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IMF: NEWLY PUBLISHED STUDY SAYS PATIENTS IDENTIFIED WITH HIGH-RISK PRESYMPTOMATIC MYELOMA MAY BENEFIT FROM EARLY INTERVENTION

--The study from the PETHEMA Group in Spain Says an Oral Treatment Regimen “Significantly Delayed Time to Progression” with an Overall Survival Benefit in High-Risk Smoldering Myeloma--

 

--Study Published in the Prestigious New England Journal of Medicine--

08.01.13

North Hollywood, CA,  August 1, 2013 -- The International Myeloma Foundation (IMF)  – improving the quality of life of myeloma patients while working toward prevention and a cure – today said a study just published in a major medical journal could change the way certain patients with early myeloma are treated. The standard of care for patients with smoldering myeloma – myeloma diagnosed so early there are no symptoms – is to wait and watch until symptoms occur. But a study just published in the New England Journal of Medicine concluded that early intervention and maintenance with a REVLIMID®-based regimen in patients with high-risk smoldering multiple myeloma “significantly delayed the time to progression to symptomatic disease, and resulted in an overall survival benefit.”

“The challenge now is to identify which patients stand to benefit from these findings,” said Brian G.M. Durie, M.D., Chairman and Co-founder of the IMF. “The study used specific bone marrow characteristics, protein secretions and other diagnostic criteria to identify high-risk patients. The International Myeloma Working Group, our global consortium of myeloma experts that includes some of the authors of this study, is now looking to further refine the criteria to determine which patients fit into this high-risk category that could be as much as 40 percent of asymptomatic patients.”

Intervention at this early stage of myeloma is possible only with newer, more tolerable treatments. The study says previous attempts at treating smoldering myeloma with older therapies such as alkylating agents either were not effective or led to concerns about long-term toxicity.

“These findings might change when myeloma patients are treated, and also improve access to effective drugs,” said Susie Novis, President and Co-founder of the IMF. “In Europe, where this study was conducted, this oral regimen is not approved as a first-line regimen for newly diagnosed patients. As a consequence, when patients in the study progressed to symptomatic myeloma and their role in the study ended, they could not be given this regimen. Our advocacy team is working to improve global access to effective therapies.”

This open-label Phase 3 study involved 119 patients with high-risk smoldering myeloma – patients at risk of developing active myeloma. The group was split into an arm receiving treatment, with the other group just being observed, which is the standard of care. An evaluation three years into the study shows:

  • 77% of patients who were treated remained without symptoms
  • only 30% of patients in the watch-and-wait group were progression free

The study concludes, “this delay (in disease progression) translated into a significant overall survival benefit.”

  • At 3 years, 94% of patients in the treatment arm were alive
  • At 3 years, 80% in the watch-and-wait group were still alive

Dr. Durie added, “These findings tie directly into our Black Swan Research Initiative™. We believe these patients with early myeloma hold the key to understanding the progression of myeloma and, through our Black Swan program, will help us optimize treatment for patients at all stages of the disease.”

Myeloma, also called multiple myeloma, is a cancer of cells in the bone marrow that affects production of red cells, white cells and stem cells and can damage bone. It is growing in numbers and affecting increasingly younger people.

 

ABOUT THE INTERNATIONAL MYELOMA FOUNDATION

Celebrating its 22nd anniversary, the International Myeloma Foundation reaches more than 215,000 members in 113 countries worldwide. A 501 (c) 3 non-profit organization dedicated to improving the quality of life of myeloma patients and their families, the IMF focuses on four key areas: research, education, support, and advocacy. To date, the IMF has conducted more than 250 educational seminars worldwide, maintains a world-renowned hotline, and established the International Myeloma Working Group (IMWG), a collaborative research initiative focused on improving myeloma treatment options for patients. The IMF can be reached at (800) 452-CURE (2873). The global website is www.myeloma.org.

 

CONTACT: Deanne Eagle

                    +1-917-837-5866

                    Deanne.eagle@initiatePR.com


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If you're still looking for the perfect gift for Mother's Day, you still have a few days to shop online through the IMF Mall. The IMF Mall includes a number of stores, from Amazon and Avon to 1-800-Flowers and iTunes, that allow you to contribute to the IMF while shopping. By visiting these shops through the links on the IMF Mall page, a percentage of your purchase is donated to the IMF—all at no extra cost to you.

Living Well with Myeloma: Stopping to Breathe While Moving Forward
The IMF's popular "Living Well with Myeloma" teleconference series returns on May 8th, with "Stopping to Breathe While Moving Forward." IMF Nurse Leadership Board Member Beth Faiman, PhDc, MSN, APRN-BC, AOCN, Certified Nurse Practitioner at the Cleveland Clinic, will lead the discussion and Q&A. The discussion will focus on the benefits of rest, relaxation, exercise, and nutrition for long-term management of multiple myeloma. Click HERE to register for the free teleconference, which will be held on Thursday, May 8th at 7 pm ET/ 4 pm PT.

Take Action to Aid Navy Vets Exposed to Agent Orange
The IMF strongly supports and has officially endorsed H.R. 543, the Blue Water Navy Vietnam Veterans Act of 2013, and H.R. 1494, the Blue Water Navy Ship Accountability Act. These important bills would ensure that Navy veterans who served during the Vietnam War and were exposed to Agent Orange, a carcinogen that can lead to higher incidence of myeloma, receive healthcare coverage.

