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Myeloma Minute - June 30, 2006


Revlimid in Combination With Dexamethasone sNDA Granted Approval by FDA for Treatment of Multiple Myeloma
The U.S. Food and Drug Administration (FDA) has granted approval for its Supplemental New Drug Application (sNDA) for an additional indication for REVLIMID (lenalidomide), for use in combination with dexamethasone as a treatment for patients with multiple myeloma who have received at least one prior therapy. (from PharmaLive)

Revlimid® Approval for Myeloma Can be Life-Changing for Cancer Patients

We are pleased that REVLIMID has been approved, but we are concerned about the high cost of cancer therapies in the current reimbursement environment. On the International Myeloma Foundation hotline we hear daily from myeloma patients who are forced to choose medical alternatives when costs are too high and reimbursement too low. We will look into reimbursement for Revlimid and coverage under the various Medicare plans and help our patients through the system. As patient advocates we will work with Celgene, with other pharmaceutical companies, and the government to help ensure that therapies are available to all who need them and are not out of reach because of price or reimbursement.
AMEN's First Anniversary
This is a beautiful and moving video chronicle of the founding of AMEN, the Israeli Association of Myeloma Patients, and the power of hope and support. In Hebrew with English subtitles.

Bones Hold the Key to Blood Renewal
Though we think of them as solid and permanent, our bones are actually constantly being rebuilt throughout our lives. A team of scientists at the Weizmann Institute of Science has now revealed how cells that work at remodeling the bones play a direct part in the ongoing renewal of another system – the blood. Their findings may lead to future improvements in bone marrow transplantation. (from Newswise)

FDA to overhaul clinical trial oversight
The agency said the new effort is part of a broader plan spanning all agencies under the Dept. of Health and Human Services to use recent advances in basic science -- such as genomics and molecular analysis -- to make the development and review of new drugs more effective and to promote more targeted and individualized care management for patients. (from United Press International)
  • A Comparison of Average Sales Prices to Widely Available Market Prices Fourth Quarter 2005: Report from the Department of Health and Human Services, Office of the Inspector General (OIG).
    The report is as ponderous as its title, but the gist is that the OIG surveys to determine widely available market prices (the price that a prudent physician or supplier would pay for the drug, net of any routinely available price concessions) and compare average sales prices (ASP) with these widely available market prices.

    The OIG recommends that Medicare could save millions by lowering reimbursement rates if the ASP for drugs are higher than 103 percent of average manufacturer prices. At present Medicare's reimbursement amount for covered outpatient drugs is generally equal to 106 percent of the volume-weighted ASP.
  • Democrats to Unveil Drug Benefit Changes
    Any buyer knows the advantage of buying in bulk. Think about the advantage when you're negotiating on behalf of 43 million elderly and disabled Americans. That's the image painted by Democratic lawmakers who want the federal government to negotiate drug prices on behalf of Medicare recipients. (from the Los Angeles Times)

  • Analysis: House Dems' Part D platform
    The savings from their changes would be used to eliminate the so-called donut hole -- a gap in coverage included in many existing plans during which seniors still pay premiums but are responsible for 100 percent of their drug expenses. Additional language would be added to limit private plans' ability to impose higher co-payments and impose administrative barriers like prior-authorization and step therapy. (from United Press International)

  • Medicare Part D Plans Raised Their Prices for Top Drugs Sold to Seniors
    Over the past five months, virtually all Medicare (Part D) plans raised their prices for the top drugs prescribed to seniors by 3.7%. (from PharmaLive)

We have five, count 'em, new support groups to bring to your attention:

  • Titusville, Florida
    The newly formed Space Coast Multiple Myeloma Support Group will meet the 2nd Thursday of each month, beginning August 2006, from 5:30 pm to 6:30 pm, in Conference Room 6 at Parrish Medical Center, 951 North Washington Ave., Titusville, FL. For more information contact Rosemary Herring, 321-271-4906 or Email: spacecoastmm@cfl.rr.com.

  • Nassau County, New York
    This group is just beginning. If you are interested in attending or helping out, please contact Sheryl Goldberg at 516-379-5221 or by e-mail at SherylIMF@aol.com

  • Fayetteville, North Carolina
    This group is just beginning. Please contact Stephanie Chavis, MFT at The Blood & Cancer Clinic. PO Box 53095, Fayetteville, NC 28305 or call 910-483-8586 ext: 127.

