Lee Lynch

Coronavirus has turned the world upside to down over the past three months, and advocacy organizations have been along for the devastating ride. I spent time talking with various national patient and consumer advocates about the impact the virus is having on their organizations, constituents and advocacy efforts.

The lockdown and shelter-in-place orders issued in March by governors and mayors across the country immediately threw the everyday activities of advocacy organizations into question. Advocacy organizations nationwide experienced a period of asking, “What now,” as they quickly came to realize the traditional way of engaging their stakeholders and constituents was not going to work – at least until the impact of the pandemic subsided.

Everything from their central patient support line, fundraising walks, major education initiatives and carefully planned legislative agendas were, at least temporarily, no longer applicable or possible.

Even engaging in-person with advocates, policymakers, colleagues, funders and others has been off limits. One-on-one events to build awareness and support for important causes were cancelled or postponed through the summer. Advocate fly ins – an important strategy bringing dozens or even hundreds of advocates to Washington to meet with members of Congress over a short period of time – were, in some cases, fully planned but had to be shelved as Congressional offices stopped scheduling in-person meetings with constituents.

To stem the impact of the pandemic on their ability to carry out their missions as much as possible, advocacy organizations have quickly changed course and sought to transform their operations in various ways.

Communicating about the Impact of COVID-19 on Constituencies:

The greatest concern for those organizations representing patients is the widespread and measurable impact of COVID-19 on patients’ interaction with the health system and their own care.

“We are already seeing a significant impact on cancer patients and survivors [from COVID-19],” said Pam Traxel, Senior Vice President of Alliance Development and Philanthropy for the American Cancer Society Cancer Action Network (ACS CAN). “Our recent Survivor Voices survey of more than 1,200 patients showed that more than half of those surveyed have had some impact on their care due to the virus and of those impacted, nearly one in four have experienced a delay in care or treatment.”

Traxel noted that ACS is already preparing to include a dedicated section on the impact of COVID-19 for those living with cancer in the organization’s upcoming Cancer Facts and Figures annual report, which comes out each January.

“What we want to think about is going beyond epidemiology to how to help cancer patients get through this. Oncology providers who have stayed open through the pandemic are already experiencing a tremendous patient need – to the point where they are moving stuff out of storage closets to serve more patients and still ensure appropriate physical distancing.”

The coronavirus pandemic has also had an outsized impact on minority populations. An analysis released in April by the Kaiser Family Foundation showed that black Americans and Hispanics are disproportionately affected – with a higher of cases and deaths resulting from the virus.

Tammy Boyd, Chief Policy Officer with the Black Women’s Health Imperative, said advocates representing the black community have responded with creative online partnership-driven efforts that have drawn tens of thousands of interested participants.

“DJ D-Nice and the NAACP have separately hosted various celebrities, CEOs and politicians on online events and webinars about COVID-19,” said Boyd. “These virtual forums are drawing 50,000 or even 100,000 people. In some instances these audiences are becoming advocates themselves on everything from funding and action to reduce the high impact of COVID-19 on minority populations to ensuring mail-in voting rights.”

BWHI has created a Surviving COVID-19 section - - prominently displayed on their website, which provides tips and tools about “health and safety, emotional wellness, parenting, healthy lifestyles and financial literacy during the pandemic.”

Fighting for Funding in COVID Packages:

Many advocacy organizations have banded together to collaboratively advocate for funding from the various COVID-focused pieces of legislation to meet specific health needs.

“The mental health community worked together to seek funding in the COVID 2 and 3 packages for certified community behavioral health centers (CCBHCs), emergency grants for behavioral health, funding for a suicide prevention hotline and heightened mental health needs of Native Americans during the pandemic,” said Andrew Sperling, Director of Legislative Advocacy at NAMI. He added that the community was also able to improve regulations relating to confidentiality of patient records through COVID 2 – a legislative priority that took five years to achieve.

Drawing Attention of Relevancy of COVID-19 to Current Initiatives:

Sally Greenberg, Executive Director of the National Consumers League, said the pandemic forced her organization to focus on the things they do best – including their focus on fraud.

“Whenever there is a catastrophic event, whether it’s a natural disaster or the current pandemic – fraudsters come out of woodwork,” noted Greenberg. “They send emails and make phone calls to try to entice people to buy products relating to the situation that have no basis in science or fact or that the consumer will never actually see. For COVID-19, it’s everything from lotions that don’t work to masks and protective gear the fraudsters don’t actually have access to.”

To combat coronavirus-related fraud, the National Consumers League launched a radio media tour that included about 30 interviews over a week and a half and reached about three million consumers.

All of the advocates with whom we spoke were in agreement that, whatever the focus of your initiative, it must be positioned through a COVID-19 lens. “It’s the one thing on everyone’s mind,” added Boyd. “We still have to get our information out there. It’s going to be a long time before we go back to normal, and if it’s not related to COVID in some way, people aren’t really going to be interested.”