Letter writing campaign for Barb Farrell - VICTORY

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Letter writing campaign for Barb Farrell - VICTORY

Postby Cece » Sat Jun 12, 2010 7:21 pm

THE ARRANGEMENTS ARE IN PLACE FOR BARB FARRELL TO GET TREATMENT IN THE U.S. ON WEDNESDAY JUNE 23RD. DEEPEST APPRECIATION TO THE ANONYMOUS DONOR WHO MADE THIS HAPPEN. IT IS NOT A SIMPLE UNDERTAKING, IT INVOLVES BEING FLOWN IN A SPECIALLY EQUIPPED AIRLIFT ACCOMPANIED BY A PARAMEDIC BUT IT IS THE SOLUTION SHE NEEDED!! PLEASE CONTINUE TO HOLD THIS FAMILY AND ALL OF OUR CANADIAN MSERS IN YOUR THOUGHTS AND PRAYERS!


http://www.thebarrieexaminer.com/ArticleDisplay.aspx?e=2619856

I am organizing a letter-writing campaign on behalf of Barb Farrell. Please read the article above, it is heart-wrenching.

Here are some things to mention in the letters:

* Barb Farrell is a 46-year-old mother with MS.
* She was two days away from an appointment for CCSVI treatment when Dr. MacDonald was shut down.
* She has since deteriorated. She can no longer use her wheelchair, has been in the hospital for a month, and is using a feeding tube.
* It is her fervent wish to be treated for CCSVI.
* This would be done by percutaneous venoplasty, a minimally invasive surgical procedure which is commonly done on an outpatient basis.

Here is what to ask for in the letters:

* For a compassionate exemption to be granted immediately so that Barb Farrell may receive the CCSVI treatment from Dr. Sandy MacDonald of Barrie Vascular Imaging or any other local doctor willing and able to treat her.

Here are the places to send these letters:

* Minister of Health Canada postal mailing address:
The Honourable Leona Aglukkaq, P.C., M.P.
Health Canada
Brooke Claxton Building, Tunney's Pasture
Postal Locator: 0906C
Ottawa, Ontario K1A 0K9

* Dr. Kirsty Duncan Liberal MP - Critic Public Health Canada
postal address:
Dr. Kirsty Duncan Liberal M.P.
House of Commons
Ottawa, ON K1A 0A6

* Minister of Health Services British Columbia Kevin Falcon
postal address:
MINISTRY OF HEALTH SERVICES
1515 BLANSHARD STREET
VICTORIA BC V8W 3C8

* If mailing from the USA, you will need to use 2 US postage stamps to cover the 75 cent rate to Canada.

Here is why I am asking you to write a letter:

* It really can make a difference. I ran the campus chapter of Amnesty International when I was in college, we sent a lot of letters. When a government receives letters from all over the world about a specific political prisoner, it sometimes worked. It drew attention, they were let go.
* It is heart-wrenching to imagine being in Ms. Farrell's situation. To be that close to treatment, then denied, then sliding downhill. I want the people in charge to know about her condition. And to know that we know. She is not alone in that hospital room; every one of us who is fighting for CCSVI treatment is there with her.

************************************************************
Please post here if you will be joining this letter-writing campaign. This is open to people from any country. I also ask that you forward this by email to anyone who might be interested in learning of Ms. Farrell's situation or who might also be moved to write a letter on her behalf.
Last edited by Cece on Sat Jun 19, 2010 1:25 pm, edited 5 times in total.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby foreignlesion » Sat Jun 12, 2010 7:28 pm

Consider it done, and if anyone knows the name and address of Barb's MP or MLA, could you please add it to this list.
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Postby kc » Sat Jun 12, 2010 7:36 pm

I just saw this on facebook. OMG I will write. I also have a 10 year old. It would probably help speed things up for her if all the tv stations in Canada got ahold of this story.

My thoughts and prayers are with her and her family.

k
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Postby Cece » Sat Jun 12, 2010 7:45 pm

By MP, do you mean: Member of Parliament?

Here is what I found:
Brown, Patrick W.
Conservative Party of Canada
House of Commons
Ottawa, Ontario
K1A 0A6
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby Shueywho » Sat Jun 12, 2010 7:51 pm

Excellent idea Cece. Will do and lets get them to do the right thing.
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Postby blossom » Sat Jun 12, 2010 7:53 pm

cece, consider it done. makes you wonder just how many others have gotten to this point and would have been helped with the treatment. shameful.
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Postby eric593 » Sat Jun 12, 2010 8:08 pm

Federal Minister of Health: Honourable Leona Aglukkaq
email: Aglukkaq.L@parl.gc.ca

Federal Minister of Health Critic: Megan Leslie
email: Leslie.M@parl.gc.ca

Federal MP Kirsty Duncan, serving on the House of Commons Standing Committee on Health
email: Duncan.K@parl.gc.ca

