CLF CEO, Susan Thornton and Director of Development/Marketing, Kira Mann attended the American Society of Hematology (ASH) 2013 Annual Meeting in December. The action-packed event included medical meetings plus opportunities to connect with other patient advocate representatives. Celgene, Novartis, Therakos and other industry partners hosted meetings to provide updates on public policy, drug development processes and challenges facing the blood cancer community in general.
Friday evening's T-Cell Symposium drew a large crowd of clinicians, industry representatives and others interested in learning more about T-cell lymphomas. The outstanding panel consisted of T-cell experts Madeleine Duvic, MD, Francine Foss, MD, Lauren Pinter-Brown, MD and Barbara Pro, MD. It was exciting to see the overwhelming interest in the topic. Click here to read highlights from the symposium.
Sunday was an exciting day for cutaneous lymphoma. Dr. Pierluigi Porcu, former CLF Board member and Medical Affairs Committee member, and Susan were interviewed by OncLive and Patient Power about cutaneous lymphoma, the CLF and the CLARIONS Research Grant program. It was fun to hear Dr. Porcu describe cutaneous lymphoma in Italian for Patient Power. They will be broadcasting that segment on an Italian affiliate.
After the interviews, the CLF team, including new CLF Board President, Chris Shipp headed to the Astor-Crowne Plaza for the Foundation's Awards Reception. This year’s reception to honor our Young Investigator and CLARIONS Research Grant award winners was co-hosted by the United States Cutaneous Lymphoma Consortium. It was a wonderful gathering of experts in the field of cutaneous lymphoma.
This year’s Young Investigator Awardee was Maria Florencia Cayrol, PhD. Ms. Cayrol’s research, entitled "Thyroid hormones maintain the CTCL malignant phenotype through membrane- and nuclear-initiated transcriptional programs", was presented in a poster session on Sunday afternoon prior to the reception.
Our first two CLARIONS Research Awards were also presented at the reception. Dr. Leandro Cerchietti attended the reception and shared about his research project, "Thyroid hormone receptor modulation in CTCL treatment." Unable to attend, Drs. Clark and Phillip Devlin spoke about their research project, "Low dose XRT as a cure for skin resident T-cell lymphomas," via video. You can view these videos here.
New CLF Board President Christopher Shipp shares his history with the Foundation and his thoughts on supporting cutaneous lymphoma research:
Dr. Steven Horwitz shares his thoughts on joining the Foundation as a new board member and its involvement in research.
Former CLF Board Member Pierluigi Porcu, MD shares the importance of early funding for research.
It was a busy five days for the Foundation at ASH but much was accomplished and the voices of cutaneous lymphoma patients were heard far and wide.
The Lymphoma Coalition Global Summit was held the two days before the start of the American Society of Hematology conference in New Orleans. The CLF was represented by CEO Susan Thornton. This is a yearly gathering of patient advocate representatives from around the world that specialize in supporting patients with lymphoma, leukemia and other types of blood cancers. There was much sharing of best practices, ideas and networking among the attendees from the far reaches of the world. The second day of the Summit was geared to learning about new initiatives and updates from industry, including interesting discussions about bio-similar drugs that are coming in the future as well as the impact of hair loss for patients going through treatment.
More information about the Summit can be found in the LC Special Edition newsletter posted here.
Seattle Genetics presented data at the 2013 ASH Annual Meeting from their recent clinical trial of ADCETRIS (Brentuximab Vedotin) for treating CD30-positive CTCL patients, including lymphomatoid papulisis (LyP), primary cutaneous anaplastic large cell lymphoma and mycosis fungoides. Click here to read more about what was presented on this ongoing study.
November 18, 2013 - Actelion announced that VALCHLOR (mechlorethamine), the first and only FDA-approved topical formulation of mechlorethamine, is now available for patients in the United States. VALCHLOR, a gel which is applied topically once a day, can be used to treat patients with stage IA and IB mycosis fungoides-type cutaneous T-Cell lymphoma who have received prior skin-directed therapy.
Click here to read the full press release.
Two times a year, the National Patient Advocate Foundation (NPAF) convenes the Policy Consortium bringing together a diverse group of national health care thought leaders to discuss issues of importance to all health care stakeholders. This fall's discussion addressed "Price, Value and Access: A Discussion on Solutions to the Rising Costs of Health Care."
