Cancer Advocacy: A Precious Resource In A Time Of Immense Needs

Cancer advocacy is not often top of mind, even for patients and families facing active diagnoses and treatments for cancer. However, with the added impact of COVID-19 on our health and well being, advocacy and service in the cancer space is becoming more important than ever.

That is one of the messages that came from a webinar I participated in this morning on “Cancer Care Patient Advocacy Perspectives” as part of a series of discussions being presented over the course of several months by the Association for Value Based Cancer Care. 

Organizations providing advocacy and service to those with cancer are not immune to the impact of the pandemic. Donations are down for many, while requests for services are increasing. And in the midst of all of this people are losing jobs, they are losing insurance coverage for their care, and perhaps most important the Supreme Court is considering whether or not the Affordable Care Act—which has increased the early detection of cancer and helped those with cancer get treatment—is constitutional, potentially creating an advocacy crisis of immense proportion.

We also have a new Presidential administration waiting in the wings, and with new leaders we have new priorities. What is unique about this administration is its personal relationship with the hardships and sorrows associated with cancer. They have a track record in the past of boosting cancer research and highlighting the need for improved access to cancer care, and there is no reason not to expect they will continue that effort as an important part of their core agenda. 

Advocacy will make certain they hear that message and follow through. The hard work, however, is conducted through organizations large and small that represent the needs of the cancer community. 

As we heard in today’s session, those needs are considerable and those needs are great. Transportation, food, payment for medicines and care—all are tugging at the heartstrings of those organizations and their legions of supporters who wish they could do more but find the demand substantial and the resources even more limited that in the past.

As pointed out in our discussion by Trish Goldsmith, who is the chief executive of CancerCare (an organization where I have recently been appointed as a member of the board), we have gotten to a point at this moment in time where food has become the most requested gift for children they serve. 

There is suffering all around us in the cancer community, and we are limited in our ability to respond. Those who normally support cancer-related organizations—especially at this time of the year—are themselves concerned about putting food on their own tables. The checks from people across the country probably won’t come in as generously as they did in years past, given wage cutbacks, job loss, and general depression in our everyday lives as we cope with another surge of this terrible virus. 

And yet we must continue to care, we must continue to advocate. 

If the Supreme Court decides to invalidate the entire Affordable Care Act there will be millions of people in a world of hurt—many of them with chronic diseases including cancer. And although technically public opinion is not supposed to sway the opinions of the court, there is nothing preventing us from making our voices heard, hopefully joined together behind strong cancer advocacy organizations such as the American Cancer Society Cancer Action Network. 

You never know when a strong presence can sway an interpretation one way or the other. No, it supposedly shouldn’t happen but I will bet it certainly does from time to time. Even judges have a sense of humanity, and there is nothing improper about bringing that to their attention through the voices in the public square.

And we shouldn’t lose sight of the important role that advocacy plays in supporting our cancer research community. 

The pandemic has had a substantial impact on innovative cancer research, both in the laboratory and the clinic. Although some funds to support research continue, much of that is focused on COVID while organizations that traditionally fund cancer research—especially young, innovative thinkers which for decades has been the commitment of the American Cancer Society—are finding that they must drastically or completely reduce their funding for this year and likely longer. 

Cancer research doesn’t move on a dime. Great discoveries don’t happen over night. They can take years and years of development, of success and failure in the lab, of trial and error in the clinic before they sometimes become the great successes that they are. These are not overnight stories. They are career stories. And we have now seen a substantial interruption of the flow of that research, which means there will also be interruption in our progress to better understand cancer and what we can do to impede its impact. 

Advocacy plays a role here as well, as we try to figure out the best way to keep the research enterprise going in the laboratory and the clinic. 

For another example, we have long recognized the need to figure out how to expand clinical trials of new cancer treatments, and hopefully diminish the bureaucratic burden and barriers placed in the path of moving clinical trials forward as expeditiously as possible.  

During the pandemic, adjustments have been made to those procedures and some restrictions or requirements have been loosened. The question is whether those temporary changes will persist once the pandemic calms down. Advocacy can help make that progress more of a certainty, which will mean more patients will be able to get cutting edge treatments without the delays we are seeing today and have seen in the past.

So let’s take a moment to reflect on the world around us, and the needs of those with cancer and the organizations that serve them. Let’s understand that as difficult as things may be for us, they are a lot harder for many others. Our cancer advocacy and service organizations need our help both through financial means of donations and our commitments of effort to support their cause. 

They are an incredibly important part of the ecology of cancer care in this country, and with their focus on advocacy and service they can help make it a bit more certain that the care and support we need is there at a time when many need it more than ever.