We are international

Myeloma MInute - August 18,2007
Welcome to the IMF's Myeloma Minute
News about myeloma treatment, research, support and the myeloma community
from the International Myeloma Foundation.


Superman's Mother to Perform at IMF's CONCERT FOR A CAUSE
Annette O'Toole, the actress who plays Martha Kent on Smallville, will be participating in a live musical event on Monday, August 27. Alongside her husband Michael McKean and his band Spinal Tap, she will perform in a benefit called “Concert For A Cause.” Christopher Guest, Harry Shearer plus other special guests will also grace the musical benefit in which all proceeds will go to the International Myeloma Foundation (IMF). (from Buddy TV)
Listen to Susie Novis and Michael McKean talking about Concert for a Cause on the radio.


CMS Proposal Would Virtually Eliminate Medicare Clinical Trials Coverage
On July 19, the Centers for Medicare & Medicaid Services (CMS) issued a proposed decision memo that would dramatically alter Medicare coverage for participation in clinical trials. Existing Medicare coverage, established in September 2000, provides automatic coverage for participation in trials that are funded by the federal government or under the review of the U.S. Food and Drug Administration (FDA). The proposed policy would rescind this automatic or deemed coverage and require that investigators seeking Medicare coverage certify to CMS that the research study meets 13 scientific and technical standards. CMS would then “notify beneficiaries, providers, and practitioners of those research studies that have certified compliance.” (from Cancer Policy Today)

Have you registered for the Tampa/St. Petersburg Patient & Family Seminar?
If you have never been to an IMF seminar, and you are sunny Florida, this is your chance to learn what is happening in myeloma research, to ask questions of top myeloma experts, and to meet others who will make you realize that you are not alone in this fight. The seminars are always packed, so don't wait. Register today.

Molecular Mechanisms In Multiple Myeloma Illluminated: Could Lead To More Effective Therapies
New evidence on the molecular mechanisms that underlie aberrant NF-kB activity in multiple myeloma (MM) tumor cells has been found by two separate groups of scientists. The research has identified molecular changes that occur in multiple myeloma cells that open a biological pathway that allows the cancer cells to grow and survive. The discovery of this pathway could lead to new targets for drugs.(from Science Daily)

Read related Potential Therapeutic Targets Identified in Multiple Myeloma from NIH News

Kosan Opens Registration Program for Lead Hsp90 Inhibitor, Tanespimycin, in Multiple Myeloma
Kosan Biosciences has announced that the TIME-2 trial is open and enrolling patients. This marks the opening of Kosan's Tanespimycin in Myeloma Evaluation or "TIME" registration program, which includes two clinical trials: TIME-1 and TIME-2. The TIME-2 clinical trial is being conducted at clinical sites primarily in the US and in Europe and is anticipated to enroll approximately 130 patients. (from CNN Money)

Millennium Initiates Clinical Trial to EVOLVE the Treatment of Patients with Newly Diagnosed Multiple Myeloma
The trial, named EVOLUTION(1), will combine the highly active and novel therapies of VELCADE and lenalidomide / dexamethasone and also explore the incremental benefit of cyclophosphamide, an alkylating agent, which in previous studies has shown synergistic activity with VELCADE. (from CNN Money)

How pioneering spine surgery is changing patients' lives in the UK
Consultant spinal surgeon Andrew Hilton and locum consultant spinal surgeon Abdul Baco said the success rate of Kyphoplasty - which they are now able to provide on the NHS - is outstanding. (from the Dorset Daily Echo)



  • Myeloma fighters launch local support group
    As he prepares to do battle with myeloma, Jerry Walton hopes he'll have friends to help him - and that they can help each other. Walton has launched the Southeastern Virginia Multiple Myeloma Support Group with the help of the International Myeloma Foundation. (from HamptonRoads.com)

  • New Support Group in East Tennessee
    This is a new group. Their first meeting will be held on October 6th, from 11:00 AM to Noon at the Health Resource Center, The Mall at Johnson City, Tennessee. For more information please contact Darlene Jessee, Support Group Leader, by email at Pennywort6@earthlink.net.

