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, preparing to be effective advocacy leaders, 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:
- Callan Kriedel, of Tennessee, who like any 22-year-old college student felt invincible, purchased a short-term limited duration insurance weeks before graduation to bridge the gap until she began a new job, only to learn days later she had lymphoma; her plan fought her on covering what they deemed a 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, who at 31 years old, received a rare lymphoma diagnosis and a prognosis from her doctor that 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 ask was for Members of Congress to support legislation guaranteeing parity in the cost-sharing between patients who get their drugs in pill form at a pharmacy and those who receive treatment via IV infusion in a hospital or clinic. Many insurers treat these patients differently –requiring patients taking drugs in pill form to pay a percentage of the very high cost of the therapy, while patients receiving an IV drug often only requiring a set co-pay. The bipartisan Cancer Drug Parity Act (HR 1730/S 741) would put a stop to this problem to ensure access to cancer drugs, regardless of how they are administered.
- The advocates also asked their legislators to push back against the Administration’s promotion of short-term insurance plans. These plans were 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 plans,’ since they don’t typically cover basic benefits like prescription drugs. The House was preparing to vote on a bill, HR 1010, to rein in these plans the very next day, and advocates urged the Senate to follow suit by supporting S 466.
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 Congressional healthcare leaders. The conference was aimed at tackling ongoing efforts to erode 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. At a time before critical patient protections were guaranteed by the Affordable Care Act, David was changing careers and had purchased a new plan only days before Lucas received the diagnosis. The insurer claimed Lucas’s cancer was a pre-existing condition and therefore ineligible for coverage, and David and his family and doctors had to fight them every step of the way.
After three days the advocates said they came away from the experience feeling energized and empowered to keep telling their stories and leading others back in their home states to do the same.
LLS is committed to advancing research and bringing new therapies to patients faster. But therapies can’t help if patients can’t access them. 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. Do you want to be an advocate for LLS? To learn more visit www.lls.org/policy-advocacy