May 20, 2014 at 9:01 pm (Uncategorized) (, , , , , , , , , , )

It feels like a miracle has happened to me.

When I last wrote, I was stuck between good and bad news. The sarcoidosis guru I see in Ohio recommended a promising new treatment for me. But the plan managers for my prescription drug plan refused to cover the expensive medication called Acthar. Since then, we went through two rounds of appeals with the plan managers, and got a resounding “NO” for our efforts. In fact, the bureaucrats wouldn’t even talk to my doctor. A “licensed pharmacist” made the decision that I should try IV prednisone—as if I haven’t endured numerous rounds of that over the past decade.

We had one round of appeals left. Unfortunately, the plan managers told us that even if we somehow convinced them to approve Acthar, they could opt to classify it in their pricing scheme so that we would have to pay for half the medication – which wouldn’t even count toward our annual out-of-pocket maximum. At somewhere around $30,000 a vial, such a victory over the plan managers would be a pyrrhic one. There is no way we could afford one month of such “coverage.”

I think I stopped taking real breaths after Jay got off the phone with the plan folks and told me the news. For the first time in many years, my doctor had a treatment that he thought might actually help me. After 3 months of Acthar, I could at least (hopefully) get a break from Cytoxan, the chemotherapy infusion I get every month. It felt like just as I heard the first good news in quite a while, faceless and nameless bureaucrats were snatching it away.

Here’s where the miracle comes in. The sarcoidosis guru put me in touch with a non-profit called NORD– National Organization for Rare Diseases (https://www.rarediseases.org/). In addition to providing advocacy and education for those affected with rare diseases, including sarcoidosis, NORD offers patient assistance programs. One such program helps patients obtain so-called “orphan drugs”—medications that treat rare diseases and so are not manufactured in large quantities and are often extremely expensive—like Acthar. I filled out an application, crossed my fingers, and kept holding my breath.

I found out yesterday that NORD approved me for full assistance so that I can obtain a 9-months’ supply of Acthar at no cost. I am overwhelmed with gratitude to NORD and its donors who made this possible. I can’t put into words how grateful and we relieved we are. I finally took a real breath. We can postpone our battle royale with the plan manager. I can try out this new treatment, and maybe get a break from the awful side effects of the Cytoxan. It brings tears to my eyes every time I think about it. All I can say and feel is “thank you, thank you, thank you.”


  1. Ellen Gregory said,

    Such wonderful news! XO

    • Rebecca Stanfel said,

      Thanks, Ellen!

  2. Jane Stanfel said,

    It is a miracle, for which an army of those who love you have prayed. We are still crying in happiness too. Mom

    • Rebecca Stanfel said,

      It really was a miracle Mom.

  3. t426 said,

    That’s awesome news! I’m so happyfor you.
    It also gives some of us hope when we run I to problems like this. By chance is your Dr – Dr. Culver?

    • Rebecca Stanfel said,

      Thanks! I had no idea organizations like NORD existed before I went through this, so I hope that writing about will help if other folks run into similar problems with their insurance companies. FYI, NORD also helps pay for travel to see specialists and to participate in clinical trials. Their web site is https://www.rarediseases.org/.

      You’ll have to forgive me, but on my blog I’ve made it a policy to never name any of my doctors publicly. I feel like they didn’t agree to be written about–for good or ill–when they took me on as a patient. That said, I’m happy to share any of my treatment decisions and doctors’ names privately (just not on the blog). Email me at chronic.town@hotmail.com with any questions and I’ll be happy to chat with you there. I hope this makes sense.

      Thanks for reading my blog and checking in!


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