How Can You Be a Cancer Patient Advocate?
By Kyle Gasaway
Health care policy is often disconnected from patients, especially cancer patients. Medicare and Medicaid policy can impact a family’s ability to afford chemotherapy and have an impact not only on the cancer patient but on the entire family. If the price of cancer medications is so high that people can’t afford to put food on the table, then health care policy is not working for patients.
What can you do if you are a cancer patient today in the midst of uncertain circumstances around the future of health care in this country? One of the fundamental requirements for an American democracy is the voice of the people. As an active citizen in a democratic society, you can be engaged.
Active engagement is critical for the health and well-being of the community at large. By becoming engaged in politics and learning about health care policy issues, you can make an impact over the policies that affect you and your loved ones. You can make your voice count as a vote in every election — both on the local and federal level! There is an election at least once a year, and there are many opportunities to get involved in the community as a cancer patient advocate.
Cancer patient advocates need to go directly to their representatives and voice their opinion on how legislation will affect them.
But in order to be effective, advocates need to stay informed and up-to-date on the current issues. The Cancer Support Community can help you stay informed and updated on the latest health care policies affecting cancer patients.
For example, in our recent report, “Access to Care in Cancer 2016: Barriers and Challenges” which surveyed over 1200 people, we found that the cost of care was a major barrier to the access and quality of care of patients:
- 42.6% said that their out-of-pocket (OOP) costs were larger than expected; [i]
- Alarmingly, almost one-fifth (17.8%) of respondents reported not filling prescribed medications due to cost. [ii]
If an elected representative does not know the impact of their legislative work, then they are not adequately serving their constituents. Decision makers writing the bills cannot always anticipate the full impact of legislation. Patient protections need to be included in bill drafts, not as an afterthought.
Cancer patients can speak truth to power, with not only their personal experience, but through the Cancer Support Community’s Grassroots Network the collective experiences of thousands of cancer patients. The most effective advocates intertwine their personal experiences and passions into actionable policy to help health care reform. Your voice matters, and together we can create an affordable and accessible health care system that puts patients first.
Advocates, both cancer patients and caregivers, have a duty to give a voice to those affected by cancer. The health care system is there to serve the people in the most effective and affordable fashion but can’t fulfill this goal if advocates don’t voice what’s working and what’s broken.
By joining our CSC Grassroots Network, you give cancer patients a strong voice. You will have the chance to be part of a network that interacts with Capitol Hill and other policy makers on issues important to cancer patients. Sign up and receive action alerts and carefully crafted messages to
[i] Cancer Support Community. (2016). Access to care in cancer 2016: Barriers and Challenges. Washington, DC. 24.
[ii] Ibid., 26.