The pandemic has been raging for over two years now, and it has significantly changed the world as we know it. Staying safe from COVID-19 is on the top of our list, along with achieving best care for myeloma. Being fully aware that COVID-19 will be an ongoing threat, it is essential to plan for a future with COVID-19 and to put best strategies in place to stay safe in the longer term.
How to handle the lifting of mask mandates
Self-protection is a personal matter thus, despite the lifting of mask mandates, myeloma patients can still decide on what’s best for them.
A recent New York Times article, “Vulnerable to the Virus, High-Risk Americans Feel Pain as the U.S. Moves On,” highlights how many vulnerable groups feel isolated, devalued and left behind.
If a fully vaccinated (especially if boosted) person with a normal immune system gets COVID-19, chances are, that person will fully recover — although some may develop long COVID and experience significant ongoing symptoms for the long haul (which I will be discussing in the section below).
However, things are different for the vulnerable and immunocompromised. Myeloma patients and a whole range of people with health problems still feel the need to protect themselves — and part of that protection includes continued mask-wearing, especially in high-risk situations.
Recent IMF survey assesses the impact of the omicron variant
This past week, the IMF conducted a survey (with patients and caregivers as participants) to assess the impact of the recent omicron surge. A total of 597 respondents (consisting of 508 patients and 89 caregivers) participated in the survey. Vaccination rate (including boosters) was high among the participants — in the 80-90% range. Rate of mask-wearing was also very high, albeit variations in the types of masks used (i.e., N95 or KN95, surgical, or cloth masks).
The key question was: Did you develop COVID-19? (In this case, omicron, since it has been the dominant variant in recent weeks).
The outcome: 69 out of 508 patients (14%) had COVID-19; 12 out of 89 caregivers (14%) also developed COVID-19. Of 508 patients, only 4 (with one unvaccinated) or less than 1% were hospitalized. Meanwhile, none of the 12 COVID-19 positive caregivers (with 91% vaccinated) were hospitalized.
This is really quite good news. There are very few significant problems — but keep in mind that this is also due to a very high-level of precaution.
Additionally, ongoing symptoms are certainly occurring in some patients — and this can be quite troublesome. A recent New York Times article, “Some long Covid sufferers try to exercise but end up feeling worse,” highlights issues that patients with long COVID-19 experience with exercising. Inordinate tiredness after exercise can be very disabling for some.
The full IMF survey results will be presented later, but other notable points were:
- Among those who developed COVID-19, there was no significant difference between patients on daratumumab (33%) and patients who are not on daratumumab (29%). This was a cause of concern but did not turn out to be a risk factor in this assessment.
- COVID-19 infection among individuals who exercised extra caution seemed most linked to events involving travel, contact with the unvaccinated, or with COVID-19 infected but asymptomatic individuals — especially in indoor settings with limited masking.
- A recent study which indicated that some transmission within hospital settings of the omicron variant has also been occurring.
I’d like to extend my warmest thanks to all the patients and caregivers who promptly completed the surveys. We truly appreciate your time and contribution!
I’d also like to thank Robin Tuohy and Jon Fitzpatrick of the IMF for preparing and collecting the surveys.
Changes in needs and expectations
Updated information about COVID-19 has become a necessary and valuable resource. The IMF has created a full web resource page with updated information, plus many videos and blogs with specific updates.
Another helpful development is easier access to virtual consults with myeloma experts. As the pandemic subsides, virtual consultations will remain important and valuable to myeloma patients.
Knowledge about myeloma
Because of the pandemic, there has been a major shift to virtual learning. The IMF is pleased to host many virtual group meetings and other activities. The IMF also provides vital information about myeloma in electronic format.
However, these resources cannot replace the empathetic support provided by in-person meetings. When it is safe to resume in-person meetings, an important level of emotional support will be restored. This particularly important for newly diagnosed patents and younger patients with young families. A new support group has been established for young patients with children, led by an energetic team.
Changes in therapy
With the need to keep myeloma patients safe, there has been a shift to effective therapy — less intense and perhaps, not as prolonged. At times, autologous stem cell transplant (ASCT) has also been deferred. Intense consolidation and /or ongoing intense maintenance has been reconsidered, especially during a virus surge in the community.
There were also reconsiderations on what may constitute as a cure. For example, two or three years of therapy with a follow-up OFF therapy can be a preferred option to recoup immune status.
In addition, recovery of the immune system overall has become an important priority as well as achieving a maximum low level of disease. For example, the one and done approach of CAR T-cell therapy is attractive because of the resulting long remission times OFF therapy.
Access and day-to-day care
The COVID-19 pandemic has accentuated the impact of lack of access to key tools (such as vaccines and therapies) and poor living work and health conditions overall.
A new book, The Phantom Plague by Vidya Krishnan, tells how tuberculosis (TB) shaped history and highlights the major factors which lead to improved outcomes.
The bottom line: improved living standards were a key component, in addition to public health measures and vaccination (BCG for TB) as well as anti-microbial (antibiotic) therapy.
Similar to the omicron variant, tuberculosis thrives in crowded conditions — with children at particular risk. Just like omicron, TB flourishes in individual with HIV/AIDS. These co-factors must be considered in assessing risks.
Thus, for COVID -19, global health conditions cannot be ignored and access to the major management tools — including vaccination, boosters, high-quality masks, antibody therapy, and anti-viral therapy — all come into play to transition from a pandemic to a lower-level endemic situation.
As I have discussed in a previous blog, Evusheld™ (an antibody supplemental therapy) needs to become broadly available for the vulnerable and immunocompromised such as myeloma patients. In a most recent development, the FDA revised the emergency use authorization (EUA) for Evusheld — changing the initial dose (from 150 mg of tixagevimab and 150 mg of cilgavimab administered separately and consecutively as intramuscular injections and repeated every 6 months while SARS-CoV-2 is still circulating) to twice the dosage (300 mg of tixagevimab and 300 mg of cilgavimab).
This means that those who previously received the initial authorized dose (150 mg tixagevimab and 150 mg cilgavimab) should get an additional dose at the soonest possible time, so as to raise their monoclonal antibody levels.
Working to achieve broad availability of this antibody supplemental therapy is something needed and expected to maximize myeloma patient safety. Also, access to Paxlovid™ anti-viral therapy is important and essential in situations where infection is unavoidable and/or has occurred.
The balance of beauty and endless struggles
As life has become more of a day-to-day struggle, it is wonderful to step back and realize that this is the way of the world.
While building our resilience, we must look for and see the beauty among the struggles.
As a young boy growing up by the the North Sea in Scotland, I enjoyed the beach and the ocean so much, despite it being frequently cold and sometimes threatening.
Tide pools are my favorite spots. Here, seaweeds, crabs, and many small creatures are able to survive under the ocean, but for hours open to the sky when the tide went out. I was fascinated by the little creatures scurrying around in the many little pools and among rocky crevices.
A recent book called Life Between The Tides discusses trying to achieve a life which is in sync with nature — in this case, land and sea. As author, Adam Nicolson, stated: “Within the luminous tide pool, enchanting displays of natural beauty are also arenas for endless struggles.”
This is the way of nature. I enjoyed tide pools as a child and revisited them as an adult. I continue to marvel at the vibrant life of nature.
Seeing four colors (instead of three)
To illustrate the marvels of nature, Sentient: How Animals Illuminate the Wonder of Our Human Senses by Jackie Higgins highlights how some people have exquisite vision — they see with four colors instead of three, like the rest of us. This allows them to see the beauty of nature in unimaginable detail. Nature is out there in all its glory, and we are mostly not paying attention.
So, let’s all take time to marvel and achieve the best outcomes possible.