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Myeloma Minute - July 26, 2006
Part I
07.26.06

WHAT'S NEWS

The IMF at ASCO 2006
Some very exciting research was presented at this last ASCO meeting and the IMF was there. Listen to the presenters as they discuss the future of myeloma reesearch and treatment. View the webcasts from the 42nd Annual Meeting of the American Society of Clinical Oncology in Atlanta, Georgia.

Help for Underinsured Myeloma Patients
The IMF has just been informed that help is now available through the Chronic Disease Fund to 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.

Calling All Kids!
If you are ready to fight back against myeloma, then you need Kids Fight Back, a fundraising program especially for kids.

'International uniform response criteria for multiple myeloma' published in the journal Leukemia
The article is the result of the work of the International Myeloma Working Group.

Turn Your Vacations Into Donations
Book your personal and business travel on our new travel website, myelomatravel.com! Every time you do, the IMF will receive a portion of the travel commissions. You get the same low rates offered by other travel websites while helping to raise funds for the IMF's education and research programs. It's that simple!

JAMA: Misled again by authors
Just days after announcing a crackdown on researchers who do not disclose drug company ties, the editor of a prestigious medical journal says she was misled again. JAMA has long required researchers whose articles it will publish to sign statements disclosing all potential financial conflicts. An editorial last week said it was getting tougher as a result of the recent breaches. JAMA's new policy, effective in January, requires disclosures even before articles are accepted for publication. (from the Chicago Tribune)

MEDICARE NEWS:

GAO Faults Medicare Help Lines
Telephone hotlines set up to help consumers cope with the new Medicare drug benefit aren't providing all that much help, according to a report by the General Accountability Office. The GAO report says the people answering consumers' questions are mostly providing inaccurate or incomplete information. (from consumeraffairs.com)

Center For Medicare Advocacy (CMA) Releases Medicare Part D Progress Report
According to the report, the Centers for Medicare & Medicaid Services (CMS), the agency that administers Medicare, continues to tout Part D as a resounding success, while attributing persistent and systemic issues to small glitches in the system. While CMS claims to have fixed the major problems, and purports to be solving individual beneficiary problems in a timely and satisfactory manner, their experience shows otherwise. Their report highlights some of the most glaring issues and suggests solutions. (from Medical News Today)

Rock On!
On July 9th, the 5th Annual Multiple Musicians Against Multiple Myeloma concert was held at Tupelo Honey, in the beautiful seaside community of Sea Cliff, NY.

Senate bill would allow FDA to fine for post-approval lapses
Failure to complete post-approval studies could draw fines for drugmakers under legislation introduced in the U.S. Senate. In addition, the bill would allow fines for violating safety monitoring plans for recently approved medicines, all part of an effort to give the FDA greater authority over drug safety. (from The Washington Post /Reuters)

Ontario covers four expensive cancer drugs
Four cancer drugs costing patients tens of thousands of dollars will now be paid for by the province. It's a victory for Hamilton multiple myeloma patients who have been fighting for more than two years to have OHIP cover Velcade.

No 'Phase Zero' for Biotech?
A recent RPM report by Windhover suggests that FDA may be restricting 'Phase Zero' clinical trials, or early small-dose drug tests, to small molecules. This is believed to have been driven by the TeGenero clinical trial disaster last March in the U.K.
Concert for Cures Nets Bank On A Cure® $25,000
No, he is not under arrest. Dr. Brian Van Ness is, instead, accepting a check for $25,000 for Bank On A Cure® from the Goldman Foundation at their Concert for Cures benefit.

No autographs, please!
IMF Chair, Dr. Brian Durie, was featured on a video piece about Revlimid® with marathoner and Team Continuum founder Paul Nicholls that has been seen by over 100 million people!

On the Radio
Recently HealthAccess (940 AM in Montreal) with Charles Pitts and Nursing & Homecare specialist Donna Byrne interviewed members of Myeloma Canada, Carolyn Henry and Aldo DelCol, on the incidence, prevalence and treatment of
myeloma, as well as news concerning the reimbursement of Velcade on the Ontario drug formulary.

