Coverage for Compounded Medications being canceled

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by munch1958, Aug 5, 2014.

  1. munch1958

    munch1958 Member

    I have Express Scripts and got many letters in July stating that I can no longer get coverage on any of my compounded meds. I finally got rid of all of my CFS/FM symptoms and now I had to obtain all new meds. I can no longer use the customized ones. I have to switch to Big Pharma. I have growth hormone deficiency, hypothyroidism and adrenal insufficiency caused by my sarcoidosis along with all the typical infection junk. Each month, I was getting 60 caps of 230 mg compounded T3 in slow release base and 60 caps of 60 mg compounded T4 in slow release base. 210 caps of compounded hydrocortisone in a slow release base so I could take up to 7 caps per day. 30 mg Estriol/testosterone cream to use at night. 45 Progesterone troche to dissolve under my tongue. 30 mg vial of Methylcobalamin per month if needed. I had also been nebulizing glutathione but it seems I don't need that as much anymore.

    There was not notification. My meds were just cut off in July. One of the letters said I had until Sept 15th to see my doctor for all new prescriptions for Big Pharma meds. But now they are not honoring that date. If I want anything compounded to tide me over until I see my doc the third week in August I have to pay for it out of pocket. Is anyone else in the same boat?

    There are some new advocacy groups formed to help patients obtain their compounded meds. I know of two of them so far. I don't think I can post a link here or have the rules changed? One is called Patients and Physicians for RX Access and the other one was just formed by the International Association of Compounding Pharmacists. I think they both also have FB groups. I have volunteered to speak to the media about this issue. I can't believe the CEO of Express Scripts gets paid his $12 million annual salary but us little people at the bottom of the food chain can't get our meds!
  2. munch1958

    munch1958 Member

    Here's the letter I got. If it violates any of the rules please take it off admins. I don't care that my name and address are on the letter. Most people know who I am after the many years I've posted on this board.

    Attached Files:

  3. mbofov

    mbofov Active Member

    Munch - I'm really sorry to hear this. I don't have any answers re your meds, but I don't think there should be any problem posting a link to the groups you mentioned. I think we're only not supposed to post links to sites which sell products.

    I hate that the people who make the rules re our healthcare are generally just in the pockets of big pharma.

    Mary