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Myeloma Minute - February 13, 2007
02.13.07
WHAT'S NEWS
Independent Survey Rates the International Myeloma Foundation the #1 Resource for Patients
The survey also found that the IMF excels in areas that matter most to patients: being extremely knowledgeable about issues related to myeloma, having up-to-date information, and putting the needs of patients and caregivers as the first priority.

FDA Revamps Process for Safety of Drugs After Approval
Officials outlined plans to better monitor safety problems after drugs are approved and to make internal changes to increase the profile of agency scientists who raise red flags about drugs. (from The Washington Post)


MRI Contrast Agent Linked to Rare Disease
A caution for those myeloma patients with kidney dysfunction. (from Science Daily)


A Better Way to Deliver Cancer Drugs
A paper-thin, biodegradable implant is proving an effective way to attack cancer cells without punishing the body with chemotherapy. (from Technology Review)


A New Method of Estimating United States and State-level Cancer Incidence Counts for the Current Calendar Year
The estimated incidence of myeloma was reported in the ACS's newest edition of Cancer Facts and Figures to have increased by 20% from 2006 to 2007 (from 16,570 to 19,900). Although the incidence of myeloma has been increasing by about .8% annually since 1975, the current 20% increase is greater than would be expected in a single year, and is the result of the employment of a new method for estimating the number of new cancer cases.
Read a related article, Impact of Reporting Delay and Reporting Error on Cancer Incidence Rates and Trends from the Journal of the National Cancer Institute.


Scientists Learn the Origin of Rogue B Cells
Doctors have long wondered why, in some people, the immune system turns against parts of the body it is designed to protect, leading to autoimmune disease. Now, researchers at the National Institutes of Health’s (NIH) National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), in collaboration with the Oklahoma Medical Research Foundation, have provided some new clues into one likely factor: the early development of immune system cells called B cells. (from NIH News)


Borrowing to Stay Healthy: How Credit Card Debt Is Related to Medical Expenses
As health care costs continue to rise faster than incomes, families are turning to credit cards to pay for medical care, according to new research by public policy groups Demos and the Access Project. While uninsured families had the highest levels of credit care debt, even families with health insurance were not shielded from the medical debt problem.


Don't Panic! It's not too late to give your loved ones something they'll want for V-Day...even if you don't know what that 'something' is.
You can still order flowers, but if you are just plain stumped about what to give, use the special IMF link to Amazon.com and order a gift certificate. It may sound impersonal, but when that gift certificate is used by your loved one to buy a six month subscription to the Hot Sauce of the Month Club...well, you don't get much more personal than that.


Lance Armstrong Foundation Announces Community Program/Community-Based Participatory Research Request for Proposals
Through the grant process, the Lance Armstrong Foundation seeks to create a community of individuals and organizations across the United States that both understands the challenges and opportunities that a cancer experience presents and is committed to collaborating to address and resolve the physical, emotional, and practical issues faced by cancer survivors. (from the Philanthropy News Digest)


Age is No Longer a Barrier to Stem Cell Transplant
The conventional wisdom has been that people in their 50s and 60s or older are not good candidates for stem cell transplant (SCT), but research presented at the 2007 BMT Tandem Meetings of the American Society for Blood and Marrow Transplantation (ASBMT) and the Center for International Blood and Marrow Transplant Research (CIBMTR) shows that the technique can be as successful in the elderly as it is in younger people.


ZIOPHARM Presents ZIO-101 Data at Bone Marrow Transplant Meeting
Also from the ASBMT and CIBMTR tandem meetings came Dr. Hussein's report on a phase I study of ZIO-101, a proprietary organic arsenic, that showed that 43 percent of relapsing, progressing multiple myeloma patients experienced stable disease and that the drug was well tolerated in all 14 patients in the study group. There was no clinically significant bone marrow suppression in patients with either prior or no prior transplant. The patients in the study group had failed a median of eight prior treatments. (from PharmaLive)

DuPont to appeal jury's decision
The jury awarded oysterman Glen Strong $14 million in damages after it concluded dioxins from the DuPont titanium-dioxide (a whitening agent in foods, paper, paints, toothpaste, baby diapers, PVC pipes and siding) plant in DeLisle, Mississippi triggered his myeloma. (from The Sun Herald)


ADVOCACY UPDATE
by Christine Murphy, MA

On February 5, the President released his budget for fiscal year (FY) 2008. The President's budget included increases for defense and homeland security while at the same time including cuts in domestic programs such as cancer programs. Below is a breakdown of cancer programs within the federal budget important to the myeloma community.

Centers for Disease Control and Prevention (CDC) Blood Cancer Program

The overall budget request for CDC is $5.8 billion, a decrease of $20 million below the fiscal year (FY) 2007 level in the current Continuing Resolution (CR). The President's budget level funded the cancer control and prevention programs at $306.4 million for FY 2008. While the specific funding allocation for the Geraldine Ferraro Blood Cancer program has not been released, it is possible that this program was level funded at the FY 2007 level of $4.5 million.