Food for Thought, But Few Conclusions
In the article "An Apple a Day, and Other Myths," the New York Times looks at the latest research on diet and cancer. Many studies over the years have suggested certain foods have cancer-fighting or cancer-causing properties, only to be disproved by the next study. Dr. Walter C. Willett, a Harvard epidemiologist who has spent many years studying cancer and nutrition, told the New York Times, "Diet and cancer has turned out to be more complex and challenging than any of us expected." While scientific evidence linking particular foods to cancer may be scarce, researchers agree that controlling obesity is important when it comes to cancer and overall health

The International Myeloma Foundation (IMF) Applauds Gov. Beshear for Signing HB 126(The Cancer Treatment Modernization Act)Into Law

The International Myeloma Foundation (IMF) applauds Kentucky Gov. Steve Beshear for signing HB 126 (The Cancer Treatment Modernization Act) into law. The bill requires health plans regulated by the state that provide coverage for IV and oral anticancer treatments- to not exceed $100 copayment or coinsurance for a 30-day supply of orally administered anticancer treatment. 


IMF at Chinese Myeloma Working Group Annual Meeting
The IMF's Chinese Myeloma Working Group (CMWG) held its annual meeting from April 9-13th in Hangzhou, China. The IMF's Asia Pacific team members, President Susie Novis, and Chairman Dr. Brian Durie traveled to China to participate in the meetings and activities. A highlight was a patient seminar held at Zhejiang University 1st Affiliated Hospital in Hangzhou, which was attended by approximately 200 patients and family members. During the seminar, Dr. Durie answered patient questions (with the help of a translator) for over an hour. Click HERE to read more about the meetings and patient seminar, which Dr. Durie calls "an amazing, heartwarming, and heart-wrenching program" in his blog post.

IMF's Nurse Leadership Board to Host Satellite Symposium at International Nursing Meeting
The IMF's Nurse Leadership Board (NLB) will host a satellite symposium during the Oncology Nursing Society's (ONS) 39th Annual Congress in Anaheim, California on May 1st. Leading myeloma nurses will discuss the best practices, cutting-edge research, and their own personal experiences with myeloma patients in an exciting and informative presentation. Presenters will discuss therapy combinations, newly approved myeloma drugs, specific cases (such as smoldering versus relapsed/refractory myeloma), and nursing management of patients. This event is one example of the NLB's exceptional work to bring expert myeloma advice to nurses in all communities. Click HERE for the event's agenda and/or to register.

Minimal Residual Disease (MRD) Marches to Front Line of Myeloma Research
The IMF's signature Black Swan Research Initiative® and IMF Chairman Dr. Brian Durie were featured this week in TargetedOnc.com, an online publication aimed at oncologists that focuses on the next stage of cancer development and cutting-edge therapies. "Minimal Residual Disease (MRD) Marches to Front Line of Myeloma Research" takes a comprehensive look at the increasingly important role MRD testing will play in future myeloma treatment and forging the pathway to a cure.

The International Myeloma Foundation Applauds Wisconsin Gov. Scott Walker for Signing SB 300 (The Cancer Treatment Fairness Act) into Law

Today in Milwaukee cancer patient advocates, including myeloma Support Group members Linda Chowa and Mary Sandberg, at right, looked on as Wisconsin Governor Scott Walker signed the Cancer Treatment Fairness Act (SB 300) into law, making Wisconsin the 30th state to enact anticancer drug parity legislation. "This bill shows that our voices do indeed make a difference, because SB 300 was on its deathbed just three weeks ago, and today it is law," said Sue Enright, Midwest Director of Support Groups for the International Myeloma Foundation. "Thank you to every patient, family member, friend, healthcare professional and advocate who relentlessly stood with us throughout this long journey, and to our Wisconsin legislators who voted in favor of the bill." 


Black Swan, Salamanca, and the FDA: A Highly Sensitive New Myeloma Test Debuts
A significant event in the evolution of the IMF's Black Swan Research Initiative® occurred this past weekend in Salamanca, Spain. On March 21-22, the IMF-EuroFlow Workshop focused on a breakthrough in the standardized detection of minimal residual disease (MRD) in myeloma using a new automated and highly sensitive flow cytometry technique. "More than 70 participants from 13 countries gathered to learn the exciting details," writes Dr. Brian Durie, IMF Chairman and Co-Founder, in this week's blog.

Congressman Brian Higgins Recognizes March as National Multiple Myeloma Awareness Month on House Floor

Congressman Brian Higgins (NY-26), a member of the House Cancer Caucus, spoke on the House Floor to recognize National Multiple Myeloma Awareness Month and to advocate for increased funding for medical research and passage of H.R. 1801, the Cancer Drug Coverage Parity Act


Jamaica Support Group spreading Myeloma Awareness on the radio
Monica Taylor, Jamaica MM Support Group leader, spreads Myeloma Awareness in an interview by Sharon Duffus-Grant of TBC Radio, Kingston, Jamaica. The interview was aired on Friday March 21.

The International Myeloma Foundation Secures Congressional Resolution Recognizing March 2014 as “National Multiple Myeloma Awareness Month”

The New Normal: Life After the Diagnosis
Palm Coast Florida couple Arnie and Maxine Levine shares how they have adapted their lifestyle to deal with living with Multiple Myeloma in an uplifting news article published in the Palm Coast Observer.