  • Southwest Atlanta, Georgia
    The newly formed Southside Multiple Myeloma Support Group meets on the 4th Saturday each month from 10:00 A.M. to 12:00 P.M. at the Ben Hill Recreation Center, 2405 Fairburn Rd., S.W. Atlanta, GA 30311. For more information contact Doris Morgan at 404-346-1372 or Email at dorismorgana@aol.com, or Montine Wilburn at 404-344-7758, or Ida Creal 404-228-2288 or Email at eicreal@comcast.net.

  • Spokane, Washington
    The new Spokane Multiple Myeloma Support Group is looking for members. The meetings will take place on the 4th Monday of each month at 5:30 p.m. at the Cancer Care Northwest, 601 S. Sherman Street, Spokane, WA. For more information, please contact Daniel Jones at 509-324-2838 or by E-mail at dojones@comcast.net.

The 16th Annual IMF Ribbon of Hope Gala is coming to Beverly Hills, CA on October 21, 2006
The IMF is the lifeline for myeloma education, research, support, and advocacy to over 135,000 patients, family members, caregivers, medical professionals and researchers throughout the world. Our goal is to fund the best research, provide the highest quality education, offer the most thoughtful, comprehensive support, and serve as fervent advocates.
In order to fully achieve this, the IMF relies on the most passionate members of the myeloma community. . . people like you. We invite you to participate in the IMF's 16th Anniversary Gala by becoming a Dinner Committee Member! If you are interested, please contact Candace McDonald at cmcdonald@myeloma.org for more details.
Run for TEAM IMF in the LaSalle Bank Chicago Distance Classic - August 13, 2006
The IMF is registered with the LaSalle Bank Chicago Distance Classic.If you live in the Chicago area, or will be in that area on August 13th, you can support the IMF by running either a half marathon or a 5K.
We hope all you runners in Chicagoland will take advantage of this great summer activity. Besides all the fun you'll have, you will be helping to raise awareness and much needed dollars for myeloma cancer research.



Multiple Strategies for Treating Myeloma: Case Discussions
Register now for this FREE case-based CME dinner activity for physicians coming to an area near you: Thursday, July 6, 2006, in Portland, Oregon and Thursday, August 3, 2006 in Philadelphia, Pennsylvania.
Portland Patient & Family Seminar
July 7-8, 2006

Portland, Oregon
Seminário para Pacientes & Familiares IMF LA
July 31, 2006
São Paulo/SP, Brasil
Philadelphia Patient & Family Seminar
August 4-5, 2006

Philadelphia, Pennsylvania
Czech Patient & Family Seminar
September 2, 2006

The Czech Republic
4ème Séminaire d'Information et de Soutien Pour les Patients et Leur Famille
September 8, 2006
Paris, France
Seminário para Pacientes & Familiares
September 23, 2006
Pamplona, Spain
Seminario per i pazienti e le famiglie
September 29, 2006
Bologna, Italy
Seminário para Pacientes & Familiares IMF LA
September 30, 2006
Caracas, Venezuela


The IMF's comprehensive "How-to-FUNdraise" guide is what you need if you're thinking about fundraising in your community but don't know where to start. The guide contains the A - Z of fundraising ideas--like running in a local marathon and asking for donations per mile for myeloma; having a summer BBQ, where you charge a cover and hold a raffle; asking your local supermarket to donate wine and cheese, then selling tickets and having a cocktail party--as well as tips and guidelines for success. Check out the FUNdraisers below:

The Stratford Runner
Sheldon is running 1000 kilometers across Canada to raise money to support myeloma research.

5th Annual Multiple Musicians Against Multiple Myeloma
July 9, 2006

Sea Cliff, New York

6th Annual Wamp Swim-a-thon
July 22, 2006
West Hartford, CT
Theresa's Run for Myeloma
August 13, 2006
Chicago, Illinois
2nd Annual Walk for Myeloma
October 14, 2006

Miami, Florida
Money for Miracles
The first annual fundraiser from the Rhode Island MM Support Group
October 27, 2006
Cranston, Rhode Island
  • Mail for the Cure Extended
    Many of you requested envelopes to participate in our Mail For The Cure campaign, but were unable to send them out by the end of the year. So we have decided to extend the program for another six months. So far, the campaign has raised over $8,000 to support the IMF's programs, and we know there will be a lot more coming in judging by your requests for information. If you have any questions or would like more envelopes and/or a letter template, please contact Suzanne Battaglia at SBattaglia@myeloma.org or at (800) 452-CURE (2873).


If you use the special IMF links to shop at your favorite internet retailers (e-tailers) like Amazon.com, they will donate a portion of your purchase to the IMF. You pay no more than you would normally for everything from clothing to computers to cruises. Whatever you buy, the programs, publications and research supported by the IMF will benefit. Visit our Shop for the IMF page at http://shop.myeloma.org to see the complete list of popular etailers who will donate a portion of your purchase to the IMF. Giving has never been more painless!

