Raising Our Voices
They came from California, Colorado and Arizona, North Dakota, New Hampshire, Texas, Louisiana and Minnesota, each with their own story to tell. In all, 36 volunteers representing 25 states came to Washington D.C. this week to learn how to effectively use their stories to advocate for policies to protect blood cancer patients’ access to treatment and care.
For three days these patients, survivors and caregivers took part in a training session with the dedicated policy and advocacy staff of The Leukemia & Lymphoma Society, honing their story-telling skills and sharpening their understanding of two issues they would present to their legislators and staff members on Capitol Hill.
Each had a deeply personal reason for being there:
- Callen Kriedel, of Tennessee, who like any 22-year-old college student felt invincible, purchased the least expensive insurance plan she could find only to learn days later she had lymphoma; her plan fought her on covering her “pre-existing” condition.
- Jeff Saper, of Westchester County, NY, lost his seventh-grade son, and Abby and Aaron Breyfogle, of Minnesota, lost one of their baby twin girls, both children succumbing to the lethal acute myeloid leukemia.
- Laurie Adami, a mom who battled lymphoma with an endless and, for her, largely ineffective arsenal of different therapies over 12 years, starting when her son was seven; Only when she was nearly at death’s door did she achieve a miraculous remission from an experimental, revolutionary immunotherapy — CAR T-cell therapy. This week Laurie celebrated her son Gus’s completion of his freshman year of college.
- Michelle Lawrence, of New Hampshire, whose son was 2 when her doctor proclaimed her lymphoma diagnosis gave her two years to live; that was 10 years ago.
- Lois Rosenblum, of California, who at 81-year-old has been living with lymphoma for 17 years.
And on and on…
And so, after a night of practicing they headed for the Hill first thing in the morning with two asks:
- the first to support legislation guaranteeing parity in coverage for patients who get their drugs at a pharmacy and take their cancer medicines orally, with those who receive treatment in the hospital or clinic. Many insurers treat these situations differently — one is a medical benefit and one is a pharmacy benefit, which often requires patients to pay a percentage of the very high cost of the therapy.
- The advocates also asked their legislators to push back against the Administration’s promotion of short-term insurance plans. These plans originally designed as a stop-gap for consumers between jobs or due to other circumstances that cause them to lose insurance, provide woefully inadequate coverage; they are frequently referred to as junk.
Our advocacy reached another level on Wednesday afternoon, when one of our volunteers, David Tate, was invited to speak on behalf of patients at a press conference hosted by House Speaker Nancy Pelosi and Senate Minority Leader Chuck Schumer, and attended by several other Democratic Senators and House Representatives. The conference (#protectourcare) was aimed at ongoing GOP efforts to dismantle the Affordable Care Act and threaten protections for patients with pre-existing conditions.
David spoke of his son, Lucas, diagnosed with acute lymphoblastic leukemia when he was only seven months old. David was changing careers at the time, and like Callen, had purchased a short-term plan only days before Lucas received the diagnosis. The company viewed Lucas’s pre-existing condition as ineligible for coverage and David and his family and doctors had to fight them every step of the way.
After three days the advocates were tired but energized. They said they came away from the experience feeling a strong sense of community and empowered to keep telling their stories on behalf of themselves and others.
LLS is committed to advancing research and bringing new therapies to patients faster. But therapies can’t help if patients can’t get access. And none of our work would be possible without our amazing volunteer advocates, who bring these issues to life and make it real for the policymakers.
Follow #LLS4access on Twitter to learn more about our advocates’ efforts this week.