Clinical Trial for Newly Diagnosed Myeloma Patients
A clinical trial is enrolling newly diagnosed myeloma patients at over 100 medical centers in North America and Europe. This is a Phase 3 clinical trial in which the investigational oral drug MLN9708 is being studied in multiple myeloma to determine whether MLN9708 – taken in combination with lenalidomide and dexamethasone – may potentially slow the disease growth. Patients will have a 50 percent chance to receive either MLN9708 in combination with lenalidomide plus dexamethasone or a placebo in combination with lenalidomide plus dexamethasone. To learn more about this study and how to participate

Missouri Passes Oral Anticancer Law
On March 19th, Governor Jay Nixon of Missouri signed SB 668, the Cancer Treatment Fairness Act, into law, making Missouri the 29th state to pass oral anticancer treatment legislation. This law puts in place a cap of $75 per prescription per month for oral anticancer medications under private insurance plans. Thanks to the great work of our Missouri ACTION team, who delivered over 375 postcards to Governor Nixon requesting his signature on the bill, many more cancer patients in Missouri will have affordable access to all anticancer treatments. Catch up on what is happening in seven other states with As the Bill Turns: Episode 11.

Florida Support Group Promotes Myeloma Awareness Month on the Radio
Florida Panhandle Multiple Myeloma Support Group members are using their voices during Myeloma Awareness Month. Support group members Sarah Davis, Mike Davis, and Sheila Wilson were interviewed on the radio in Panama City, Florida by Powell Broadcasting's Tiffany "Flip Flop" Dunning about myeloma, treatment options, recent advances, and advocacy. The interview aired on Sunday, March 16th on four Florida radio stations, and the archive can be heard

Watch the replay of Living Well with Myeloma Teleconference Series "Chemo Brain - Is It Real?"
Watch the replay of the Living Well with Myeloma: Chemo Brain - Is it Real? Teleconference.

Breakthrough in MRD Detection Is Important Advance for Black Swan Research Initiative®

-Automated, Highly Sensitive Test to Debut March 21-22 at International Workshop in Salamanca, Spain

-Could Lead to More Effective Treatment and a Shorter Path to New Drug Approvals


The International Myeloma Foundation (IMF) Applauds Near Unanimous Vote to Pass SB 300 (Cancer Treatment Fairness Act) in Wisconsin State Senate!

The International Myeloma Foundation (IMF) – improving the quality of life of myeloma patients while working toward prevention and a cure – applauds leadership and members of the Wisconsin state Senate, for passage of SB 300 (Alberta Darling- R) today, by a vote of 30-2!


Rockwell County bringing awareness to Multiple Myeloma

The Rockwall County Commissioners Court proclaimed the month of March as Multiple Myeloma Awareness Month for the county during its regular meeting on Tuesday thanks to Darla Kubik of the North Texas Multiple Myeloma Support Group.


Spreading Myeloma Awareness in Panama City, FL.

Tiffany “Flip Flop” Dunnings of Powell Broadcasting (Hot 107.9/Kick’n 103.5) interviews Mike & Sarah Davies and Sheila Wilson of the Florida Panhandle MM Support Group.  The interview was aired on Sunday March 17 on all four stations (Hot 107.9/Kick’n 103.5/Bob FM 105.1/Classic Rock 95.9) of Powell Broadcasting in Panama City, FL.


IMF's Michael Katz Honored by ASCO as an "Extraordinary Patient Advocate"
IMF Executive Board member Michael S. Katz is the recipient of the American Society of Clinical Oncology (ASCO) 2014 Partners in Progress Award. The award recognizes Mike's "exceptional achievements, outstanding work, and dedication" as a myeloma advocate. The Partners in Progress Award honors the accomplishments of an extraordinary patient advocate whose work has impacted public awareness or resulted in additional support for cancer research, treatment, prevention, or care. "Working with the IMF and others to help patients and caregivers and to advance myeloma research is an important and an incredibly rewarding part of my life. I am grateful to the community and to ASCO for this very special honor," said Mike. He will be presented with the award at a ceremony on June 2, 2014 during ASCO's 50th Annual Meeting in Chicago, Illinois. The IMF congratulates Mike on this prestigious recognition!

Maine Passes Oral Anticancer Medication Law
The International Myeloma Foundation and the State Patients Equal Access Coalition (SPEAC) applaud Maine lawmakers for their hard work in passing legislation that requires private insurance companies to charge patients taking oral anticancer medications the same out-of-pocket cost as those receiving intravenous and infused therapies. Maine is the 28th state (along with the District of Columbia) to pass this important legislation. We are pleased that many more cancer patients in Maine will have affordable access to the most effective treatment to treat their disease and look forward to adding more states to the list in 2014.

The Myeloma Post App Is Now Available for Android Devices
The IMF's mobile application was designed to regularly update anyone interested in myeloma with the latest news and information from the IMF website. The Myeloma Post was first released for iOS in 2012, but is now available for Android devices as well. Designed to share updates on educational programs, quality-of-life support resources, advocacy activities, and stories from patient and caregiver blogs and communities, the Myeloma Post is free of charge and updated regularly (often daily).

Cumulus Cares Multiple Myeloma Radio Interview with Rhode Island Support Group

Carol Murray Rossi, Support Group Leader of the Rhode Island group did a radio segment with Amy Pontes of Cumulus Cares. 


Support Group Leader Brings Awareness to Little-Known Cancer

Arlene Preisendorf, co-leader of the Grand Island NE Support Group, highlights her experience with Multiple Myeloma and how the support group has helped her and others better understand the disease.


