots congressional lobbying campaign, involving patients from all over the United States.
Once a year, members of the Lupus Foundation of America converge on Washington, D.C. and arrange meetings with congressmen and senators to lobby for specific research funding and other critical education and clinical trials and doctor education. This lobbying that I participated years ago helped get funding for research in biologic drugs at the National Institutes of Health. We sat down in senators’ and representatives’ offices and talked to them about lupus, and asked them to support specific bills and efforts to fund lupus research. LFA lobbying efforts have been successful, and much-needed research has received essential federal funding over many recent fiscal years.
Reaping benefits of my own lupus lobbying efforts!
A few years after my first lobbying experiences, when lupus drugs that NIH had been researching moved into clinical trials, I participated in a phase III clinical trial for the biologic drug, Rituximab. The two infusions I received immediately stopped lupus from attacking my liver and central nervous system, kept me working, and helped me reclaim a more normal personal and professional life. I enjoyed a near remission for over five years and my lupus quieted down. Now, I am being helped by another biologic drug, Belimumab, that came to market through later research and clinical trials and was ultimately approved by the FDA just for lupus.
I never expected when I went to Washington to lobby for lupus research funding, that I would enjoy fruits of my lobbying efforts in my lifetime! What could be better than that?
Today, I am celebrating the progress of in lupus research and treatment achieved over the last decade, on this, the last day of Lupus Awareness Month for 2012! I trust this series of daily May posts about “31 Lupus Facts” has been informative, encouraging and helpful to you in your personal connection to lupus.