As the voice for all blood cancer patients, The Leukemia & Lymphoma Society (LLS) establishes and grows meaningful relationships with policymakers
The Leukemia & Lymphoma Society is committed to removing barriers to care for blood cancer patients, and works with federal and state legislators to advocate for policies to ensure patients have access to quality, affordable care and treatments they need.
Here’s an inside look at how we cultivate these key connections:
Recently, members of LLS’s Texas Gulf Coast Chapter Board of Trustees and LLS volunteers from the Houston area met with Congressman Kevin Brady (R-TX-08) to share their stories, discuss their commitment to LLS and continue a conversation about policy solutions to address barriers many cancer patients face in accessing their treatments.
The Board of Trustees is an active group of professionals who volunteer their time to help LLS at the highest level. In addition to providing strategic guidance, financial oversight and fundraising support to chapters, trustees serve as local ambassadors to LLS, promote events in the area and help mobilize supporters in their communities.
Congressman Brady chairs the powerful House Ways and Means Committee, which oversees the Medicare program and a number of other healthcare areas. The discussion with Congressman Brady was the latest in a series of meetings and events in Houston and Washington, D.C. that have been instrumental in growing LLS’s relationships with influential policymakers like this.
Last June, LLS Chief Medical Officer Dr. Gwen Nichols had the opportunity to meet with Congressman Brady in his Capitol Hill office. The meeting covered a wide range of issues, from LLS’s efforts on the Beat AML® Master Clinical Trial to policy initiatives to address high out-of-pocket prescription costs for cancer patients in the Medicare Part D program. Dr. Nichols and Congressman Brady had a deeply substantive conversation about LLS’s work, and Congressman Brady expressed support for addressing the Medicare Part D issues we identified.
Following the June meeting, Congressman Brady joined the Texas Gulf Coast Chapter at the 2017 Montgomery County Light The Night Walk in October. Congressman Brady has participated in Light The Night for 15 years. As he addressed the crowd, he encouraged attendees to become advocates to help advance policy solutions for cancer patients.
The LLS Texas Gulf Coast Chapter was again able to build on its relationship with Congressman Brady by inviting him to a special gathering to of its Board of Trustees in February. While Congressman Brady was not able to attend in-person, a staff member from his district office joined and heard about each Trustee’s commitment to the LLS mission.
After the gathering of Trustees in February, Congressman Brady’s office reached out to LLS to schedule an in-person meeting in Houston. During the meeting, Congressman Brady heard directly from Trustees about investments LLS is making in research and community events that support LLS’s mission. He also heard from two leukemia survivors: one who currently participates in the Medicare Part D program and faces extremely high out-of-pocket costs to access her medication and another who is about to become Medicare eligible and is making healthcare decisions based on his anticipated out-of-pocket burden to access treatment. We also discussed policy opportunities to address the impact of rising out-of-pocket prescription costs on all cancer patients.
Congressman Brady has now seen LLS from all sides. He has spoken with LLS’s research experts, met twice with LLS local leaders in his home state, heard directly from patients about their barriers to treatment and participated in a hallmark LLS event in his hometown. By providing a clear picture of all the facets of LLS and our mission, we help ensure that policymakers like Congressman Brady understand what matters most to blood cancer patients and their families and make a true difference for all of those who are impacted by cancer. Our work with Congressman Brady will only grow from here as we continue to support policies that advance cancer research and break down barriers that affect patients’ ability to access their treatments.
With National Volunteer Week approaching (Sunday, 4/15 – Saturday, 4/21), learn how you can raise your voice to help by clicking here.Remember, there are countless ways to help us change the landscape of cancer.
One major factor is the significant gender inequity that exists in the recruitment, promotion and retention of female faculty and staff scientists
In the 1980s when I was a medical resident at the University of Chicago, I was among the largest class of females the program ever had. My female peers and I faced many challenges, including overcrowded on-call rooms. They simply weren’t ready yet. But, we were.
Thirty years later, it’s quite different. Today, women make up 50 percent of medical school applicants. But, the paradox is this: while women are pursuing science, they are not attaining the highest levels of leadership at the same pace as men.
As part of our efforts at The Leukemia & Lymphoma Society (LLS) to encourage more females to join the ranks of cancer researchers and physicians, we commissioned a survey of 1,000 Americans to learn their views of women’s role in cancer research.