Spreading Myeloma Awareness in Jamaica
Monica Taylor, chairperson of Jamaica Multiple Myeloma Support Group, tells her experience with Multiple Myeloma and how she started helping others afflicted with the disease through the help of the International Myeloma Foundation.

Watch the 2014 Boca Raton Patient and Family Seminar webcast
We kick off Myeloma Awareness Month 2014 by live streaming our signature Patient & Family Seminar from Boca Raton, Florida!

IMF Support Group Leader Profiled Following Tom Brokaw's Myeloma Announcement
Tom Brokaw's announcement of his multiple myeloma diagnosis has put myeloma in the spotlight recently. But myeloma has been on Linda Huguelet's radar since her own diagnosis in 2010. Linda, who leads a support group for myeloma patients and family members in Chattanooga, Tennessee, was interviewed by WRCB-TV as a follow-up to the Brokaw news about her treatments, as well as her wishes for Brokaw. "I hope he will bring more recognition to multiple myeloma," she said.

Mayor John Warford of Bismarck North Dakota Declares March Myeloma Awareness Month

IMF Support Group Leader Shirley Jonas heads campaign for Bismarck, North Dakota Mayor John Warford to declare March as Myeloma Awareness Month.  “This recognition is important to me because I feel it is important to inform the public of this type of cancer as it is being diagnosed more every year,” said Jonas. “I also want Myeloma patients in North Dakota to know that they are not in this journey alone and they can be a part of our support group and may call to talk about any questions or concerns they have about this cancer. Knowledge is Power!” “Our support group is a place where people with myeloma and their families can learn about the newest treatments available and gain support and education from those who have been living with the disease,” said Jonas.


IMF Says 73-Year Old Cancer Patient To Run In Little Rock Marathon At The Start Of Myeloma Awareness Month - His 79th Marathon With Myeloma
The International Myeloma Foundation (IMF) - improving the quality of life of myeloma patients while working toward prevention and a cure - today said marathoner Don Wright is on his way to running 100 marathons, even though he is 73 years old and is undergoing treatment for cancer. Don will be running in the 12th annual Little Rock, Arkansas Marathon on March 2nd at the start of Myeloma Awareness Month. Don began running marathons at the time he was diagnosed with the blood cancer multiple myeloma in 2003. It will be his 79th marathon since then; Don completed his 78th marathon in New Orleans in February. Don will cap Myeloma Awareness Month with his milestone 80th marathon in Ann Arbor, Michigan on March 30th.

Vermont Gets a Head Start on Myeloma Awareness Month
The Vermont town of Bennington has officially declared March "Myeloma Awareness Month." Sculptor and myeloma patient Jan Martin Bopp accepted the proclamation from town officials last Friday on behalf of the International Myeloma Foundation, noting that "Having been a professional educator for all of my professional career, I'm going to continue to educate people about myeloma."

Longtime NBC News Anchor Tom Brokaw Announces Multiple Myeloma Diagnosis
Former NBC News anchor Tom Brokaw's announcement this week that he has multiple myeloma is shining a national spotlight on what is, for many people, a little-known cancer. "We were saddened to learn that Tom Brokaw has multiple myeloma and everyone at the IMF wishes him well," said IMF Chairman Dr. Brian Durie. "Fortunately, advancements in myeloma research and treatment make it possible for many patients to live active lives for years. His courageous announcement raises awareness of myeloma – which is absolutely critical to ensuring positive outcomes."

Announcing Spanish Language Cancer Insurance Checklist

As implementation of the health reform law (the Affordable Care Act) continues, the International Myeloma Foundation (IMF) is pleased to announce the launch of a Spanish language version of the successful resource, the Cancer Insurance Checklist. This easy-to-use guide is available to assist people with cancer, a history of cancer or at risk for cancer choose a health insurance plan.  


The International Myeloma Foundation Says the Newest Myeloma Therapeutic Now Approved for Patients in Canada
POMALYST® (Pomalidomide) - Previously Approved in the U.S. and Europe - Is an Oral Therapy with Demonstrated Overall Survival Benefit in Patients Who Have Had Multiple Prior Treatment

#AskDrDurie: Does "Big Data Analysis" Apply to Myeloma Patients?
This week's #AskDrDurie video discusses how Big Data Analysis apply to myeloma patients. Watch more #AskDrDurie videos by visiting our YouTube channel: http://www.youtube.com/user/IMFMyeloma

Does Aspirin Prevent Myeloma?
Regular, long-term aspirin use was associated with a decreased risk for multiple myeloma, according to results of a study published in the journal Cancer Prevention Research. "This finding fits in with a lot of the research which shows that inflammation leads to oxidation that causes genetic damage," notes Dr. Brian G.M. Durie, MD, Chairman of the International Myeloma Foundation, in his blog this week.

March is Myeloma Awareness Month
Multiple myeloma is the second most common blood cancer. Yet the majority of patients have never heard of it until they are told they have the disease. To help raise awareness, the International Myeloma Foundation (IMF) in 2009 declared March “Myeloma Awareness Month.” Last year over 60 cities and four states did the same. Increasing awareness of this devastating disease can lead to increased funding for research and ultimately save lives. Awareness can lead to patients asking whether their doctor has considered myeloma as a possible cause for their symptoms and can lead to earlier diagnosis.

