Q&A with Lynne Morin, Leukemia & Lymphoma Society
What does a typical week consist of for not only a patient, but also patient advocate like yourself?
A typical week can vary greatly. At The Leukemia & Lymphoma Society we are here to serve patients and families affected by blood cancer so we may be conducting an education program in the local community, testifying at the state house or visiting a treatment center to make sure their patients are aware of our services. We receive numerous calls on a daily basis from patients, families and health care professionals for a variety of reasons. Many patients are calling looking for information, are newly diagnosed and don’t know what to do. Some are struggling with psychosocial issues and many are looking for financial resources. We also get numerous calls from family members in crisis, trying to manage work along with taking care of a sick spouse, child or close friend/relative. Cancer affects the whole family and in addition to having a psychological impact, a cancer diagnosis can be financially devastating.
Patients’ weeks will also vary greatly depending on their diagnosis, access to treatment, and overall health. Many patients struggle on a day to day basis with pain and fatigue while others have good quality of life but are struggling financially or emotionally. Patients with chronic cancers who are on oral therapies have to take their medication every day, and for the rest of their lives. Other types of blood cancer are treated in an outpatient basis with chemotherapy, radiation and other treatments. Some may have a stem cell transplant. At LLS our role is to help patients and their families with any issues they are facing and help them access services.
We have been hearing a lot recently about reforming the way in which healthcare is delivered and how we pay for it. What are your thoughts on some of the federal and state efforts to tackle this complex and multi-layered issue?
From the state perspective, one of the greatest challenges in health care, over the last several years has been how to tackle massive budget deficits in state budgets, while minimizing the impact of cuts in state funding, reimbursements to health care providers, and patient benefits, as well as program restructuring to find savings, in state Medicaid programs. Medicaid is the primary source of health insurance for low income, underserved and disabled Americans and also provides long term care services such as home care and nursing home care for low to middle income seniors, with limited resources. For many blood cancer patients enrolled in this important program, who usually do not have access to other sources of affordable health insurance, the fall out of these efforts is potentially life threatening. There are similar issues federally, and the restructuring of Medicare reimbursement payments has been affecting seniors with access to medications and other expensive therapies.
Massachusetts is the only state in the country to not allow patients to take advantage of rebates and discounts offered by biopharmaceutical manufacturers? How does that impact the patients you work with?
The lack of patient access to rebates and discounts offered by biopharmaceutical companies leaves many patients vulnerable. Many Massachusetts blood cancer patients are unable to afford life-saving drugs, including oral chemotherapies like Gleevec. The total cost out of pocket for all these medications can be devastating. Many patients skip doses, cut pills in half or wait until they can afford to purchase them, all of which effect the outcome of their disease, and can be life threatening. This also causes poor quality of life. Patients’ inability to tap into rebate and discount programs makes them even more vulnerable. The fact that Massachusetts is the only state that doesn’t allow these rebates, yet has universal health insurance, makes no sense. I have worked with many patients this past year who were faced with overwhelming costs for their prescription drugs, so these programs would significantly help. Our co-pay assistance program, which helps blood cancer patients pay for costly, treatment related medications, helped 245 Massachusetts residents totaling over $530,000 in our 2011 fiscal year. Access to medication is a very real problem in Massachusetts, and we should do what we can to help patients afford their life saving medications.