Huntington Disease Lighthouse Families

For HD families ... by HD families
 

Call To Action

Posted by normzach 
Call To Action
December 06, 2013 05:13PM
This is for those pHDs and care givers being serviced by the specialty pharmacy Accredo – pay attention and do something !!!!!!!!!!!!!

Previously posted about the fiasco trying to reorder Linda’s Xenazine Rx from Accredo via the 800 number. With help of the Xenazine info center, Chris??? thanks, Accredo Florida confirmed delivery would be on 12//6/13. Another phone call from Accredo Tennessee confirmed insurance information. Guess what - UPS did not show as Accredo promised.

Called in the cavalry, the Xenazine information center, again. They tried to contact Accredo, after holding for 30 minutes a real person answered – the original refill order was never scheduled and now was too late, after 4:00PM, to schedule shipment and they don’t work on the weekend - shipment now scheduled for Monday with delivery on Tuesday. Linda runs out tomorrow

We, as a community, can send a strong message to those who benefit from this disease, i.e.Accredo. Care givers and pHDs can contact the information center, 1-888-882-6013, and request to be switched to another specialty pharmacy. If Accredo is servicing only 20 pHDs with a Xenazine Rx the same as Linda’s, that will be a loss of annual revenue of over $1,600,000 to Accredo.
Re: Call To Action
December 07, 2013 08:28AM
Beyond changing specialty pharmacies, pHDs and caregivers can voice their distrust of Accredo to service prescriptions by filing a formal compliant. In our case it is Medicare, [www.medicare.gov], and TriCareForLife, [www.tricare4u.com]’ The web is great for this as it leaves a paper trail that can be retrieved if needed. It will also will give needed visibility in the service being paid for by your insurance.

A call to the Xenazine information center, if only to question the ability of Accredo to provide responsive Rx service to you, will serve as a red flag to Lundbeck that it has problems with a supplier to the HD community.

On a personal note – “were are sorry you are experiencing “whatever” just does not cut it. What is Accredo and Lundbeck doing to correct the obvious gaps in oversight and implementation of service? From a consumer view point – move on to another source.

OT – for anyone out there who is an Egg’er, one who uses a BigGreenEgg grill, I did a recipe/method for smoking turkey that is different and resulted in a delicious Thanksgiving dinner. Let me know if you want the recipe.
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