At age 39, Jody was working full time, volunteering, and raising four children, when her life was suddenly interrupted.
In January 2009, she landed in the hospital with a diagnosis of Philadelphia chromosome positive acute lymphoblastic leukemia. It was the start of a long journey through many hospital rooms. Five months after her diagnosis, Jody had a bone marrow transplant and went into remission. In 2011, the leukemia was back. Despite a poor prognosis, Jody again beat the odds through a successful stem cell transplant.
Today, she is still in remission. For the rest of her life, Jody needs to take a daily oral pill called dasatinib, a targeted therapy advanced with LLS support that works by inhibiting the mutation that causes cancer cells to proliferate. When she went to pick up her first dose at the pharmacy, Jody was shocked to learn how much that life-saving drug would cost her: $5,640 for the first month alone.
It was not long before Jody’s medical bills ate through her family’s savings. Everything that she and her husband had put away for their children’s college educations went to pay for the treatments and medications keeping Jody alive. The payments soon added up to more than $60,000 in out-of-pocket expenses.
Unfortunately, these high out-of-pocket costs are all too familiar for cancer patients. For the last several years, health plans have been shifting a greater portion of the cost of care onto patients, like Jody. This is done through a combination of cost-sharing techniques, including:
Deductibles: The amount that a consumer must pay upfront before his or her health plan will begin to cover the cost of care.
Coinsurance: As in Jody’s case, coinsurance requires a patient to cover a percentage of the total cost of a benefit or service instead of paying a flat co-pay.
Especially for patients who rely on specialty medications, these cost-sharing techniques can result in out-of-pocket costs that run into thousands of dollars in just a single month. This nearly eliminates access to care for the many patients whose families simply cannot afford such high costs.
Through its nationwide grassroots network of more than 100,000 volunteer advocates, The Leukemia & Lymphoma Society (LLS) is working to change that by advocating for policies at the state and federal level to limit out-of-pocket costs for patients.
Patients could benefit greatly if cost-sharing for medications was limited to more reasonable amounts. According to an analysis commissioned by LLS in 2015, health plans could adopt such limits with little-to-no impact to premiums. The analysis was developed by Milliman, a consulting company with expertise in insurance coverage.
LLS recently commissioned a follow-up analysis from Milliman to understand how these cost-sharing limits would affect premiums under current marketplace trends. For this report, Milliman based the analysis on a silver plan, since this plan type is popular among consumers.
As a specific cost-sharing limit, Milliman tested a pre-deductible limit of $150 for a one-month supply of any prescription drug. In this case, pre-deductible means that a patient would not have to meet a deductible before the $150 limit would apply at the pharmacy counter.
The findings? Looking out over a three-year period, the latest analysis projects a monthly premium increase of less than 1% each year. Furthermore, that impact could be reduced to less than 0.5% if a plan were to make small (for example, $1 to $5) increases in cost sharing for other benefits or services.
While these findings are extremely important to a patient’s wallet, they are also important to overall health and wellness. Data shows that when cost becomes a barrier to accessing medications, patients do not use their medications appropriately, skipping doses in order to save money or abandoning a treatment all together.
By strengthening the case that limiting cost-sharing for medications is indeed feasible, these analyses will help inform public policy. LLS’s Office of Public Policy will deliver these findings through strategic advocacy at the federal and state levels, along with input from patients, like Jody, to help improve access to care and accelerate cures.
As the voice for all blood cancer patients, LLS’s Office of Public Policy has achieved groundbreaking results for patients, such as advocating for oral parity legislation which has been signed into law in 42 states, and helping to drive forward the 21st Century Cures Act. To learn more about those efforts or help in LLS’s advocacy efforts, click here.
The U.S. Food and Drug Administration (FDA) approved an immunotherapy for adults and children with classical Hodgkin lymphoma who were not benefiting from existing treatments. The Leukemia & Lymphoma Society (LLS) applauds this approval as an important step forward in ultimately finding a cure for these patients.
While Hodgkin lymphoma is now considered one of the most curable forms of cancer – with a more than 88 percent five-year-survival rate overall – this therapy is for patients who have relapsed after being treated with current therapies, and otherwise have limited treatment options.
The approved therapy, pembrolizumab (Keytruda ®), is among a class of drugs known as immune checkpoint inhibitors, which work by removing the brakes that stop the immune system from attacking cancer.
