Cancer, COVID, and Vaccinations: The Patient Perspective at ASCO 2021
Inspire is presenting the results of two separate surveys during the American Society of Clinical Oncology® (ASCO) virtual conference being held June 4-8. Chosen from the more than 5,400 abstracts submitted for the 2021 ASCO Annual Meeting, the studies focus on COVID-19 vaccine hesitancy and reactions to the vaccine among patients with cancer.
Inspire’s cancer community
Inspire has almost one million members who are patients with cancer and their caregivers. In the last 15 years, over three million posts (3,555,105) have been written by patients and caregivers discussing testing, treatments, genetics, side effects and the myriad of feelings and experiences when faced with a cancer diagnosis. Inspire’s oncology community includes those with the more common cancers like breast cancer, lung cancer and others.
Inspire also helps those with rare cancers: examples include anaplastic astrocytomas1 (nearly 1000 Inspire members), a rare brain tumor that affects 5 to 8 people per 100,000, vulvar cancer (nearly 2000 Inspire members) which affects 6000 women in the US each year, and leiomyosarcoma2 (nearly 1000 Inspire members) which accounts for 7-11% of the 15,000 soft tumors diagnosed in the US each year.
Impact of COVID-19 on Oncology Patients
For Inspire’s community of oncology patients, the SARS-2 Coronavirus pandemic has been terrifying. Cancer patients have experienced a disproportionately higher mortality rate due to COVID-19. On Inspire, those who had the virus and survived wrote of their ordeal with the virus. One advanced lung cancer patient stated,
I survived…ICU, then isolation. I was also septic. No ventilator. Not a fun thing. Still have lingering fatigue….I went to pulmonary doc, she sent me straight to ER…. Took me back right away and doc told hubby “she’s going into ICU, 1 in 3 don’t make it when they’re septic.” Was in a little over a week total.Started with sore throat and killer headache. I had all of the first symptoms that were out. Vomiting, D, trouble breathing, major fatigue, fever, very weak…
Others experienced missed opportunities for clinical trials and care due to the need for social distancing.
My sister has been waiting patiently to get in a clinical trial, but now the major cancer centers have stopped accepting new patients because of the Coronavirus. For many with rare ovarian cancers or advanced cancer, a clinical trial is the only hope. This is so distressing. Is anyone experiencing this? What can we do? Cancer patients’ lives are important too — two, three or more months to wait until we can control the Coronavirus? Cancer patients cannot wait that long.
After all of these challenges, how would patients with cancer respond to the rapid development of a vaccine?
Research on Cancer and COVID-19 Vaccination
In collaboration with Inspire, Don Dizon, MD, professor of medicine at Brown University, director of COSMO (Collaboration for Outcomes using Social Media in Oncology), and Inspire Research Accelerator program partner; and Stuart Goldberg, MD, Inspire medical advisory board member, each led a study resulting in Abstracts #1531 and #2621 respectively.
In the survey research presented in Abstract #1531, “People with cancer are likely to accept the COVID-19 vaccine, but politics tracks with attitudes: An Inspire and COSMO survey,” 80% of cancer patients intended to get COVID-19 vaccines. Their interest and intention was greater than the general population at the time of the survey. Despite this, cancer patients had more nuanced attitudes toward vaccination. Significantly more Inspire patients in blue states believed that vaccination was the best defense against COVID-19 when compared to Inspire patients living in red states. This political divide was accompanied by distrust of the government and healthcare industry in a significant minority of cancer patients.
Cancer patients were excluded from the clinical trials conducted on the COVID-19 vaccinations. The survey research presented in Abstract #2621, “Adverse effects of COVID-19 vaccination among cancer patients: Results from an Internet-based survey,” found that cancer patients reported side effects that were comparable to the general population demonstrating vaccine safety in high risk cancer patients.
Inspire offers a trusted community to patients and caregivers. Our goal with this blog, this website and our content is to provide the life science industry access to the true, authentic patient voice. In so doing, we support faithful operationalization of patient-centricity. Take a look at our case studies, eBooks and news outlet coverage.