Susan Thornton, CLF's CEO, and Claudia Day, former CLF Board Member and patient advocate attended the meeting. Click here to read highlights from the Consortium.
October 4, 2013 - CLF Board President, Dr. Stuart Lessin and CEO Susan Thornton are featured guests on a current episode of DermTV.com, the Internet’s daily skincare video show. Dr. Lessin and Susan provide information both on what cutaneous lymphoma is and what the Cutaneous Lymphoma Foundation provides for those affected by this disease. The episode is available to view at http://dermtv.com/.
September 30, 2013 - 7 MILLION PEOPLE TO USE HEALTH INSURANCE MARKETPLACES IN 2014: NUMBER EXPECTED TO GROW TO 27 MILLION IN JUST FIVE YEARS
The Cutaneous Lymphoma Foundation and a group of 18 partnering cancer and patient advocacy organizations, launched the Cancer Insurance Checklist, a new resource to help people with cancer, a history of cancer, or at risk for cancer choose insurance plans in the new state-based Health Insurance Marketplaces opening on October 1st.
The Cancer Insurance Checklist will empower thousands of people touched by cancer as implementation of the Affordable Care Act continues.
The Cancer Insurance Checklist is designed to help you when shopping for insurance on your state’s Health Insurance Marketplace/Exchange if you have cancer, a history of cancer, or are at risk for cancer. Visit www.cancerinsurancechecklist.org to learn more.
Click here to read the full press release.
August 26, 2013 - Ceptaris Therapeutics, Inc., a privately held, specialty pharmaceutical company, announced today that the U.S. Food and Drug Administration (FDA) has granted marketing approval for the orphan drug VALCHOR™ (mechlorethamine) gel for the topical treatment of stage IA and IB mycosis fungoides-type cutaneous T-cell lymphoma (CTCL) in patients who have received prior skin-directed therapy. VALCHLOR is the first and only FDA-approved topical formulation of mechlorethamine, commonly known as nitrogen mustard. VALCHLOR is a gel that is applied topically once a day and dries on the skin. Patient support and assistance programs will be established for VALCHOR.
July 31, 2013 - Actelion US Holdings Company and Ceptaris Therapeutics, Inc. announced that they have entered into an Agreement for Actelion to acquire Ceptaris depending upon certain closing conditions, including the U.S. Food and Drug Aministration (FDA) approval of Ceptari's product, VALCHLOR. If approved, VALCHLOR would be the first and only FDA-approved topical formulation of mechlorethamine for the treatment of early-stage mycosis fungoides-type cutaneous T-cell lymphoma.
The Patient-Centered Outcomes Research Institute (PCORI) is currently looking for researchers, stakeholders and patients to become potential reviewers for the applications related to the recently released Funding Announcements for Clinical Data Research Networks (CDRNs) and Patient-Powered Research Networks (PPRNs).
If interested, click here for more information. For planning purposes, PCORI requests responses by 5:00 pm EST on Friday, September 6, 2013.
The Affordable Care Act (ACA) is the new law that will require everyone to get health insurance. The particulars of the law and what it may mean for individuals can be hard to understand. Provided below are resources that can help explain who the law will affect and how.
A good place to start is this animated video created by the Kaiser Foundation. It provides basic information to help explain the potential impact of healthcare reform on individuals.
Beginning on October 1, 2013, consumers will have access to a variety of health insurance products, with coverage beginning on January 1, 2014. These products will be available on Exchanges, also known as Health Insurance Marketplaces, with plans designed to fit your budget and health care needs.
This guide developed by the Patient Advocate Foundation, insureUStoday and the National Patient Advocate Foundation is intended to help you better understand the new Health Insurance Marketplaces, so you can determine what coverage is right for you and your family.
Within this publication you will find:
• An introduction to the concept of health insurance
• An explanation of what Health Insurance Marketplaces are
• Information on health insurance coverage and plan options
• Affordability options available to you and your family through the Marketplace
• And information on how to enroll in coverage
This guide also provides a list of state resources where you can find answers to questions specific to your state Marketplace.
