For last week’s Third M, we asked members of the media as well as individuals from media-adjacent organizations to weigh in on social media follows, coverage blind spots and more. This week, with assistance from Wego Health, we ran the same questions by patient influencers – who, in many cases, had a distinctly different perspective. The MM&M patient influencer panel included: Amanda Greene (LA Lupus Lady), Marie Dagenais-Lewis, Candace Lerman (Rare Candace), Frank Rivera, Britt Clark, Deborah Lee Andio (Chronically Grateful Me), Barby Ingle, Dr. Maria De Leon and Lynn Julian.
What have been your COVID-19 must-follows on social media, and why?
Greene: On Twitter, I follow #HighRiskCOVID19, which was created by an innovative group of patient leaders to foster community support for information, resources and one another. For mental health, I follow Channel Kindness on many social media platforms as well as ChannelKindness.org, which offers tips and links for more resources to support the community.
Dagenais-Lewis: I became active again in patient advocacy due to COVID-19. I realized my rare disease research foundation was not looking out for the patients, so I started my brand, R.A.R.E., to educate about how Multiple Hereditary Exostoses patients are high-risk for COVID and also how the face mask debate is ableist.
Lerman: I enjoy hearing from former FDA commissioner Scott Gottlieb on Twitter. Dr. Stephen Hahn at the FDA provides great information regarding approved testing and antibody kits, as well as information regarding clinical trial delays caused by COVID-19 and medication shortages.
Who have been the most authoritative COVID-19 voices in traditional media? Is there a piece of reporting or even a social-media thread published between mid-March and now that sticks with you as especially smart, funny, touching or prescient?
Clark: The Lupus Foundation of America has done an excellent job navigating lupus patients through COVID. They were a voice for us when the pandemic started and when hydroxychloroquine medication shortages started, and have continued to support lupus patients as the country reopens. Without their voice to national and state leadership, many more lupus patients would have been dangerously affected by this medication shortage.
Ingle: In traditional media I have been following the CDC’s updates, but I don’t fully trust them.
Andio: I like to see the success stories, ones about those who fought and made it through and got to come home. I want more positive news because the terrible daily news is bad for our mental health. People are afraid to leave their home because others never take precautions.
What has been missing or shortchanged in COVID-related coverage during the last few months?
Lerman: The mask debacle! I have been wearing masks for six years thanks to my compromised immune system from off-label chemo. Wearing a proper mask is so critical. The focus should be on protecting yourself and how to wear a mask the correct way. I think we are seeing spikes in numbers because people aren’t wearing masks correctly, coming within six feet of people and forgetting about hand hygiene because they think cloth masks stop the spread.
Julian: The media is not accepting any responsibility, nor is the President, for telling people they don’t have to wear masks. Masks may not be 100% effective, but they are certainly more effective than wearing nothing. By wearing nothing, you are not only risking your own life, but you are risking mine as well.
Rivera: Too many people are being either misled or outright foolish about mask-wearing and social distancing, and how even though [COVID-19] isn’t always killing people, the long-lasting aftereffects can be so dangerous.
Greene: How those who are immune-compromised are faring if they test positive. What most of the population can learn from those who are high risk for COVID-19. How facts and science are the resources we should be listening to.
De Leon: How do you deal with intimacy issues amid social distancing and how do you cope with loved ones being separated when hospitalized. Most importantly, coverage of how minority groups most affected, such as Hispanics are dealing with COVID-19 (information in Spanish and other languages).
Dagenais-Lewis: The aspect of how ableism is the main driving factor behind the face mask debate. It matters because the U.S. has a long history with modern eugenics and because ableism is so ingrained into our society that able-bodied people and even disabled people who don’t understand they are disabled and affected by ableism complain that the face mask mandate infringes upon their freedom. In my mind, what really infringes on freedom is the fact that disability lacks constitutional protection, not being mandated to wear a face mask.
As the country continues to reopen – and, in some instances, re-close – what would you most like to see in ongoing health-media coverage?
Clark: How high-risk people can continue to have their jobs protected. How high-risk people don’t mind having to continue sheltering in place (as many of us live this life all the time), but that we want to have some guidance on our kids going back to school and our jobs calling us back to work outside of our homes. How to prevent another major medication shortage like the ones experienced recently by those taking hydroxychloroquine.
Dagenais-Lewis: I would love to see more patient advocacy movements, more light being shined on ableism and more feel-good stories that break stigma. I work in the media and all I see is politics, hate and divisive topics that dominate coverage while important topics like disability rights are constantly overlooked. It is upsetting that I pitch stories related to disability and they always get trashed just because society is ableist and truly doesn’t care, it seems. With the equal rights movement going on, now is the time to push for disability rights as well.
Julian: I’d love to see the science proving the effectiveness of masks be part of the media’s narrative.
Lerman: I’d love to see the focus shift to the problems created by delays in care due to COVID-19. I believe we will see some disastrous consequences from delayed procedures, screenings and preventative care. Now is the time to start stressing the importance of regular checkups and proactive healthcare.