While advances in blood cancer therapies are having a dramatic impact on the way patients are treated, critical challenges remain.
At LLS, we work tirelessly to find cures, as well as to ensure patients have access to the lifesaving treatments they need. With more than 100,000 volunteer advocates across the country, we are making our voices heard on behalf of the 1.3 million blood cancer patients and survivors whom we serve. What’s more, many of the policies for which we advocate at the state and federal level are beneficial for all cancer patients.
LLS works with Congress, the U.S. Food and Drug Administration (FDA) and other federal agencies to promote new medical discoveries and speed the development of new treatments and cures. This year, key highlights of our work included:
LLS advocates sent more than 3,100 letters to members of Congress, raising their voices to make The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act a reality – the most comprehensive childhood cancer legislation ever introduced. After Congress unanimously passed this bill, the President signed the Childhood Cancer STAR Act into law in June. LLS actively supported this legislation, which will expand opportunities for childhood cancer research and survivorship programs and make a powerful impact on the lives of childhood cancer patients, survivors and their families.
LLS advocates sent more than 2,400 letters asking Congress to increase funding for critical cancer research at the National Institutes of Health (NIH). Thanks to this and other patient advocate groups’ efforts, Congress allocated $3 billion in new research funding, which will improve cancer patients' lives and bring us that much closer to cures.
Further, recognizing the importance of the Defense Department’s innovative cancer research program, LLS took the lead in asking Congress to make blood cancer research a priority within this program. Congress listened to our request, increasing funding for this cancer research program by $20 million—a 33 percent increase from last year—while also restoring “blood cancers” as a priority research focus in 2018.
We continue to be a strong voice for cancer patients at the FDA, shining a light on the urgent realities they face. As cancer treatment becomes more personalized, understanding which elements of a potential treatment are most important to patients is vital. We presented the results of our National Acute Myeloid Leukemia (AML) Patient Preference Study to leadership at the FDA’s Oncology Center of Excellence (OCE) to help inform the efforts of the FDA, pharmaceutical and biotech companies, and academic researchers to understand what really matters to patients as they pursue crucial drug development for AML.
Mark was diagnosed with acute lymphoblastic leukemia when he was just two months old. As an infant, he endured intense treatment through a clinical trial and countless trips to the intensive care unit. Today, Mark is a healthy college student who is passionate about giving back and exceling at West Chester University of Pennsylvania. He openly shares his story, and visits young patients and their families in the hospital. Both Mark and his mother Jayne also volunteer with LLS through the Eastern Pennsylvania Chapter. In 2015, Mark won the coveted Student of the Year title at the chapter after raising $62,000 for LLS in seven weeks. Most recently, in April 2018, Mark and Jayne attended the Alliance for Childhood Cancer Action Days in Washington D.C. to share the patient and caregiver perspective and advocate for important pediatric cancer issues before Congress, including the Childhood Cancer STAR Act. As a member of the Alliance for Childhood Cancer, LLS worked with Congress and community partners to advance this legislation – which was signed into law in May. The law will boost pediatric cancer research efforts, unlock new insights into childhood cancer through enhanced tracking and reporting and improve the quality of life for childhood cancer survivors like Mark.
While legislators debated proposals that would roll back access to meaningful health insurance coverage, LLS advocated strongly at the state and federal level for guaranteed access to stable, quality, affordable coverage. LLS advocates took action by contacting federal and state policymakers:
Cancer patients must have access to meaningful health insurance coverage. Their lives literally depend on it.
To this end, LLS advances solutions that uphold our core principles for meaningful coverage: guarantee access, promote affordability, ensure quality and encourage stability. This year, Congress and state policymakers debated proposals that would roll back access to meaningful health insurance coverage, including for low-income children and families enrolled in Medicaid. Throughout those debates, LLS advocated strongly at the state and federal level for guaranteed access to stable, quality, affordable coverage for the hundreds of thousands of blood cancer patients who would be impacted by these proposals.
At LLS, we believe health insurance plans should meet minimum quality standards so that patients will have access to the care they need. Unfortunately, many plans fail to meet those standards.
Consider Sam’s story. A small business owner, Sam attempted to upgrade his health insurance after seeing a chiropractor for undiagnosed back pain. He wanted to be able to better cover any potential medical care he might need. A few months later, he was diagnosed with cancer and immediately began treatment. Six months into treatment, his plan refused to cover any of these medical costs, saying that his cancer was a pre-existing condition. Sam was left to battle cancer with no meaningful insurance coverage and more than $800,000 in medical debt.
As the federal government worked to finalize rules expanding the availability of the very type of plan Sam held – plans that lack many critical protections required by the Affordable Care Act – LLS pushed back through a multifaceted effort. On this issue alone, we generated 3,202 grassroots letters to Congress and the Centers for Medicare & Medicaid Services (CMS). We also urged governors, state legislators and insurance commissioners to take action to protect patients from the impact of these junk plans. By engaging our partners and working with LLS advocates to share their stories, LLS helped bring a bill to the governor’s desk in Illinois to constrain these types of plans, establishing an important model for other states.
The rising cost of cancer care has reached a boiling point. In fact, about one-third of inquiries to LLS’s Information Specialists were from patients with financial issues and questions.
We believe every player in the healthcare system needs to take steps to address this dilemma by putting patients at the forefront.
In 2018, we did just that by continuing to advocate for policy reforms that could help lower overall costs and relieve patients’ financial distress. Over the past year, a number of such reforms have been implemented or are under serious consideration. For example, the FDA has sped up the review of generic drug applications, providing potentially less costly alternatives for patients. In addition, a new law passed in February will prevent Medicare Part D patients from paying more when they switch from an expensive branded biologic drug to a cheaper “biosimilar” version – a change that saves money for patients and taxpayers.
LLS worked with other advocacy organizations and stakeholders to support these and other changes, many of which were outlined in our 2017 recommendations to help reduce the cost of cancer care. While progress has been made, much work remains ahead to remove barriers to care for patients.
This year, state policymakers proposed unprecedented changes to Medicaid that would require Medicaid recipients to prove that they’re employed in order to receive coverage for their medical care.
It’s estimated that these proposals will result in thousands of low-income patients losing their only source of affordable healthcare. For that reason, LLS stood united with other patient advocates in opposition to these proposals in 13 states this year.
LLS took steps not only to defend access to Medicaid coverage, but we also joined forces with advocates in three states to expand eligibility for Medicaid. LLS believes strongly that all blood cancer patients should have access to affordable coverage for the treatment they need.
Learn how we are leading the conversation.
Sharon was diagnosed with myeloma in 2015. Her treatment included multiple courses of oral anti-cancer medication, countless injections, infusions, hospitalizations, a stem cell transplant and two spinal surgeries to repair cracked bones. She continues to be treated with oral anti-cancer therapy just to keep her cancer in remission. A one-month prescription with partial coverage costs her $2,000 out of pocket for the first several months of every year. At one point, Sharon had to stop taking her medications for two consecutive months because she simply did not have the money. As an LLS advocate, she has courageously shared her story with the U.S. Department of Health and Human Services and members of Congress. Sharon encourages anyone going through a cancer diagnosis to get involved with opportunities to tell their story. “Being able to share my story so that I can help and inspire others has been the most fulfilling and therapeutic treatment,” she says.
© 2018 The Leukemia & Lymphoma Society