Access to Treatment

Your MD can either write a letter or request a peer-to-peer review of your case with a medical director from your insurer to plead your case. What should be discussed is your functionality and pain level before and with the patches, as well as all of the other treatments that have been tried and do not work. Off label does not always mean an automatic denial. If there are any studies done for people with myositis and use of Lidoderm patches it should be referenced.

There are other commercial labs, such as Athena Diagnostics and NextGxDx that may be able to assist.

Yes, however, it depends on the site of care and the part of Medicare you have. For oral medications, they will likely be covered under Part D, which is a prescription drug benefit. For IVIG, if in the hospital or MD office it would be covered under Part B. At home, it would be covered under Part D. There will still be copays for Part D and unless you have a secondary or Medicare supplement, you would be responsible for 20% if covered by Part B. That’s the short answer! If you have specific questions about specific medications and want more info, contact me through TMA.

Not at this time.

This one is tough to answer without knowing your insurance. When an insurance requires pre-authorization, it means your physician must submit information showing the need for that medication. At this point, I would direct you to your MD office to the person there that assists with this.

Humana should accept the biopsy you had that was used to diagnose myositis. Below is taken directly from Humana’s IVIG medical policy as to what they require for both poly and dermatomyositis in order to cover IVIG. They will not cover IVIG for IBM.  “Member is diagnosed with biopsy-proven polymyositis and has failed treatment with corticosteroids and azathioprine or methotrexate.”

I highly recommend not only seeing a physician to manage your IBM, but one that specializes in treatment of inflammatory muscle diseases. TMA can recommend such physicians in your area. IVIG is not typically used to treat IBM. Some physicians will try it if you have problems swallowing.

Yes you do, especially because you have IBM. This form of myositis has been studied and shown not to be effective in treating IBM. There is some information about it helping dysphagia (difficulty swallowing) in IBM. But in general, IBM is typically on the list of excluded diagnoses for which IVIG would be approved.

Yes. Each insurer has a medical policy that outlines how IVIG is covered. You can usually obtain this through the insurer’s website.

I am hoping this link will assist you. I am not sure if IBM is on the list or not. Contacting the TMA directly might answer your question as well.  http://www.ssa.gov/compassionateallowances/  (Note:  also look at http://www.ssa.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm)

This means certain medications are put into categories of coverage where different copays apply. If you are concerned about the medications you currently are on for myositis, you should contact your insurance or have your pharmacy contact your insurance to give you detailed information of coverage. Any product or service covered by your insurance will be described by an Explanation of Benefits your insurance company is required to send to you. If you aren’t receiving this or don’t understand it when you receive it, you should call your insurance to have someone walk you through it.

Let me answer this a few ways. If you had a true allergic reaction to IVIG, the symptoms could be mild to severe. “Mild” would be a rash and “severe” could be difficulty breathing, swelling in your throat and (worst case) cardiac arrest. However, you can have reactions to IVIG and not be allergic. It is also possible to have reactions to IVIG which can be managed so that IVIG is tolerated. This can be done through pre-medications, proper rate of infusion, appropriate brand selection, and adequate hydration while on the infusion as examples. So to summarize, a reaction to IVIG does not mean you are allergic and a reaction to IVIG does not mean you cannot tolerate it. If you are having a reaction your should discuss it with both your infusion nurse and your physician.

It depends on your insurance but yes, most likely you should be able to receive this at home. The best place to start is by asking your doctor if you can get this at home and to make the referral on your behalf. If you would like additional assistance with this please contact me through TMA.

There are two studies that talk about use of IVIG in IBM to improve swallowing. Given that and the fact that you did have a positive response to IVIG, your physician can try to make a case for this with your insurance. The best way to go about this is to have your MD request a peer-to-peer review of your case with a medical director from your insurance. He should cite the studies and describe your swallowing before and after IVIG. If you received your IVIG at home, the home infusion company should assist with this. If you received this in the hospital someone in your doctor’s office familiar with reimbursement could help. If you would like me to assist as well please contact me through TMA.

This is hard to answer without knowing more info. It really depends on your insurance and the type of myositis you have. Each insurer has a medical policy which outlines how they will pay for IVIG. If you would like me to assist you with this, please contact me through TMA. I don’t think a lawyer would be of help at this point.

No they would not. You should see what your severance package from being laid off includes as some companies would offer continued benefits for a short time. Minimally they need to offer COBRA, where you can continue your coverage but you pay the premiums. Upon termination your employer must present you with information about COBRA.

Unfortunately, no. However, at some point after being on continuous disability, you would become eligible for Medicare.

You should discuss this with your physician for sure. You can also find out about current studies for myositis on TMA’s website, www.myositis.org.  (Note:  Find link at www.myositis.org or go directly to trials recruiting patients at www.clinicaltrails.gov )

You would go to that pharmaceutical company’s website and look for that info, or you could ask the pharmacist from the pharmacy where you obtain the medication. If you think you qualify as medically indigent you could also see if you qualify for your state’s Medicaid program, which would then likely cover your medications.