  • New Support Group Planned for Irvine, California
    This group is just getting off the ground. It will meet in Orange, CA. Please contact Kelly Cox at the IMF, 800-452-2873, for more information.

Most US Seniors Now Have Drug Coverage, Study Shows
More than 90 percent of Americans age 65 and older now have prescription drug coverage, compared to more than 75 percent who were covered in 2004, according to a University of Michigan analysis. And poor seniors are as likely to have coverage as the rich. (from University of Michigan)

White Blood Cell Booster May Help Cancer Patients Avoid Deadly Complications
Cancer patients who receive a drug that stimulates the growth of infection-fighting white blood cells may be significantly less likely to die from a chemotherapy-related complication characterized by fever and low white blood cell levels, according to a multi-institutional study led by researchers from the University of Rochester School of Medicine and Dentistry and the Duke Comprehensive Cancer Center. (from Duke Med News)

SAVE THE DATE! The IMF’s Annual Gala Celebrating Peter Boyle - Saturday, November 10, 2007
An evening of comedy and music with Peter’s friends and family, featuring Ray Romano, Doris Roberts, Patricia Heaton and Fred Willard at the Wilshire Ebell Theater in Los Angeles, CA.

Four days in Rome for $599?
Read the latest issue of the IMF Travel Advantage newsletter for this and other fabulous trips, including a seven day cruise to Hawaii. Great prices and you are helping the IMF with every vacation.


by Christine Murphy

Funding for Myeloma Research
The House approved the fiscal year (FY) 2008 Labor, Health and Human Services, and Education (LHHS) Appropriations bill on July 19th.  The House allocated $29.65 billion in funding for the National Institutes of Health (NIH), an increase of $750 million, over the FY 2007 level.  The National Cancer Institute (NCI) received $4.87 billion for FY 2008, an increase of $72 million. The Senate allocated $29.90 billion for the NIH, an increase of $1 billion.  NCI received an increase of $110 million for an allocation of $4.91 billion.  This bill has yet to be voted on the Senate floor and IMF along with our cancer community partners are conveying the importance of having a floor vote on the FY 2008 LHHS Appropriations bill when the Senate reconvenes in September.

Proposed Medicare Changes will Impact Myeloma Patients
Late on Wednesday, August 1, the House of Representatives passed the Children’s Health and Medicare Protection (CHAMP) Act by a vote of 225 to 204.  The CHAMP Act would block the projected Medicare physician fee cut in calendar years 2008 and 2009 and make other changes in Medicare.  Unfortunately the Senate version of the CHAMP Act does not include provisions related to Medicare reimbursement.  These issues are expected to be worked out in conference committee action; however, it is unclear if the House Medicare provisions will survive in the final bill as Senate members would prefer to move a separate bill to address the physician payment cut and other Medicare issues.  President Bush has threatened to veto both versions of the House and Senate bills. Additionally, the Centers for Medicare & Medicaid Services (CMS) released a final coverage policy for erythropoiesis stimulating agents (ESAs).  According to the CMS determination, coverage of ESAs will be limited to anemia caused by myelosuppressive anticancer chemotherapy for solid tumors, multiple myeloma, lymphoma, and lymphocytic leukemia.  ESA therapy may be started when the hemoglobin level is below 10, is limited to those whose hemoglobin levels remain below 10 grams per deciliter, and may be continued no longer than 8 weeks after the last chemotherapy sessions.
CMS also recently announced that Medicare monthly premiums will be increasing for the Medicare drug benefit.  The average premium for basic coverage will increase from about $22 this year to $25 next year.