Récemment HealthAccess (940 AM a Montreal) avec Charles Pitts et Donna Byrne a interviewé les membres du Myélome Canada, Carolyn Henry et Aldo DelCol, pour discuter l'incidence, la prédominance et le traitement du myélome, aussi bien que les nouvelles d'Ontario concernant le remboursement du Velcade par le gouvernement.

The 16th Annual IMF Ribbon of Hope Gala is honoring the Bank On A Cure® team.
Save The Date! The International Myeloma Foundation 16th Annual Gala is the place to be on the evening of Saturday, October 21st. . . and we couldn’t be more thrilled about our Guests of Honor: the world-class team of passionate scientists who lead the way for Bank On A Cure®. To learn more about our dedicated Bank On A Cure team, and to purchase your Gala tickets, click here:

Multiple Strategies for Treating Myeloma: Case Discussions
Don't Wait.
Register now for this FREE case-based CME dinner activity for physicians with Dr. Brian G.M. Durie and Dr. Morton Coleman of Weill Medical College, in New York.
Thursday, August 3, 2006
Philadelphia, Pennsylvania.


ADVOCACY UPDATE

  • On July 18, 2006, the Senate increased funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI) as well as level funded the Geraldine Ferraro Blood Cancer Education Program at the Centers for Disease Control and Prevention (CDC). Specifically, the NIH received $28.5 billion, an increase of $241.5 million over the previous year, while the NCI received an increase of $9 million for a total of $4.8 billion. Unfortunately the Geraldine Ferraro Blood Cancer Education Program at CDC only received $4.5 million in the Senate bill.

    While this small increase in the Senate is good news, unfortunately these funding levels are the highest possible levels that the myeloma community can expect to be allocated for these programs in fiscal year (FY) 2007. Earlier this year the House cut funding for the NIH, NCI and the Geraldine Ferraro Blood Cancer Education Program at the CDC. During the next step of the Congressional appropriations process, the funding for the NIH and NCI could be lowered as these allocations are finalized.

    The International Myeloma Foundation, in addition to our friends in the cancer community, recommends the following allocations in FY 2007:

    • $29.7 billion for the NIH;

    • $5.034 billion for the NCI; and,

    • $5 million for the Geraldine Ferraro Blood Cancer Education Program at the CDC.

    Because of the NIH doubling effort a few years ago, the nation is on the cusp of making fundamental progress in many areas including cancer. The funding levels for the NIH, NCI, and CDC in the House and Senate are a direct retreat from medical research and unfortunately at a time when the nation needs to continue marching forward in our progress against cancer.

    While this funding has not yet been finalized, Congress needs to hear from the myeloma community that the funding levels proposed in the House and Senate are detrimental to improving the quality of life of myeloma patients as well as slowing progress on the important work being done on the prevention and a cure of this disease.

    To voice your concerns over the funding levels proposed for myeloma research and education programs, please visit www.house.gov or www.senate.gov to find out how to contact your House and Senate Members.


WHAT'S NEW IN RESEARCH

  • CLINICAL TRIALS

  • NEW TO THE MATRIX
    • Preclinical
      Drug names: EGCG (epigallocatechin-3-gallate)
      Sponsor: Dana-Farber, VA Boston
      Indication: polyphenol extracted from green tea induces growth arrest and apoptosis in myeloma cells.

    • Phase: II
      Drug names: HGS-ETR1 (TRM-1, mapatumumab)
      Sponsor: Human Genome Sciences
      Indication: Monoclonal antibody to TRAIL-R1 used in combination with bortezomib in patients with relapsed or refractory myeloma

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.


UPCOMING SEMINARS AND CLINICAL CONFERENCES

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
Seminario 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

UPCOMING EVENTS

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.

Theresa's Run for Myeloma
August 13, 2006
Chicago, Illinois
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.
2nd Annual Walk for Myeloma
October 15, 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. To date, the campaign has raised over $11,000 to support the IMF's programs. 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).

Click here to view Part II of the Myeloma Minute - July 26, 2006


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