Today, Stephen Paget, M.D submitted a video on Medscape expressing his concerns regarding the latest results in clinical research trials of a few of the 20 new potential therapies for lupus. He also encourages fellow rheumatologists, who understand lupus and outcome assessments, to join in on bringing “drugs from the bench to the bedside” of lupus patients. He makes a couple of key points that echo several of the concerns expressed in blogs, social networking sites, articles and in general discussion among patients frustrated with their medical options that deserve repeating here.
One point is that there haven’t been any new drug therapies specifically for lupus in several years- in fact, 50 years and counting. Recently, there have been some disappointing clinical outcomes from potential lupus therapies. These drugs held a great deal of promise to successfully control, avoid after effects and spare steroid use for lupus treatment. Yet, in clinical trials for Rheumatoid Arthritis (R.A.), there have been successful outcome assessments in therapies and these encouraging results are now leading to more medication options for those patients. Although R.A. is considered a “cousin disease” of lupus, these trials speak clearly to the improved understanding of how the disease R.A operates and only reinforces the well-known fact that we still have a lot to learn about lupus itself.
The second point is that, without the clinical trials showing successful therapy options for lupus patients, the other drugs used to treat related conditions have not been approved by the FDA for use in treating lupus. Without FDA clearance or approval, it allows third-party payers to refuse coverage for use of these medications as lupus therapy options. The financial, emotional and health burdens are placed upon the patients themselves and furthers the frustrations between patients and their physicians in seeking disease control. As patients seek results-based health care, the physicians recognize the restrictions they have in answering that call and are bound to more evidence-based requirements until the FDA climbs aboard.
So, as patients, what can we do?
For starters, we can learn about clinical trials and begin participating in them. We can voice our concerns to our physicians/rheumatologists and encourage them to answer Dr. Paget’s call for an active stance in seeking medical options for lupus patients. Finally, we can become members of lupus organizations that hold fundraising events and offer advocacy opportunities to encourage the medical and governmental communities to listen. For them to not only listen to our personal challenges in living with lupus, but to understand how many of us there are. So many are going under-insured, have restricted coverage or are lacking regular medical care causing dangerous disease progression. They also need to listen to the fiscal costs and service burdens placed upon social and state programs.
This lack of collective action in preventing or minimizing the eventual disability for many lupus patients strips them of their independence and isolates them from our communities.
As one of the well-known principles of physics states: Energy must amass over time before perceivable change occurs. Got your oil can handy?
