The National Institute for Health and Care Excellence (NICE) is currently appraising COVID-19 treatments for people with symptomatic COVID-19.
To inform this appraisal, we worked with Blood Cancer UK, Leukaemia Care and Anthony Nolan to survey myeloma and other blood cancer patients about their experiences of COVID-19 and COVID-19 treatment.
The patient survey was completed by 552 blood cancer patients, including 102 myeloma patients. Most myeloma patients surveyed tested positive for COVID-19 (88% (90/102)).
The results show that most myeloma patients who tested positive for COVID-19 had manageable symptoms, receiving COVID-19 treatments at home or via a COVID Medicines Delivery Unit (CDMU). Only 11% (10/90) of patients who tested positive for COVID-19 were hospitalized.
Testing positive for COVID-19
72% of myeloma patients that tested positive for COVID-19 (65/90) said they felt scared or anxious when they tested positive.
74% (75/102) of patients were diagnosed with COVID-19 after 16 December 2021, when COVID-19 treatments were made available to immunocompromised patients.
Of the patients diagnosed with COVID-19 after 16 December 2021, 72% (54/75) received treatment for COVID-19. 13% (10/54) received treatment in a hospital, and 59% (44/54) received treatment at home or at a CDMU.
86% of patients said the treatment made them feel better quickly.
Receiving treatment
54% (29/54) of the myeloma patients diagnosed with COVID-19 after 16 December 2021 got treatment within 1-2 days of testing positive for COVID-19 (54% (29/54)).
28% (15/54) received treatment three or more days after testing positive for COVID-19.
Most patients who received treatment for COVID-19 were given it in a community setting. Half of these patients were given treatment at home, while the other half received treatment at a hospital clinic (CDMU).
Only ten patients who tested positive for COVID-19 were admitted to the hospital with COVID-19. Most patients were admitted within two days of testing positive for COVID-19, and most hospital stays were between 1-2 days. No patients reported admission to intensive care.
All patients in hospital were treated with an antiviral infusion, two were given oxygen, and one was given steroids.
Potential barriers to treatment
Having no or mild symptoms was the main reason cited for not receiving treatment after testing positive for COVID-19.
Other reasons for not receiving treatment included being told that their condition or treatment made them ineligible for treatment as the NHS didn’t contact them after testing positive. Some patients only became symptomatic more than five days after testing positive for COVID-19. Therefore they were also deemed ineligible for COVID-19 treatments.
Five patients said they experienced challenges in getting COVID treatment. Four patients said this was because they didn’t receive a call from NHS within 24 hours after registering a positive test, and one said it was because they didn’t know what to do, who to call or how to get the antiviral treatment.
These results are promising and show that most of the patients eligible for COVID-19 treatments got them shortly after testing positive for COVID-19. They also suggest that the current protective measures, vaccinations and treatments, are working well for myeloma patients.