The consensus was clear: we need to elevate women in the sciences. For example, eight in 10 adults polled believe women are critical to science discoveries, and seven in 10 adults believe more women should have leadership roles in science. As well, nearly 70 percent of American men and women surveyed, and 80 percent of women polled, believe the time is now for women to break the glass ceiling in science.
At LLS, we fund leading women scientists who are assuming pivotal roles in advances that are dramatically improving outcomes for patients with blood cancers. These women have shared firsthand perspectives on the challenges they have faced as women in science.
One of these leading female scientists is Ann Mullally, an assistant professor of medicine at Harvard Medical School. Mullally leads a research laboratory at Brigham and Women’s Hospital, where her team investigates the biology and treatment of blood cancers. When asked about obstacles women face in science she says: “I think unconscious bias is an issue in a field where there is substantial gender disparity at the top, and that group holds decision-making power.”
“In academic medicine, significant gender inequity exists in the recruitment, promotion and retention of female faculty despite the fact that roughly equal numbers of men and women have been entering medical school for well over a decade now, so clearly obstacles exist,” says Mullally.
Molecular biologist Xiaolan Zhao leads a laboratory team at the prestigious Memorial Sloan Kettering Cancer Center. Her team studies chromosomal replication and repair to better understand the causes of cancer.
She says that a major challenge is that the male-dominated field can be unfavorable for women to be promoted.
Her solution? “We have to do more to actively promote women's roles in science, such as including them in leadership positions, giving them opportunities for seminars and talks at conferences, and providing more community support.”
Another challenge faced by women in science is that they often reach their peak biological time for having children at the same time they finish training and starting their careers. While this is changing now, my experience was that colleagues did not take you as seriously if you also wanted to have a family life.
“Trying to create and sustain a rich personal and family life while building one’s career is a struggle that I believe we all face,” says Wendy Stock, a professor of medicine at the University of Chicago, and an authority on leukemia and myelodysplastic syndromes. “The world is now a bit more forgiving with more support for maternity leave, child-care options than when I was training but it's still a tremendous challenge to keep life in balance.”
Work-life balance is a science in itself. Both women and men stand to gain from finding that balance. Having more women in leadership roles may help make that a reality.
We at LLS aspire to put women scientists on a level playing field with their male counterparts. Through our range of research grant programs, including Career Development Awards for researchers at different stages of their careers, we help diversify medical research and support scientists to accelerate discoveries from the lab to clinical trials. We will continue to invest in women in science as diversity in medical research is critical for innovation.
The U.S. Food & Drug Administration today announced the first change in 40 years in the standard way that patients newly diagnosed with advanced Hodgkin lymphoma (HL) should be treated.
Today’s FDA approval of brentuximab vedotin (Adcetris®) in combination with chemotherapy to treat Stage 3 and Stage 4 HL patients who are newly diagnosed and have received no prior treatment, is significant for a patient population that has seen no change in the standard of care in more than four decades.
Before today’s decision, the standard care for newly diagnosed HL patients with advanced disease was a combination of four chemotherapy drugs: adriamycin, vinblastine, dacarbazine and bleomycin. The new regimen removes bleomycin from the mix, due to its intense toxicity, and replaces it with brentuximab vedotin, a therapy in a class of medicines known as antibody-drug conjugates: the antibody, which helps the drug home in on its target on the surface of HL cancer cells, is attached to a toxin that attacks and kills the cancer cells. The other three chemotherapy drugs remain in the approved regimen.
More than 8,500 people in the United States are diagnosed with Hodgkin lymphoma each year, and about half of these are diagnosed with Stage 3 or 4, meaning they are in advanced stages of the disease. HL represents approximately 10 percent of all lymphoma cases diagnosed each year, and is characterized by a specific malignant cell called the Reed-Sternberg cell. HL is considered very treatable, even curable, but the standard chemotherapy regimen causes very serious and sometimes harmful side effects. And approximately 30% of patients with advanced stage at diagnosis relapse after treatment, representing a critical need for better options.
Brentuximab vedotin (Adcetris) was first FDA approved in 2011 for patients who had relapsed after failing two prior treatments or had undergone a stem cell transplantation procedure but, until now, was not approved as a first-line treatment.
The approval is based on a clinical trial that showed the combination to be superior to standard care. The results, presented at the 2017 American Society of Hematology annual meeting in December, showed that patients treated with brentuximab vedotin plus AVD were 23 percent less likely to experience progression of their disease or death as compared to the standard care with just the chemo combination alone.
LLS has supported seminal work in antibody drug conjugates, opening the door to this approach for treating cancers.