By Steven Friedman
Director of Policy & Quality Initiatives, The National Coalition for Cancer Survivorship

More people are surviving cancer than ever before. I am lucky to be one of them‚ celebrating my seventh year of survivorship this year.
Like most survivors‚ I felt confused and apprehensive at the time of my diagnosis. Like many of the nearly nine million cancer survivors in this country‚ I wanted to “give back” and to assist others. My desire to find an organization that focused on survivorship issues has been fulfilled through my work with the National Coalition for Cancer Survivorship (NCCS).

Celebrating its 15th anniversary‚ NCCS was founded by cancer survivors and cancer care professionals to assure quality cancer care for all Americans.
Located in Washington‚ D.C.‚ NCCS focuses on issues that affect access to timely and high–quality cancer care. It supports Medicare reimbursement reforms that more accurately reflect the cost of providing cancer care in the office and outpatient hospital settings. It encourages reform of the U.S. Food and Drug Administration to allow for more efficient review of new anti–cancer agents‚ and it acts to ensure responsible increases to the budgets of federal agencies that fund cancer research and control programs. It also supports research into cancer survivorship activities that deal with the short—and long—term effects of treatment.

NCCS fights for cancer care that is evidence based‚ uncompromised by financial barriers‚ and founded on shared respect and understanding between provider and patient.

Of particular interest to NCCS are the multitude of survivorship issues becoming apparent to survivors and their physicians. What will be the risks of treatment 20 years later? What treatment might cause another cancer?
NCCS believes the time is right to begin to answer these questions for future generations of survivors.

Improving cancer care requires more than the success of organizations such as NCCS. It requires the involvement of diverse communities nationwide and advocacy at the grassroots level by individuals such as yourself.
You need to be educated on healthcare issues‚ so you can make informed decisions based on facts. You must also be willing to meet with lawmakers and elected officials as an informed survivor‚ whether you are advocating at the local‚ state‚ or federal level.

Genuine advocacy has less to do with lobbying for passage of any particular piece of legislation and more to do with educating our lawmakers to the issues at hand to increase their understanding of policies that affect our lives. Encourage your family‚ friends‚ and colleagues to get involved and help influence the change needed to improve the care that cancer patients receive.
NCCS is one of many national cancer organizations working on issues in a collaborative fashion through a forum known as the Cancer Leadership Council (CLC). The CLC comprises 30 advocacy and professional groups‚ 18 of which inform their advocacy efforts largely from the point of view of their survivor constituencies‚ including those representing breast‚ lung‚ colorectal‚ pancreatic‚ ovarian‚ blood‚ and prostate cancers.

You may find that one of these groups provides you with an opportunity to advocate for the issues that concern you.

You can view the CLC member list at www.cancerleadership.org.
NCCS can help you research and understand some of the issues affecting the cancer community. Go to the NCCS website at www.canceradvocacy.org.
You can review policy statements‚ review our online resource guide‚ or link to www.canceraction.net to write a letter to your legislator urging them to support a particular issue. You can go the CLC website and review letters sent by the member organizations.

You can review the language in a federal bill and see whether your elected officials support it at www.congress.gov by entering the bill number or key words.

My cancer diagnosis will always remain an indelible part of me. As an informed and responsible advocate‚ and through my networking with other national organizations like NCCS‚ I have the privilege of contributing to the survivorship of all people with cancer.

Testicular cancer survivor Steven Friedman has been with NCCS since 2000. In June of 2002 he and his wife Michele became parents with the birth of their son‚ Zachary.