As Congress considers new healthcare legislation, The Leukemia & Lymphoma Society (LLS) and its nationwide grassroots network of more than 100,000 advocacy volunteers, is urging lawmakers to protect lifesaving access to health care for millions of Americans, including cancer patients and others with pre-existing conditions.
The American Health Care Act (AHCA) is a healthcare overhaul that puts those with pre-existing conditions at grave risk of losing access to health insurance. The House of Representatives passed the AHCA and the bill is now with the Senate. People across the country have been posting to social media with the hashtag #IAmAPreexistingCondition to share their concerns about the bill.
LLS is calling upon cancer patients and their loved ones to amplify their voices as this bill is considered by sharing a short video about how the AHCA would impact them. LLS has received an outpouring of video stories, which are posted to its LLS Advocacy Facebook page. Here are a few:
“My son Lucas and I are asking our lawmakers to stand with us & support patients with pre-existing conditions! We know firsthand the toll a #cancer diagnosis can have on a family. Under the #ACA our family & millions of others have protections against pre-existing condition exclusions and lifetime maximum coverage caps. In addition to now having a pre-existing condition, Lucas exhausted his $6 million lifetime maximum in his yearlong battle with #Leukemia.”
“This is 2 year old Kendal Breyfogle, who, along with her identical twin sister Kenedi, was diagnosed with AML at 3 months old. After 17 months of remission, Kendal relapsed and is currently Day +11 from transplant right now. She has spent 212 days of her 2 years of life living in the hospital. Kenedi is 22 months in remission. Kenedi and Kendal are pre-existing conditions.”
You can share your story by following these three steps:
Grab your smartphone and turn it to video mode.
In your own words, record a video. Speak from the heart with just a couple sentences about who you are, your personal connection to blood cancer, and why you oppose any bill that doesn’t adequately cover pre-existing conditions. Here’s an example of what you might say: "Hi, I’m [your name] from [your city], and I’m asking my lawmakers to make sure that people with pre-existing conditions aren’t priced out of healthcare. This matters to me personally because ___________."
Upload your video to the LLS Advocacy Facebook page. To inspire others, make sure your post is set to public, use the hashtag #IAmAPreexistingCondition, and tag your Senators. Not on Facebook? Send your video via email to firstname.lastname@example.org.
Not for lack of trying, we’ve seen very little progress over the past 40 years in treating acute myeloid leukemia (AML), an aggressive and deadly blood cancer. But we’re finally starting to see the needle move and The Leukemia & Lymphoma Society (LLS) is playing a leading role in going on the offensive against the disease.
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!