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Myeloma Minute
February 9, 2012
02.09.12

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

WHAT'S NEWS

FDA Approves Subcutaneous Administration of VELCADE® In All Approved Indications
physicians treating patients with poor vein access or who have peripheral neuropathy and those at high risk of developing it now have another weapon in their armamentarium against myeloma.

New IMWG Guidelines on Management of treatment-emergent peripheral neuropathy in multiple myeloma
These guidelines represent a capsule summary of the new IMWG paper Management of treatment-emergent peripheral neuropathy in multiple myeloma published in Leukemia.


New International Working Group Paper on Maintenance Therapy
Maintaining results of successful induction therapy is an important goal in multiple myeloma. In this paper published in Blood, members of the International Myeloma Working Group review the relevant data.


IMPORTANT NEW SURVEY ON THE WEB
The purpose of this short survey is to determine the underlying reasons for the increased risk of myeloma in certain races and in family members, as well as to understand whether the subtypes of myeloma occur more commonly in one group over the other. This study will provide important information that will help all patients with myeloma. You do not need to reveal any identifying information to participate in this study.

Member FUNdraisers Support Research Grants
In December of 2011, seven Brian D. Novis Research Grants were presented at the grant reception at ASH, six of which were funded by our member fundraising program.  Junior Grants are funded at $50,000 and Senior Grants are funded at $80,000.  Some of the funds for these grants were raised from one event, and others from cumulative smaller annual events. Donors can see first-hand the results of all their hard work in putting together their fundraisers, whether it's a garage sale or a golf tournament – no event is too small. If you are interested in starting a program to raise money for research, please contact Suzanne Battaglia at sbattaglia@myeloma.org or by phone at (800) 452-2873.  She can help you with ideas and offer support and materials to help make your event or campaign a success.


Using Your Own Body to Attack Cancer
Immunotherapy rResearch for multiple myeloma has been difficult because the cancer cells can be very different from each other. In a recent presentation to the 53rd annual meeting of the American Society of Hematology, scientists at the Dana Farber Cancer Institute said they now believe they have solved this problem, and they're ready to find out in human trials. (from dailyRx)

Less May Be More in Treating High-Risk Myeloma
"While the limitations of this retrospective study limit drawing definitive conclusions, it appears that poor cytogenetics and biology trump treatment intensification," Dr. Rachid Baz and his colleagues stated in a poster presentation at the annual meeting of the American Society of Hematology. (from The Oncology Report)


Last Chance to Participate in Myeloma 200. Win a Dream Vacation to Costa Rica!
Help the IMF reach its goal of $200,000 for our Research, Education, Support and Advocacy Programs by participating in Myeloma 200 - Closer to a Cure! and be entered into a drawing for a trip for two for 7 days and 6 nights to the beautiful Four Seasons Costa Rica, including airfare and a $400 gift certificate toward spa treatments.


THE IMF IS BLOGGING AND TWEETING!

ADVOCACY UPDATES

  • Governor Christie of new jersey signed the oral chemo access bill.
    This is a victory for myeloma patients and all cancer patients in New Jersey! We are up to 15 states now. Go IMF Advocates!

  • Bill introduced to allow cancer patients access to easier, more affordable chemo
    IMF Advocates work to make Delaware the 16th State to pass the oral drug parity bill. The IMF's Meghan Buzby pointed out that 35 percent of the oncology drugs in development are oral and some existing oral cancer drugs do not have IV counterparts. (from WGMD NewsRadio and Delaware Online)

  • We'd like to thank Jerry Walton for giving testimony on the Virginia bill (HB 1273) to the Health, Welfare, and Institution Committee, where It passed 16 to 1 and will now be reviewed by the Appropriations Committee. If you're a patient in VA, please help us ensure equal access to treatment to patients in your state by writing to your legislator using our Action Center link:  http://www.capwiz.com/myeloma/issues/alert/?alertid=60856991

  • Essential Health Benefits Guidance Document Released by HHS
    The Affordable Care Act, commonly referred to as the health reform law, created  health insurance exchanges to help uninsured people obtain health insurance. The law requires that the insurance plans offered through the exchanges provide coverage for essential health benefits. There are 10 broad categories of services considered to be essential health benefits, including hospitalizations, maternity care, and prescription drugs. Additionally, the law says that the benefits should be similar to those offered in the typical employer plan. On December 16th, the Department of Health and Human Services released initial guidance regarding the essential health benefits that plans offered in the Insurance Exchanges will have to cover.  The Guidance is the first indication of how the government will implement the essential health benefits requirements.

    Broadly, the guidance allows states to choose an insurance plan whose covered services will define the essential health benefits for other plans offered in the state.  States can choose between one of the three largest small group, state employee, federal employee or HMO plans offered in the state.  The state must pick a plan that includes all 10 categories.  So, if a set of services isn't included—such as mental health services—they must be added. This plan would then serve as the benchmark for all other plans included in the exchanges, meaning that they would have to meet or exceed the benefits provided in the benchmark plan.

