Policy & Advocacy

State Legislative Victories

This year, LLS helped advance laws in Pennsylvania, Alaska and Arkansas to ensure that health plans provide fair coverage of cancer treatments that are administered in pill form. This brings the total enacted “oral parity” laws to 43 states and Washington, D.C. Next year, LLS will continue the push to secure similar laws in Idaho, Michigan, North Carolina, and Tennessee.

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VOLUNTEER SPOTLIGHT: Kathy Hawkins

In January 2008, when I was a young, healthy mom of two young boys, I went to a doctor’s appointment for fatigue and a pain in my stomach. The next day, I was diagnosed with chronic myeloid leukemia.

My doctor prescribed a new, lifesaving oral treatment, but the out-of-pocket cost was astronomical. Unlike intravenous chemotherapy that is administered in a doctor’s office and included under medical coverage, oral cancer treatments are covered through pharmaceutical benefits. Rather than spending a monthly fixed co-pay of about $30, I had to pay a portion of the total drug cost. In my case, this was $2,000 per month.

I was unable to afford this crucial medicine, and I knew I was not alone. I wanted to give a voice to cancer patients in Pennsylvania and beyond. I teamed up with LLS on a seven-year effort to advocate for oral parity legislation. I attended legislative meetings and lobby days, spoke with media and reached out to legislators.

On July 8, 2016, Pennsylvania enacted oral parity legislation into law, thanks to the efforts of LLS, its advocates and patients. My involvement with LLS has only deepened since then. This year, I participated in Man & Woman of the Year, and raised $54,000. I’m proud to continue sharing my story with others, both through my advocacy work at the state and federal levels, and at LLS chapter campaign events. I will continue to advocate for LLS until we find a cure.

Federal Healthcare Advocacy

As Congress debated changes to federal healthcare, LLS advocated that proposed federal healthcare legislation should provide access to stable, quality, affordable coverage to the thousands of blood cancer patients impacted.

  • 25,000+ advocate letters
  • 2,000+ calls
  • 300+ in-person Congressional meetings
  • 8 formal letters and public statements

21st Century Cures Act

LLS helped pass the 21st Century Cures Act into law, ensuring reform that will enable the FDA to speed the review and approval of new therapies. This bipartisan bill committed nearly $5 billion in additional funding for the National Institute of Health over the next 10 years, funding that is critical to sustain the current momentum to advance our understanding of the treatment of cancer, including blood cancers.

  • More than 30,000 letters were sent to members of Congress
  • 100’s of calls were made to house leaders
  • 13,000 letters contributed to the passage of the 21st Century Cures Act

Cost of Cancer Care

The rising cost of care for blood cancer patients has reached a boiling point, with an increasing number of patients foregoing their medications or reducing the dosage or frequency of their doctor‐prescribed treatments solely for cost reasons. While the cost of drugs makes headlines almost daily, and accounts for 10 percent of health expenditures by patients according to the Centers for Medicare & Medicaid Services, it is just one element of cancer care that causes stress and impeding access to treatment.

In May 2017, in an effort to call attention to this issue, LLS announced a new public position statement on the cost of care and published a range of policy proposals intended to meaningfully reduce costs and mitigate the financial distress facing many patients with cancer. LLS called on every player in the healthcare system – from patient organizations and drug manufacturers, to insurers and pharmacy benefit managers, healthcare providers, hospitals, state and federal governments, and patients themselves – to embrace reforms that promise relief for patients suffering from financial distress.

Learn more at www.lls.org/cancercost

VOLUNTEER SPOTLIGHT: Amanda Steffy

During my last semester of college, I was diagnosed with chronic myeloid leukemia. Just as I was preparing for track and field season, my world was completely shaken. I did a lot of research to cope with my diagnosis. I learned about LLS and how its research funding was vital to the development of my treatment, imatinib (Gleevec), a revolutionary, targeted cancer therapy.

Within a few months after my treatment, I was able to start running again. I returned to training for my final track season and qualified to run the Boston Marathon. I wanted to give back to LLS because it had given me so much. I would not be here today without LLS-funded research. I decided to get involved with Team in Training (TNT). I started as a participant, then became a mentor and worked my way up to assistant coach. My first season with TNT was incredibly healing. My diagnosis had felt frightening and isolating, but being around such positive people inspired me to share my own story.

After TNT, I participated in Man & Woman of the Year and funded a grant for CML research. I’ve continued to be involved in the leadership committee and joined LLS’s advocacy efforts. I’ve been proud to meet with elected officials in Washington D.C. the past two years, and I’ve continued to work with the congressional representative in my home district. This past year, I served as the California Advocacy Committee captain, and remained a First Connection peer for young adults newly diagnosed with CML.

Volunteering with LLS has helped me come to terms with my diagnosis and feel comfortable opening up about my experiences in the hopes of helping others.