LLS Statement on the Closure of the Lymphoma Co-pay Fund

The Leukemia & Lymphoma Society (LLS) expresses our deepest regrets to the patients who applied and were accepted for assistance through our lymphoma co-pay program, and whom we are unable to fund now due to a lack of donations from our sponsors. This turn of events was unexpected and we are doing everything possible to rectify this situation for blood cancer patients who rely on us.  In short, after eight years of operating this fund on a first-come, first-served basis, in which we have been able to accommodate patients who we committed to helping, we experienced an unprecedented demand and number of applications that caused us to promise assistance to more patients than we could service.  One of the many actions we are taking to rectify this is an immediate shift to a more easily managed co-pay approach.

We are attempting to respond to every question and suggestion we receive from patients on this issue, and the below summarizes some key points we’d like to convey regarding some of the most common questions and concerns.

• Why now? As lymphoma co-pay programs at other organizations closed, more and more patients turned to us. We are unclear what has driven the other lymphoma co-pay programs to close. We were anticipating additional funds to come in this quarter from pharmaceutical companies to cover the patients already promised assistance, but the funds didn’t come in time and we simply ran out of money. We continue to work very hard to secure additional funds as quickly as possible.

• We get it and we are fighting for patients. This situation underscores the ever-growing financial burden that cancer patients and their families are facing. As a patients first organization we believe that our co-pay assistance programs are an important way for us to help blood cancer patients and their families. Our goal is to provide assistance to patients in need and we are making every effort to obtain additional funding to reopen the lymphoma fund. LLS’s co-pay assistance program has helped more than 37,000 lymphoma patients since its inception in 2007. We have disbursed nearly $114 million to lymphoma patients in assistance over that time, with $12 million in fiscal year 2018 to date. We have disbursed more than $393 million in total to more than 89,000 blood cancer patients participating in all of our co-pay funds.

• Where the money comes from. LLS dedicates a significant portion of its donated funds to helping patients, including free education and information, help to find clinical trials testing new treatments, and more.  Donors to LLS can be assured that their funding is supporting LLS’s full and robust agenda for patients, including breakthrough research as well as support that is helping patients every day, as they deal with diagnosis and treatment.  LLS’s co-pay assistance program is handled separately from funds donated by individuals, companies and foundations.  Co-pay funding is provided only by pharmaceutical and biotechnology companies. LLS accepts funds from our industry sponsors and partners to provide much needed financial assistance to blood cancer patients. One hundred percent of the donated co-pay funds is used to assist patients by helping them with their insurance co-pay obligations. As a non-profit organization, we rely on this generous support, and we have no control over the amount of funds donated to LLS from these partners, nor the timing of the donations. Thus, unfortunately, there is nothing we can do during this interim period between funding, except continue to work very hard to secure additional funds.

• Balancing funds for mission. Individual donations raised through LLS fundraising campaigns such as Light The Night or Team In Training, or those given directly to LLS by individual donors and companies, support every other facet of the LLS Mission, including our robust scientific research portfolio, patient services including help with clinical trials, support groups and education, healthcare professional education and our advocacy for patients in Washington, DC. Funding for the co-pay programs comes exclusively from pharmaceutical companies.

• How co-pay works.  The LLS co-pay assistance program operates under very strict guidelines set by the Office of Inspector General of the U.S. Department of Health and Human Services. Under these rules, the pharmaceutical companies earmark the disease silos to which their funds are committed. Contractually, we cannot move funds to cover a different disease category. The lymphoma fund has been structured as a first-come first-served model but we are now changing the fund to a reserved model. The advantage of this model is that the assistance level for each patient accepted into the program is reserved, thus eliminating the risk for lost funding for patients. The disadvantage is that we would be able to serve fewer patients and the program would become fully subscribed more quickly.

• What patients can do in the interim. Patients who have lost access to their co-pay assistance should talk to their doctors and social workers and try contacting the drug manufacturers for assistance. Patients and caregivers should continue to visit the LLS website (www.lls.org/copay) frequently for timely updates on the status of the lymphoma fund. Once the fund reopens patients who had previously been enrolled will need to reapply. For any other questions please email us at missioncommunications@lls.org