LLS is on the frontlines of the battle against blood cancers, and we are alarmed by the stories that patients and their families are sharing with us about their struggles to access affordable, high-quality and stable care. Last year, our free Information Resource Center received more than 26,000 calls from patients and families – the majority included concerns about financial stress and difficulties accessing treatment.
It’s no secret that the cost of cancer care has been steadily rising and that patients are bearing more of the financial burden, paying increasingly larger portions out of their own pockets for their care. These rising costs are found in every element of cancer care, including hospitalizations, diagnostic testing, out-of-pocket expenses, co-pays and co-insurance, and the exponentially increasing prices of specialty drugs. This situation is quickly deteriorating for cancer patients and their families to the point that we at LLS can no longer just quietly advocate on behalf of the blood cancer community – we need to take bold action and call on all stakeholders in the cancer ecosystem to ensure that patients are not the only ones who are shouldering the rising cost of care.
In our view, patients should not be solely liable for the increasing cost of cancer care. In support of this view and to drive more action in finding solutions, today we are unveiling a new public position statement and policy recommendations around this topic, grounded in the principle that patients must have guaranteed access to high-quality, affordable and stable care.
We are calling on every player in the healthcare system – from patient organizations, drug, diagnostic and device manufacturers, to insurers and pharmacy benefit managers, healthcare providers, hospitals, state and federal governments – to put cancer patients first by enacting reforms and lowering overall costs and financial distress for them.
For our part, LLS is committing to a series of actions to increase transparency regarding our industry relationships, and we pledge to advocate forcefully for specific policies that guarantee access to stable and high-quality care. Among the specific steps we will take, LLS will publicly share the amount of funding we receive from industry partners on our website and in our Annual Report. We already list the professional affiliations of our volunteer National Board of Directors on our website, and will publicly share our policies related to conflicts of interest, industry sponsorship and donations and whistleblower protection. In addition, we have designed our co-pay assistance program, which is funded by industry partners, to avoid contributing to high prices or unnecessary utilization of high priced specialty drugs. We follow all best practices set forth by the Office of the Inspector General with the U.S. Department of Health and Human Services (HHS).
LLS is unapologetically a “patients first” organization. That’s why as we continue to invest in cutting-edge research to find better treatments and ultimately cures for blood cancers, we also must take steps to address the financial toxicity that adds to patients’ stress in fighting their disease.
Advances in cancer research seem to be occurring at dizzying speed these days.
In just the past three years, we’ve seen a plethora of new therapies approved to treat patients with chronic lymphocytic leukemia and multiple myeloma. And the rapidly advancing field of cancer immunotherapy has produced several novel approaches to treat cancer patients by activating their own immune systems to fight the cancer. Meanwhile, as we learn more about the underlying causes of cancer, scientists are becoming better at targeting the cancer-causing molecular mutations while sparing the healthy tissue, through a “precision medicine” approach to treatment.
But while it feels like these revolutionary changes are happening at warp speed the truth is, these advances in cancer treatment are the result of long-term investment in basic research and early clinical studies.
And for decades, The Leukemia & Lymphoma Society (LLS) has been leading the way, investing in research aimed at harnessing the immune system to fight cancer, a concept that seemed reasonable yet for years good results remained elusive.
Today, we are finally seeing that investment pay off. In just the past week, three innovative therapies, all advanced with significant LLS investment, have taken a step toward approval. Two companies, Novartis and Kite Pharma, both developing immunotherapies called CAR-T personalized cellular therapy, have submitted applications to the U.S. Food & Drug Administration (FDA) for approval. LLS has supported both of these.
The Novartis therapy, which is under review to treat children and young adults with relapsed or refractory acute lymphoblastic leukemia, originated in the lab led by Carl June, M.D. and his team at University of Pennsylvania and Children’s Hospital of Philadelphia. LLS has supported this work for two decades with a total investment of $21 million.
Kite Pharma has been LLS’s partner since 2015 through our Therapy Acceleration Program® (TAP), a strategic initiative to partner directly with biotechnology companies to accelerate cures, now in its 10th year. Kite’s submission to the FDA is for lymphoma patients who have relapsed or are resistant to previous therapies.
