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The Leukemia Lymphoma Society Blog

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For nearly 65 years, The Leukemia & Lymphoma Society has been helping blood cancer patients, and in three weeks, our three-day conference in Washington D.C. will afford us an opportunity to show how we are leading the way to a world without blood cancers.


LLS is celebrating a momentous milestone: Since our inception we have invested more than $1 billion in research to find cures and ensure access to therapies for all blood cancer patients.


Bringing this conference to our nation’s Capital will provide LLS an opportunity to communicate our role as a global leader in cancer research, and highlight to a broad audience how that $1 billion investment is changing lives, today.


Equally important, this gathering is an opportunity to engage volunteers in our mission. Like all nonprofits, LLS relies on the energy, compassion and enthusiasm of our volunteers. Throughout the three days we will be immersing them in all aspects of our cures and access mission. Our advocacy day enables us to impact the public policy discussion on Federal legislative and regulatory issues that affect our patients.


The Road to Cures

Monday, May 5, will be a day devoted to our research initiatives. LLS-funded researchers will speak about “omics” - the application of advanced technology to identify cancer-causing mutations, what causes a premalignant condition to transform into cancer, and the role of the tumor microenvironment in the progression of cancer. The closer we come to understanding the mechanisms that cause cancer, the closer we come to cures.


A provocative panel discussion will follow, including researchers, physicians, parents of pediatric cancer patients and a leader from FDA. The topic: “What is a Cure,” will attempt to answer questions like these: What defines a cure? Are we there yet? Is chronic treatment good enough?


Tuesday, May 6, our Volunteer Leadership Day is designed to train our volunteers to be more effective fundraisers. The volunteers who attend this conference will return to their local chapters inspired, informed and more engaged than ever. In addition to workshops, the day will feature inspirational special guests, including survivors and family members, celebrities, and members of Congress from both sides of the aisle. Suleika Joauad, acute myeloid leukemia survivor and The New York Times Well blogger, and Ethan Zohn, Hodgkin lymphoma survivor from CBS’s “Survivor,” will be among the speakers.


Bringing our Message to the Hill

We conclude our Washington conference on Wednesday, May 7, with Advocacy Day: “Leading the Charge for Cures and Access.” More than 500 advocates from around the U.S. will storm the Hill to deliver a message to their legislators about LLS’s access agenda and how it impacts the patients we serve. Our volunteers will be lobbying for two bills to improve access to innovative therapies for patients. Both bills limit the use of "specialty tier" drug designations, thereby increasing affordability of treatments for patients.


Supporters and LLS Colleagues are being asked to sign our petition, which asks legislators to support these proposed bills, and you can do so now by visiting www.lls.org/accessnow.


Help Us Declare It!

To amplify our message we are installing a giant “Declare It!” wall, to engage visitors in our movement. Pieces of the wall will be stationed in high-traffic locations throughout Washington D.C. with visitors asked to declare their support by affixing “Cancer Ends with Me” stickers on the wall and to sign our petition. The wall experience will culminate with all of the pieces coming together at Union Station for a finale celebration of LLS’s impact on saving patients’ lives, featuring a performance by actor/singer Charles Esten, whose daughter is a leukemia survivor. When sharing the experience via social media, we’re asking participants to use the hashtag:  #ideclare4LLS.


Bringing this meeting to our nation’s capital provides an opportunity to garner positive attention for our mission and the work our staff and volunteers do, day in and day out, to advocate for patients. We are at a critical crossroads, poised to bring more life-saving therapies to patients, and it will take sustained effort on the part of our volunteers, supporters and staff to help us get there.

LLS applauds Wisconsin as the latest state to join the trend of passing legislation to level the playing field for cancer patients who take their medications orally with those who receive their chemotherapy intravenously.

Jim Logan and Gov  Walker.jpg


On Tuesday, the Wisconsin State Senate passed the “Cancer Treatment Fairness Act”   by a vote of 26 to 7. Gov. Scott Walker signed the bill into law on Thursday before a crowd of advocates, including LLS volunteers and staff, who played key roles in helping to raise awareness about the importance of this law.  Wisconsin becomes the 30th state to pass oral parity legislation which requires insurers to charge patients equal out-of-pocket costs regardless of whether they receive their treatment in a medical provider’s office or whether they take a pill that they get from the pharmacy.  The Wisconsin bill also allows insurers to comply with the law by capping patient costs to $100 per 30 day supply of their treatment. In signing the bill Thursday Governor Walker said “it’s a win all the way around."


