As we move more deeply into this time of social distancing, it is helpful to reflect on where we are as a myeloma community. Being proactive appears to be paying off. For example, the International Myeloma Working Group (IMWG), a collaborative group of top myeloma investigators around the world, are strongly connected and able to react quickly in a time of crisis. After checking in with this amazing network of experts this week, the good news is that myeloma patients have been staying safe at home.
Myeloma Patients in Asia
The COVID-19 crisis started in Asia. What has been the impact for myeloma patients there?
Researchers in the IMF’s Asian Myeloma Clinical Trials Network (AMN) tell us that myeloma patients are safe. AMN sites in Beijing; Shanghai; Korea (with multiple myeloma centers); Singapore; and Japan (through the Japanese Myeloma Society), report zero cases of COVID-19 in myeloma patients and no COVID-19-related deaths. In Korea, there were, for example, 109 overall COVID-19 deaths, but none for myeloma patients. In Singapore, only 2 deaths (in total), and in Japan, a total of 52 deaths.
Experts I spoke with attributed the safety of myeloma patients to the widely accepted guidelines for myeloma patient care in Asia, which are designed to be conservative and always err on the side of caution. It appears that myeloma patients universally stayed home. Myeloma doctors report that when any patients came to the clinic, they were seen with extreme cautions, using masks and careful handwashing, which are standard of care in Asia, where many infections are a concern. (We are grateful to the AMN doctors for their rapid reports on myeloma patients during the COVID-19 outbreak.)
Bottom line: Strong precautions can and do work.
Myeloma Patients in North America and Europe
Unfortunately, there are patients with myeloma who have experienced COVID-19 infections, especially in the hard-hit areas of Italy, Spain, and France. However, the numbers are relatively small (just a handful of patents, fortunately). In Italy, patients and deaths have been in elderly fragile patients late in the disease. We are awaiting full details from France and Spain, where at least one death tragically occurred in a recently diagnosed patient undergoing a first cycle of triple therapy.
As of March 25, 2020, only two patients have been reported in the U.S.: one in New York City and another in Houston. With the chaos and difficulties that characterize the coronavirus pandemic, this limited impact on myeloma patients so far is somewhat reassuring.
Bottom line: With the growing crisis, we need to have maximum precautions in place. Please stay home and follow the guidance found in my prior Week in Review blogs, our Myeloma Patients’ Top 10 Questions About COVID-19, and the IMF COVID-19 information page.
Additional Helpful Information
- Lost sense of smell: Doctors groups are now recommending COVID-19 testing and isolation for people who lose their senses of smell and taste. According to reports from around the world, a loss of the sense of smell is an unusual and unique feature of early COVID-19 infection
- In the UK, it has been linked to tragic consequences: ear, nose, and throat (ENT) specialists have been at high risk of COVID-19 infection after performing examinations and procedures. In Korea, 30% of 2,000 patients who tested positive reported a lost sense of smell
- In Germany, two-thirds of 100 COVID-19 positive individuals diagnosed with coronavirus questioned reported a loss of their sense of smell. It seems to be generally linked with less dangerous disease—for example, there is usually no pneumonia nor lung issues. Patients recover their sense of smell, although it seems to take some weeks and may not be a 100% recovery.
- Guideline: In situations where testing is not feasible and/or results are not yet available, recommendations are being made for a self-isolation period of a minimum of 7 days for those losing their sense of smell. I believe this is a sensible approach to limit further spread.
- Risk factors for serious infection: We have all been acutely and appropriately concerned that myeloma patients’ compromised immunity due to the disease and its treatments puts them at risk. But other very important factors, called comorbidities, also need to be considered, including:
- INCREASED AGE, especially 80 years and above, puts people at greater risk. However, as we have seen, all ages are at risk.
- MEN are at greater risk than women, for unknown reasons. This was linked to smoking in China, where many more men smoke and have related underlying lung disease. In the U.S., vaping is certainly a concern.
- CARDIOVASCULAR DISEASE is an important risk, especially high blood pressure. The COVID-19 virus binds to ACE (angiotensin converting enzyme) receptors on cells for entry. High blood pressure is treated with ACE inhibitors, which increase ACE2 receptors on cells in the lung, kidney, intestines, and blood vessels. The ACE2 receptors are very much increased in diabetes. This begins to explain why COVID-19 is more likely when these issues are present. In China, among those who became critically ill, high blood pressure was present in 23.7% of patients, while diabetes affected 16.2%. (For those who may be concerned, alternatives to ACE inhibitors are called calcium channel or beta blockers. These include medications such as Norvasc/Procardia or Lopressor/Tenormin.)