    The government is accepting comments on this guidance document through the end of the month. Already, many stakeholders have expressed concern that the federal government has given a lot of discretion to the states because they had hoped that there would be a federal standard to ensure adequate insurance coverage.

WHAT'S NEW WITH THE SUPPORT GROUPS

Through a global community of IMF-assisted support groups, the IMF seeks to ensure that patients, their caregivers, family members, and friends have local access to support, information, and a strong sense of collective identity. 

We will be highlighting information on support groups in future issues of the Myeloma Minute.  If you are a support group leader or member and have something you would like to share that's happening in your myeloma group, please contact Joanie, Kelly, Andy or Robin with the details.

If you are not in a support group, and would like to be, the IMF currently supports 120 myeloma specific support groups in the US, plus many groups abroad. Click here to find a support group near you.

If there is not a group in your area, please contact the IMF and we’ll be happy to help you start one!


WHAT'S NEW IN RESEARCH
Members of Scientific Advisory Board*, Members of International Myeloma Working Group†

CLINICAL TRIALS

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 (NCI). To see the summaries of newsworthy clinical trial results, visit the National Cancer Institute Multiple Myeloma Trial Results.


UPCOMING SEMINARS, WORKSHOPS, AND CLINICAL CONFERENCES
Note: Some of the international seminar cities have been set, but the venues and agendas are still in the works. Check back often if you are interested in attending, as we post the sites and speakers as they are confirmed.


UPCOMING MEMBER EVENTS
  • 5th Annual Carolyn Czerkies Memorial Golf Outing
    Sat, Jun 09, 2012
    Yorkville, Illinois

  • A Walk to a Cure
    Jeff Kearney is planning to walk from Orlando, Florida to New York City in an effort to raise money to help find a cure for multiple myeloma.

  • Steve's Run for Myeloma
    Steve Schecter is planning on running three endurance runs over the next year in honor of his aunt. He is running to raise money to support the IMF's research efforts.

  • Bicycle Mojave...and Beyond!!!
    My name is Andy Sninsky, and I am a 3-year survivor of Stage III Multiple Myeloma. I recently biked the Mojave to support the IMF. Join me and my friend, Tom Moinet, as we bike across the Appalachians to Washington, DC and beyond!
ONGOING MEMBER EVENTS
  • Signs from Heaven
    Signs from Heaven is a loving testament of hope, understanding, and peace—and can help you on your journey of healing. Proceeds from the sale of this book support the programs of the IMF.
  • Gems for Myeloma
    Originally created for IMF staffers by Marya Kazakova, IMF's Publications Editor, this beautiful custom jewelry is now available for sale to raise funds for IMF programs and services.
  • Kindness for a Cure: The Denise Gaeta Bencel Fund
    Let's make the world a bit nicer and help find a cure - a win-win! Spend one month - 30 days - spreading kindness to others. Pay yourself one dollar per day - less than the cost of a cup of coffee. At the end of the thirty days donate the money to the International Myeloma Foundation. Tell us about your personal experiences during this month. Click here to visit the event website for more information and to make your donation.
  • Myeloma Buddies
    These adorable hand-knit dolls are so cute, you will want one for everyone you know.
  • VISIONS Notecards by Jeff; A Cure for Karl
    Jeff Hanson is a 15 year-old, visually impaired artist from Overland Park, Kansas. IMFer Karl Vollstedt and Jeff are great friends who use their time and talents to benefit others. Jeff created these note cards as a gift to Karl and to myeloma research.

HELP THE IMF
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.
Myeloma 200 - Closer to a Cure
Help the IMF reach a goal of $200,000 for our Research, Education, Support and Advocacy Programs in 2011 and win a dream vacation to Costa Rica.
Host an Afternoon Tea

How to Host an Afternoon Tea
An elegant and easy way to build awareness about myeloma and raise money in your community, and the IMF will help.

Shop for the IMF Shop for the IMF
Shop with the leading merchants on the Internet, receive the same price as anyone else visiting their sites, and support the IMF at the same time!
See more exciting ways to help the IMF continue its important work in education, support and research.

ITEMS OF INTEREST

Myeloma Manager
Have you downloaded your Myeloma Manager Personal Care Assistant

Another exciting first from the IMF!
Free software to help manage and understand your lab results, and more!


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.

The Voice of the Dolphins
This book from Hardy Jones, ocean conservationist, filmmaker and myeloma patient, reveals intimate details of dolphins in the wild and the emerging threats to their very existence and ours. He presents persuasive evidence that a lethal threat to dolphins—and, it turns out, to humans—is the rising level of contaminants in the ocean food chain.

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Many thanks to the supporters of The Myeloma Minute:
Celgene Corporation, Genzyme Corporation, Millennium: The Takeda Oncology Company, 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 2012. International Myeloma Foundation. All Rights Reserved.

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