The Patient Protection and Affordable Care Act (ACA) contains provisions designed to increase the number of insured in the United States, yet most Americans do not understand how the ACA will affect them and their options for health insurance. The ACA is broad, has many components, and is hard to understand. The authors of this guide believe it is critical for both health care providers and consumers to be able to answer the four basic questions:
1. What are my choices for health insurance?
2. How do I get it?
3. How do I use it?
4. How much will it cost me?
The guide was created by Victor Y. Wu, Kara L. Jacobson, Winston F. Wong, Kavita K. Patel, Lyla M. Hernandez, George J. Isham, and Ruth M. Parker, participants in the Collaborative on Health Literarcy and Access, Health Care Coverage, and Care of the Institutute of Medicine Roundtable on Health Literacy. The discussion paper generated by the roundtable is available on the Institute of Medicine's website. Click here to read the full discussion paper.*
*Note: The views expressed in discussion papers are those of the authors and not necessarily of the authors’ organizations or of the IOM. Discussion papers are intended to help inform and stimulate discussion. They have not been subjected to the review procedures of the IOM and are not reports of the IOM or of the National Research Council.
At the ASCO 2013 Meeting, Susan Thornton, CEO of the Cutaneous Lymphoma Foundation, discussed the Foundation's activities and the CLARIONS Research Grant program. Click here to watch Susan's interview with Oncology TV.
Itch! Cutaneous lymphoma patients know too well how itch can drastically affect their quality of life. The results of a new itch study from the National Institute of Health may lead the way to future relief. Click here to read the details on the National Institute of Health's blog.
Want your voice heard concerning the FDA's regulation of medical products? Visit the FDA's new Patient Network website!
With their new website, the FDA welcomes the unique perspective of patients, family members, caregivers and patient advocates directly affected by serious disease, to the Agency’s decision-making processes. Get involved....your voice counts!
The Cutaneous Lymphoma Foundation congratulates Dr. Ellen J. Kim upon receiving the Leonard Berwick Memorial Teaching Award. Established in 1980-1981, the award is in memory of Leonard Berwick to recognize " a member of the medical faculty who in his or her teaching effectively fuses basic science and clinical medicine."
Dr. Kim is an associate professor of dermatology at the Hospital of the University of Pennsylvania. Her research focuses on clinical trials of novel agents for advanced cutaneous T-cell lymphoma. Dr. Kim is a long-time supporter of the Cutaneous Lymphoma Foundation and participates in our patient educational forums. Click here to read the full press release.
On May 18, CLF's Susan Thornton participated in the Lymphoma Association of the UK's annual patient conference held in Guildford, England. Susan hosted a breakout session for patients diagnosed with cutaneous lymphoma featuring a round table discussion with Alistar Robson, MD, Consultant Dermatopathologist, London and Danuta Orlowska, Clinical Psychologist, both part of the multidisciplinary cutaneous lymphoma practice at St. John's Institute of Dermatology/St. Thomas' Hospital.
Of special note was a family member who attended whose sister is a patient currently living out of the country. The woman was able learn more about lymphoma in general as well as cutaneous lymphoma specifically, so she can better support her sister even though they are miles apart. It was a wonderful day and an additional opportunity to connect patients and their families with clinical expertise and support.
The International Investigative Dermatology meeting is held every 5 years and brings together dermatologists, scientists and researchers from around the world. This year’s event was the largest ever with 2,300 attendees and over 1200 clinical posters on display describing work being done in all types of skin diseases. Of these, over 30 posters were specific to cutaneous lymphoma and represented work from various countries and institutions around the globe.
Dr. Rachel Clark, from Brigham and Women's Hospital, was one of three “rising star” lecturers at the opening ceremonies and Dr. Tom Kupper, from Dana Farber, presented at a satellite session on Wednesday. Dr. Kupper is the current President of the Society of Investigative Dermatology, which provides a huge opportunity for cutaneous lymphoma to be showcased at these scientific meetings.
In addition, Dr. Sima Rozati, from the University Hospital Zurich and our Young Investigator award winner, presented her research at a satellite session on Tuesday. Other cutaneous lymphoma presentations were also given over the course of the 4-day meeting.
The CLF would like to share a video from OncLive of Lauren Pinter-Brown, MD, where she discusses physician and patient expectations when treating cutaneous T-cell lymphoma (CTCL). Dr. Brown serves as Clinical Professor, in the Department of Medicine, Hematology-Oncology, University of California, Los Angeles. Watch the Dr. Pinter-Brown Video.
New help for itch may soon be available to individuals with cutaneous lymphoma as Elorac's topical naloxone lotion has been granted fast track designation by the FDA. Click here to read the full announcement.
