By Chris Pirschel, Staff Writer, and Alec Stone, ONS Public Affairs Director

Trump, Dems Open Drug Price Talks

Rising prescription medication costs has been a major focus area for both the Trump administration and the 116th Congress. In January 2019, both the House and Senate committees of jurisdiction held public hearings on soaring drug costs. Despite constant media attention and mounting pressure from government officials, no pharmaceutical company executives chose to testify. Congress threatened to subpoena the industry if it happened again.

Similarly, President Trump had his administration publicly commit to making prescription drugs more affordable through his presidential blueprint to lower prescription costs. Department of Health and Human Services Secretary Alex Azar made several speeches about rebates and transparencies to streamline the drug pricing process. In fact, proposed changes to Medicare Part D would provide physicians with tools to inform patients about drug costs, whether the drug is covered by their insurance, if cheaper options exist, and more. Ultimately, through a more informed purchasing process and collaborative decision making with physicians, policymakers hope this proposal could help consumers access lower-cost treatments. The White House has gone so far as to meet with Democratic leadership to begin real discussions on how to implement this through regulatory agencies. Learn more about how Washington is tackling high prescription drug costs on the Oncology Nursing Podcast.

Cost, Location Among Access Barriers to Clinical Trial

Access to clinical trials—as well as the oncology nursing staff trained to work on them—is a challenge for many institutions. ONS has been talking about costs, availability, transportation, location, and paperwork barriers in clinical trials for years and recently met with leaders at the National Institutes of Health and U.S. Food and Drug Administration to continue the conversation. The agency leadership acknowledged the substantial institutional barriers to clinical trials—presumably originating from patient safety efforts—that prevent some patients from accessing potential life-saving treatments.

Participation rates hover around 8% for clinical trials of treatments for adult patients with cancer but jump to about 30% for pediatric patients. Some suggest that’s why pediatric cancer survival rates are proportionately just as high: the clinical trials are advancing pediatric therapies much more quickly. Federal agencies have admitted that more needs to be done to encourage patient participation, and ONS will work with leadership to help increase access in clinical trials.

Survivors Are Living Longer, Facing New Challenges After Cancer

Few stories are as impactful as the ones that relate first-hand experiences, and Susan Leigh, a former oncology nurse and cofounder for the National Coalition of Cancer Survivorship, recently talked with USA Today about her survivorship journey in a very personal way. Forty years ago, treatments and post-treatment conversations were completely different than how patients are educated about their disease now—especially concerning secondary cancers. Now, providers are more aware of and equipped to discuss survivorship with patients, but the advocacy doesn’t end.

ONS promotes patient-centered care, and that means speaking truthfully and frankly to policymakers about the cancer experience and the challenges of survivorship. Oncology nurses are key to the process and support patients throughout their levels of survivorship. Sharing stories and experiences with legislators ensures that patients are not just heard but seen after their treatments end. The National Cancer Institute is updating its definition of survivorship, and ONS is working with congressional offices on legislation to support cancer survivors. Admittedly, there’s more work to do, and oncology nurses be a voice in this process.