By Mary Ellen McFadden, RN, MA, OCN®, Past President and Current Board Member, ONS Baltimore Chapter
Late last year, I had the honor to represent ONS and meet with Maryland State Senator Bryan Simonaire (R-MD) to discuss his bill that seeks to provider greater access to experimental treatments for patients, particularly those with cancer, who otherwise might not have such options. It was an advocacy experience that, regardless of the bill’s passage, reminded me of how important it is for oncology nurses to do what we do best: educate others on planned treatments and symptom management.
We now know that cancer is not a single disease, but rather hundreds of diseases that can have a devastating effect on survivors and their families. This understanding has led to different, and better, treatment options in what is referred to at the National Institutes of Health as “precision medicine.” The idea is to use the body’s own genetic influencers, along with other treatments, to best help solve its own problems.
This change in philosophy and implementation is radical, but logical. It means that a shift must occur in health care to enable this kind of treatment to happen. Part of that is to break down various barriers that could prevent success or access. As advocates, oncology nurses seek to provide patient-centered, coordinated care through evidence-based research.
However, there are times when a patient has exhausted all other options and needs alternative avenues of treatment. Participation in clinical trials is the standard and regulated process that generates much needed data, often resulting in U.S. Food and Drug Administration (FDA) approval of investigational drugs and products. Benefits of such trials can range from extension of life to disease stabilization or enhanced symptom management.
ONS supports unencumbered access to participation in clinical trials for comprehensive cancer care delivery and strongly advocates that racial, financial, and cultural disparities, in terms of access to clinical trials, be eliminated. Expanded access, also called compassionate use, outside of the usual treatment paths can also provide opportunities for patients who may not otherwise have access to these options.
To date, more than two dozen states have enacted legislation giving terminally ill patients the “right to try” investigational drugs prior to their official FDA approval. On January 28, 2016, Senator Simonaire introduced his bill supporting this process in the Maryland State Senate and a companion bill was cross-filed in the Maryland House of Delegates. Hopefully a positive final vote will take place later in the current legislative session.
Read the letter ONS submitted in support of safe access issues for patients. There are opportunities for oncology nurses to educate decision-makers and my work at the state general assembly level was another way for me to talk about patient-centered, coordinated care. I look forward to more experiences.