Federal MP Peter Julian, having made a Private Member's Motion for Equal access to CCSVI treatement for Canadians with MS
email: Julian.P@parl.gc.ca


Ontario Minister of Health and Long Term Care: Deborah Matthews
email: dmatthews.mpp.co@liberal.ola.org

Ontario Health critic: France Gélinas
email: fgelinas-qp@ndp.on.ca

Barrie's MPP's:

1) M. Aileen Carroll (a strong proponent of CCSVI research)
email: acarroll.mpp@liberal.ola.org

2) Patrick Brown (also strong proponent of CCSVI)
email: brownpa@parl.gc.ca

List of other Ontario MPP's:

http://192.75.172.22/web/members/member ... ?locale=en
Last edited by eric593 on Sat Jun 12, 2010 8:24 pm, edited 2 times in total.
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Postby Cece » Sat Jun 12, 2010 8:14 pm

And one more address:

M. Aileen Carroll, MPP (Barrie)
Room 361, Main Legislative Building, Queen's Park
Toronto, Ontario M7A 1A4

In the Barrie Examiner article, it said that both Aileen Carroll (MLA/MPP) and Patrick Brown (MP) were in support of Dr. MacDonald continuing this procedure, but that the provinces had forbidden it.

Any other suggestions for addresses? Should I go ahead and add Patrick Brown and Aileen Carroll to the main list?
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby cheerleader » Sat Jun 12, 2010 8:23 pm

Thanks, Cece. I posted a link to this thread on the Facebook page. So many people are touched and moved to act on Barb's behalf. Bless your heart for getting this going.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MicheleMaBell » Sat Jun 12, 2010 8:42 pm

DONE! This Canadian should have the right to get this procedure done and it's a shame to deny her this! I am ashamed to live in a country that could deny this woman the treatment she so deserves!
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Postby FlashHack » Sat Jun 12, 2010 8:55 pm

Done and done.
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Postby nicknewf » Sat Jun 12, 2010 9:01 pm

Here is the letter I am sending:
June 13, 2010


By Fax: 416-327-3679 By Email: dmatthews.mpp.co@liberal.ola.org

The Honourable Deb Matthews, Minister of Health & Long-Term Care
Ministry of Health and Long-Term Care
10th Floor, Hepburn Block
80 Grosvenor Street
Toronto, Ontario M7A 2C4

Dear Minister Matthews

Re: Emergency Treatment of Barb Farrell, patient dying in Barrie of CCSVI related MS

I am writing because of a heart-wrenching story I read in the Barrie Examiner, online:
http://www.thebarrieexaminer.com/Articl ... ?e=2619856

Barb Farrell is fighting for her life tonight, as she lies in bed with nothing but a feeding tube and hope keeping her with us. Although there is controversy surrounding the treatment of chronic cerebrospinal venous insufficiency (CCSVI) in all people with multiple sclerosis (MS), there is nothing unethical about a minister exercising her discretion in this case by permitting Barb's doctors to perform the procedure which was already planned for her. Your ministry can play a role by removing the barriers to treatment.

As you know, non-validated practice (i.e. a non-validated medical procedure performed for its possible therapeutic effect) can be ethically performed if: 1. the patient gives informed consent, 2. the potential benefits sufficiently outweigh the risks, and 3. provided that the medical professional is competent enough to perform the task. The facts meet this test: 1. Barb Farrell is a Canadian who has requested this treatment; 2. the procedure is safe and her condition dire, and 3. Dr. Sandy MacDonald’s team in Barrie is able, willing and competent to perform this procedure.

My understanding is that the procedure which offers her some hope of recovery is an angioplasty of the veins in the neck and spine, and is performed by interventional radiologists as an exceedingly safe procedure. Dr. MacDonald presented to a parliamentary sub-committee recently along with 2 of his patients who were treated for CCSVI before he was ordered to stop; those patients are getting better. Without getting into the politics of ethical review for novel medical treatment, I ask only that you read the article and exercise your good, compassionate judgment to give this woman a fighting chance. You can help save this woman’s life.
Last edited by nicknewf on Sat Jun 12, 2010 9:50 pm, edited 3 times in total.
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Postby nicknewf » Sat Jun 12, 2010 9:05 pm

I also suggest faxing:
Hill Office

House of Commons
Ottawa, Ontario
K1A 0A6
Telephone: (613) 992-2848
Fax: (613) 996-9764
EMail: Aglukkaq.L@parl.gc.ca
Web Site:* www.leonaaglukkaq.ca/EN/5215/
Preferred Language: English

Constituency Offices

Building 1057, Office 3 PO Box 1930
Iqaluit, Nunavut
X0A 0H0
Telephone: (867) 979-4193
Fax: (867) 979-4196
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Postby 1eye » Sat Jun 12, 2010 9:52 pm

Do it. Prove that Liberation saves lives. A lot of them can be saved. Postage does not cost much.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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