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Working with Lawmakers to Address the Unique Needs of Cancer Patients

By Ryan Holeywell, Senior Director, Advocacy Communication at LLS | April 15, 2020

As the coronavirus continues its spread, The Leukemia & Lymphoma Society (LLS) has a vital role to play in ensuring our government takes every step necessary to protect cancer patients. With that in mind, we’re sharing with our community what LLS has been doing to make sure the unique needs of blood cancer patients are being heard by the government at this unprecedented time.

First, some background: LLS’s Office of Public Policy is focused on influencing the laws, regulations and rules – at all levels of government – that affect cancer patients. The team, operating in Washington, D.C. and across the country, includes experts in lobbying, grassroots advocacy, communications and policy research. Their goal is to advance public policies that promise the safe and speedy development and approval of new cancer treatments, as well as policies that break down the barriers to care that patients often encounter. COVID-19 hasn’t changed this focus at all. In fact, it makes our public policy work even more critical, since cancer patients and survivors are vulnerable to serious illness if infected with this new disease.

LLS is hearing from patients who are concerned about being able to pay household bills, like their mortgage payments, because they’ve been furloughed without pay and are facing potential job loss as a result of the pandemic. In addition, patients are facing Medicaid barriers – and this is impacting access to the care they need. “I need those benefits now. I’ve got leukemia and polycythemia vera. I won’t survive another 15 months unless I can find a way to pay for the medication that could save my life. This is critical. We need help now,” writes a patient.

LLS is committed to putting patients and their families first during this time. You might have seen the news that Congress passed recently three pieces of coronavirus legislation, totaling more than $2 trillion. As federal lawmakers began formulating the coronavirus relief packages last month, LLS played a lead role organizing 29 national patient advocacy organizations to deliver a letter to Congressional leadership urging swift adoption of the Families First Coronavirus Response Act.

Now law, this measure takes steps to facilitate social distancing and provide no-cost COVID-19 testing, among other things. Currently, Congress is in recess – most lawmakers have left Washington and returned to their districts – but their work and ours isn’t close to being done.  

We continue to push for even more from Congress as well as the White House. Just this week, LLS organized 33 patient organizations to send a letter to Congressional leaders urging them to adopt key reforms in their fourth round of COVID-19 legislation. Additionally, we launched an effort to reach governors in all 50 states, asking them to take action where they have authority. More than 22 national patient organizations are partnering with us in this coordinated campaign, along with additional state and local organizations. 

Together with our partners, we are advocating for policies that we believe are critical to protecting both public health and the interests of patients, including:

  • Expanding Medicaid eligibility and funding so more low-income people can access healthcare during this critical time
  • Removing Medicaid barriers that prevent people from getting the care they need
  • Providing more opportunities for telemedicine to increase social distancing and reduce the risk of transmission of the novel coronavirus
  • Relaxing restrictions on drug refills so patients can ensure adequate supplies and reduce their travel to pharmacies
  • Opening a special enrollment period on so anyone who needs to can buy health insurance right now, ensuring affordable access to healthcare
  • Ensuring access to COVID-19 treatment, testing and vaccines (when available) for all patients who need it
  • Protecting patients from surprise medical bills that might come from treatment and testing for COVID-19
  • Providing additional funding for community health centers to address this crisis

Thankfully, LLS works with a vibrant grassroots advocacy community, comprised of many passionate volunteer advocates who are helping to elevate the voices of cancer patients during the pandemic. So far, they’ve sent more than 6,800 letters to Congress urging lawmakers to adopt policies like those described above – and the number of letters grows every day.

We invite you to join us as we continue to take action to protect cancer patients during the coronavirus crisis and beyond. We promise to keep standing up for our community and keep you up-to-date on how our shared efforts help to move the needle.


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