Well the inevitable happened, and after 2.5 years of shielding (I was shielding pre-covid due to immune issues and sepsis during chemo), I finally tested positive this weekend.
I’d received notification back in January, and again earlier this week that I was on the list of people eligible for antiviral/antibody treatment should I test positive. I received a call from the CMDU just within the promised 24hrs to do an initial triage, and then was contacted by a doctor later that day. Unfortuantely, he said the criteria were very strict, and the stocks were very low, so they were prioritising the most vulnerable, and because my Hodgkins treatment finished 2 years ago, I was no longer eligible. He was apologetic, but said he didn’t have any flexibility.
I’m not going to make a big fuss about it. I don’t doubt that they’re having to make tough decisions about who gets these drugs and I certainly wouldn’t want to take a dose that someone else would benefit from more. The doctor who phoned was a consultant immunologist, so I don’t doubt his opinion on this. I’m curious though what other Hodgkins survivors have experienced? The position seems very unclear about the long term immune suppression suffered after Hodgkins (and high-grade NHL). There is no black and white answer and I think this often means we fall through the cracks. In this page on Lymphoma Action website, they sum up the situation well
There is limited scientific evidence to guide decisions on exactly who is at high risk of severe disease from COVID-19. Public Health England recommends that anybody who has had treatment for lymphoma is considered higher risk but does not give a time frame for how long ago the treatment was.
A consensus of UK lymphoma specialists agree that it is sensible for people who have low-grade non-Hodgkin lymphoma to take precautions to lower their risk even if they have not required treatment for many years.
If you were successfully treated for Hodgkin lymphoma or high-grade non-Hodgkin lymphoma many years ago and your lymphoma has not come back, the situation is more complicated. Your GP or specialist will consider lots of factors to help determine if you might be at higher risk of serious illness due to COVID-19. This includes:
- the specific type of lymphoma you had
- how long ago you were treated
- the exact treatment you had
- any late effects of treatment you might be at risk of
- any other medical conditions you have
- your individual circumstances (for example, your living situation or your occupation).
Your GP or specialist will offer advice that is specific to you.
This situation puts people like me in a bit of a grey area - not knowing how big the general covid risk is to us, not knowing whether we’ve been unfairly denied antiviral treatment etc. These grey areas are not compatible with the strict checklist that the CMDU go through with you.
I also wonder how much of this is just because the NHS didn’t buy enough of these treatments. From what I can tell, people like me would be eligible for these treatments in other countries. Maybe if there was more stock, then borderline cases like me would be included.
Anway, I’m off to try and treat it with the next best option available to me - Lemsip and all of my asthma inhalers…