On November 6, citizens in Idaho, Nebraska, and Utah approved ballot measures to expand Medicaid in their states. These landmark votes will close the coverage gap for more than 360,000 people in these states who earn too much to qualify for traditional Medicaid but not enough to get help with the cost of buying individual coverage.
Employees, advocates, and volunteers with The Leukemia & Lymphoma Society (LLS) supported these measures every step of the way. The LLS Principles for Meaningful Coverage call on us to improve access to healthcare for our patients, and we’re proud to have endorsed and advocated for these measures.
Stacie Kulp, LLS Utah Chapter Executive Director
A victory this big would not have been possible without the shared effort of hundreds of advocates from across the patient community. Together, advocates across Idaho, Nebraska, and Utah worked for months to gather signatures, make phone calls, knock on doors, and talk to their networks about the importance of Medicaid expansion. Thanks to their collective gifts of time, expertise, and resources, Medicaid expansion is now the law in their states.
Among those advocates were members of the LLS Chapters in Idaho, Nebraska, and Utah. Area Director Lauren Olsen (Idaho), Executive Director Jenna Sager (Nebraska) and Executive Director Stacie Kulp (Utah) spoke at press conferences, authored letters to local newspapers, and educated their Boards of Trustees and high-level volunteers about the importance of the issue. Their work was integral to the success of these ballot measures.
As more states adopt Medicaid expansion, LLS will continue to make good on its belief that people shouldn’t have to fear going bankrupt when seeking treatment for a serious medical issue. In the 14 states left that haven’t expanded Medicaid, more than two million people continue to face a serious coverage gap. For that reason, LLS will keep working to ensure blood cancer patients can access the care they need.
Learn how you can raise your voice in the fight against cancer.
The Leukemia & Lymphoma Society (LLS) has helped millions impacted by cancer throughout their almost 70-year history. But the fight against blood cancers cannot be won without support.
LLS’s Light The Night fundraising campaign continues to help light the path to cancer cures and give hope to cancer patients nationwide. Through Light The Night, thousands of national partners, sponsors and corporate teams, including Burlington Stores, Pharmacyclics, Janssen, Walgreens and Wawa, are helping LLS fund lifesaving research and support for patients battling cancer. It is because of the lifesaving advances in treatments that more patients are surviving cancer.
Life after cancer was once unimaginable. No one forgets that he, she or a loved one once had cancer. Many survivors progress to a "new normal." Adjusting emotionally is a process that takes time. But survivors might also find that, in some ways, the new normal is as rewarding and gratifying than life before cancer.
As LLS’s National Presenting Sponsor of Survivorship and Hope, Pharmacyclics and Janssen are committed to working with LLS through its Light The Night fundraising campaign to shine a spotlight on what it means to be a cancer survivor.
“We are honored to sponsor The Leukemia & Lymphoma Society’s Light The Night Walks in support of their efforts to help patients and caregivers through their blood cancer journey from diagnosis to treatment, and ultimately to their new normal,” said Dr. Roula Qaqish, Head of Medical Affairs, Pharmacyclics LLS, an AbbVie company. “Through The Leukemia & Lymphoma Society and this incredible nationwide movement, we look forward to helping further educate the public and empower patients in blood cancer community.”
Dr. Andree Amelsberg, Vice President of Medical Affairs at Janssen Oncology, added, “The Light The Night campaign is the perfect platform for partners and sponsors like us, as it allows us to bring our messages of support directly to blood cancer communities across the country. LLS holds 140 Light The Night Walks each fall, providing a meaningful opportunity to reach many of the 1.3 million Americans living with or in remission from a blood cancer as well as their loved ones.”
LLS thanks all its 2018 National Corporate Partners to bring us one step closer to finding cures, including #1 Corporate Partner and Honored Friend: Burlington Stores. National Presenting Sponsor of Survivorship and Hope: Pharmacyclics and Janssen. Leading Lights: Walgreens; and The Wawa Foundation. Luminaries: Amgen; Astra Zeneca; Barclays; Carter’s; Celgene Corporation; Elbit Systems of America; FIS; Genentech/Biogen; Kite, a Gilead Company; Great American Cookies®, Marble Slab Creamery®, MaggieMoo's Ice Cream & Treatery®, Pretzelmaker®, Hot Dog on a Stick®, and Round Table Pizza®; Pfizer Oncology; Stater Bros. Charities; Takeda Oncology; and The United Food and Commercial Workers (UFCW), LLS’s longest standing partner.
