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Clinical Trial Opens for New Generation Proteasome Inhibitor
Dr. Ola Landgren announced the opening of a new Phase I/II clinical trial at Memorial Sloan-Kettering Cancer Center for patients with relapsed and/or refractory myeloma. The trial will test a new proteasome inhibitor called VLX1570, which is given intravenously. VLX1570 was developed by researchers at Sweden’s Karolinska Institute. Memorial Sloan-Kettering has some funds available to help patients who demonstrate financial need with transportation and hotel costs. Click HERE to see the full trial listing. Please call the IMF InfoLine at (800) 452-2873 with any further questions.

What Is the Value of Treatment for Individual Cancer Patients?
Having myeloma is undeniably expensive. But will new systems of evaluating the cost and efficacy of treatment end up harming myeloma patients by mandating suboptimal care and eliminating access to needed drugs? In his blog this week, IMF Chairman Brian Durie examines these questions. “Individual patient value must be considered,” he writes. “But how do we do that?” Click HERE to read Dr. Durie’s blog.

Get to Know Your Medical Records
Myeloma patients need to have access to their medical records. But gathering years of data from dozens of different providers can be a challenge. At this summer’s annual Support Group Leader Summit, the IMF will present an educational session outlining which medical records are most important to have instantly available and how to get them—knowledge that leaders can pass along to their support group members. Another source of guidance was published Monday in a Wall Street Journal article titled “How to Take Charge of Your Medical Records.” And, in time for Independence Day, a campaign called “Get My Health Data,” started by Dr. Farzad Mostashari, former National Coordinator for Health Information Technology at the US Department of Health and Human Services, is asking people to sign a petition endorsing easy electronic access to patients’ records in order to “free” them. Click HERE to sign the petition and to learn how to find the information you need to better manage your health.

Los Angeles IMF Patient & Family Seminar Announced
The IMF will host a two-day Patient & Family Seminar August 21-22 at the Sheraton Universal Hotel in Los Angeles, California. What do you get at an IMF Patient & Family Seminar? Attendees will receive the latest information on myeloma, access to many of the top myeloma experts, and a chance to share the company and support of other myeloma patients and family members. For more information, or to register, please click HERE.

Farydak Receives Positive Recommendation from European Medicines Agency Committee
On June 26, the Committee for Medicinal Products for Human Use (CHMP), an advisory committee of the European Medicines Agency (EMA), released a positive opinion regarding European approval of Farydak® (panobinostat) for the treatment of myeloma in certain cases. While this doesn’t mean Farydak has been approved, it’s an important first step in the EMA’s process. CHMP’s statement in particular supports the use of Farydak in combination with Velcade® and dexamethasone for myeloma patients who have relapsed and have already tried at least two prior treatment regimens.

Open Call to Nurses to Attend 15th Annual International Myeloma Workshop
The 15th International Myeloma Workshop will be held in Rome, Italy, September 23-26. During this important semi-annual event, a full-day nursing symposium will also take place on Wednesday, September 23rd. Nurses are invited and highly encouraged to attend. The symposium will include a keynote presentation by Joseph Tariman, Assistant Professor, School of Nursing at De Paul University, titled, “Integrating Myeloma Genomics into Nursing Practice: Patient Education and Shared Decision Making.”

The Untenable Cost of Cancer Drugs
The Supreme Court’s re-affirmation of Obamacare, aka the Affordable Care Act, is certainly good news, but the rising cost of cancer drugs threatens to bring down our medical insurance infrastructure – even as it places a morally questionable value on human life. “Healthcare is not a luxury, it is what is provided to citizens in a civilized society,” writes IMF Chairman Dr. Brian Durie.

Global Myeloma Action Network Tackles Patient Education and Access to Treatment

The IMF’s Global Myeloma Action Network (GMAN) recently gathered during the International Myeloma Working Group (IMWG) Summit in Vienna, Austria. Representatives from myeloma patient groups in 23 countries met to discuss important myeloma issues, which as IMF Global Advocacy Executive Ray Wezik pointed out, also included “many successes.” Patient advocates around the globe are seeking more educational and financial resources, as well as access to more treatment options. 

New Drug Data Challenge Ways We Treat Myeloma
In his blog this week, IMF Chairman Dr. Brian Durie reviews the key highlights of the annual meeting of the American Society of Clinical Oncology (ASCO) and the 2015 International Myeloma Working Group (IMWG) Summit. Data from clinical trials of the monoclonal antibodies elotuzumab and daratumumab dominated discussions at both events, and Dr. Durie considers the challenges these new drugs present for how we treat myeloma. Click HERE to read his blog.

Watch Replay of ONS Presentation: Case Studies in Myeloma
The IMF sponsored a presentation of several myeloma case studies at the recent 41st Annual Congress of the Oncology Nursing Society (ONS) in Orlando, FL. The IMF Nurse Leadership Board’s Joseph D. Tariman, Ph.D., Beth Faiman, Ph.D.,Teresa Miceli, RN, and Sandra Kurtin, RN, MS, presented “Case Studies in Myeloma: Nursing Implications of Evolving Treatment Paradigms.” To watch the video presentations and see the complete set of slides, click HERE.

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