Ever wonder why you may be asked to frequently contact your congressional representative on the same bill? Truth is, Congress can vote on a bill five times before it becomes law. Why five times? And, why is it so important for you to act each time? Watch the American Cancer Society 90-second video to explain it all.
Targeted HealthCare, an oncology-related website, has posted a video of Lauren Pinter-Brown, MD, Clinical Professor, Department of Medicine, Hematology-Oncology, University of California, Los Angeles, discussing the treatment of cutaneous T-cell lymphoma (CTCL), particularly early-stage CTCL. To visit the Targeted Healthcare website and view this informative video, click here: Dr. Pinter-Brown Video
The Cutaneous Lymphoma Foundation will be joining the National Organization for Rare Disorders (NORD) and others around the world in observing World Rare Disease Day on February 28, 2013. On this day, millions of patients and their families will share their stories to focus a spotlight on rare diseases as an important global public health concern.
A rare disease is one that affects fewer than 200,000 Americans. There are nearly 7,000 such diseases affecting nearly 30 million Americans. On Rare Disease Day, people with rare diseases around the world promote awareness of the challenges of living with a rare disease. The global theme for 2013 is “Rare Disorders Without Borders.”
World Rare Disease Day was launched in Europe four years ago and last year was observed in more than 60 nations. It is always observed on the last day of February. On that day, patients and patient organizations will post stories, videos and blogs online and host events to raise awareness of these diseases, which are often called “orphans”.
This year, the observance has special significance in the U.S. because 1983 is also the 30th anniversary of the Orphan Drug Act, which provides incentives to encourage companies to develop treatments for rare diseases, and of NORD, which was established by patient advocates in 1983.
Rare Disease Day 2013 activities in the U.S. will include awareness events at several State Houses, a Rare Disease Research Hall of Fame, a Handprints Across America photo gallery, and an event at the National Institutes of Health (NIH) in Bethesda, MD.
In 1983, the Orphan Drug Act was passed by Congress to create financial incentives for companies to develop treatments for rare diseases. Since then, more than 400 orphan drugs and biologics have been approved by the Food and Drug Administration (FDA). It is estimated that approximately 15 million Americans benefit from these products, but that still leaves millions more with diseases for which there is no approved treatment.
The Cutaneous Lymphoma Foundation was represented at the oversubscribed and well-attended 2013 Blood Cancer Conference convened by the Leukemia and Lymphoma Society on January 26, 2013. Held at the Loews Hotel adjacent to the Dolby Theater and the iconic Grauman's Chinese Theater, over 600 patients and family caregivers attended a day-long program which featured some of the best leukemia and lymphoma specialists in the Los Angeles area including UCLA's Lauren Pinter-Brown, MD, one of the CLF's Medical Advisory Board members.
A CLF information table was staffed by CLF Board Director, Michael W. Young, who had a chance to interact with numerous patients and discuss cutaneous lymphomas, their impact on their daily lives, and some of the wonderful resources available at no cost through the Cutaneous Lymphoma Foundation and the LLS. The closing motivational talk was given by Bruce Hensel, MD, Chief Medical, Health, & Science Correspondent at KNBC- TV in Los Angeles.
The semi-annual meeting of the Regulatory Education and Action for Patients consortium was held in Washington, DC on January 17, 2013. The topics discussed focused on the current political landscape post-election and looking forward over the next two years along with the future of healthcare reform, improper payments in federal safety net programs (Medicare/Medicaid), an update on the patient focused drug development program in progress at the FDA and an update from the REAP workgroups.
Click here to read a recap of the January meeting highlights.
The REAP consortium currently has 53 member organizations across a wide variety of patient advocate groups, all coming together for a common cause - to promote the voice of patients to policy makers and regulators. This consortium began in 2010 with a few organizations and authored one collaborative comment letter to lawmakers, was signed by 6 organizations. By the end of 2012, the consortium had submitted 10 comment letters total, and the last comment letter was signed by 32 groups, including the CLF, who was also a member of the workgroup that developed the response. The comment letter outlined several detailed recommendations for clarity and transparency surrounding the proposed rule published by the Department of Health and Human Services (HHS) that helps consumers shop for and compare non-grandfathered private health insurance options in the individual and small group markets by promoting consistency across plans and protecting consumers by ensuring that plans cover a core package of items and services. Otherwise referred to as Essential Health Benefits.