LLS and the 2018 Light The Night National Corporate Partners share the goal to support patients and caregivers through their cancer diagnosis and treatment – through ground-breaking research efforts, continuous advancements in treatment and educational resources to inform and empower.
Learn more about The Leukemia & Lymphoma Society and Light The Night, volunteer, participate or donate. Visit www.LightTheNight.org for more information.
After Eevie was born, she was diagnosed with a rare form of childhood blood cancer that affects 1 in 5 million newborns. Doctors gave her a 17 percent chance of surviving to age 2. This month, Eevie celebrates her fifth birthday. Each year her mother Brynne has shared her progress on this blog (you can read those stories here).
Turning five is a true milestone. For Eevie, it feels epic. It feels that way for me too. When Eevie was born with cancer, all I saw was the beginning of a painful end. Now, I see the ending of a painful beginning.
I remember her lengthy hospital stays, scrolling through social media and weeping as I read other moms' posts about their children's milestones — beginning a new sport or their first day of kindergarten. Not once did I think that I would get to experience those things. I wouldn’t let my heart go there. Now, the dreams I wouldn’t allow are becoming realities.
This fall, Eevie began pre-k/kindergarten. I can hardly believe it! I’m so thrilled to report that she is doing amazingly well, and right on-par with her classmates. At parent-teacher conferences, Eevie’s teachers told us that she has a great deal of empathy and is “a very good friend;" she thinks about others and wants to “fix it” when another child is upset.
She is also involved in not one but three new sports: soccer, swimming, and gymnastics! At home, she's a daydreamer (I often find her making up songs and stories). She has two imaginary friends — Brenda and Item — who she insists live across the street. And, for a five-year-old she is quite the fashionista, waking up early to create ensembles complete with matching headbands and jewelry. She also remains a HUGE Mickey and Minnie Mouse fan.
Our main challenge has been growth. Newborns diagnosed with congenital acute lymphoblastic leukemia struggle to match their peers on the growth charts. Eevie currently weighs 31 pounds and stands 39 inches tall. To help her catch up, we give her a human growth hormone (HGH) injection six days a week. We call it “little tiny poke." It's no fun giving her a shot every night but the pain is minimal compared to the pain she experienced from chemotherapy. Honestly, I feel very thankful that HGH is all we have to give her.
Eevie sees an endocrinologist every three months and a dermatologist every six months. Also, every six months, she sees an oncologist and has blood work done. Other than that, we are treatment free! Getting her to eat is still somewhat of a battle.
During the past four years, she worked very hard in speech learning how to swallow. She has now completed speech therapy, is feeding tube-free, and a huge M&M and chicken wing fan!
Going forward, we must watch for secondary cancers, a risk from the amount and intensity of chemotherapy Eevie has received since birth. She is at particularly high risk for skin cancer because she is of Irish descent and has sensitive, light skin. She cannot wear traditional summertime clothes. Her dermatologist has instructed us to dress her in SPF 50 clothing. She has many outfits specially-ordered from companies that skin cancer specialists recommend.
Sometimes, when I reflect on what happened to Eevie, it feels like a story; almost like it happened to someone else. Other times, I can feel my heart race and my hands shake as the terror of it all comes rushing back in.
But recently, I have been feeling something quite new: the "gosh they grow up so fast" feeling that I never thought I would have the privilege of experiencing. Nowadays, I find myself tearing up not out of sadness and loss but out of gratitude and awe.
The Leukemia & Lymphoma Society (LLS) has helped us every step of the way. LLS has been an anchor when we needed support and a light when all we could see was darkness. The research that LLS supports and advances gave me something to hold on to when I had nothing else to grasp. This research has made it possible for our family to set sail in one week on the Disney cruise ship “Fantasy” to celebrate Eevie's epic five-year milestone; it is the reason why we can say “bon voyage” to a painful past and "welcome" to a new beginning.
