This was a big week for me and I intend to write about all that is going on in the next few days. I want to begin with one of those “big” items, though, that has caused some mixed feelings and I appear to be one of the few people with lupus out there voicing some concerns.
There was the news of the new lupus-specific treatment, Benlysta, approved (with caution) by the FDA for some lupus patients. Good news that lupus has finally made some headway in gaining ground in research towards understanding more about the complexities of this disease. As I celebrate the initiative by researchers for stepping onto the road less travelled, I continue to emphasize caution in becoming too hopeful or feeling as though we have reached the ticker tape at the end of the race.
I know there are many out there celebrating this event and be assured that progress is something I truly do want when it comes to lupus treatment options. However, I am a wellness professional and it would be irresponsible of me to not point out some very key concerns and questions still needing answered.
Benlysta has limited range in its overall effectiveness, the target population within the lupus community and backing by the medical community (including service programs, insurance programs and industry, as well as the physicians themselves.) This means that now that we have new potential in our lupus treatment options, we must continue to see our overall health and wellness as a team approach within a big picture while considering to bring it into our lives.
Consider also:
~ The expense of this treatment option is estimated to be about $35,000 per year for each individual. Even if you have insurance or are on a state-supported medical plan, understand that they aren’t going to be jumping at the chance to put out that kind of money.
~ The slim margin that the FDA approved this medication. How much faith do you have in the FDA knowing what’s good for us down the road? If they are questioning it, …
~ Your ethnicity. This medication has not been approved for use among women of color, notably African American patients. Although they are continuing to test and there are patients who have benefited from taking it during the trials, the research just doesn’t back its use for this population.
~ Your unique form of lupus. Benlysta helps with fatigue, skin involvement and offers options to reduce or eliminate the reliance on Prednisone. Barely for some, more for others. Everyone’s lupus in unique to them and what will be effective for a few may not be for someone else and may potentially create more harm. There were deaths during the trial and, with this medication still in its infancy, remain diligent in assessing its benefits when speaking with your medical provider about incorporating it into your treatment plan.
~ Finally, the pharmaceutical industry is looking at lupus as a big money-making opportunity (not to sound like a conspiracy theorist or anything – it’s a for-profit industry.) The researchers are challenged by the magnitude of the immune system’s capacity to affect our lives. Big Pharma, however, sees great revenue potential in addressing an illness that covers a vast amount of symptoms to treat , not rid us of.
There is already difficulty for some of us to receive or even maintain a diagnosis of lupus, due to its variability, inconsistency and complications in symptoms. A cure, although wished for by all of us, is many years away. Today, we have to ask ourselves questions pertaining to our quality of life and who is in the driver seat in determining what is our own definition of “quality.” If your doctor is ready to begin, be sure to remain a key participant in your treatment planning and speak with your doctor honestly about any concerns you may have about Benlysta, or any medication you use.
I know we hurt. I know we are physically weak and live with symptoms that can be extremely debilitating. I am very happy to know that many of us have something new to consider. I also have worked with many people on strengthening their wellness by taking charge of their lives rather than seek out new medications. Everyone was thrilled with Prednisone when it came out, too. Keep in mind that Benlysta is still very new, so please consider all of your options and not just the synthetic ones. If you’ve ever paid attention to those ads on TV for medications, you’ve already learned that the side effects can sometimes be more brutal and life-altering that the disease itself. I just feel stongly in questioning the automatic reach for a pill or shot, rather than exploring more seriously other methods for taking care of ourselves as whole beings, not just physical ones.
You deserve to be more healthy and well~ and it will be up to you to really make that happen.
My response here is my own and doesn’t represent the entire MLWT community. I know it’s easy to say “do the work” when we feel so beaten down already. My posts here will become more proactive in offering options based on evidenced-base research and emphasizing local resources. Even if you aren’t in Oregon or SW Washington, I am certain you will find something you can use.
