Canadian Blood Donors Paid For Donations
- by: Judy Picco
- recipient: Mr. Mark Donnison, VP, Donor Relations, Canadian Blood Services
Hereditary Angioedema (HAE) is a rare debilitating, sometimes life threatening blood disorder that requires what is called C1 Esterase Inhibitor infused into our blood.
This comes from Blood Plasma which is from Blood donors. In other countries a lot of blood plasma donors are paid; not in Canada. Therefore we have a huge shortage and our treatment is very expensive and very hard to get approved by our Government Healthcare Program and Canadian Blood Services.
A lot of our product comes from the United States. This petition is to draw attention to the issue and to see why Canadian Blood Services doesn't have programs in place to compensate patients that regularly donate their blood and blood plasma which would encourage more, bring down costs, allowing easier access to treatment, less red tape, less politics in the healthcare of gaining access to this product that saves our lives regularly and stop relying on other countries for resources.
*Picture above is an example of a left swollen hand vs. a right non-swollen hand from an HAE attack. Swelling can happen anywhere in the body triggered by many or no events.
Mr. Mark Donnison,
Vice-President, Donor Relations, Canadian Blood Services;
As a patient with Hereditary Angioedema: a rare, often debilitating and life threatening blood disorder I am seeking easier and more affordable access for Canadians to treatment which only comes from C1 Esterase Inhibitor from concentrated blood plasma donated by blood donors.
I recently discovered that we get most of our product from U.S. donors. As a Canadian, that is very discouraging.
Hereditary Angioedema affects approximately 1 in 50,000 Canadians and often affects more than one family member in a household. If a parent has this disease there is a 50% chance they will pass it to their offspring. The disease is rare, which makes is very difficult to diagnose often having patients suffer needlessly many years before a proper diagnosis. Some patients die without a diagnosis. When diagnosis is made we then have to struggle with getting proper treatment and deal with medical practitioners, blood banks and trying to access rapid emergency care which is very difficult because they are rarely familiar with HAE. There are already enough struggles with this physically, emotionally and mentally.
Which brings me to access to our life saving treatment. C1 Esterase Inhibitor is only available if the public donates blood, specifically blood plasma. There is a huge shortage of C1 Esterase Inhibitor in Canada, which is then concentrated and prepared by a Pharmaceutical company and distributed by Canadian Blood Services to blood banks. Patients then receive it after a long painstaking process of trying to get approval from Government Healthcare programs in each province to receive it, which we understand may be because of the cost and availability. Let's take the politics out of it and treat patients.
If blood plasma were more readily available this whole process would be more efficient. Canada has one of the best healthcare systems in the developed world. So, my question is why aren't we compensating the general public to donate blood and blood plasma? There is no risk involved as everyone and their blood is screened throughly.
Canadian Blood Services has a great reputation and could very easily recruit donors and repeat donors by compensation to help HAE (Hereditary Angioedema) patients and others that rely on large amounts of blood plasma products; lowering everyone's cost, increasing supply and increasing availability.
As the leading agency in Canada that is the only source for patients like us that rely on you to live, I think you owe us to at least look into this, statistics, costs and not throw this issue aside.
Please consider looking into this. Our lives depend on it.
Sincerely,
HAE patients and family members across all Canadian Provinces.
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