The tremendous advocacy to get this bill passed began in 2010 and has benefited from the non-stop effort of a number of LLS staff and volunteers, including Wisconsin Board Chairman Paul Westrick, MidWest Regional Mission Director Ann Marie Frakes, Field Advocacy and Outreach Manager Christina Lee, Director of State Government Affairs in the MidWest, Dee George, and Senior Director of State Government Affairs Lisa Nelson.


The following Fox 6 News segment features Jennifer Grandkoski, a leukemia survivor and  LLS campaign director in the Wisconsin Chapter, who paid very high costs to get access to her oral anti-cancer medication. Click here to view the segment.


(Photo: Jim Logan, LLS advocate, right, and Wisconsin Gov. Scott Walker, left; LLS volunteer Dr. Mary Horowitz, left, and Senate Bill author Senator Alberta Darling, right, look on)

Dr  Lou Brianna Logan  Tyler.jpgThe impact of the LLS mission and the work many people are doing to help us succeed were on display at the 27th annual Leukemia Ball in Washington, D.C., on March 22.  The event, with two thousand guests in attendance, raised $3 million for LLS’s National Capital Area chapter and our goal of cures and access to treatments for all patients.


The key, emotional moment of the evening came during the Mission Moment.   I had the honor of being on stage with three young survivors, living proof that research, including LLS funded programs, is having an impact and saving lives, and that the future is promising.  But we were also reminded of how far we have to go and why we were all there that evening.  An empty stool was on stage to represent a child research has not yet been able to save.  


Another highlight of the evening was the presentation of The James L. Eichberg Lifetime Achievement Award to NFL Hall of Fame member and Washington Redskins great Bobby Mitchell in recognition of his dedication to LLS’s mission and overall support of the Washington, D.C. community.  For more than two decades, Mitchell hosted The Bobby Mitchell Hall of Fame Golf Classic, which brought together NFL and NBA Hall of Famers and raised nearly $8 million in the fight against blood cancer.  The James L. Eichberg Lifetime Achievement Award was established in 2011 in memory of Jim Eichberg, a longtime volunteer and supporter of LLS.


The Leukemia Ball is one of Washington, D.C.’s largest non-political black-tie events each year and over the last 27 years the Leukemia Ball has raised more than $47 million to support LLS’s mission.


Editor’s Note:  Washington Business Journal caught up with Dr. Lou at the ball and interviewed him about LLS’s mission. You can read the story here.

LLS continues to be a key source for top-tier media outlets reporting on the challenge faced by people who need specialty-tier prescription drugs from plans they’ve purchased in the healthcare exchanges.  On Sunday, March 30, the Los Angeles Times published an article, “Health Plan Tips for Patients Relying on Specialty Medication” and quoted Lisa Nelson, LLS senior director of state government affairs.  The article provides an overview of the issues, including plans which don’t cover specialty-tier prescription drugs or plans that impose high out-of-pocket costs for those medications, and recommendations on how patients can potentially minimize the impact.


Top tier media continue to turn to LLS's  access and policy team for their expertise on issues cancer patients face as they navigate the health insurance exchanges under the Affordable Care Act. In this Associated Press article that ran over the weekend,  Brian Rosen, LLS senior vice president of policy, is quoted discussing the findings of our Milliman report, which looks at exchages in seven states, and the impact that high cost-sharing for specialty tier drugs could have on patients’ out of pocket costs.

ap drugs.jpg

chronicle phil.jpgThe Leukemia & Lymphoma Society is prominently featured in an article in this week's issue of The Chronicle of Philanthropy. The article, entitled "From Billboards to Bus Shelters to Email, Charities Try One Message," is about how nonprofits are using different communications channels, both traditional and digital, to integrate their message to reach different audiences. Images from LLS's Someday is Today branding platform, are displayed in the article, and Lisa Stockmon, LLS's chief marketing officer, discusses how the Someday is Today campaign is helping to raise awareness about the impact we're having on the blood cancer landscap,e and is quoted on how the campaign is pulled through to our various communications channels, both nationally and throughout the field: "We want to make sure there's complete intregration between what's happeing at the national level and what's happening at the chapter level."

This is another installment of our CML blog series


By Anna


I was diagnosed with CML in August 2009 at the age of 24. The diagnosis was very random; I was not feeling any symptoms and lead a very active life. It was just supposed to be a regular checkup but after doing a blood test, I received a phone call the next day urgently referring me to a hematologist because it looked like I had leukemia. I was in complete disbelief. There must be some kind of a mistake. I had a week until I was to see the specialist to confirm my diagnosis and I didn’t know what to do with myself. Of course the first thing I did was Google “leukemia” and after I read a few articles, panic set in.


