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By mitigating some of the financial burdens, The Leukemia & Lymphoma Society helps patients better stick to treatment regimens.
By the time Jackie Pryor learned about her cancer, it had already spread to her lungs.
It was stage 4 anaplastic large cell lymphoma, and it was threatening her life.
Diagnosed in 2008 at the age of 29, Pryor fought the disease through initial treatment, and then through three relapses. She didn’t need anything else to worry about, but she got that anyway in 2014, when her illness and its treatments, including chemotherapy, forced her to leave her job as an elementary school counselor and go on disability.
That was painful not only emotionally, but financially, as it eliminated a good chunk of Pryor’s income. Since her diagnosis, another portion of her salary had been dedicated to the medical expenses her health insurance didn’t cover. Meanwhile, her regular bills continued to roll in. As a single person, Pryor didn’t have anyone else in her household to help fill the gaps.
Luckily, a year earlier, the nonprofit The Leukemia & Lymphoma Society — the world’s largest voluntary health organization dedicated to funding blood cancer research, education and patient services — had launched a copay assistance program to help eligible patients with cancer to afford their health insurance premiums and medication copays. Pryor applied and, based on her income, her diagnosis and the fact that she had health insurance, received financial assistance from the LLS throughout her entire period of treatment, from 2008 through December 2014.
She used the money toward chemotherapy treatments, cancer-related prescription medications and health insurance premiums. Now that she has no evidence of disease — but with plans to resume her career still ahead of her —the funding continues to help pay for her premiums, which ensure that she gets quarterly monitoring for cancer recurrence, as well as treatment for the long-term effects of a bone marrow transplant.
“I feel so immensely blessed to have access to this type of support,” Pryor says. “LLS is offering survivors tangible support that might otherwise be unavailable to us. Personally, I am able to balance a meaningful lifestyle, despite being on long-term disability income — approximately 60 percent of my salary from when I was employed. I see the difference in what I am able to do for myself in maintaining my household. The support I receive from the copay assistance program relieves some of the stress associated with making it from one month to the next.”
People like Pryor were exactly who LLS had in mind when it created the program, which helps more than 18,000 patients each year and provided over $43 million for patients in the fiscal year ending June 30, 2016.
“There have been studies showing that a catastrophic illness like cancer can really impact people’s economic status very significantly, and, for us, the important thing is to make sure that patients who have a diagnosis of cancer can keep their insurance and can afford their therapy,” says Beatrice Abetti, L.C.S.W., director of the LLS Information Resource Center that provides specialized blood cancer information, education and support for patients and their families. “Very often, it makes the difference between patients being able to afford their medications and still put food on the table, and having to choose between feeding their families or taking their treatments.”
Dollars and Sense
Assistance levels vary by specific blood cancer types and available funding. Patients must meet specific eligibility criteria, including how their income compares to the federal poverty level, which is adjusted for cost of living by region, residency, a confirmed blood cancer diagnosis and active insurance coverage.
LLS’s Co-Pay Assistance Program relies on the generous support of its donors, including pharmaceutical companies, for funding.
If funding is not available for a certain type of blood cancer, LLS is part of a network of organizations called the Cancer Financial Assistance Coalition, and works with patients to identify other sources of financial support. The Cancer Financial Assistance Coalition (cancerfac.org) allows patients to enter a zip code and/or a diagnosis to search for groups that may be able to provide financial or other types of aid.
Keeping Patients on Track
An additional resource LLS offers to help keep patients on their medications is a calendar with space to list all drugs that need to be taken and when, along with their doses and any other notes — such as whether to take with or without food.
The calendar also includes tips about how best to stick with a drug regimen, along with inspirational quotes and interesting facts. Patients or their caregivers can check off medications as they are taken.
“This tool or any other that would fill a similar function is helpful, because some of the regimens can be pretty complicated,” Abetti says. “In a protocol for myeloma, one medication is taken three weeks on and one week off, another is taken once a week, and a third is taken every other day. It’s very complicated, plus some medications are taken with food and some two hours away from food. We support all that can be done to help patients who could have chemobrain and not remember if they took a pill.”
In fact, Abetti says, patients call the LLS every day to ask for help managing their medications. “It’s important for patients to understand the importance of taking their medications on time and without missing a dose or without taking the same pill twice,” she says. “We educate them about that a lot.”
LLS can also help patients via other types of resources.
For one-on-one support, patients and caregivers can contact LLS’s information specialists, who are master’s-level oncology social workers, nurses and health educators. They offer up-to-date disease and treatment information.
Patients or caregivers can call (800) 955-4572 Monday through Friday, from 9 a.m. to 9 p.m. Eastern time.
Connecting with others who are going through — or have gone through — the same experience can also provide patients with information and support. LLS Community (CommunityView.LLS.org) is an online social network and registry for patients, caregivers and supporters of those with blood cancer.
“The community is a kind of LLS Facebook, and we also have other services where people can exchange information and support,” Abetti says. “We have a discussion board, forums where people can exchange information and ask each other questions, and online support groups that meet at regular times facilitated by health care professionals.”
Pryor appreciates all that the LLS offers.
“The Leukemia & Lymphoma Society is serious about curing blood cancer and, as part of its mission, LLS and its amazing staff are also serious about supporting people like me, who are fighting their disease every day,” she says. “We are passionate about winning our battles, and LLS is passionate about fighting alongside of us. I’m proud to say that LLS is with me, and this partnership has helped me more than I could ever really express.”
She adds that, while help from LLS and other groups is available, it remains on the shoulders of patients and their caregivers to find it.
“Survivors should take time to research the resources or delegate someone close to them that is thorough and trustworthy,” Pryor says, “because the truth is, each program requires personal information. Take the time to do your research, because there is so much out there for cancer patients and survivors.”