Join the Team to Raise Myeloma Awareness in Your Community
In 2013 cities, counties and states across the country declared March Myeloma Awareness Month. We are thrilled to build on the success of last year's drive for proclamations declaring March as Myeloma Awareness Month in your city or county. The Proclamation 2014 Leadership Team has created a helpful how to guide for you or a member of your group, as well as many sample resources to help you make this a reality.

Best of ASH 2013: What Patients need to know
Join IMF Chairman Brian G.M. Durie, MD, in a teleconference and Q&A on January 16 7pm ET/ 4pm PT as he highlights key information he has gleaned from over 800 myeloma abstracts presented at the 2013 annual meeting of the American Society of Hematology (ASH) that will have the biggest impact on myeloma patients, now and in the future.

Black Swan Research Initiative® Achievements and Look Ahead at 2014
In his blog this week, IMF Chairman Brian G.M. Durie, MD, discusses the important Black Swan Research Initiative® (BSRI®) goals achieved ahead of schedule in 2013 and looks ahead to the exciting work to come in 2014. As Dr. Durie explains, researchers have identified procedures to measure when zero Minimal Residual Disease (MRD-Zero™) has been achieved, and BSRI "is moving into high gear in the new year."

Senators Introduce Bipartisan Bill to Prevent Insurance Companies from Charging More for Certain Drugs

U.S. Sen. Al Franken (D-Minn.) and Mark Kirk (R-Ill.) took a key step toward ensuring access to the best cancer treatments for patients across the country by unveiling a bipartisan bill to end the unfair practice of allowing insurance companies to charge more for certain chemotherapy drugs.  READ MORE ...

 


View the ASH 2013 videos
ASH 2013 videos are now ready to be viewed. Tune in as the IMF brings you the highlights of the 55th annual meeting of the American Society of Hematology (ASH), an exciting convergence of 20,000 health care professionals from around the world.

Watch the webcast of the IMWG Conference Series "Making Sense of Treatment"

IMWG Myeloma Experts debate the latest trends in treatment
December 9, 2013
New Orleans, Louisiana, USA


IMF Holiday Store
Looking for something special to give your friends and family this holiday season? Check out the items in our holiday store. Your purcheses support the programs of the IMF. But order early! Many of the items are custom made, so the earlier you order the better!

View the IMF’s Multiple Myeloma Journalists’ Workshop and Webcast from ASH 2013 in New Orleans.
Panelists will discuss the progress that led to TODAY and the promise that will guide TOMORROW
Panelists: • Brian Durie, MD, International Myeloma Foundation Chairman and Co-founder • María-Victoria Mateos, MD, PhD, University Hospital of Salamanca, Spain • Joseph Mikhael, MD, Mayo Clinic, Scottsdale, Arizona

Hear the patient perspective from: • Joseph Tariman, PhD, APRN, IMF Nurse Leadership Board & Northwestern University Myeloma Program, Chicago, Illinois • Long-term myeloma survivors and advocate


The International Myeloma Foundation announces partnership with Onyx Pharmaceuticals to support Black Swan Research Initiative®

- Black Swan Research Initiative (BSRI®) Goal is Improving Treatment Options for Myeloma Patients 

- Onyx Partnership to Support Significant Research Initiative


Webcast of the "Critical Issues Need Answers: Providing Best Options for Myeloma Treatment in 2013" conference at ASH 2013

Friday, Dec. 6, 2013
1:30pm ET/12:30pm CT/10:30am PT
Ernest N. Morial Convention Center
New Orleans, Louisiana


Latest Myeloma Research, Live IMF Webcasts from American Society of Hematology Meeting

The International Myeloma Foundation says findings to be presented at this year's annual ASH meeting shed new light on when, how long and how much to treat myeloma patients.

–More Than 800 Myeloma Studies Will Be Featured at the 55th Annual Meeting of the American Society of Hematology (ASH)
–The IMF Will Present Several Educational and Informational Programs, and Update the Status of Its Groundbreaking Black Swan Research Initiative® to Find a Cure


Follow the IMF Social Media Team at ASH 2013 #ASH13IMF
Tune in as the IMF brings myeloma support group leaders and patients to New Orleans for the 55th annual meeting of the American Society of Hematology (ASH), an exciting convergence of 20,000 health care professionals from around the world. Start following the IMF ASH team members now on social media as they ramp up to share the latest clinical updates in myeloma research, therapies, and practice strategies via Twitter (#ASH13IMF), Facebook, blogs and videos.

Your help is urgently needed for Canadians living with myeloma
We kindly request your help for Canadians living with myeloma. Myeloma Canada, an international affiliated partner of the IMF, is participating in a Canadian government funding review process for the treatment of myeloma with pomalidomide (Pomalyst®) and needs our help.

It's Giving Tuesday!
This year, the International Myeloma Foundation proudly joins thousands of charities around the world in supporting Giving Tuesday - a day for us all to remember to give back. Support the IMF on December 3rd with your tribute gift and send someone you love one of three special edition holiday e-cards.

Health Reform and You: Navigating the Health Insurance Marketplaces
Experts discuss everything you need to know to apply for health insurance coverage through the new health insurance marketplaces plus questions that ALL myeloma patients should ask when searching for a new insurance plan. Learn where to apply, who can help, and what to keep in mind as a myeloma patient. The speakers will provide a broad national overview of these policies, and give you resources to learn more about what is happening in your state.