When I finally saw the specialist and he told me that what I have is CML, my immediate reaction was relief. All I have to do is take this pill once a day and I will be just fine? No Chemotherapy, no hair loss. I felt like I dodged a bullet.


After the initial relief faded, I began to feel anxiety. What if the pill doesn’t work for me? What if it stops working after a month? A year? What if there are no other options? Will I have to look for a bone marrow match? These thoughts would fill my days and nights. I couldn’t foresee my life in the next 1, 5 or 10 years and I felt completely out of control of my body.


In the early days of my diagnosis and treatment of CML, it was very difficult to carry on the life of a regular 24 year old. I found that I could no longer relate to my friends. Their priorities and reasons for being angry or stressed out were on a completely different scale than mine. I couldn’t be their shoulder to cry on after a fight with a boyfriend because their problems just seemed insignificant compared to what I was going through. I realized that I was distancing myself from them and I didn’t know if my relationships with them were going to be the same again. Going out and partying on Friday nights, just like we always did, was impossible. I didn’t want to put any toxins into my body so I stopped drinking completely. I would find myself completely sober in a room full of rowdy, obnoxious people without a care in the world and often escaped to the bathroom to cry from frustration. Since I wasn’t going through chemo and led a relatively normal life, my friends would often forget about my disease and treat me just like everyone else. They were unaware of what was happening on the inside and could not relate to my fears.


As a young woman who was starting treatment for CML, I had to also consider my future. Since I was not allowed to become pregnant while being on my medication, I had to make sure that I left myself options if I wanted a family later in life. My doctor advised me to freeze my eggs before starting the treatment - a process no 20 year old should have to consider especially 2 days after hearing a cancer diagnosis. It was a grueling and exhausting process that I dreaded while all I wanted to do was get on top of my cancer treatment. However, in hindsight, I am extremely happy I did it and would insist every young individual considers it before starting any treatment.


It was only after a full year into my treatment that I began to put CML out of my head. I am very thankful that medication has been very effective for me with very little side effects. I am a very active person and CML has not changed that one bit. I am able to laugh and joke around with my friends once again and there are many days when I don't think about my CML at all.

In 2 months I will be marrying my best friend, the same person who was my rock throughout the entire diagnosis and treatment and I am very excited that I can start a new chapter of my life. However, with this new chapter comes a new challenge. My fiancé and I feel very strongly about having a family with multiple children and my current medication does not make this possible. In the next couple of years, we will be exploring the options that are available to us and the grueling procedure at the fertility clinic which seemed irrelevant 5 years ago is looking like a great option today.


Every day I realize how lucky I am to be living in this era and in this part of the world where medication is easily accessible and effective. I think about patients who are battling aggressive cancers today as well as those who were defeated by CML 20 years ago and whenever I feel like life is unfair, I think back to myself 5 years ago when my life was saved.


If you have a story that you would like to share and post on our CML blog, please email cmlblog@lls.org with your name and a short description of your experience.


Our Access Team staff and volunteers in the Maryland chapter can celebrate a  big win  this month.


LLS led the effort to fix an oral parity bill which originally passed in 2012.  As we reported on many previous occasions, oral parity legislation ensures that insurance companies can’t charge exorbitant out of pocket fees to patients who take anti-cancer medications orally as compared to those who are treated intravenously.


The original Maryland bill exempted most small group and individual market plans, thereby regulating only a tiny slice of the Maryland market. Mid-Atlantic State Government Affairs Director John Gibson and Patient Access Director Tracy Orwig worked tirelessly  to get this  bill fixed with the support of a broad coalition. This week the bill, which Gibson was able to get emergency status for, passed both houses of the legislature.  We anticipate the Governor will sign the bill into law soon. This change in the law will impact all state regulated insurance plans starting January 1, 2015,  including  all the plans in the Maryland Health Exchange.


(photos: top: John Gibson, MId-Atlantic state government affairs director; bottom: Tracy Orwig, patient access director)

MO - House Author Rep Solon  LLS Board Chair Gateway Chapter JoAnn Shaw receiving resolution during Mission Day 2-5-14.jpgToday Missouri Gov. Jay Nixon signed into a law a bill that prohibits insurance companies from imposing significantly higher cost-sharing for cancer patients who take their anticancer medications orally as compared to those patients who receive their treatments intravenously in a clinical setting. The new law limits out of pocket costs to $75 for a thirty day supply of anti-cancer pills. The effective date of the new law is January 2015. The $75 cap could increase annually, but wouldn't be able to rise above the consumer price index in a given year. LLS advocacy staff and volunteers worked hard to persuade legislators to approve this law. The state Senate unanimously passed the bill on Feb. 20, and the House passed the bill on March 5, sending it to the Governor’s desk for his signature.


