Brain Tumor Activism
Braintumor Website

An important issue has come up relating to how Medicare pays for Gliadel, and I am requesting help from everyone. There is a deadline of 6/12/2007, so I need everyone's immediate assistance! I would like you to post a comment on Medicare's website about this issue, and try to get 10 of your family/friends and your senators to also post a message. Email us a copy of your comment (use our feedback form)and I will compile them into a petition which will also be hand delivered to our contact person at Medicare.

Issue

Gliadel is a wafer that is implanted into the tumor bed at the time of a brain tumor surgery, which slowly releases chemotherapy. Gliadel is now the standard of care for Glioblastoma Multiforme. For details on Gliadel, click HERE

When Gliadel was first approved by the FDA, Medicare did not pay for it, and as a result, many patients were denied access to it. We fought Medicare on the issue (the first major legislative victory by the brain tumor community) and won - Medicare created a new billing code for Gliadel cases. However, Medicare is changing the entire in-hospital payment system, and the code that we worked so hard to get was lost in the shuffle. They published a proposed rule which results in most Gliadel cases being assigned to a code that pays so little that many hospitals would not be able to use Gliadel. We want them to change the wording of the codes to allow hospitals to use Gliadel in those cases where it is indicated.

INSTRUCTIONS:

  • There is very little time - so please do this right now. It only takes a few minutes. When you are done, email your friends and your senators and ask them to post comments also.

  • There is a sample comment at the bottom of this page. Copy the sample and paste it into your word processor to edit it.

  • To post it on Medicare's website:
    1. Click HERE to go to the regulations.gov website (It will open in a new window so you can read these instructions as you work)
    2. Look for the line that says Medicare Program; Proposed Changes to the Hospital Inpatient Prospective Payment Systems and Fiscal Year 2008 Rates (it is the last one now but that might change). Click the word GO
    3. Enter your zip code, country, category (select Individual if you don't fit the other categories), title, names, and if you belong to an organization, enter it - or you can leave the organization blank. Click CONTINUE
    4. The next page has a long list of Issue areas. Click DRG Reform and Proposed MS-DRGs
    5. This brings you to a form where you can enter your comment. Just copy and paste it from your word processor. Then click Save
    6. This brings you to a page that shows your comments. (Do not worry if the formatting isn't correct). Click SAVE COMMENTS and you are done with this part.
    7. Then submit the same comment to us. Click HERE
    8. Send an email to all of your friends telling them to post a comment! Better yet, have a party at your house and help your friends submit comments. It sounds hard but after you do it once, it is simple!
    9. Send a message to your congressman and ask them to help on this issue. Click HERE to get a list of Senators. Pick your two and ask them to help. If you hear back from them, let us know!
    10. We want to get all 100 US Senators involved. When you send a message to your 2 Senators, select your state here and click the button:


    Sample letter

    Edit it to talk about your connection to brain tumors!
    Note that Medicare may post your comments on their website
    Re: CMS-1533-P. Request for modification to MS-DRG 23 and MS-DRG 24

    I am a {brain tumor patient or family of, caregiver of, doctor of, nurse of, a brain tumor patient, etc} and I would like to request a change to the structure of proposed MS-DRGs 23 and 24 so that all craniotomy cases involving the implantation of a chemotherapeutic agent (ICD-9-CM procedure code 00.10) would be assigned to MS-DRG 23.

    You propose the following titles for these MS-DRGs:

    MS-DRG 23: Craniotomy with major device implant or acute complex CNS PDX with MCC

    MS-DRG 24: Craniotomy with major device implant or acute complex CNS PDX without MCC

    I would like to suggest that the DRGs be restructured so that their titles are the following:

    MS-DRG 23: Craniotomy with acute complex CNS PDX with MCC or major device implant

    MS-DRG 24: Craniotomy with acute complex CNS PDX without MCC

    Rationale: The proposed titles do not take into account the costs involved in implanting a device such as the Gliadel Wafer (and other new treatments in the pipeline). Gliadel is a device implanted into the brain which slowly releases chemotherapy. It is now considered the standard of care for malignant brain tumors.

    When Gliadel was first approved by the FDA, the payment for a brain tumor surgery with Gliadel was so low that many community hospitals could not afford to use the treatment and many patients lost access to it. CMS corrected the problem a few years later, by creating a new DRG for such cases (DRG 543). This removed the major barrier to access for Gliadel and put the decision on its use back into the hands of the doctors. (Thank you for that DRG!)

    The current proposed rule removes the DRG that you created to solve this problem, and without modifications to the new replacement MS-DRGs, we may go back to loss of access to this standard of care. This can be corrected by changing the structure of the new MS-DRGs to allow all cases involving the implantation of devices to be assigned to MS-DRG 23, even without a MCC.

    Thank you for your consideration of this important matter!

Note: Letters reported to each state: (if a state is not listed, we didn't get any from that state!)
 State  Letters Sent
 -1'  1
 AL  6
 AZ  1
 CA  7
 CO  1
 FL  1
 ID  2
 IL  3
 IN  1
 KY  1
 MD  4
 ME  1
 MI  3
 MN  2
 MO  1
 NC  5
 NJ  20
 NV  1
 NY  4
 OH  7
 OR  1
 PA  11
 RI  3
 SC  1
 TX  1
 UT  6
 VT  2
 WA  4
 WI  1
 WV  2



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