Food and Drug Administration Reauthorization Stalled
Conferees on Food and Drug Administration (FDA) reform legislation will not be named until after the August recess, and staff negotiations on the bill will apparently be discontinued during the recess, as well. The following issues will be considered during conference negotiations:

  1. drug and device user fee reauthorizations;
  2. new measures to permit the agency to respond to drug safety issues;
  3. methods to address conflicts of interest of advisory committee members; and
  4. renewal of pediatric research initiatives.

FDA Commissioner Andrew von Eschenbach has stated that the agency will use reserves in order to avoid sending reduction in force notices to any employees.  Dr. von Eschenbach did not indicate how long the reserves will last and urged the committees to advance user fee reauthorization immediately upon returning from August recess.

IMF endorses the Preexisting Condition Exclusion Patient Protection Act of 2007

IMF endorsed HR 2833, the Preexisting Condition Exclusion Patient Protection Act of 2007.  HR 2833 protects patients from pre-existing condition limitations in group health plans and health insurance coverage in the group and individual markets.

(IMF Scientific Advisors are marked with an *)
  • Extended follow-up of a phase 3 trial in relapsed multiple myeloma: final time-to-event results of the APEX trial
    Paul G. Richardson*, Pieter Sonneveld*, Michael Schuster, David Irwin, Edward Stadtmauer, Thierry Facon, Jean-Luc Harousseau*, Dina Ben-Yehuda, Sagar Lonial, Hartmut Goldschmidt*, Donna Reece, Jesus San Miguel*, Joan Bladé*, Mario Boccadoro, Jamie Cavenagh, Melissa Alsina, S Vincent Rajkumar*, Martha Lacy, Andrzej Jakubowiak, William Dalton, Anthony Boral, Dixie-Lee Esseltine, David Schenkein, and Kenneth C Anderson*
    Blood published 9 August 2007, 10.1182/blood-2006-08-036947
If you would like more information about any clinical trial, you can call the IMF Hotline at 800-452-CURE. The Myeloma Matrix has a current list of all myeloma trials from pre-clinical to recently FDA approved. If you would like to browse trials currently open for enrollment, visit the Clinical Trials page of the IMF web site. Among the links, you will find EmergingMed, with whom the IMF has entered into a partnership to assist you in matching trials to your particular patient profile (i.e., stage of disease, previous treatment, how well you are able to carry out the activities of daily living, etc.) and by doing so, increase your chances of being eligible. You can also learn more about clinical trials by reviewing materials from the National Cancer Institute.

Honolulu Symposium - Honolulu, Hawaii
September 8, 2007
Paris Patient & Family Seminar - Paris, France
September 14, 2007
Greater Kansas City Symposium - Kansas City, Missouri
September 15, 2007
Patient, Family & Healthcare Professionals Seminar - London, Ontario, Canada
September 15, 2007
Naples Patient & Family Seminar - Naples, Italy
September 21, 2007
St. Petersburg Clinical Conference - St. Petersburg, Russia
September 26, 2007
Beijing Clinical Conference - Beijing, China
October 20, 2007
Barcelona Patient & Family Seminar - Barcelona, Spain
October 22, 2007
Heidelberg Patient & Family Seminar - Heidelberg, Germany
October 26-27, 2007
Tampa/St. Petersburg Patient & Family Seminar - St. Petersburg, Florida
November 2-3, 2007
3rd Annual Southwest Symposium - Tempe, Arizona
November 10, 2007
Düsseldorf Regional Community Workshop - Düsseldorf, Germany
November 17, 2007
Berlin Regional Community Workshop - Berlin, Germany
November 19, 2007

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 holiday party, 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 and show your support by donating to their effort online:
Cents for Cells
Beth Morgan is helping the IMF by raising a penny for each stem cell that will be collected for her BMT. She has dedicated Cents for Cells to the memory of Chris Hollyer.
The Stratford Runner
Sheldon is running 1000 kilometers across Canada to raise money to support myeloma research.