On Feb.5, four-time cancer survivor and LLS’s Gateway Chapter Board Chair Jo Ann Shaw was presented with a House resolution recognizing LLS’s efforts on behalf of blood cancer patients. The resolution was presented by Sen. Sheila Solon, who was the author of the bill.  Both the Gateway and MidAmerica chapters of LLS were active in urging passage of the bill. On Feb. 28, Gateway Executive Director Debbie Kersting, was quoted in an editorial about the issue in the St. Louis Post-Dispatch, which can be viewed here.


(photo: Sen. Sheila Solon presents resolution to LLS Gateway Chapter Board Chair Jo Ann Shaw recognizing LLS's efforts on behalf of blood cancer patients)

Rick Winneker World Affairs Council photo.jpg

Richard Winneker, LLS senior vice president of research, addressed the urgent need to find cures for blood cancer patients during a conference titled “In Sickness and In Health” hosted by the World Affairs Council of Philadelphia on March 12 at Thomas Jefferson University in Philadelphia. 


The conference addressed several important issues regarding the American healthcare system, including critical barriers to accelerating biomedical research into therapies, and challenged stakeholders to find greater return on the significant investment in biomedical research. Winneker spoke during a lively panel session titled “Why Can’t We Cure More Things?”


“For LLS, our research agenda is focused on finding cures because there are few if any means of preventing or early screening for blood cancers. LLS is also addressing the regulatory barriers facing the clinical trial process for promising therapeutic approaches,” Winneker said. “How do we appropriately reward those who take enormous risks investing in basic, translational and clinical research? How do we maintain a sense of urgency and achieve progress? LLS is addressing these fundamental concerns through our research grants and Therapy Acceleration Program, which forges both preclinical and clinical development partnerships with academia and industry to get treatments to blood cancer patients faster than ever – especially for patients who lack live-saving treatment options.”


Winneker was joined on the panel by John McKew, Ph.D., acting scientific director of the National Center for Advancing Translational Sciences, and panel moderator Craig Snyder, president and CEO of the World Affairs Council of Philadelphia. The panel engaged conference participants in debating a range of potential approaches to improve the clinical applicability of medical research and better bridge “the valley of death” that prevents basic biomedical research discoveries from advancing to effective treatments for patients. The panel also discussed ways to move research beyond treatments and into cures and prevention.


Attended by 500 leaders from academia, industry, government agencies and nonprofit organizations, the conference also featured a keynote panel discussion which included former Senate Majority Leader Bill Frist and Ezekiel Emanuel, M.D., Ph.D., chairman of the department of medical ethics and health policy, University of Pennsylvania. The conference was part of the council’s “Great Debates” series.


We welcome you to our third in a series of patient stories that will appear periodically in the LLS blog. We hope you find these stories as moving and inspirational as we do.


Please meet Ashlee Jensen.

In February 2013, Ashlee was diagnosed with stage 3 non-Hodgkin lymphoma.  At age 19, the odds in receiving such a diagnosis was one in three million.


Just a few months prior, Ashlee was unusually fatigued and noticed lumps in her neck. As time passed, she started feeling itchy and irritated, and attributed the change to the weather. But when the lumps in her neck spread and increased in size her dad insisted Ashlee call the doctor.


After a misdiagnosis of mononucleosis and strep throat, she visited an ear, nose and throat specialist. And upon seeing hundreds of swollen lymph nodes in her neck, the doctor referred Ashlee to Cancer Care Northwest in Spokane, Washington. At the Fred Hutchinson Cancer Research Center in Seattle, Ashlee was now being treated for what is one of the rarest cancers for someone her age.


Regardless of losing her hair, her job and not being able to attend school, Ashlee was willing to do whatever it took to get rid of the cancer. After enduring chemotherapy every three weeks, three times a day for six months, her cancer showed no sign of remission. As a precaution however, her doctors collected and froze her stem cells with the possibility of using them as part of a future therapy.


A quick update from Ashlee: “It has been crazy crazy! My cancer is progressing and not responding to treatments! I will once again be starting a new chemotherapy regimen because in order to be a candidate for a bone marrow transplant, I need to be in a slight remission. I’m just hoping something will work for me.”

