My Patient Story
Congressional District: PA01
Issues and Challenges
Mary has encountered: Caregiving, Copay Accumulator, Financial Assistance, Geography, Oral Parity, Premium Payments, Prior Authorization, Underserved Community
On December 23, 2010 my husband Jim was told he had Non-Hodgkin's Lymphoma. The next day he had a heart attack and we celebrated Christmas in his hospital room. The heart attack delayed therapy a few weeks but we remained hopeful. I now realize his doctor was more alarmed than we because the tumors were so fast growing,
In several months we learned his was "Double Hit", or twice mutated. In mid-2011 there was no protocol or known therapy. He assured his doctors he would agree to any novel treatment. He wanted to be part of the cure. In late 2011 Jim never complained as the news grew worse; on January 7, 2012 Jim passed.
I joined LLS as a fundraiser then advocate to take Jim's place as someone who would help find the cure for others. I've learned many blood cancer patients are never cured and need medication and monitoring for their lifetimes. Their lives are now precious to me. I've learned about the universality of the mission of various cancer treatment and prevention organizations.
Through Patients Rising I've learned from other rare disease patients and families about issues when they face when the disease is unfamiliar to most people. As I advocate for LLS I want legislators to know that my concerns about patients who are underinsured applies not only to those facing blood cancer, but all cancer patients and those with rare diseases that are without hope of cure due to overwhelming financial burdens.
My Motivation and Inspiration
My advocacy interest emerged when I became involved with Leukemia & Lymphoma Society as Jim's widow. My passion for advocacy has grown as I reflect on my experiences as a mother, sister, sister-in-law, friend and wife. As a mother I have three children in their 30s, two of whom are convinced cancer will strike them. In addition to their father passing, I've survived breast cancer twice, my brother died of pancreatic cancer at age 45 leaving 3 small children; my sister died of cervical cancer at 50 leaving two girls, another brother's drastic surgery after esophageal cancer has dramatically reduced his life expectancy and my brother-in-law died of lung cancer. Three of my friends also had breast cancer, and one passed recently.
Each of these losses has changed my children's view of their health expectations. Now I fear for my children and other 30-somethings who do not have the protective insurance that helped Jim and our family. I want state and federal legislators to pass laws and promulgate regulations to preclude insurance that is deceptively inexpensive and simply under-coverage.
Meaningful coverage must includes guaranteed access to plans: that do not discriminate against cancer and other chronic disease diagnoses; that do provide coverage for pre-existing conditions; that prohibit lifetime maximums which signal a death knell for the seriously ill patients who need treatment. I believe most patients are like Jim and seek meaningful productive lives, contributing their talents with energy as healthy citizens.
I hope my advocacy "for the Love of Jim" means what his cancer journey leads to more insurance protection for those facing blood cancer and other chronic diseases. I want those patients to experience hope and joy for their futures.