During National Nurses Week, observed each year from May 6 to May 12, we celebrate nurses across the country who are committed to our health and wellness. At The Leukemia & Lymphoma Society, we wanted to recognize Katie Demasi, a nurse and a blood cancer survivor, who has experienced both sides of the healthcare system. Here is her story…
In May 2016, I graduated from the University of Delaware with a Bachelor’s of Science in Nursing. I studied hard for my license and landed a job as a registered nurse at NYU Langone Medical Center in New York City. I picked out my scrubs and looked for a new apartment. Then, everything changed.
Less than one week before I was supposed to start my post-graduate-big-girl life, I was diagnosed with Hodgkin lymphoma.
My life stopped. Everything I had just worked so hard for was now crashing and burning before my eyes. I had to say good-bye to New York City, good-bye to my new nursing job and good-bye to my post-graduate-big-girl life.
We hit the ground running. Doctor’s appointments. PET/CT scans. Egg freezing. Blood work. Chemotherapy.
While my nursing career felt like it was slipping away from me, I started to realize that I was getting closer to it. In every situation, I was able to use my knowledge from nursing school to help put myself at ease.
I never learned specifically about Hodgkin lymphoma, but I did learn about chemotherapy, and even some of the drugs I was taking. For example, my chemotherapy combination was twelve treatments of ABVD. This is an acronym for the five combined therapies, and “A” stands for Adriamycin® (generically known as doxorubicin).
While everyone experiences side effects differently, I remembered from my studies that this medicine might cause your urine to have a reddish color. There was no surprise after my first chemo treatment when I went to the bathroom and saw reddish urine.
My nursing education not only helped me calm down, but it also calmed down my family, especially my mom who came to every appointment with me. Sometimes medical jargon can sound scary and confusing, so I was able to interpret that so it was much easier for my family to understand.
During my treatment, I enjoyed being around other nurses because it felt right. For the last four years, other nursing students had surrounded me. Whether it was in class, in clinic, at the hospital, or even in my own house with my roommates. I enjoyed talking to the nurses treating me about their career history and their long-term career goals.
I met great nurses – travel nurses, nurses who worked in the infusion center for a long time, new nurses and experienced nurses. I immediately connected with a very special nurse, Judy. She comforted me while I was going through chemotherapy. She talked to me to distract me from the toxic, yet life-saving drugs that were pumped into my body. She propped my head up on a pillow on the days when I just wanted to rest. She worked at the speed of light, making sure everything was where it needed to be. She advocated for her patients. She showed me how to be an amazing nurse.
On my last day of chemotherapy, I gave Judy a necklace. When I went back six weeks later for my scan results, Judy was there. She had tears in her eyes and the necklace around her neck. It now had two new charms from other survivors she treated. I would always be close to her heart, and she would forever be close to mine. Every time I put my scrubs on and before I start my shift, I will think of her and ask, “What would Judy do?”
Although I thought that taking a year off would cause me to forget how to be a nurse, I realized that being a nurse is something you can never forget how to do. Sure, maybe some medical terms have slipped my mind, but I can research that information. I cannot research how to be empathetic, or how to treat a patient with respect and dignity.
I struggled with the transition from starting my career as a nurse to becoming the patient. It was hard to let others take care of me when I always wanted to take care of others. However, if I did not let the nurses, doctors and physician assistant help me, I never would be in this place in my career. I had to be a patient to become a nurse.
I now know what it is like from both sides – as the nurse and as the patient. While I wish I did not have to experience being a patient, I cannot change that. Instead, I am going to use my experience to be the best nurse I can be. I can put myself in the patient’s shoes, and give them the same kind of treatment I received.
On National Nurse’s Week, I am thankful for every nurse in my life. My professors, instructors, family, friends, and all the nurses I met throughout this past year. They took exceptional care of me and made me feel comfortable. I promise to be a good nurse because I know how much of a difference that can make for the life of a patient and their family.
To all the amazing nurses making a difference: Happy National Nurse’s Week!
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!