“I began to appreciate every moment I had and wouldn’t change my life for anything. Fighting to get better has just become a part of me now. I still want to be the young teen I’m supposed to be”, says Ashlee.

Be sure to follow her journey on her Facebook page Ashlee Jensen Kickin’ Cancer.


If you or a loved one is diagnosed with a blood cancer, please contact our Information Resource Center at 1-800-955-4572.

In July we told you about the Gabriella Miller Kids First Research Act, which would increase funding for pediatric medicagabriella_miller_make_a_wish_296.jpgl research administered through the Common Fund of the National Institutes of Health (NIH). LLS played a key role in advocating on behalf of this important piece of legislation and we are pleased to share that it was unanimously approved yesterday by the Senate. It had been approved by the House of Representatives in December. It will now head to President Obama for his signature. The bill is named for a 10-year-old girl from Virginia who died of a brain tumor in 2013. It will provide critical funding for research projects for pediatric cancer, autism and other diseases impacting children. The program ends the President Election Campaign Fund, which funds political conventions, and redirects the funds to expand research in those areas.

The bill was sponsored in the House by Congressmen Gregg Harper (R-MS), Peter Welch (D-VT), and Tom Cole (R-OK), and in the Senate by Senators Tim Kaine (D-VA), Mark Warner (D-VA) and Orrin Hatch (R-UT). House Majority Leader Eric Cantor (R-VA) had also been a strong proponent of this bill.


(photo: Gabriella Miller, for whom the Kids First Research Act was named. Credit: Associated Press)


On March 10, the Centers for Medicare and Medicaid Services (CMS) announced a decision  to withdraw its proposal to remove the protected class status for certain classes of drugs including immunosuppressants, antidepressants, and antipsychotics. This is a major win for blood cancer patients enrolled in the Medicare program who will now continue to have access to all immunosuppressive drugs under their Medicare part D plan.


The Leukemia & Lymphoma Society Office of Public Policy staff weighed in with CMS opposing these proposed changes in formal comments submitted to the agency; and met with White House and Congressional staff to educate them on the impact that this proposal would have on blood cancer patients. LLS’s involvement in this issue was also recently profiled in The New York Times.

andyGordon cropped.jpgFor patients diagnosed with multiple myeloma, the future is more promising than ever.  Survival has more than tripled in the last 40 years. That’s due, in large part, to therapies that have emerged in the past decade, including those LLS funding has helped advance: Velcade ®, Kyprolis ®, Thalimid®, Revlimid®, and Pomalyst®.


March is Myeloma Awareness Month, providing an opportunity to shine a spotlight on the many advances in treatments for multiple myeloma and the urgent need for continued research.

LLS has a strong commitment to advancing therapies for myeloma. Last year alone, LLS committed $9.7 million to myeloma research, funding 24 grants and four Therapy Acceleration Program (TAP) projects. Since 2008, LLS has invested more than $32 million to fund myeloma research.


LLS’s myeloma funding supports scientific research from understanding the disease mechanisms to discovering novel potential therapies and supporting clinical.   Two of our largest grants under our Specialized Centers of Research (SCOR) program are currently focused on myeloma research. TAP supports a team of researchers at Johns Hopkins conducting a Phase 2 clinical trial testing a novel immunotherapy approach using specially trained immune T cells to track and kill myeloma cells, and a small biotechnology company in Boston developing a novel drug to treat myeloma.


In addition to supporting research, LLS is committed to providing free information and support services to patients and their families. The Information Resource Center provides access to information specialists who can assist patients with financial and social challenges and give accurate, up-to-date disease and treatment information. LLS also offers family support groups, online chats and free information publications and education programs, including monthly enewsletters with the latest news, research updates, clinical trials and events sponsored by LLS.


Our goal is a world without blood cancers – including multiple myeloma!


To see the impact of the work we've done to help patients with myeloma, watch this inspiring video. Click here to view.


Help LLS raise awareness druing this month. Visit our Facebook page, where we will be using Myeloma Mondays to highlight facts about this disease and how you can help bring myeloma to an end.



(photo, Andy, myeloma survivor)






Reuters reported today on high out- of-pocket costs being faced by patients in some health care exchanges under the Affordable Care Act. LLS’s Senior Vice President of Public Policy Brian Rosen is quoted in the article discussing the findings of a study LLS commissioned from Milliman examining insurance plans offered by exchanges in four states. A leukemia patient connected to LLS’s Mississippi/Louisiana chapter is also quoted in the article.


The article, “Chronically ill facing high drugs costs under U.S. health law,” can be viewed by clicking this link.

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