Medicare non-coverage for procrit,, etc.

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• May 18, 2007 at 6:55 pm #18170
  chuckk333

  Member

  The request for action regarding the proposed non-coverage by medicare for the cell stimulating drugs is very important for those who suffer from anemia (low Hgb) resulting from mylodisplasia (MDS) However in reading the proposal for non-coverage, it is very technical and beyond effective comments from we non-medical patients. I hope that the administrator for our forum can give us a suggested wording for our comments and guidance on to whom to address the comments as well as our congressional representatives and senators. Perhaps we can solicit action on the part of our doctors.

  May 21, 2007 at 8:41 pm #18171
  candy

  Member

  Yes! My mother was DX with MDS in January and her hematologist told her recently that Medicare will no longer pay for the Procrit. I have been trying to decipher the Medicare information and having difficulty doing so. Any help would be appreciated!

  May 21, 2007 at 9:16 pm #18172
  chuckk333

  Member

  The proposal is currently just that, a proposal. Medicare should still cover procrit for MDS patients. At least that’s the way I read it.

  May 22, 2007 at 9:06 pm #18173
  celebrations

  Participant

  Hi, I have been receiving EPO since 4 weeks now…it seems to work, for my HGB has developped from 9,1 to 10,5 – and my energy level has really increased…..I am feeling better, working is easier…Now I have read all about these alarming side-effects of this drug and I am highly worried !!!
  Shall I stop taking it because of probable harm…or is this just an attempt of the pharma industry to get rid of the responsibility of paying for EPO…
  How do you see that?
  And what experience do the forum members have with the response to erythropoetin injections…!
  And with possible side-effects?
  PLEASE TELL ME!
  I am so uncertain about continuing now. My hemo told me, unless we don’t go over HGB 12, there wouldn’t be any use to worry..
  What do you think????
  Greetings, cele

  May 28, 2007 at 5:32 pm #18174
  Terri

  Member

  Here is info from the AA/MDS International Org page on this Looks like final decision could take til end of this year but for now all should be covered. Hopefully it is overturned for those that need these drugs.
  Changes in Medicare
  In March, the CMS opened a National Coverage Analysis (NCA) to evaluate the uses of ESAs in off-label or non-approved indications. CMS accepted all public comments submitted by April 13 (the end of the 30-day period), including those comments submitted by the Foundation on behalf of all bone marrow failure patients. On Monday, May 14, CMS issued its proposed decision memo in which it recommends, much to the surprise of the hematology community, not covering ESAs for anyone with MDS. The Foundation is now thoroughly examining the proposed policy and preparing its comments on the proposed decision memo. The Foundation intends to reiterate the scientific literature that shows the limited risks of and the valuable benefits of ESAs for people with bone marrow failure. In addition, AA&MDSIF will determine what additional actions will be most appropriate to help all with bone marrow failure get the treatment they need. All comments to CMS are due on June 13, and CMS will then review the comments and issue its final decision, possibly not until the end of 2007. Until a final decision is issued, Medicare policy remains the same, and Medicare beneficiaries with MDS should have any ESA treatments covered by Medicare.

  May 28, 2007 at 6:40 pm #18175
  chuckk333

  Member

  I have emailed my comments to CMS (Medicare Services) as well as my congressmen and senators and used the following wording, in case this might help people to make their comments. I would suggest that some changes of wording might be appropriate. (or not)

  For the congress contact.

  “CMS (Medicare Services) is proposing to discontinue coverage for the use of certain drugs on other than patients with renal diseases. There are many other patients with other diseases that rely on these drugs to treat their disease and to maintain their quality of life while undergoing treatment. Those with bone marrow failure are particularly in need of these drugs. It should be their choice on whether the small risks are worth the signicant benefits of using these drugs.

  Please use you influence to get Medicare to not discontinue coverage for use of these drugs on those with bonemarrow failure diseases.

  for the CMS comment:

  There are many patients with other than renal diseases that rely on these drugs to treat their disease and to maintain their quality of life while undergoing treatment. Those with bone marrow failure are particularly in need of these drugs. It should be their choice on whether the small risks are worth the signicant benefits of using these drugs.

  Please do not discontinue Medicare coverage for these drugs for MDS patients.

  May 31, 2007 at 11:26 pm #18176
  riley

  Member

  I received an email from AAMDS about this today. Here is the link to their sample letter:

  http://www.aplastic.org/aplastic/disease_information/drug_information/how_you_can_make_a_d.php

  June 1, 2007 at 12:10 am #18177
  Bec

  Member

  My Dad went to Dr. today. Apparently, Dr.s do not even know this is going on. He told my parents that this decision would not affect my Dad. If I understand the posts above, Dads Dr. is wrong. Either way we are all going to write our Congressman.

  My Dad is an excellent example of someone that procrit has helped. He was on it in 2001. He did not like its side effects so he chose to discontinue. After trying many other options, and after Dad began requiring bi-monthly and sometimes weekly tx, he asked for procrit back. He would rather have side effects than get tx so often. We do not know why, but Dad is now going 9 to 12 weeks without tx. Today his blood had only dropped .02 points since last week. His blood use to drop more rapidly.

  My whole family is writing….

  We need procrit.
  Bec

  June 1, 2007 at 12:05 pm #18178
  cthomas555

  Member

  I think this is the latest news on the epogen issue.

  http://washingtontimes.com/business/20070531-103433-8731r.htm

  June 3, 2007 at 6:50 pm #18179
  Neil

  Member

  In addition to sending your comments to Congressmen/women and Senators you can go directly to CMS and post your particular situation/argument.
  The address is:
  http://www.cms.hhs.gov/mcd/public_comment.asp?nca_id=203&basketitem=

  You might also want to look at an article in the 5/25/07 edition of the Wall Street Journal. “Some Doctors Quit Injecting Drugs Over Costs”
  The gist of the article is that some docs do not get a large enough rebate from Amgen Johnson & Johnson to make Procrit/Aranesp profitable.
  Avery Johnson and Heather Won Tesoriero are the reporters.
  An interesting article and another perspective.

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