IMF Launches New Website for Veterans
The IMF has long been a resource for veterans seeking information about myeloma – like Jerry Walton (pictured), a 33-year Navy veteran who founded the Southeastern Virginia Multiple Myeloma Support Group. Now that effort expands with the launch of the IMF's new Veterans Against Myeloma (VAM) website. The site provides links to relevant Veterans Administration information, to state veterans assistance offices and to national veterans service organizations. Email alerts will notify VAM readers about breaking news and articles of interest

Affordable Care Act FAQ
Still mystified by the Affordable Care Act? Check out our new FAQ document for answers to some commonly asked questions.

ASH 2013 Preview, Part 2: From New Drugs to the Biology of Myeloma
Part 2 of the ASH 2013 preview. Summary of new agents in earlier trials at the Phase I-II or preclinical stages.

ASH 2013 Preview: More Than 100 Interesting and Important Myeloma Abstracts
The IMF team reviewed the more than 800 ASH 2013 abstracts that were released last week and identified 131 myeloma abstracts worthy of specific comment. One of the top plenary session abstracts for ASH this year is the MM-020 study of Revlimid in newly diagnosed myeloma patients, says IMF Chairman Dr. Brian Durie. In the first of his two-part overview of the ASH 2013 abstracts, he focuses on those that looked at novel agents

Living Well Teleconference Series: Complementary & Alternative Medicine:
What Myeloma Patients and Caregivers Need to Know
Missed Living Well with Myeloma Teleconference Series on Complementary & Alternative Medicine held November 13? Watch the replay here.

Advocates in Action in Wisconsin
Aimee Martin, the IMF's Grassroots Liaison, traveled to Madison, Wisconsin last week to train and support local advocates during a day of successful meetings with their state legislators. The advocates met with their state senators and representatives to discuss the Wisconsin Cancer Treatment Fairness Act, telling their legislators why equal coverage for oral anticancer treatment is so important for patients. Check out Aimee's photo blog to see how the day unfolded and read about how the advocates impacted their legislators.

Shop at Amazon & help support the IMF
Shop at Amazon, receive the same selection and price as usual, and support the International Myeloma Foundation at the same time! Visit Amazon using the special link below, make your purchases the same way as you always do, and Amazon will donate up to 6% of your purchase to support the IMF. Here is the special link: http://amazon.myeloma.org

IMF Inspires Patient Advocates in South Korea
Arin Assero, IMF Vice President of Global Advocacy, traveled to South Korea last week to attend the annual myeloma seminar hosted by the Korean Blood Cancer Association (KBCA) and the Korean Multiple Myeloma Working Party. She spoke to the meeting's 250 attendees about how they could be advocates, and forged bonds with a patient organization affiliated with KBCA to collaborate on organized advocacy efforts.

In Cancer Research, Big Data Needs to Be Smart, Too
The University of Texas MD Anderson Cancer Center has announced that it will partner with IBM's Watson supercomputer to fight cancer – specifically leukemia. But myeloma patients may well ask: "What can Big Data do for me?" In his blog this week IMF Chairman Dr. Brian Durie describes how the IMF's research arm—the International Myeloma Working Group—uses Big Data smartly to categorize and treat myeloma patients.

Clinical Trial Underway of Drug to Prevent Skeletal-Related Events in Myeloma
The drug denosumab is approved for the prevention of skeletal-related events in patients with bone metastases from solid tumors, but its effects in patients with multiple myeloma need to be further studied. The drug is a fully human monoclonal antibody against RANK ligand, a protein critical for osteoclast formation, maturation, and function. An international clinical trial of denosumab is underway to help determine if it can prevent skeletal-related events in myeloma.

Computed Tomography (CT) Scans and Cancer
In cancer, CT may be used to help detect abnormal growths; to help diagnose tumors; to provide information about the extent, or stage, of disease; to help in guiding biopsy procedures or in planning treatment; to determine whether a cancer is responding to treatment; and to monitor for recurrence.

Eating Hints: Before, During, and After Cancer Treatment
Here are some recipes for what to eat before, during, and after cancer treatment from www.cancer.gov

Understanding the Body's Immune Defenses Against Myeloma
A recent article in the New York Times draws attention to how cancers survive and evade the immune system and highlights a new book, "The Compatibility Gene: How Our Bodies Fight Disease." The key point for myeloma research is that inactivation of T-lymphocyte cells and natural killer cells—which should be killing myeloma cells—occurs through a mechanism called the PD-1/PD-L1 system. In Dr. Brian Durie's blog this week, he examines what this means for myeloma patients

IMF Pushes Wisconsin Lawmakers to Pass the Cancer Treatment Fairness Act

IMF advocate Tom Chellius and National State Affairs Consultant Zina Cary testified this week at a hearing held by the Wisconsin State Senate Insurance & Housing Committee in support of Senate Bill 300 (Cancer Treatment Fairness Act). The bill would require insurers in Wisconsin to cover oral anticancer therapies at rate equal to intravenous, or IV, treatments. Joining the IMF in the packed hearing room were members of the Wisconsin Coalition for Cancer Treatment Access (WCCTA) and the bill's legislative champions, State Senator Alberta Darling and State Representative Pat Strachota. 


Miracles Happened at 5K Event
Miracles can happen. Myeloma is a rare form of cancer that took a back seat on Saturday, October 5, 2013 when more than 450 runners/walkers joined together at the "Miracles for Myeloma" race to raise money and awareness for research for this deadly disease.

