Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
which would be the biggest headache for nurse. .if my secondary insur was primary I was looking at least a 3month fight for pre with!
just get to sit or lay on floor. Hope you get answer soon from drs. Take care everyone
I'm so sorry that you are having such troubles with the medicare issue. Do you have any other issues such as rheumatoid arthritis or Lupus that would qualify you for the infusion? I'm not sure what medicare considers "approved for use" with that drug. It seems to me that medicare paid for it though I haven't done a prior auth in the past for that treatment for MG so I don't know what they deem appropriate or not. I will try to do a bit of research on that and get back to you.
In the mean time please keep your chin up and try to do something that makes you happy at least once a day. It doesn't have to be a lot or even very demanding. Just find one little thing that always puts a smile on your face. I like to watch funny animal and children videos online. It's hard to be depressed with a smile on your face. Big hug to you dear. I hope you feel better and get some answers very soon.
Love,
Angie
Okay, I'll try again. I agree with you on the belly laughs. I think I'll try to bring back the "You might be an MGer if" post. Especially since there appear to be a lot of newbies lately. It is always good for a laugh and the new members will have an opportunity to add to it too.
As for the Rituxan, I haven't done any prior auths for that for a patient with MG. I'm so sorry that you are going through that issue. Delaying your treatment is never a good thing. Are there any other conditions that you have that this drug would be covered for? I know that it's used to treat patients with other rheumatological issues but I can't remember if they use it for Lupus and Rheumatoid Arthritis, etc. I will try to do a little research and let you know what I find. I have a couple of sites that I use at work that might let me know what medicare deems "off label use". I will let you know if I find anything.
In the mean time please keep your chin up and try to find something that makes you happy every day. I like to watch funny videos online. It's hard to be depressed with a smile on your face.
I hope you feel better soon and that you get your treatment asap. Big hugs to you my friend!!
love,
Angie
Rituximab (Rituxan) (L29472) - Medicare Policies and Guildelines
Original Determination Effective Date: 2009-03-02
Latest Revision Effective Date: 2014-02-13
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Indications and Limitations of Coverage and/or Medical Necessity
Non-Hodgkins Lymphoma (NHL)
22 Previously untreated follicular, CD20-positive, B-cell NHL in combination with first line chemotherapy and, in patients achieving a complete or partial response to Rituxan in combination with chemotherapy, as single-agent maintenance therapy.]
22 Patients with relapsed or refractory, low-grade or follicular, CD20-positive, B-cell, NHL as a single agent.
22 Previously untreated diffuse large B-cell, CD20-positive, NHL in combination with CHOP or other anthracycline-based chemotherapy regimens.
22 Non-progressing (including stable disease), low-grade, CD20-positive, B-cell NHL, as a single agent after first-line treatment with CVP chemotherapy.
Rheumatoid Arthritis (RA)
22 In combination with methotrexate to reduce signs and symptoms and to slow the progression of structural damage in adult patients with moderately-to severely-active rheumatoid arthritis who have had an inadequate response to one or more TNF antagonist therapies.
Chronic Lymphocytic Leukemia (CLL)
In combination with fludarabine and cyclophosphamide (Fc), for the treatment of patients with previously untreated and previously treated CD20-positive CLL.
Wegener's Granulomatosis and Microscopic Polyangiitis
In combination with glucocorticoids, for the treatment of adult patients with Wegener's Granulomatosis (WG) and Microscopic Polyangiitis (MPA)
Medicare will consider the use of Rituximab as medically reasonable and necessary for the FDA approved uses as well as the following off-labeled indications:
22 Second-line or salvage therapy with or without radiation therapy (RT) prior to autologous stem cell rescue for progressive disease or for relapsed disease in patients initially treated with chemotherapy with or without RT in combination with bendamustine
22 Low grade or follicular CD20-positive, B-cell non-Hodgkin's lymphomas (re-induction treatment appropriate for responders and patients with stable disease)
22 Intermediate and high grade NHL when used as a single agent, in combination with a CHOP (Cyclophosphamide, Doxorubicin, Vincristine, and Prednisone) chemotherapy regimen, or in combination with other agents active in the disease
22 Immune or idiopathic thrombocytopenia purpura
22 Evans' syndrome
22 Waldenstrom's Macroglobulinemia
22 For the treatment of refractory thrombotic thrombocytopenic purpura (TTP) for patients who do not respond to plasmapheresis.
22 Autoimmune hemolytic anemia
22 Rituximab is covered for those patients with autoimmune hemolytic anemia condition that is refractory to conventional treatment (e.g., corticosteroid treatment and splenectomy)
22 Steroid refractory chronic graft versus host disease
You are right. Rituxan for refractory MG is still considered by Medicare, as an off-label use. Not normally covered. That may change in the future, as small clinical trials are underway.
Even so:
My Neurologist and PCP filed paperwork with some sort of regional Medicare Panel - to get Rituxan approved for my refractory MG. This panel is actually part of a private insurer. (These days: I guess most of Medicare is actually administered by private companies).
As it was explained to me: the panel was presented with a summary of my medical history, including my myasthenic crisis, and the lack of response to Medicare approved treatments. The issue of liability was raised if the treatment was denied, citing studies at Yale, studies which showed excellent results against refractory MG.
Approval was speedily granted for treatment; I have been receiving Rituxan for 18-months. And it indeed saved my life.
(Sidenote to newbies: don't let this sort of thing scare you. Only about 20-percent of MGers ever go through a myasthenic crisis.)
There are other people here on DS, who are on Medicare and who are being treated with Rituxan. The general success of the drug - is becoming more widely known and appreciated.
1 of the key issues in all this, I guess - is the word "refractory" = not responding to any other established treatment.
Hope things work out okay - Ross
** Very important: IV-Therapies like Rituxan are generally covered under Medicare B. This covers only the first 80-percent of the cost (many thousands of dollars, for each infusion).
If you don't have it already, get a Medicare Supplemental Insurance, to your Medicare B. This will cover the other 20-percent , of any IV-Therapy (IVIG, Rituxan). I have one now, it costs $130 a month, paid quarterly at $390. I did not have this Medicare B Supplemental, for most of my treatment - and racked up a lot of personal medical debt.
I have Medicare and Tricare for Life (military) If Medicare pays then Tricare takes the rest. (actually, hospital ends up writing off a lot due to contractual with US Government)
I will keep you guys informed to progress.
Because you have two different federally insurance policies it means that if Medicare doesn't authorize it, neither will your Tricare. Tricare by itself is extremely difficult to work with (on many levels) but as you stated, if medicare pays then they will too. It's kind of an all or nothing deal with federally funded programs.
I hope that you can get this all authorized and you can get your treatment asap.
Hugs and love,
Angie
Peer Review Panel, I could not remember the name.