Posted by November 10th, 2006
Editor’s note: Rob Michelson is a two-and-a-half-year survivor of stage IV rectal cancer. He has received radiation, numerous surgeries, and a variety of chemotherapies, and is still undergoing multi-modality treatment. Diagnosed at 37, Rob has managed to continue working nearly full-time, and be a husband and a father of three small boys, ages 7, 5, and 3.
Rob is an active participant in the Eastern Cooperative Oncology Group’s (ECOG) patient advocate committee, and has recently connected with C3.
As we come off the month of October, I have been reflecting on the colorectal cancer advocacy movement.
October is known in the cancer community and in the world as Breast Cancer Awareness month. As such, it is a difficult month for many of us in other cancer communities, such as colorectal cancer.
While we know that it took decades for October and breast cancer to become synonymous, it is nonetheless frustrating for those of us in the colorectal cancer advocacy community that March seems far away from gaining that level of recognition.
It is helpful at this time to reflect on some facts.
Fact: C3 is new.
It is incredible C3 has come this far in just 18 months in existence. C3 came out of a strong desire to do more than just “making people aware”, more than just “getting people to talk about CRC”, more than just “raising funds for awareness”, more than just “getting together”, more than just “supporting each other”…. C3 is about More. More Action, more Advocate Education, more Legislative Impact, more Funding, more Impact at FDA and NCI , more Research, and more Drugs in the Pipeline.
Fact: Building a base is important.
C3′s greatest asset is building the base, forming relationships in the cancer community, forming relationships with researchers, growing our network of advocates, training these advocates, and forming relationships with those on Capitol Hill.
Cancer does not discriminate by congressional district. Yet as the Hill has been transformed in recent days, we should reconnect with those in our base from districts whose representatives have new power.
These relationships provide immense value over time. These relationships allow us to build C3’s reputation. As C3 builds its reputation with our elected representatives, we gain legitimacy and trust, and empower ourselves to have an effective voice in Washington, and throughout our state capitols.
Relationships we build will lead to greater funding. Funding to colorectal cancer research will grow as we partner with advocates, such as Lisa Dubow, in establishing a dedicated fund to young investigators doing laboratory research focused on colorectal cancer. Since CRC does not discriminate, people in all walks of life – including government, business, entertainment – are affected. As our base grows, so does the potential for newer funding avenues, such as family endowment grants.
Relationships we build also give us a voice at the table with healthcare professionals. Through C3’s research advocacy efforts, CRC advocates are now seated at the table with Oncology Cooperative Groups, hospital Institutional Review Boards, and at conference dinners with researchers. When advocates are at these tables – we are active leaders, we speak with purpose, we speak from experience, and we have receptive audiences. We gain credibility, we learn, and “they” learn from our unique advocate perspective.
These relationships, without a doubt will result in a larger and diverse, yet more organized pool of grassroots advocates. Each of us brings unique talents to the cause, and as we grow our database and really understand each of our grassroots advocates, we will be better able to tap into each other’s unique talents and skills. Tapping into our database will enable us to speak with a more effective voice and make more effective decisions, and deliver a more focused message to those with whom we want to communicate.
I encourage everyone to keep expanding your own personal networks of contacts – and forward them to C3 when you make new ones.
Fact: Focus is important.
Caregivers of survivors and loved ones of those lost to the disease have so much energy, and they are looking both to C3 and within their hearts to determine the best way in which to contribute.
The fact that there is constant dialogue and there are questions on focus is a sign of our success and of our growth. In my own opinion, there is nothing more important than getting new drugs developed, tested, and available to those in life-threatening situations. Others have different areas of focus, and that’s why C3 exists. There are many of us, who decide to associate ourselves with other CRC organizations, too, and that in no way diminishes our commitment to C3.
C3 itself must remain focused. C3 must determine and revisit its mission and goals periodically. C3 must ensure, to the extent possible, that these goals are measurable and align with the mission, and that the actions align with C3’s goals. We must prioritize the tasks to ensure we remain effective and focused.
Fact: Awareness without Action has no Impact
Awareness requires an associated action to have impact. C3 staff have said this to me over and over again, and it took a long time to finally sink in. C3′s efforts are directed to action, thereby getting the most bang for the buck (the “buck” being our collective time and energy). The action can be “to get people screened” or “to meet with your member of Congress” or “to advocate at FDA”. Through action, CRC awareness becomes a free-by product. And that is where CRC efforts up to this point have diverged from AIDS advocacy and breast advocacy. In those successful movements, the advocacy largely preceded the awareness. Most CRC efforts still focus on awareness. C3 advocates through its action – and that’s what gives it its unique focus within the CRC community and gives it an opportunity to transform the movement for greater impact.
For example, this website is all about action. The more traffic we can generate to the website – the more likely people will be to become One-Minute Advocates, and the more likely people will support essential advocacy efforts and efforts to raise and direct research dollars, such as through the Lisa Fund, to researchers who dedicate themselves and their careers to treating and beating CRC through targeted research. As a result, our base grows, and new advocates are spawned to action.
In the end, such actions lead to awareness. The sea of blue stars, pins, and bracelets in March and year-round (with world-wide recognition) will follow soon enough as a natural byproduct of our work.