IMF's Nurse Leadership Board Members Review Novel Myeloma Therapies
IMF's Nurse Leadership Board (NLB) members review the use of proteasome inhibitors and immunomodulatory agents (IMiDs) in myeloma treatment in the current issue of the Journal of the Advanced Practitioner in Oncology. "The integration of novel agents into the treatment of multiple myeloma has shifted the focus from an incurable disease to one that is chronic, with a realistic hope of someday achieving a cure," write the article's co-authors, Sandra E. Kurtin, RN, MS, AOCN®, ANP-C, and Elizabeth Bilotti, MSN, RN, APN, OCN®. Publishing this guide supports the NLB's mission to develop broad recommendations for myeloma care.

Advocacy Update: State Oral Parity Bills
Over the past few months, even while some state legislatures were closed for summer recess, there has been important progress on key oral parity bills, and more action is expected in the coming weeks. Bills are moving forward in Wisconsin, Ohio and Michigan, while the IMF is working against changes made by the sponsors of California's oral parity bill that decrease its effectiveness.

Miracles for Myeloma: 5K in New Jersey This Weekend
This Saturday, October 5th will mark the first annual Miracles for Myeloma 5K Run/Walk in Clark, New Jersey. Event organizers hope the 5K inspires hope and gives strength to patients and their families, while supporting the IMF's research to find a cure for myeloma. Among the runners (or walkers!) will be Suzanne Battaglia, IMF Director of Member Events, from the IMF's headquarters in California. Come meet Suzanne, the event organizers, and new friends this Saturday!

NIH Clinical Trials and the Government Shutdown
Because of the US government shutdown, new clinical trials that would have begun at the National Institutes of Health (NIH) are being deferred until the government resumes operation. Existing clinical trials are continuing, but newly registered patients are not being admitted into any trials. According to CNN, each week about 200 new patients begin participating in clinical trials at the NIH Clinical Center in Bethesda, Maryland. Research will continue at other institutions that have received NIH grants, but the NIH is not accepting new grant applications at this time.

Government Shutdown and its Impact on Cancer Patients
The US Federal Government entered a partial shutdown on October 1 suspending services deemed 'unessential.' The shutdown was a result of the government's failure to enact regular appropriations or a continuing resolution for the 2014 fiscal year. This is the first U.S. federal government shutdown since the shutdown of 1995 and 1996. Read about how the current government shutdown will affect cancer patients.

Black Swan Research Initiative's Distinctively Different Pathway to a Cure
Earlier this year the IMF launched the Black Swan Research Initiative™, a breakthrough approach to finding a cure for myeloma. Following in our footsteps, others are ramping up their myeloma research efforts. This is great news for myeloma patients, but BSRI's unique approach to finding a definitive cure for myeloma sets it apart from all other myeloma research efforts. IMF Chairman Dr. Brian Durie explains what makes BSRI different in his new blog.

H.E.A.L. Well Nutrition Guide
This free resource guide from Meals To Heal offers a wealth of information for cancer patients, caregivers and other individuals seeking to improve their nutrition and physical fitness regimes. A joint effort of Meals to Heal, LIVESTRONG and the American Institute for Cancer Research, the HEAL Well Nutrition Guide can be downloaded or printed for your easy reference. Happy reading!

IMF Engages in Congressional Briefing on Collaborative Research
The IMF joined legislators and representatives from other cancer patient advocacy organizations to raise awareness for funding the impressive collaborative research that is lengthening the lives of myeloma patients each day.

Mini Cooper Enthusiast Tom Chelius is September’s Advocate of the Month.
Learn more about September's Advocate of the Month, Tom Chelius. Tom’s vivacity and humor through his 6.5 years with myeloma is a fabulous addition to the ACTION team and to the support group members he inspires to get involved regularly.

New Multiple Myeloma Insurance Questionnaire
Find the questions to consider when shopping for new insurance plans

Causes and Treatment of Myeloma Fatigue Examined in New IMF Booklet
Myeloma patients experience fatigue for a variety of reasons. It can be caused by the disease, by treatment, and by the understandable anxiety and/or depression that affects many. The IMF's new booklet "Understanding Fatigue" contains a thorough examination of the causes of myeloma fatigue, strategies to help cope with it, and suggestions for discussing fatigue with your doctor. Part of the IMF's "Understanding" series, this booklet is an online-only publication.

IMF Protests Amendments to California Oral Anticancer Treatments Bill
IMF's Advocacy team this week registered its disappointment with amendments recently added to the original bill (AB 219) to increase the cap for out-of-pocket expenses from $100 to $200for patients taking oral anticancer treatments. The original intent of this bill was to eliminate the cost disparity between oral and intravenous anticancer medications, ensuring access to all anticancer medications for cancer patients. Additional proposed changes allow insurers to increase the cap over time, delay the implementation date until 2015, and sets the law to expire in 2019. California voters can contact their state senators to oppose the amendments.

Does Alcohol Reduce Myeloma Risk? Moderation Is the Key
Alcohol consumption may be associated with reduced risk of multiple myeloma, according to newly published research. Dr. Brian Durie, IMF Chairman, ponders the explanations for these findings in his blog this week. The key, he says, is moderation.

Black Swan Research Initiative: As We Move Ahead, What Will We Learn?
"The Black Swan Research Initiative team has been busy since our spring launch," writes IMF Chairman Dr. Brian Durie in his blog. "We already know where we want to end up—curing this destructive disease—but as we move ahead our key focus is discovering the best route or routes, as the case may be, to get us there."

