Doctors or Insurance: Who Decides the Best Lupus Treatment for Me?

Darla Gay avatar

by Darla Gay |

Share this article:

Share article via email
Benlysta, insurance

My rheumatologist’s office is almost two hours away from my home. He is highly regarded in his field, so I make the trip to see him every three months. I trust him to give me good advice. Starting at my first appointment, he has asked many questions and listened carefully to my answers.

He immediately changed all my medications and added a couple more he thought would be beneficial. He always draws several vials of blood and makes adjustments based on the results. He keeps up with all my other illnesses, not just the ones I see him about. For instance, he asks if I’m getting my eyes checked annually. He made notes about my thyroid surgery and the adjustments to my medicine for that. I don’t feel like I’m just a “chart” to him, and I don’t think he would ever steer me wrong to sell a particular medication. 

During my last visit, he told me about Benlysta (belimumab). The U.S. Food and Drug Administration approved the intravenous version of Benlysta in 2011, but now they also offer a self-injectable pen. The inflammation in my body is getting worse, so he wants me to add Benlysta to see if it will keep it under control. He thinks the self-injectable version would work best for me because of the distance from my home to his office. 

I agreed to try it, as I will try practically anything he recommends. If it doesn’t bring my numbers down, I can drop it and try something else. 

It all sounded good up to this point — until I received a call from his nurse the next day. My insurance company won’t pay for the self-injectable pen, but they will pay for the IV version. Which means I would have to make a four-hour trip every month either to the doctor’s office or a hospital. Not my idea of fun. 

I’m sure insurance companies have highly paid people making these decisions, but I’m having a hard time understanding this one. I can’t imagine that it would be cheaper for a nurse to administer an IV than for me to stick myself in the leg. 

In an article by Pharma Intelligence, Jessica Merrill writes, “[Benlysta manufacturer GlaxoSmithKline PLC] expects there may be some access challenges initially, given that the subcutaneous version will be reimbursed through the pharmacy benefit rather than the medical benefit, as the IV version is.”

That still sounds like the self-injection should be cheaper, so what is the delay? I know that insurance companies move like glaciers, but it has been available for two years. They should have all the kinks worked out of the system by now. 

Please don’t take this the wrong way, I am grateful for my health insurance. They take care of my medicine and doctor’s visits with only a co-pay. I know they have to make money to stay in business. But in this case, I’m trying to save both money for them and frustration for myself. 


Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.