Join Ola Ojewumi, a patient and health advocate with Post-Transplant Lymphoproliferative Disorder (PTLD), who shares the difficulties she has faced as a Black disabled woman with chronic pain, including her experiences with racism and inequities in healthcare and how she has learned to advocate for herself and others.
430,000 people – it’s a huge number. It’s the population of Minneapolis. Nine straight days of sell-out crowds at Yankee Stadium. Nearly the entire enrollment of the Southeastern Conference. And it’s the number of people who, in the last six weeks, have become newly eligible for Medicaid, thanks to successful ballot initiatives this summer in Oklahoma and Missouri. LLS, our staff, and our volunteers are proud to have played a role in this major win for patients. Those victories cou...
As an LLS Clinical Trial Nurse Navigator, Ashley Giacobbi works tirelessly to connect the right patient with the right clinical trial – work that has become increasingly complicated in the COVID-19 era. But recently, she went the extra mile to ensure a patient – a young healthcare worker whose AML had relapsed several times – could access a trial that offered a promising treatment option. The patient had reached out to LLS seeking a trial back in May. Giacobbi identified about 15 ...
Amanda Steffy of Pasadena, Calif. is one of The Leukemia & Lymphoma Society’s most passionate policy advocates. She frequently travels to Washington, D.C. to speak with lawmakers about the importance of high-quality, affordable healthcare for cancer patients. In California, where she works as an instrument systems engineer for NASA JPL, she recruits and teaches others to do the same. This May, Steffy joins LLS for its first-ever virtual advocacy event. In this interview, Steffy expla...
They came from California, Colorado and Arizona, North Dakota, New Hampshire, Texas, Louisiana and Minnesota, each with their own story to tell. In all, 36 volunteers representing 25 states came to Washington D.C. this week to learn how to effectively use their stories to advocate for policies to protect blood cancer patients’ access to treatment and care. For three days these patients, survivors and caregivers took part in a training session with the dedicated policy and advocacy staff...
As Vice President of LLS’s Office of Public Policy, Bernadette O’Donoghue leads strategic public policy development at the federal and state levels, providing input from patients to help improve access to care and accelerate cures. This week was a monumental victory for cancer patients. The 21st Century Cures Act, which will significantly speed access to new lifesaving therapies, was signed into a law. Now, cancer patients, survivors and their families are closer to improved diagnosti...
Wanting to make sure the patient voice is heard when it comes to the development of new therapies, The Leukemia & Lymphoma Society (LLS) recently brought a delegation to Washington D.C. to share personal experiences with the U.S. Food & Drug Administration (FDA). Plans for a research study to learn what patients and caregivers are looking for in new treatments were also presented. LLS’s Office of Public Policy knows the importance of pushing for new drug development, but you can...
The Leukemia & Lymphoma Society recently brought together a world-renowned panel of thought leaders to discuss the latest advances and insights into blood cancer research and treatment, drug costs and patient access, and patient advocacy and policy. “There’s never a good time to get cancer but this is a phenomenal time to be fighting it,” said Louis J. DeGennaro, president and CEO of The Leukemia & Lymphoma Society (LLS).
Click here for a comprehensive media toolkit. New York – February 25, 2016 – A panel of world renowned thought leaders from research, clinical practice, policymaking, pharmaceutical industry and patient advocacy convened today to discuss and debate the latest advances and insights into blood cancer research and treatment, drug costs and patient access, and patient advocacy and policy. The roundtable was organized by The Leukemia & Lymphoma Society (LLS), the world's largest volunta...
Congress has approved a $2 billion increase in funding for the National Institutes of Health. The 6.6 percent hike -- to $32.1 billion -- is the largest increase in 12 years and it will make an enormous difference in supporting cancer research in the years ahead. The bill includes a $264 million increase in funding for the National Cancer Institute (boosting NCI funding for the year to $5.2 billion – a 5.3% increase) as well as $200 million in funding for a precision medicine initiative ...
The Leukemia & Lymphoma Society (LLS) continually advocates for laws and policies to ensure that patients have access to lifesaving treatments. Our latest win came this summer when the U.S. House of Representatives approved the 21st Century Cures Act. This bill, which is proof of LLS’s impact and would make a big difference for blood cancer patients, is now on Congress’ “to do” list. The House of Representatives finished its work on the 21st Century Cures Act in July, levera...