- Clusters of infection: Increasingly, we are aware that COVID-19 in different regions comes from clusters of disease. Each cluster has unique factors. In the U.S., what The New York Times called “Party Zero,” was held in the Connecticut suburb of Westport. About 50 people gathered for a 40th birthday celebration. A 43-year-old businessman from South Africa attended, then became ill on his flight home. He is thought to be patient zero, who ended up infecting over half of the group. This is considered a super spreader event. Ultimately, Fairfield County, where Westport is located, developed 270 cases of COVID-19, 65% of the total for the entire state. The infection spread wildly before guests realized they were infected several days later.
- Studying clusters: A unique study of clusters has begun at the site of the IMF-supported Black Swan iStopMM project in Iceland. In an emergency fashion, Prof. Kari Stefansson, CEO of deCODE genetics in Reykjavik, transformed the company’s sequencing center (which is being used for the sequencing of MGUS/SMM/MM patients in the iStopMM study) to voluntarily screen the people of Iceland for COVID-19. This is a brilliant and innovative initiative to understand the occurrence and spread of the virus. (Prof. Stefansson is the scheduled keynote speaker for the 2020 IMWG Summit.)
Early findings show that the cases of coronavirus occurring in Iceland stem from three clusters originating in individuals returning to Iceland from Italy, Austria, and a soccer match in the UK. With early tracking, these clusters are being shut down to prevent further spreading. In addition, a tantalizing finding is that there may be two strains of COVID-19—one more dangerous and infectious than the other. This may explain the variation in disease severity in different clusters. Clearly, China, Italy, and Spain are dangerous clusters.
Other factors affecting disease severity is the size of the viral load of COVID-19 as part of the initial exposure and the underlying susceptibility of the patient. It will be great if this kind of information can be developed for the U.S. disease patterns to help guide the public health responses
Action Items for Myeloma Patients Now
- Make all routine contacts by phone, email, or telemedicine. (With the FDA’s recent approval, even your pet’s veterinarian visits can be done via telemedicine.)
- Avoid grocery shopping by ordering groceries delivered. Here is an extremely helpful YouTube video that offers very specific tips for unpacking delivered groceries safely at home.
- Make sure you have a clear treatment plan in place with your doctor for the next few weeks. Topics to discuss:
- NO visits to the clinic unless essential for ongoing infusions or urgent care.
- Can you skip Aredia or Zometa infusions for now?
- Can any medicines be switched from IV/shot to oral? For example, maybe Ninlaro can be used instead of Velcade or Kyprolis?
- Can the dexamethasone dosage be reduced right now to reduce risks of infection?
- Any planned ASCT (autologous stem-cell transplant) should be delayed.
- Can you continue in a clinical trial? Can some parts be delayed or given locally? A new trial will probably not be started now. It may be necessary to use a bridging therapy (using combination of approved drugs) for relapse therapy for now.
- There may be special questions depending upon your own situation. Please make sure your concerns and/or questions are answered!
Options If COVID-19 Infection Occurs
The top objective for myeloma patients is to avoid infection. However, it is reassuring to be aware that options for management are in progress:
- Vaccine: Unfortunately, this will take quite a while. Using conventional technology—even with a Manhattan Project approach—this will take 12 to 18 months. A new technology using RNA is being assessed and may offer a vaccine in less than a year. We will certainly need the vaccine in 2021 and moving forward, but we realistically cannot expect anything this year.
- Direct treatments or preventatives: There are several options, all of which require testing in clinical trials. These include: Chloroquine and the various antivirals, such as Gilead’s remdesivir, as well as passive immunotherapy—using plasma from patients who have recovered from COVID-19 infection. The FDA has fast-tracked this passive infusion therapy technique
A Final Word to Honor Health Care Professionals
Doctors (including IMWG members), nurses, and entire health care teams are on the front lines of this crisis, which New York Governor Andrew Cuomo has rightfully called a battle. This is brave work done at a high personal risk. Let’s all work and advocate to make sure they have the equipment and resources they need as soon as possible. We do not want to repeat the unbearable suffering and loss that has occurred in Italy, where more than 30 doctors have died from the coronavirus.
Resilience is the essential ingredient right now to help us work together as a myeloma community to help all impacted by this huge challenge.
Dr. Brian G.M. Durie founded and now serves as Chairman of the International Myeloma Foundation and serves on its Scientific Advisory Board. Additionally, he is Chairman of the IMF's International Myeloma Working Group, a consortium of nearly 200 myeloma experts from around the world. Dr. Durie also leads the IMF’s Black Swan Research Initiative®.