The CAR-T (chimeric antigen receptor) cellular therapies under review work by taking the patient’s own immune T cells from the body and reprogramming them so they are trained to find and kill the cancer cells. Outcomes for some of the patients treated this way have been truly remarkable. Some patients, who appeared to have run out of options for treatment, are now cancer-free three or four years after treatment.
LLS has also been leading the offensive against acute myeloid leukemia (AML), one of the most deadly blood cancers for which standard care has remained relatively unchanged over more than 40 years. We’ve launched the Beat AML Master Trial taking a precision medicine approach to identify the genetic subtypes of AML so patients can receive an appropriate targeted therapy for their cancer.
But we’ve been supporting other approaches to treat AML as well. One of these novel drugs, Vyxeos™ (formerly known as CPX-351) is a reformulation of standard therapy. It has performed well compared to standard therapy in a Phase 3 trial for older patients with secondary AML, a high-risk form of the disease. We've supported this research through our partnership with Celator Pharmaceuticals since 2009. In May 2016 Jazz Pharmaceuticals acquired Celator and this week finalized their submission to the FDA for approval.
Should any or all of these therapies attain approval, it will mark a significant achievement for LLS’s long-term commitment to supporting both basic and clinical research in our quest to accelerate the pace of drug discovery and development and bring life-saving therapies to patients faster.
LLS continues to support the next generation of this research, seeking to understand why some people respond these therapies while others don’t; whether these approaches can be applied to more cancers beyond blood cancers; and if more optimal combinations of therapies can lead to even better outcomes for more patients.
This is truly an exciting time in the field of blood cancer research and treatment!
More than 3,000 votes are in, and The Leukemia & Lymphoma Society has officially announced the winner for the 2017 Light The Night T-shirt contest. Congratulations to 49-year-old Greg Cunningham of Raleigh, North Carolina!
When the 30-year-veteran graphic designer heard his design would be featured on the T-shirts of thousands of Light The Night participants across the country, he was thrilled. “I can't tell you what a positive win this is for me emotionally, I am so proud to contribute to this incredible campaign and support LLS’s mission to cure blood cancer,” he said.
Greg was diagnosed with acute myeloid leukemia (AML) in 2014. He underwent a bone marrow transplant this past February, and is currently recovering in hospital housing at the University of North Carolina Hospital. While in recovery, he was determined to contribute his undeniable talents to the cause.
Greg provided us with some insight to the story behind his design, and triumphant journey.
Q. What inspired you to enter the Light The Night t-shirt contest?
Since my diagnosis, I have participated in two Light The Night walks with my friends and family, we call ourselves “Team Leukemia Beat Down.” Light The Night has always been a welcome distraction for the tough times that were ahead of me. As a graphic designer currently on disability leave, I wanted to make sure I kept my skills sharp. I hope to return to work this summer. I also felt the need to contribute to LLS beyond fundraising and this was a great way to do that.
Q. How did you come up with your design?
I looked at past designs and tried to bring the best elements in from the events I attended. Color and clarity were important, but I also wanted to make sure the creative elements were catchy. I liked that my three stylized lanterns could have different meanings to people. The font and the stars seemed to be celebratory and tie the design together. I am grateful to be a part of Light The Night in such an impactful way.
Q. Can we find Team Leukemia Beat Down at any Light The Night walks this year?
We signed up for this year’s walk in Cary, North Carolina on October 28. I certainly plan to be there.
Q. Any advice for others?
Keeping a sense of humor and staying positive has really helped me get through some of my darkest days.
Congratulations, Greg! Thank you to all who participated in the 2017 Light The Night T-shirt contest!
From left to right, Greg’s daughter Annie, Greg, Greg’s wife Susie and daughter Lynelle, holding a photograph from his co-workers, who thoughtfully grouped together in support with their own T-shirt design "Cunningham Strong”— designed in the color and typeface of his favorite football team, the Pittsburgh Steelers.