This might be of interest and/or help for some members.

A Crisis Exists!

IVIG (or intravenous immunoglobulin) is a blood-derived product which is a lifesaving therapy for many autoimmune diseases, primary immune deficiencies, and neurological disorders as well as a number of other chronic conditions and illnesses. For many of these disorders, IVIG prevents life-threatening infections, paralysis, debilitating inflammation, pain and death.

Reimbursement changes for IVIG included in the Medicare Modernization Act of 2003 (MMA) dramatically impacted the estimated 30,000 Medicare beneficiaries who rely on IVIG as a chronic lifesaving therapy. For over three years now, Medicare beneficiaries who rely on IVIG have been shifted from one site of care to another—compromising their continuity of care and raising their concerns about whether or not they will be able to receive their treatment.

According to Center for Medicare/Medicaid Services (CMS) claims data, 42% of Medicare beneficiaries who had received their IVIG treatment in their physician’s office at the end of 2004 were shifted to the hospital outpatient setting by the beginning of 2006. Additionally, further reimbursement cuts that occurred at the beginning of 2008 in the hospital outpatient setting have begun to eliminate access to IVIG in the last site of care for many patients, the hospital, which has been considered a safety net for this community.

Take Action Today!

We have a small window of opportunity to have IVIG reform included in the Medicare package that is being drafted, but Senators need to hear from those directly impacted. It is important that the Senators hear from patients, family members, and healthcare providers who can speak directly to their experience with IVIG therapy and its impact on lives and patient well-being.

If you or a loved one has been impacted by the IVIG Medicare changes, please follow the link below to automatically send a personal e-mail to your U.S. Senator encouraging IVIG Medicare reform.

Remember to personalize the e-mail message by sharing your own story as an IVIG patient / family member / provider in your own words...it's much more effective!

Send a message to the Senate in support of including IVIG reform in the Medicare reform package!

https://secure2.convio.net/nea/site/...rAction&id=109

Thank you for helping to make a difference!

Thanks for positing this - while I was getting IVIG I was and on SSDI (Medicare) - its getting tougher and tougher to get - depending on your condition (and for those who use it for PN - its usually the most expensive option IF they approve you because the use is for "acquired immune diseases) - the cost is paid out of your Plan D Part of Medicare for home infusions - and the nursing not covered at all - this means that you have to find a home agency that is contracted with your drug plan - and that the will also accept Medicare patients as they do not get reimbursement for the nursing (more of a philanthropic measure towards those on Medicare) - just the med - and your co-pay on the medication - even at "catatropsphic level" since it is considered "specilalty" is still 25 to 35% of cost of med at each infusion - the full cost of the med each time is uaully around $2,400.00 an infusion - thats a large co-pay and many many cannot flat out afford it ... (unlike private insurance where typically when one reaches catasrophic levels, all costs are covered)..... Also, Medicare is restricting much more who may even get the med at all......

Thanks for the above - and hope people respond - even if they dont receive the med themselves!

SPITLESS! This will happen and soon. IF one has an ACQUIRED immune disease such as GBS or CIDP...your coverage under medicare IS NOT gonna continue! AT age 65....You will be at the mercy of whatever insurance plan you have as a supplemental... and those policies are clearly spelled out and can change at ANY TIME to exclude coverage.
Thing is most 'acquired' and not proven genetically inherited immune issues are not now and won't be covered any time soon by the GUMMINT. Plain and simple.
There has been only ONE clinical trial testing the 'efficacy' of IVIG as a therapy for CIDP...that was recently completed and it is STILL an 'off-label' use for CIDP! Ergo, not approved therapy by FDA? Not approved therapy by Medicare, etc.
Every person who is either entitled to receive this therapy or IS receiveing this treatment should contact EVERY SINGLE SENATE And Federal REPRESENTATIVE to make them aware of how important this is in your life!
You will have to work to keep this good stuff. SO DO IT!
No blithe snippets here please? This is truly serious stuff! Imagine if you can't HAVE IT? Some folks on this and other boards have commented on their problems NOT being able to get IVIG... Remember them! Please! - j

ALKYMST Many thanks for broadcasting this! THIS IS IMPORTANT!

and all of the supporting posts, as well!

I will contact my representatives and senators immediately on behalf of those in need of IVIG treatment!

Sorry about the problem, as it now stands.

Glad for the "alert!" Happy to help!

I think any of you belonging to other boards should cross post this info. I'm cross posting it to the Sjogren's Forum. Some of their members are dependant on this also. I'm a possible candidate for it in the future and will be on Medicare in only a couple of years.

Thanks Alkymst for this alert. It should be taken very seriously!

Billye

I'm cross posting from the Sjogren's website. One of the members receives IVIG and is knowledgeable about the process. Here it is: http://sjogrensworld.org/forums/index.php?topic=5625.0

Billye

Dahlek; I have a question.

You said: "IF one has an ACQUIRED immune disease such as GBS or CIDP...your coverage under medicare IS NOT gonna continue! AT age 65..."

Does this mean, that if one is 60, on medicare, that when that person is 65, and has been on medicare, that they THEN WON'T BE COVERED UNDER THEIR HMO (for IVIG I mean)??

Why is this? Why should there be a change when a person turns 65, if they have been on medicare for years before they turned 65??

Thanks,

Mel

My "best guess" is because at 65 your catagory changes.
The people that I know who were receiving Disability checks from Soc Sec were automatically switched to regular retirement SS classification upon reaching age 65.

Okay, but isn't medicare, MEDICARE!!! I mean, if you are on medicare and you are covered for certain things, then you turn 65, and they change your classification from disability to retirement, BUT YOU STILL ARE ON MEDICARE, right?

So why does changing the classification change the benefits that you were receiving?? I thought that once a person was on medicare, that when they turn 65, the medicare still continues. They might reclassify a person as 'retired" instead of "disabled", but I never knew abouts benefits changing, (especially if one is on an HMO)

I must look into this.

Thanks much

Melody

That you check out your state and city medicare resources to 'plan' and be 'aware' of how benefits can and do change at that 'golden number'. I also suggest that you either read or re-read all the back issues of IGLiving and see what kinds of issues people who have 'approved' ON-label IVIG uses have had in not only getting but keeping merely ACCESS to infusions. Many are now finding [even in NYS] that their 'plans' including BC/BS are either putting a 'cap' [lifetime or yearly] on the $ amount one can receive or upping the copay to half the total cost of a monthly infusion. This is an issue you have to plan for? You mite want to read the IGLiving back issues to LEARN that this is a big problem for ANYONE receiveng infusions. The only alternative approved therapy for CIDP now is prednisones and some cortisones.

IVIG is an OFF-LABEL use for CIDP[according to the FDA], even tho there has been a recently completed NIH trial for one brand of IG that was successful. It does not constitute FDA approval for the IG. Thing is, IG use has been accepted 'practice' by medical professionals for over 25 years and is approved for use by many insurance companies...but once that calendar year page changes over? The RULES CHANGE! Why? The COSTS CHANGE! Someone else also pays that BILL! Things are NOT automatic, and you might continue any benefits only if you have an extra 'supplemental plan'. I do not know much about these things other than they exist. I believe my own plan will be more generous than most for reasons that I will NOT go into here...EVER. I do know tho, that once that year happens, and you continue? You can get 'rejected coverage' backdated to that magic date and you can believe that those bills are well, HEFTY?

I suggest that you get to work and do your homework. This preparation is needed to be done for both you and ALAN NOW at age 60 for when you become 'of age'. I wish you luck and that YOU can share your own wisdom in the learning with all of us. - j