In the News: IMF's Advocacy Work
Cancer Today looked at how insurance reimbursement issues impact cancer patients who are prescribed oral drugs. As the article notes, the IMF and other advocacy organizations have worked to get oral parity laws passed in 26 states and Washington, DC in just the past five years

Thanks to IMF Supporters Who Make Miracles Happen!
Making Miracles is our way of saying "thank you" to the members who support us in various ways, including our grassroots member fundraiser program. This semi-annual newsletter produced by the development department serves double duty—as a platform for recognizing our dearest supporters and as inspiration for those who want to find ways to get more involved.

Philadelphia Patient & Family Seminar August 23-24, 2013
Where:
Westin Philadelphia Hotel
99 South 17th Street (between Market and Chestnut)
Philadelphia, PA

Tel: 215-563-1600 (reservations and directions)
Fax: 215-567-2833


Advocating for Access to Oral Myeloma Treatments
There have been several recent FDA approvals in myeloma-- all of which are oral medications. But what if your doctor suggests a medication for you and your insurance won't cover it? Unfortunately many patients experience this throughout the US...and throughout the world. Meghan Buzby, Director of US Advocacy for the International Myeloma Foundation, discusses the obstacles to accessing myeloma treatment and explain what patients can do to make a difference.

The International Myeloma Foundation says Pomalidomide Approval in Europe Addresses Critical Need for More Treatment Options for Patients

--Pomalidomide (IMNOVID® in Europe; POMALYST® in the U.S.) Is Approved for Patients in Europe and the U.S. Who Have Had Multiple Prior Treatments--

--IMF Calls for Rapid Reimbursement Approvals throughout the EU--


The IMF's Black Swan Research Initiative Featured in New Video
Excitement over the launch of the IMF's Black Swan Research Initiative (BSRI) is spreading throughout the myeloma community. In this video interview with Patient Power's Andrew Schorr, Dr. William Bensinger, Seattle Cancer Care Alliance myeloma expert, describes the "enormous" progress in myeloma treatment in the last 15 years, which has set the stage for the BSRI's undertaking to find a definitive cure. Myeloma isn't just one disease, says Dr. Bensinger, who is a member of the International Myeloma Working Group. "It's several different sub-clones of disease. Understanding what those subtypes are and how best to eradicate them is part of this initiative."

Updated Understanding Pomalyst® (pomalidomide) Capsules Series now available on the web

The U.S. Food and Drug Administration (FDA) approved Pomalyst® (pomalidomide) on February 8, 2013, to treat patients with multiple myeloma whose disease progressed after being treated with other cancer drugs.


IMF: High-Risk Presymptomatic Myeloma Patients May Benefit From Early Intervention
The study from the PETHEMA Group in Spain Says an Oral Treatment Regimen “Significantly Delayed Time to Progression” with an Overall Survival Benefit in High-Risk Smoldering Myeloma. Study Published in the Prestigious New England Journal of Medicine.

The Summer Myeloma Today is on the web and at the post office!
GREAT 2-page spread on all the proclamations our members got during March's Myeloma Awareness Month!

Health Reform and You: Navigating the Changing Health Insurance System in Illinois
This coming fall, Illinois will begin enrolling people in a new health insurance program that will help millions of Illinois residents buy health insurance- some for the first time. Come learn about how this program, as well as changes to Medicare and Medicaid, could help YOU and what it means to cancer patients.

Chicago Patient & Family Seminar August 9-10, 2013
If you are living near Chicago, IL and you or a family member has been diagnosed with Multiple Myeloma, we invite you to join our Patient and Family Seminar on Aug 9-10 at the Renaissance Hotel North Shore. Click on the link for more details.

Missed Dr. Durie's Myeloma Updates 2013 Post ASCO/EHA/IMWG teleconference? Watch the replay here.
Learn more about current trends in myeloma treatment and research with this update from three major medical meetings held in June 2013. Dr. Brian G.M. Durie explains what’s new and exciting from the American Society of Clinical Oncology, the European Hematology Association, and the International Myeloma Working Group Summit.

Living with Myeloma for 18 Years: A Patient Gives Advice to the Newly Diagnosed
Patient Power interviews Jack Aiello at the EHA 2013. Aiello has was been living with myeloma for over 18 years and says that IMF is a great educational vehicle for patients and caregivers.

OncLive: Project Aims to "Bridge the Gap" From Remission to Cure in Multiple Myeloma
ONCLive featured Dr. Brian Durie and the Black Swan Research Initiative.

"The ABC’s of the ACA for Private Health Insurance" Teleconference.

Health Reform and You Teleconference Series: The ABC's of the ACA for Private Health Insurance

When: Thursday June 13th 7pm EDT/ 4pm PDT

Who: Cancer patients and family members who want to learn about health care reform and how it will affect them, and in particular uninsured or under-insured individuals, and people interested in purchasing individual or small group health insurance through the newly created health insurance marketplaces.

Toll-Free Dial-in#  (877) 441-5676


Missed the International Journalists' Workshop from Stockholm. Watch it now.
IMF and Myeloma Canada bring news of advancements in myeloma treatment to journalists covering the 18th Congress of the European Hematology Assoc.

Onclive: Charting the Course in Myeloma: Durie Keeps Standards, New Goals in Sight

IMF to Convene 1st Global Summit to Raise Awareness and Increase Access to Treatments

Cancer Patient Advocate Leaders from 11 Countries Gather June 13th

Advocate from Turkey Says Patients Are Desperate for Mutual Support