Centers for Medicare and Medicaid (CMS) Proposals

The President's FY 2008 budget request for CMS is $600.7 billion, an increase of $29.2 billion over the FY 2007 CR. The President also included a number of proposals to trim spending within the Medicare program such as reducing premium subsidies for high-income beneficiaries in Part B (physician and outpatient care) and Part D (prescription drugs) of the Medicare program. Other proposals include: linking payment to performance, updating physician payments with a zero percent update instead of a -5 percent update, and establishing a 1.5 percent bonus payment for physicians who report quality measures in 2007. The estimated savings from these programs are $5.3 billion in FY 2008 and $75.9 billion over five years.

National Institutes of Health (NIH) and the National Cancer Institute (NCI)

The President's FY 2008 budget recommends $28.9 billion for NIH, a slight increase of $232 million above the FY 2007 CR. Included within the NIH request is $4.8 billion for NCI which is $11.4 million below the FY 2007 CR level. The NCI is one of 5 institutes and centers that received a funding cut at the NIH in the President's FY 2008 budget.

While the new majority in Congress will largely ignore the President's budget, it is important that the myeloma community communicate with their Members of Congress on the importance of increased funding for the cancer programs that impact myeloma patients. The IMF will continue to keep you informed on the status of these important programs as the FY 2008 appropriations process moves forward.


WHAT'S NEW IN RESEARCH
ARTICLES
(IMF Scientific Advisors are marked with an *)
CLINICAL TRIALS
  • VELCADE® trials

  • THALOMID® trials

  • REVLIMID® trials

  • DOXIL® trials

  • Phase I/II
    Drug name(s): romidepsin (depsipeptide, K228)
    Sponsor: Gloucester Pharmaceuticals
    Indication: histone deacetylase inhibitor romidepsin in combination with proteasome inhibitor bortezomib (Velcade) for the treatment of relapsed/refractory multiple myeloma
    Location of open trial: Peter MacCallum Cancer Centre, Melbourne, Australia; principal investigator Dr. Miles Prince

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
Los Angeles Patient & Family Seminar
February 23-24, 2007
Los Angeles, California
Houston Patient & Family Seminar
March 23-24, 2007
Houston, Texas
Teaneck Patient & Family Seminar
July 27-28, 2007
Teaneck, New Jersey

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 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 about to undergo a stem cell transplant and she is asking family and friends to help her help the IMF by raising a penny for each stem cell that will be collected. 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.

Sheridan-Shedenhelm Wedding
February 3, 2007
Tampa, Florida

F.O.R. (Friends of Richie) Benefit
March 31, 2007

Molnar Marathon
April 28, 2007
Louisville, Kentucky

8th Annual JC Golf Tournament
May 19, 2007
Saint Cloud, Minnesota


HELPING THE IMF
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!
News from Hogwarts! Harry Potter Helps the IMF!
The latest and last Harry Potter is available for pre-order.
Harry Potter and the Deathly Hallows is coming out July 21. Who will survive the final chapter of J.K. Rowling's wildly popular series? You will find out when you pre-order the book at a special, discounted price and help the IMF at the same time. Just click on the special link below and, like magic, a portion of your order will go to the IMF.
Turn Your Vacations Into Donations!
Make sure you check out the IMF Travel Advantage newsletter. As part of our travel program, every two weeks we will bring to you some of the best travel deals on the internet through a special newsletter supplement created especially for IMF supporters and friends.
The Gift of Hope
IMFers are requesting Mail For The Cure envelopes and letter templates to include in their Holiday cards this year. What better way to let your friends and family know how they can give the gift of hope at this time of year? Please contact Suzanne Battaglia at SBattaglia@myeloma.org or (800) 452-CURE (2873) and let her know how many envelopes you need. And don't forget to order the IMF's Holiday Ornament ($10 each).
Calling All Kids!
If you are ready to fight back against myeloma, then you need Kids Fight Back, a fundraising program especially for kids.
Tribute Cards
Order these beautiful tribute cards to send out to your friends and family every time you make a donation in their honor to the IMF.
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 holiday gift.
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.

ITEMS OF INTEREST
Apply NOW to NCI's All-Consumer Advisory Committee!
The National Cancer Institute's Office of Liaison Activities (OLA) invites all interested and eligible advocates, consumers and survivors to apply for 4 vacancies on the NCI Director's Consumer Liaison Group (DCLG), with terms beginning July, 2007. The DCLG is a Federal Advisory Committee of 16 cancer advocates and consumer members who are appointed by the Director of NCI. DCLG members provide broad-based recommendations to the NCI Director, and serve as a forum to receive feedback and input from all areas of the cancer advocacy community. The NCI Director has identified eliminating cancer disparities and research issues in cancer care delivery as two focus areas for the DCLG in 2007. Applications must be postmarked by March 30, 2007.

Second Chance at Life Symposium
BMT InfoNet's Celebrating a Second Chance at Life Symposium for bone marrow, stem cell and cord blood transplant survivors is generating great enthusiasm. This one day event on April 14, 2007 in Oak Brook IL, will feature presentations by leading experts on the many challenges faced by transplant survivors.

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.

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!


BANK ON A CURE®

International Staging System

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

HealthTalk's Multiple Myeloma Education Network


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