get involved...

I think many parents are probably aware of the current cost (and subsequent denial of insurance coverage in some cases) of ACTH. Acthar Gel is one of the front line treatments for Infantile Spasms.

We battled our insurance company and won. But sadly not every family does.

Of course we learned of NORD and Ms.Hardin. But frankly, when your child is seizing over forty times a day (and intensifying)...waiting for a call back can be excruciating!

Questcor claims to help. But I quickly found that there are piles of red tape to swim through. First. You can't proceed with the treatment and then worry about the paperwork.

Anyway...those that follow Trevor's story know that I finally got around to vent what we went through and posting it
here. But I also posted it on the MCH Wiki page set up by Miami Children's Hosptial.

I was VERY surprised to hear back from Dr. Miller who read my story and not only informed me of new developments but also enlisted my help. It's nice to know there are some doctors out there who value our thoughts.
  • The new development - synthetic ACTH is now available via Caligor Pharmacy in NYC for only $600 a vial. They are importing it from England and because it is not FDA approved it would be out of pocket expense. But still! Do the math...$600 a vial vs. $40,000 (which is what we were asked to pay)?! Dr. Miller has offered to walk any parents through the process (in tandem with their neuro) for two-fold reasons... 1) he truly wants to help through the heartbreak & treatment 2) he wants to track any/all uses of this new option because that information is invaluable should it ever come up for FDA approval
  • How we can help - if you have a blog please think about adding this Wiki page to your site. Dr. Miller has an email address where parents can share their ACTH story...along with many other resources on who/how to contact the people in power.
  • Share with your neurologist this new option of synthetic ACTH. He/she may be unaware that this is now available. And it could make a difference for another family.
  • And I am encouraging (bordering on begging) all parents who have fought over ACTH treatment to share your story.


Who knows...just maybe we will make a difference!


~Mama Skates~ said...

wow! the world needs more doctors like Dr. Miller....and more advocates like you! :0)

Shanna Grimes said...

That's awesome. You are so good. I really need to get more actively involved. For me I have had a problem finding the time. I feel like I can barely keep my house, work, volunteering, kids and hub straight. I know I need to make time for it, but I guess I am just hoping for time to magically appear someday :) One of the wishes I have besides world peace, cures for all that have ailments, the end of global warming and world hunger, is TIME! Why can't we make the days 36 hours instead of 24? Then we all might find the time to get more done.

baby trevor's mommy said...

My motto...


...in our jamies! :oP

It's amazing what you can get done if you don't get dressed or brush your teeth til' noon!

Thanks for the compliments girls!