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Von Willebrand Disease (VWD) - Online Support Group

Los Angeles Specialist and a few questions

Hi, my mom as just diagnosed with VWD. We think she has 2B. She has continuous internal bleeding… she had to have blood transfusions…and now she has MGUS (or the MGUS caused acquired VWD). Her Hematologist sent us to Dr. Quon in Los Angeles.

Has anyone else had to have blood transfusions?

Is Dr. Quon THE specialist in Los Angeles?

Does anyone else have VWD as a result of MGUS?

How long can you stay on Amicar?

And…has anyone had Amicar compounded? We keep paying $800 for 20 pills.

Thank you in advance!

Kate

There’s something wrong here, that price is outrageous. I’ve worked in a in a pharmacy for 15 years (prescription benefit manager, really) and have worked in health insurance in general for 25 years. You need to do the following:

  1. Check your pharm receipts, are they even using your insurance?
  2. Call your insurance and get coverage details
  3. Do you need a prior auth for the medication?
  4. Is it a speciality drug with special cover requirements? Should you be filling at a speciality pharmacy?
  5. Do you need a prior auth for the compounding?
  6. Is this being done as an infusion? If so are they billing medical? Pharmacies typically don’t cover infusions.

And as an aside, why is it being compounded? It comes in 500mg and 1000mg tablets. Your insurance is always going to perfer pre-made dosing to compounds for the best coverage.

Hope this helps get you some answers.

azurelle

Thanks for the info. I took my mom back to the specialist yesterday and I told her that we paid $800 for 40 pills (not 20 x sorry), and she gave us generic for 1/7 of the price. The only pharmacy in Los Angeles that we could find that would order it was a CVS and they charged upwards of $20-40 a pill. My mom‘s insurance would not cover it. But $100 for a nice supply is OK - the doctor also changed her to some form of tranexamic acid - and now they don’t want her to take the Amicar. We are beyond confused.

Thank you so much for the info :slight_smile:

Oh - I was asking about compounding because the compound pharmacy was only going to charge us $100 as well, but I didn’t know if it was OK to get it compounded. Thanks again. Do you think anyone will answer any of my other questions? This is a quiet forum :frowning:

Check with your mom’s insurance for a prior auth or coverage appeal. You can always request a reconsideration of coverage based on your specific circumstances.

Remember, fundamentally your insurance wants you to healthy, healthy people cost less! Therefore reasonable requests for coverage will be quickly granted.

azurelle

Hello Canyonk8,

I’m so sorry you’re all going through so much!
I can’t answer a lot of your questions, but I can say that I have had to have blood transfusions due to VWD (I have type 3) in the past.

In fact, without some serious medical intervention, I would just continuously bleed, all the time. I am happy to say I don’t have to worry about that aspect now, as I had a hysterectomy to stop the continuous flow. But that was me.
Before that, I had more than one life threatening bleed-out and had to go to the hospital and get transfusions.

I am unfamiliar with MGUS.
As you are dealing with Los Angeles, (I am from there, too!) I’ll say that I am a Kaiser member and so my doctors came from there. This was awhile back and so I don’t know Dr. Quon, but it’s good to get a specialist in VWD.

When you’re first diagnosed, that’s the hardest time, I think (well, right before was THE hardest time, for me!) but it’s when you’re trying to figure it all out. I hope the best for you, stamina and clarity of mind as you work through it all.

I will say that I’m doing very well now and try to be careful, of course, but have much more good days than worrisome ones. I say that as an encouragement to your situation.
I’m sorry I don’t know more about the other things.
Blessings on you

Skylette! Thank you so much for this. I didn’t see this.
I’m soooo glad to hear you are doing well. Do you like your specialist at Kaiser? Could I ask you for a name?

Thanks, Azurelle. The trans acid is affordable - I hope it works. My mom only has Medicare - but she must have not checked the box for part D.