Clyde's Ride for the Cure
Clyde is riding his bicycle to support the work of the IMF. "I say, 'until there is a cure I ride for the IMF.'"

Miles for Myeloma
Larry Bartolin is a six-year survivor of multiple myeloma, and is riding his motorcycle to raise funds and public awareness.

Concert for a Cause - Los Angeles, California
August 27, 2007
6th Annual Gary Heuer Jr. Memorial Golf Tournament - Pavilion, New York
September 8, 2007
Pikes Peak Hike - Pike's Peak, Manitou Springs, Colorado
September 21-22, 2007

Salon 926 Myeloma Awareness Month - Wilmington, Delaware
September 2007

Coach Rob’s Benefit Bash & Golf Tournament - Altamonte Springs and Apopka, Florida
September 30 and October 1, 2007
2nd Annual Money for Miracles - West Warwick, Rhode Island
October 27, 2007
Eric’s Run for His Aunt Linda - Arlington, Virginia
October 28, 2007
Evening 4 A Cure - Lancaster, New York
November 2, 2007

As a non-profit organization, the IMF is completely dependent on the support of our members. Tax-deductible donations in honor of a friend or family member make great gifts and are a wonderful way to celebrate a special occasion. You can donate online or by calling the IMF at (800) 452-CURE. And you can order beautiful tribute cards to send out to your friends and family every time you make a donation in their honor to the IMF.We sincerely thank you for your support.
Difford Bracelets Multiple Myeloma Awareness Bracelets
Beautiful custom made jewelry to honor those who have joined the struggle against multiple myeloma.

Caregiver Daily Journal

New! Caregiver Daily Journal
If you are a caregiver, the IMF's own Sylvia Baca has written a journal to help you document the daily care you give your loved one. It's $25, with all profits going to support the programs of the IMF.

Sarah Klein's Bracelets

Sterling Bracelets by Sarah Klein
Sarah Klein's father, Benson, was diagnosed with myeloma in 1998, and has been in remission for 8 years.
Sarah wants to give back to the IMF in her own creative way and has designed two special bracelets made up of semi-precious healing stones. A portion of the proceeds from the sale of these bracelets is being donated to the IMF.

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.

Help for Underinsured Myeloma Patients
Thanks to the advocacy of the IMF, the Chronic Disease Fund has received an infusion of money to help them meet the needs of underinsured patients with multiple myeloma. The fund is designed to help patients with their insurance co-payments and/or their Medicare Part D 'doughnut holes.' Patients must qualify based on financial need. To speak with a representative of the Chronic Disease Fund, please call 877-968-7233, or contact them through their web site at cdfund.org.

C is for Cupid
C is for Cupid is a dating service for people whose lives have been affected by cancer. Founded by survivors, their goal is to provide a comfortable and confidential environment for their members to connect with compatible singles and friends.

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. ¡Gracias!


International Staging System

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

HealthTalk's Multiple Myeloma Education Network

View Back Issues Online...
New to the IMF Myeloma Minute? See what you've been missing by viewing previous issues online!

To unsubscribe from the Myeloma Minute, click here

If a friend forwarded this Minute to you, why not get your own subscription? It's free. Click here to subscribe.

Tell A Friend...
The Myeloma Minute is a great way to stay abreast of the latest developments within the myeloma community. We hope you'll share this information with friends, family members and physicians and encourage them to sign up for their own copy by forwarding this message. New users can register by clicking here.

Sign up for a FREE Subscription to Myeloma Today, the
Official Newsletter of the IMF!

Many thanks to the supporters of The Myeloma Minute:
Celgene Corporation, Kyphon, Millennium Pharmaceuticals, Ortho Biotech, and The Binding Site.
Please call the hotline (800) 452-CURE (800-452-2873) or email TheIMF@myeloma.org if you have any questions.
Copyright 2002-2007. International Myeloma Foundation. All Rights Reserved.

 related articles