[Zoe]

Question: Would blasts in the blood show up on an automated count, or only manual? Just curious.

Zoe

[Zoe]

Susi,

Great news! Glad to hear it. I go to The James also. Who is his doctor? I see Rebecca Klisovic.

Now that I think about it, I think we chatted before. Is your dad in McArthur?

Anyway, I am really happy for you all, and encouraged for myself. I am RA, not RARS, but the Aranesp is wonderful for me. I still drive up to The James every 3 months, but I get my monthly bloodwork and Aranesp injections here locally.

Zoe

[Zoe]

Maureen,

I am so sorry. I am grateful you all were able to be with him at the end. I am sure that was precious to him.

Zoe

[Zoe]

I am sorry to hear about your mom. Praying for you all.

Zoe

[Zoe]

Martirosso,

Welcome. Do you have MDS? Or does someone you know? What type?

Zoe

[Zoe]

I am so grateful. Don’t use Medicaid or Medicare, but I was worried my insurance would stop coverage if CMS did. I didn’t even realize how nervous I was about it until I received the above notice from the AA/MDS Foundation and I almost cried.

Zoe

[Zoe]

Wendy,

Sorry to hear about your dad. Hang in there. Take it one step at a time, and breathe.

Zoe

[Zoe]

Yvonne,

Here is some updated info.

Zoe

URGENT eAlert on Medicare and ESAs

July 20, 2007

We are pleased to announce that U.S. Representative Richard Neal (D-MA) has agreed to circulate a letter among his colleagues on the House Ways and Means Committee urging the Centers for Medicare and Medicaid Services (CMS) to preserve coverage of ESAs for the treatment of myelodysplastic syndromes (MDS).

As you may know, on May 14, CMS issued a proposed decision memorandum in which it recommended that ESAs like Procrit® and Epogen® no longer be covered by Medicare for “the anemia of myelodysplasia.” On June 13, the Aplastic Anemia & MDS International Foundation (AAMDSIF) submitted public comments and strongly objected to this proposed coverage change. The Foundation also met with CMS staff to reiterate the importance of ESAs for people with bone marrow failure.

Since that time, AA&MDSIF has been seeking support from key Members of Congress to keep ESA coverage. We are talking to staff of Members serving on the Ways and Means Committee.

To complement our efforts, we need your immediate assistance. CMS will be finalizing its decision any day now. Please see the list of Ways and Means committee members below. If you are from the home state of one of these members, please contact them and urge them to sign on to the letter that is being circulated by Rep. Neal. If you are currently using ESAs, please let them know how CMS’ decision would personally impact you and your family.

When you call your Member of Congress, please ask to speak to the legislative assistant who handles health care!

Thank you very much for your help, and please call the Foundation if you have any questions about this crucial issue.

Alabama
Artur Davis 202.225.2665

California
Xavier Becerra (202) 225-6235
Wally Herger (202) 225-3076
Devin Nunes (202) 225-2523
Pete Stark (202) 225-5065
Mike Thompson (202) 225-3311

Connecticut
John Larson (202) 225-2265

Florida
Kendrick Meek (202) 225-4506

Georgia
John Lewis (202) 225-3801
Jon Linder (202) 225-4272

Kentucky
Ron Lewis (202) 225-3501

Illinois
Rahm Emanuel (202) 225-4061
Jerry Weller (202) 225-3635

Louisiana
Jim McCrery (202) 225-2777

Maryland
Chris Van Hollen (202) 225-5341

Michigan
Dave Camp (202) 225-3561
Sander Levin (202) 225-4961

Minnesota
Jim Ramstad (202) 225-2871

Missouri
Kenny Hulshof (202) 225-2956

New Jersey
Bill Pascrell (202) 225-5751

Nevada
Shelley Berkley (202) 225-5965
Jon Porter (202) 225-3252

New York
Joe Crowley (202) 225-3965
Michael McNulty (202) 225-5076
Charles Rangel, Chairman (202) 225-4365
Tom Reynolds (202) 225-5265

North Dakota
Earl Pomeroy (202) 225-2611

Ohio
Stephanie Tubbs Jones (202) 225-7032
Patrick Tiberi (202) 225-5355

Oregon
Earl Blumenauer (202) 225-4811

Pennsylvania
Phil English (202) 225-5406
Allyson Schwartz (202) 225-6111

Tennessee
John Tanner (202) 225-4714

Texas
Kevin Brady (202) 225-4901
Lloyd Doggett (202) 225-4865
Sam Johnson (202) 225-4201

Virginia
Eric Cantor (202) 225-2815

Washington
Jim McDermott (202) 225-3106

Wisconsin
Ron Kind (202) 225-5506
Paul Ryan (202) 225-3031

Make a Donation | Visit http://www.aamds.org | Manage Your Subscription | Forward to a Friend
AA&MDSIF, P.O. Box 310 Churchton, MD 20733 U.S.A. | 800.747.2820

[Zoe]

Sandi,

Welcome to the board. Sorry I can’t really help with your questions, but I am sure someone can. You might try the search function also. I have found it to be very helpful.

Zoe

[Zoe]

Butch,

How wonderful! I was just thinking about her the other day. I am glad Alice took the initiative to ask and you responded.

Zoe

[Zoe]

If she goes to the hospital for the meds, the hospital may pick up some or all of the cost. I have to do this with my Aranesp. No way could I afford it. My insurance picks up most of it, and the hospital covers more. It is the only way I can do it. It means filling out forms every month, but at least I can get my meds.

Zoe

[Zoe]

Neil, Thanks for the warning about the 12.0 limit. That is what I meant actually, I was hoping to skip an injection

Bergit, I am currently on 300 mcg of Aranesp every 2 weeks.

Zoe

[Zoe]

Frankie,
Thanks for Bergit’s answer. It helped me too. You were just a little older than I was at my DX of 5q-. Sounds like you are still going strong.

Smoking is hard to give up. I can’t seem to stay quit. I am shooting for quitting again on July 4.

Zoe

[Zoe]

I have been on Aranesp since February of this year. My hgb is now in the 11 range also. It actually went up to 11.9 3 injections ago (I get them every 2 weeks). I was so hopeful it would hit that magic 12.0, but alas it has droped back to 11.6. However, I am very happy in the 11 range. I feel great and I am even getting a bit of a tan this year.

I have had no side effects. My whites and platelets remain the same. My whites are normal, and my platelets run a bit high.

Zoe

[Zoe]

Wow! I have missed something apparently. It is, however, discouraging to log on to see all this infighting. I don’t know what is going on behind the scenes, but I wish it would stay there. I have seen Patti try to incorporate words to stress she is presenting her opinion. Maybe PM’s are flying back and forth, I don’t know. Can we please stick to the topic and stop attacking people.

As for me, I have never seen blast count listed except on my BMB. That is from blood counts done at the hospital, hematologist, two different labs, and the cancer clinic. I always assumed they would only look for them if they saw something alarming, but there I go assuming again, so I reaaly don’t know.

Zoe

[Author]

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