It’s In You to Give
“Blood. It’s in you to give”. If you live in Canada, you have surely heard this slogan for Canadian Blood Services (CBS) more times than you can count. In addition to MS, I have Congenital Adrenal Hyperplasia (CAH). I was diagnosed at age six with CAH, and I have been treated with steroids ever since (first cortisone and then prednisone). CAH is a genetic disease (thanks Mom!), so there is no risk of transmission through blood transfusion. However, CBS’ position is that donors taking oral steroids should be deferred for at least one week after their last prescribed dose. I’ve been taking oral steroids daily since the age of six and I will continue to do so for the rest of my life. There will never be a last prescribed dose. My 5mg per day of prednisone left me permanently ineligible to donate blood. Several years ago, I sought special permission to donate. This involved CBS seeking input from my medical team. I was finally granted this permission, but just in time to become pregnant and once again ineligible. By the time that I was eligible again after the birth of my son, we were in the midst of the COVID-19 pandemic, and as the pandemic dragged on, I was diagnosed with MS.
CBS’ position concerning MS is: “People living with multiple sclerosis are currently not able to donate. Little is known about why and how this condition occurs. We continue to evaluate the eligibility of people living with multiple sclerosis.” I am once again indefinitely ineligible. This is frustrating after having chosen to jump through hoops to make myself eligible.
There is often debate and confusion around whether individuals with MS can donate blood. This is a frequently asked question in some MS Facebook groups. The conversation usually goes something like this:
Q: “Can we donate blood while taking Kesimpta?”
A1: “Of course! I just donated blood last week.”
A2: “No, we can’t donate blood because we have MS.”
A1: “That’s ridiculous, I just donated blood last week.”
A3: “It depends on where you live. Some jurisdictions accept blood donations from those with MS and others don’t. You will have to check with your local blood bank.”
A4: “Not in Canada.”
A5: “Not in the UK.”
A6: “You are taking a drug that alters your blood composition. No, you can’t donate.”
A7: “Kesimpta only depletes certain B cells. Our red blood cells are fine and can provide life saving transfusions.”
A6: “Let healthy people donate.”
A8: “Red Cross in the US only excludes Aubagio, I donate all the time.”
(Note: This is not copied from any particular discussion, but it is a good summary of several similar discussions that I have observed and participated in regarding blood donation and MS.)
The actual answer is that while some jurisdictions allow individuals with MS to donate blood, others don’t.
One reason why some jurisdictions allow individuals with MS to donate blood is that the disease is not considered to be transmissible through blood transfusion. The position of the World Health Organization (WHO) is that individuals with MS who are stable and have not had a relapse in the past four weeks can donate blood. Similarly, the American Red Cross allows individuals with MS to donate blood if they are feeling well and have not had any recent exacerbations. However, they do not permit those taking the Disease Modifying Therapy (DMT) Aubagio to donate.
Other jurisdictions, including Canada, do not allow individuals with MS to donate blood due to concerns about the potential impact on the health of the recipient. The underlying cause of MS is unknown. While WHO takes the position that MS is not transmissible through blood transfusion, CBS takes the more cautious approach of not ruling this possibility out while the cause of MS remains unknown. Additionally, there is concern that individuals with MS may be more susceptible to infections, which could increase the risk of transmitting infectious diseases through blood donation.
Another reason why some jurisdictions do not allow individuals with MS to donate blood is related to the use of DMTs to manage the disease. Many DMTs used in the treatment of MS have been associated with changes in the blood, such as reduced white blood cell counts. This could potentially affect the safety and quality of the blood donation, and some jurisdictions therefore have policies prohibiting individuals taking certain DMTs from donating blood.
The potential risks of blood donation by individuals with MS are not fully understood at this time. While it is frustrating to hear of blood bank shortages and be powerless to help, I understand why CBS has taken this cautious approach.
Having MS doesn’t pose any safety concerns for the health of the individual donating blood. However, even healthy blood donors may feel a bit tired for a couple of days after donating blood. Fatigue is a common symptom of MS, and donating blood may exacerbate fatigue in a donor with MS.
If you are eligible to give, consider doing so. Giving blood is one of the most generous donations that you can make, because it can quite literally save another person’s life. If you need a few more reasons: 1. Regular blood donation has been correlated to lower blood pressure and lower risk of heart attacks; 2. It burns about 500-650 calories for your body to replace the blood (sounds like a free donut to me!); 3. You get a mini health check-up by donating in the form of a blood pressure check and iron levels check.
For those in Canada: www.blood.ca
While having MS prevents me from donating blood, it doesn’t prevent me from being an organ donor. Similarly, having CAH doesn’t prevent me from being an organ donor. Per CBS: “Anyone can be a potential donor regardless of age, medical condition or sexual orientation. Even individuals with serious illnesses may sometimes be donors.” A single organ donor can save up to eight lives. While I hope to live to be old and grey, if I am killed in a car accident I want to save as many lives as possible. I’ve always felt this way, and I’ve had “organ donor” stamped on my OHIP card (for those outside of Ontario, the insurance card for our publicly funded healthcare program) since I switched from the old red and white card to the photo identification card when I was a teenager.
My OHIP card has been stamped with my intent to be an organ donor since I was a teenager. “Z9” indicates that a person has consented to any needed organs and tissues to be used for transplant only, while “9Z” indicates that a person has consented for any needed organs and tissues be used for transplant and organ and tissue research.
Just like with blood donations, there are different rules regarding organ donation between jurisdictions. Ontario is an “opt-in” jurisdiction, meaning that those wishing to donate their organs or tissue must expressly consent. This can be done by registering online at www.beadonor.ca, or at Service Ontario, for example when renewing your OHIP card or driver's licence. Nova Scotia, on the other hand, has become an “opt-out” jurisdiction. This means that it is presumed that adults consent to organ donation unless they have expressly indicated otherwise. Ultimately, family is consulted before organ donation occurs, and it can help your family in a time of crisis to move forward in fulfilling your wishes if you have taken the time to communicate these wishes in advance.
Speaking of donations, have you donated in support of my MS Walk 2023 fundraising drive? You can find my fundraising page here: https://msspwalk.donordrive.com/index.cfm?fuseaction=donordrive.participant&participantID=24442
Thank you to everyone who supports me in this fundraising initiative. It truly means the world to me to know that I have so many of you in my corner.