The body’s immune system has T-cells that patrol the body constantly looking for signs of infection or foreign cells (such as cancer cells). Certain proteins on cells indicate if it is healthy or cancerous – and if it is cancerous, the T-cell will attack it. Sometimes the T-cells are unable to recognize the cancer cells because they carry “checkpoint” proteins that act like masks, helping the cancer cells blend in with normal cells.
In this case, the “mask” is a protein called PD-L1, which interacts with another protein, PD-1, allowing cancer cells to evade attack from immune T-cells. The newly approved drug, pembrolizumab, targets PD-1, unleashing the patient’s immune system to fight the cancer. This marks the second FDA approval of a PD-1 checkpoint inhibitor for Hodgkin lymphoma patients, with nivolumab (Opdivo ®) approved in May 2016.
FDA based the approval of pembrolizumab on data from a clinical trial of 210 patients who were not benefiting from previous treatment. Within the trial, 69 percent of patients responded positively and 22 percent showed no detectable sign of cancer.
The approval reinforces the hope that immunotherapy will prove useful for a wide variety of cancers, as the drug was previously approved for head and neck cancer, non-small cell lung cancer and melanoma.
Furthermore, LLS is currently funding research studying the benefits of pembrolizumab or nivolumab for patients with non-Hodgkin lymphoma. Stephen Ansell, M.D., Ph.D., Mayo Clinic, Margret Shipp, M.D., Dana-Farber Cancer Institute, and Sattva Neelapu, M.D., MD Anderson Cancer Center, are leading these research efforts.
Today, on International Women’s Day, we celebrate women in science who work to drive forward The Leukemia & Lymphoma Society’s mission to find blood cancer cures.
This year’s theme, #BeBoldForChange, calls on the masses to help forge a better working world – a more gender-inclusive world.
At LLS, we know it is crucial to support women in science. In 2013, women accounted for less than one third of scientific researchers across the world. Throughout its history, LLS has supported a remarkable generation of women scientists who have led extraordinary advances in blood cancer treatments.
Through our Career Development Program, we are funding some of the brightest women researchers early in their careers. We asked two young LLS-funded investigators to explain what drives them and what advice they have for other women in science…
Anastasia Tikhonova, Ph.D., New York University School of Medicine
Q. What area of research do you study?
For my post-doctoral studies, I chose to investigate how leukemia cells communicate with their surrounding microenvironment. As our understanding of cancer cell biology continues to grow, it has become clear that malignant cells are heavily dependent on cross talk with their healthy cellular neighbors to survive and proliferate.
I never think of leukemia cells as isolated entities, but instead interdependent communities that rely on interactions with other cells to survive. In the lab, we have developed the ability to image live leukemia cells in their native microenvironment, and it is amazing to see tumor cells interacting with surrounding bone marrow cells. One just needs to look at this cellular dance and know that there are many discoveries to be made.
I believe that understanding the molecular mechanisms underlying these complex interactions is a critical component to design effective targeted therapies.
Q. What advice do you have for young women who want to pursue this line of work?
Surround yourself with strong women from different walks of life. In bad times, they will pick you up and push you forward. In good times, they will whole-heartedly celebrate your achievements. And, you will do the same for them.
Q. Finish this sentence for us: If I weren't finding a cure for blood cancers____________.
I would be fighting for women’s rights. As I progress further in my scientific career, I see less and less women. We need to change that.
Srividya Swaminathan, Ph.D., Stanford University
Q. What area of research do you study?
I specialize in identifying novel treatment strategies for two forms of pediatric blood cancer: acute lymphoblastic leukemia (ALL) and Burkitt lymphoma.
Having worked in premier facilities for treatment of childhood leukemia, I have seen how pediatric cancers can take away the best phase of a person's life. My goal is to improve the lives of children afflicted with blood cancers, by identifying safe treatment modalities. This central goal propels me to pursue research every day.
What advice do you have for young women who want to pursue this line of work?
Progress in health science research is often incremental. However, a sequence of incremental research leads to groundbreaking discoveries that have a tangible impact on patients. So, I encourage women to be patient, not buckle under pressure and keep pursuing their research goals.
Q. Finish this sentence for us: If I weren't finding a cure for blood cancers____________.
I would be a chemist trying to build a DNA molecule from scratch.
Today, and every day, we celebrate women in science. Since its inception in 1949, LLS has invested more than $1 billion in cutting-edge research funding many of today’s most promising advances. To learn more about LLS's research investment, click here.
