As you all know, the WM community has many members who are immunocompromised.  This can be for several reasons:

  • they are on, or have recently been on, chemotherapy treatment for the disease (especially Rituxin / Rituximab)
  • they are on BTK inhibitors, which also have the effect of reducing our ability to manufacture antibodies in response to vaccines (as has been reported)
  • the disease itself has resulted in lowering IgA, IgG, and other protective mechanisms, as the clonal B-cells proliferate; even without being in active treatment, WMers can be prone to pneumonia and other diseases

These ways of being immunocompromised can mean that, despite multiple Covid vaccines, we have not developed adequate antibodies to the Covid virus.  And so if we happen to come down with Covid, we may need to resort to extra measures.  Those extra measures include Paxlovid, an oral anti-viral treatment approved by Health Canada.  We’ve covered the fact that every province has its own way of approving and doling it out.

Paxlovid comes with one very important restriction: treatment must begin within 5 days of the onset of symptoms.  That means there is a clock ticking from the time your symptoms start, not from when you test positive – which most probably is after symptoms begin.

So it is very important that we know how to turn “Paxlovid is available in my province” into “I’ve got the pills in my hands”.  According to several media accounts, covering different provinces, patients (with various diseases) are running into problems getting the pills in time – that is, within that 5 day window.

We have also had WMers within our community report that they have been blocked (initially) from obtaining Paxlovid, because their last treatment was “too long ago” to be relevant, without taking into account any information on the individual’s level of Covid antibodies, or without taking into account that even without treatment, a WMer may have WM-derived hypogammaglobulinemia (low IgG, especially), which makes them immunocompromised.

Your mileage may vary.  The bureaucracy in each province may be better, or worse, at facilitating access to the drug.

Once you have tested positive for Covid, the steps needed are (not necessarily in this order):

  • Getting a prescription from your doctor
  • Obtaining permission from your province
  • Finding the drug

Things that may help in navigating to pill-in-hand might be:

  • Go to the web site for your province to check their procedure.  Do not follow what you read in the media, as media articles may be written with a different province as their intended audience (or even the U.S.).  We’ve gathered a list of the provincial web pages to try to help.
  • Engage with your own family physician and hematologist.  Check your last IgG level, and have it on hand when you speak with them.  Explain to them that others have had problems, and ask for them to be your champion through the process.
  • If you are already at day 3 with no action, perhaps engaging with the media may help.  The more these bureaucratic issues are highlighted, the more likely they are to be fixed.  If not for you, then at least for others, in the long run.

Finally, be very aware that Paxlovid can interfere with some medications, notably the BTK inhibitors (see this letter from the IWMF, reviewed by DFCI, near the bottom of page 2).  Check with your doctors, pharmacists, or other medical professionals, but especially with your hematologist/oncologist, who knows your situation the best.

One CBC article attempts to help people navigate the maze, but being aware of your provincial protocol and having your medical team be your champion are essential first steps.