NRBDO: Summer Newsletter

Your NRBDO Summer Newsletter is here!

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This summer edition of the NRBDO newsletter includes lots of letters that you may be interested in, a save the date, and a request from rareDIGs. Please read on.

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1. Three letters

1. Letter to the Deputy Ministers of Health re: blood product review process.
At our F2F Meeting in April, a motion was passed to write to all the Deputy Ministers of Health requesting an improved review process for new blood products.

Areas addressed in the letter were:

consistency,
patient input opportunities,
transparency, and
the need for an expedited review process option.

The letter was sent in early June and can be viewed here.

To date we have received one response, from Saskatchewan DM Max Hendricks. Mr. Hendricks indicates that the Provincial Territorial Blood Liaison Committee and CBS will be meeting this month, July, and that "the review of the selection process is part of the agenda. The concerns which you have raised regarding the transparency and the expedited review process will frame part of the discussion."

2. Letter to all Senators re: paid plasma collection.
At the end of May, Senator Pamela Wallin introduced a bill into the Senate, Bill S-252, Voluntary Blood Donations Act (An Act to amend the Blood Regulations). This Bill, if passed, would make compensated collection of plasma illegal in Canada. The Bill and Senator Wallin's comments at the first reading of the Bill can be found here.

The board was concerned about this Bill, as this falls in contradiction to our established position on paid plasma collection. A letter was composed and sent to all Senators, and also forwarded to Senator Wallin.

Our letter can be read here.
Senator Wallin's response can be read here.

We will keep you updated on the progress of this Bill as the Senate resumes in the fall.

3. Letter to Innovative Medicines Canada re: domestic travel restrictions.
At our F2F meeting last fall, a motion was passed to write to Innovative Medicines Canada (IMC) regarding the impact that their domestic travel reimbursement restrictions have on patient groups.

The letter can be read here.

IMC has reached out to set up a conversation with NRBDO Chair Gergana Sandeva regarding this issue, and we will keep you informed of any further outcomes.

2. CBS Open Board Meeting

On June 27th, Canadian Blood Services held an Open Board Meeting in St. John's NL.

Several NRBDO members were in attendance to present, including David Page representing the NRBDO. David raised the same issues highlighted in the letter to the Provincial Territorial Deputy Ministers.

The letter received from the CBS Board Chair Mel Cappe can be read here.

3. ISH/CHS Congress + NRBDO Fall Forum: September 13-16, 2018

Remember to save the date for the International Society of Hematologists/ Canadian Hematology Society Congress, and the NRBDO Fall Forum: September 13-16, 2018 in Vancouver, BC.

The Fall Forum will take place September 15-16 at the Vancouver Convention Centre.

4. Request from rareDIGs

rareDIGs Medical Student Society at McGill

We enjoyed having Jessie, the founder and president of McGill's medical student rare disease interest group (rareDIGs) present at our Spring Forum.

Jessie is asking that if NRBDO member groups have any research opportunities to share, or the ability to provide registration and a travel grant to a relevant conference for a medical student interested in rare blood disorders, to please contact her at president.raredig.mcgill@gmail.com .

Thank you!