Monet Money
IMFer Jack Verespy is a multiple myeloma survivor and is in the fine art and fine art reproduction business. If you are a collector, their company, Oscar LLC, is selling very limited edition giclée on canvas prints of possibly unknown Monet works. They are in the process of authenticating the original paintings, and when the prints are sold, they will donate a portion of the proceeds from the sale of these prints to the IMF. In addition, they will be offering a 20% discount to anyone identifying themselves as an IMFer. For more information, please visit www.oscarllc.com

Read for Research!
Book clubs all over the US are asking their members to use the special IMF links to Amazon (amazon.myeloma.org) and Barnes and Noble (barnesandnoble.myeloma.org) to purchase their book selections each month. That way, members can get the benefit of the same everyday low prices on these web sites AND every purchase results in a donation that supports the programs of the IMF. If your book club hasn't been buying books using the IMF affiliate program links, what are you waiting for? Make your purchases count. Use the links!

  • Recipes for Research
    Marilyn Alexander, the Philadelphia support group, and the IMF community have come together to create one terrific cookbook and handy kitchen reference. From Autumn Apple Cake to Veal Stimbarada, there is something here for every taste. And if you aren't in the mood to cook tonight, there is an entire section with tips on everything from setting the table to stain remover. At only $15, it will make a great Mother's Day gift.

    Ribbon of Hope Ornament
    Whether you hang one on your holiday tree, your wall, or any other creative place you can think of, the IMF's 4-inch holiday ornament will bring a message of hope to anyone you give it to. We have a limited number available at only $10 each, so why not order one today?

    Imagine Moving Forward is the theme of the IMF's popular myeloma bracelet. At medical conferences and patient & family seminars we see people wearing them in honor, celebration, or in memory of a loved one. They're only $1 each in sets of 10, so order them for everyone you know who has been touched by myeloma. Order them on the web. If you have questions about the bracelets or would like more information, contact Suzanne Battaglia at (800) 452-2873, ext. 227, or SBattaglia@myeloma.org.

    See more exciting ways to help the IMF continue its important work in education, support and research.


    The IMF Joins the Combined Federal Campaign
    The IMF is thrilled to announce that it has been selected to join the Combined Federal Campaign (CFC). Each year, the CFC's workplace campaigns help raise millions of dollars. Pledges made by Federal civilian, postal and military donors during the campaign season (September 1st to December 15th) support eligible non-profit organizations that provide health and human service benefits throughout the world--now including the IMF! So, if you are a Federal employee, please participate in the CFC campaign, September 1st through December 15th, and designate the IMF as your beneficiary by using our organization code 1178.

    National Oncologic PET Registry Now Open
    The National Oncologic PET Registry (NOPR) opened May 8th to ensure access to Medicare reimbursement for certain types of positron emission tomography (PET) scans. You may recall Dr. Durie's statement in February of last year: "[The IMF has] worked hard for reimbursement because we believe PET scanning is an important tool for diagnostic evaluation, staging, and monitoring for myeloma. This is a very encouraging decision by Medicare, and an important step forward for myeloma patients."

    Mensajero del Mieloma
    La IMF quiere enviar información sobre el mieloma en español a todos los pacientes, familiares e interesados. Para suscribirse al correo electrónico (enviaremos diez números al año), por favor, envíe su dirección a mensajero@myeloma.org. Queremos lanzar el número inicial la primera semana de junio. ¡Gracias!


    International Staging System

    A tool to help understand the current status of the disease and the questions you should be asking.

    Anyone who has had radiation, chemotherapy, or any medical procedure knows the humiliation of a hospital gown. The Original Healing Threads™ are garments that are sophisticated, attractive, comforting, and most importantly, dignified.

    HealthTalk's Multiple Myeloma Education Network

    The HealthWell Foundation is a non-profit, charitable organization that helps individuals afford prescription medications they are taking for specific illnesses. The Foundation provides financial assistance to eligible patients to cover certain out-of-pocket health care costs, including:

      • Prescription drug coinsurance, copayments, and deductibles
      • Health insurance premiums
      • Other selected out-of-pocket health care costs

    The HealthWell Foundation has recently opened the Multiple Myeloma fund to help even more patients gain access to the best health care available.  You can contact them at (800) 675-8416 or at www.healthwellfoundation.org.

    Patient Access Network Foundation (PANF) provides copay assistance for myeloma. Thalomid is the MRDD product covered for this condition. The PANF formerly just covered qualified myeloma patients' erythropoietin alpha expenses. Patients or healthcare pr
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