Since being established in 1949, the Leukemia and Lymphoma Society (LLS) has raised and invested at least $875 million to fund medical research for certain types of blood cancer therapies, in the mission to cure leukemia, lymphoma, Hodgkin’s, and myeloma, as well as improve the quality of life of patients and their families.
Members of the Rhode Island Chapter, which is based in Cranston at 1210 Pontiac Avenue, don’t plan to stop helping anytime soon.
“For many, many years we’ve been saying, ‘Someday, we’ll find a cure for cancer. We need your help.’ The actuality is that someday is today,” Bill Koconis, the executive director of the LLS Rhode Island Chapter, said to a group of about 50 LLS volunteer committee members recently during a fundraiser kick-off celebration at Iron Works Tavern on Jefferson Boulevard in Warwick.
“We have found cures for many certain types of cancers,” he said. “There’s still a long way to go with others, but in some ways we’ve made some great successes, and that’s exciting to talk about. We’re getting closer to that day where we cure all cancers.”
The gathering highlighted the importance of raising funds via the Light the Night Walk, which is set for Sept. 28 at Garden City Center at 100 Midway Road in Cranston. Last year, 60 LLS chapters collectively raised $55.8 million through at least 200 Walks nationwide. The goal for Rhode Island this year is $250,000.
Aside from raising awareness and funds, said Koconis, the LLS advocates locally and nationally to change and improve laws concerning cancer treatment. He is thrilled that the Rhode Island General Assembly recently approved legislation for the Oral Parity Law, which means that patients should not be forced to pay more out-of-pocket costs for oral cancer medications than they are required to pay for injectable or infusional cancer medications, as oral cancer drugs can be more expensive than non-oral chemotherapy treatments.
In many cases, it also prevents patients from having to visit hospitals or health care centers for lengthy stays. Upon Governor Lincoln Chafee’s signature, Rhode Island became the 26th state to enact the law.
Koconis said high fees are not only costing patients money, but also their lives. Some oral medications cost patients about $7,000 per month.
“You basically need to pay a mortgage payment to stay alive,” he said. “We saw that as discrimination, so we want parity. If you’re paying a 25 to 30 percent co-pay for an infusion, we want the same for oral.”
The oral medications, said Koconis, make certain forms of cancer “manageable” diseases. For Maya Spadano, who turned 5 earlier this month, treatments have made her leukemia manageable after being diagnosed Dec. 26, 2010.
“I will never forget that day,” her father, Bob Spadano, said at last week’s event. “On Christmas Day, which is a joyous day for most people, Maya was in my wife’s arms, motionless and very drained. It’s one of the most grueling things a family can go through.”
But Maya and her family, who live in Cumberland, also have a happy story to share. She received her last dose of chemotherapy Feb. 1, and is now cancer-free.
“Maya is able to be a 5-year-old child thanks to the fact that she’s in remission. She’s doing well,” he said, noting that Maya was unable to attend the event because she was in Storyland. He also expressed gratitude to LLS volunteers for everything they do.
“I can attest to the kind of difference that you make, so thank you all,” said Spadano. “It floors me that there are so many selfless people in this world who go out and raise the kind of money you do. All those drugs helped save my daughter’s life.” According to Elizabeth Perry, the LLS senior campaign director, Spadano was being humble, as he recently participated in the Walt Disney World half-marathon in Florida to help raise funds to battle leukemia and lymphoma. He was the eighth highest fundraiser among 1,600 participants.
In a separate interview, Spadano said he and his wife Sherri, along with their other daughter, Juliana, 9, view Maya as their heroine.
“Watching what she went through as a 2-, 3-, [and] 4-year-old was amazing,” he said. “It makes her a stronger person. Whatever she wants to be, she’s going to be.”
Spadano’s story hit home for Nicki Castonguay-Maher, the vice president of Charity By Design at Alex and Ani. She, plus other Alex and Ani representatives, attended the event, as Alex and Ani has partnered with LLS and plans to launch an LLS charm this fall to tie in with the Light the Night Walk.
“I’m very fortunate to be with a company that’s main goal is to give back, especially in the Rhode Island community,” she said. “This is not just a walk for awareness; it is a fundraising walk; our goal is to raise enough funds to continue to do what we’ve been doing. I feel so humbled to be surrounded by the people on the committee, and I’m really excited about the walk.”
The event also helps support an LLS-funded researcher who works out of Rhode Island Hospital, plus financial services for patients who receive $100 each year they are in active treatment, as well as a co-pay assistance program. Depending on the disease and financial level of a patient, he/she may receive up to $10,000 in co-pay assistance. In 2012, the program funded $44.2 million, helping 40,000 patients.
Additionally, the money funds programs that match survivors with newly diagnosed patients, support groups at various hospitals across the state and educational programs for health care workers.
According to LLS, an “estimated 1,012,533 Americans are living with or are in remission from leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma or myeloma. Approximately every four minutes, someone is diagnosed with blood cancer, and every 10 minutes, someone dies. Leukemia causes more deaths than any other cancer among children, adolescents and young adults under the age of 20. Lymphomas are the most common blood cancers and incidence increases with age. The survival rate for myeloma is 41.1 percent, with incidence more than twice as high for African Americans” in comparison with other races.
“What you’re doing is not in vain,” Koconis said to committee members. “It is helping. It’s putting survivors out there. We’re getting closer to that day that we cure all cancers and it becomes a manageable disease.”
As noted, the Walk will take place Sept. 28 in Cranston. Check-in and festivities begin at 5 p.m., with the Walk starting at 7 p.m. Learn more at LightTheNight.org, and visit Alex and Ani at AlexAndAni.com.