TCOR Community News Summer 2005 /�

45 Charles St. E.Suite 708

Toronto, ON M4Y 1S2Phone: 416-924-3446

Fax: 416-972-0307E-mail:

tcor@hemophilia.on.ca

Editor: Frank Bott

Summer 2005

This newsletter is suppor ted by the generosity of Wyeth Genetics Inst i tute

The inSide STory...

Remembering Patrick by Frank Bott

Winter Quorum at the 35th AGM by Mike Beck

Hey Kids! - A Brief His-tory of the Comprehen-sive Care Clinic by Marc LaPrise

Candace Terpstra Hon-oured by Frank Bott

Hepatitis C Compensation—Still Not a Done Deal

Toronto and Central Ontario Regional Hemophilia Society (TCOR)

Communitynews

“First, do no harm. Second, coop-erate with the healing powers of nature. Third, address the fun-

damental cause of disease. Fourth, heal the whole person. And fifth, teach the principles of healthy living and preventative medicine.” These are the five principles of naturopathic medicine as presented by Masina Wright, ND and they provided the framework for her presentation on Alternative Therapies for Hepatitis C at the latest TCOR Hepatitis C Infosession that took place on March 7, 2005. Masina Wright is a naturopathic doctor (ND) practicing in Toronto, who has treated many HCV and HIV/HCV coinfected individu-als. Her dynamic presentation provided a general introduction to naturopathic medi-cine, as well as focusing on treatments used to increase liver health in individuals living with hepatitis C.

So what exactly is naturopathy? Simply stated, naturopathic medicine is a primary health care profession that focuses on prevention and uses natural methods to promote healing. Naturopathic doctors use a combination of clinical nutrition, botani-cal (herbal) medicine, acupuncture, Asian medicine, homeopathic medicine, physical therapies and lifestyle counseling to stimu-late the body’s self-healing abilities. The aim of naturopathy is to treat and heal the

whole person, not just the disease, through individualized treatment. So what does that mean for people living with hepatitis C? How can naturopathic treatments contribute to liver health?

Masina emphasized nutrition as the cornerstone of naturopathic treatment for hepatitis C. Since the liver filters every drop of blood that carries nutrients and chemi-cals from your digestive system to the rest of your body, eating well will reduce the liver’s workload, not to mention improving overall health. Eating organic foods—foods

by Meghan Cox, Regional Service Coordinator

Alternative Therapies for Hepatitis C

2\ TCOR Community News Summer 2005

“

”

As with any health care therapy, however, consult your doctor before adding supplements to your daily regimen.

grown without pesticides—is one way to reduce the liver’s burden of removing toxic substances from the body. In addition to this benefit, since organic products are grown in healthier soils, they contain higher levels of nutrients and usually taste better than their conventional counterparts! Another impor-tant thing to remember is to ensure that there is variety in the foods you consume. Masina warned that consistently eating the same foods can lead to low grade allergic responses and food sensitivities, which will in turn add stress to the immune system.

Nutritional supplements were another aspect of naturopathy that was addressed by Masina in her presentation. According to Ms. Wright, the progression of liver cell damage to fibrosis is controlled by antioxi-dants, and therefore these are the primary focus of nutritional supplementation with hepatitis C. Milk thistle was at the top of the supplement list due to evidence that it may be hepatoprotective through a num-ber of mechanisms including antioxidant activity, enhanced protein synthesis, and possible anti-inflammatory agents. Licorice was also highlighted as an anti-viral and anti-inflammatory agent that has been used for acute and chronic hepatitis (although the use of licorice is contraindicated in individu-als with cirrhosis and with fluid retention).

For a more complete list of supplements provided by Masina Wright, ND, contact Meghan Cox at mcox@hemophilia.on.ca or 416-924-3446.

Another botanical supplement that is said to slow or halt progression towards cirrhosis and liver disease is Bluperum. And artichoke is said to be hepatoprotective while also increasing bile flow. The list of supplements that may help increase liver health is long and it is difficult to gauge their efficacy since there are no regulations surrounding alternative medicines. As with any health care therapy, however, consult your doctor before adding supplements to your daily regimen.

In addition to eating well and taking sup-plements, naturopathy encourages people to lead a healthy lifestyle: Get 20 minutes of fresh air every day. Include some form of physical activity in your daily routine. Drink lots of water. Maintain a regular sleep sched-ule. Play! Learn how to manage your stress and eliminate stress wherever possible. By leading a healthy lifestyle, your overall health —including the health of your liver—will be improved.

As the presentation drew to a close Masina shared one of her favorite Buddhist quota-tions, which I pass along to you:

May you live your life with ease. May I live my life with ease. May everyone everywhere live their lives with ease.

Summit Garden Fundraiser The Summit Garden Restaurant celebrated their 7th anniversary with a Wine Festival on April 22, 2005. More than 200 people attended this popular event and all proceeds were generously donated to the Toronto and Central Ontario Regional Hemophilia Society. The evening consisted of a superb eight-course dinner, live music, stand up comedy, wine tasting and a silent auction. The event was a huge success, raising over $10,000 for TCOR and the “Toronto bleeding disor-ders community.” A huge thank you goes to everyone who made this event possible.

u Clockwise from top left: The Dan Bodanis Jazz Band warming up the crowd • John Plater addressing the assembly • Mike Beck, John Plater and Bill Wade enjoying the scrumptious dinner • The Wine Festival program.

TCOR Community News Summer 2005 /�

I was very moved and inspired to read André Picard’s account, “Couple Called to Marathon of

Caring,” as Christine and Christian Fortin were preparing to run in the Boston Marathon that morning of April 18. As only Picard could describe it. “...42.2 kilometres of knee-pound-ing, gut-wrenching running.” They ran in memory of their son Patrick who died in November 2001 at the age of 23, also to honour the physi-cian who played such an important role in his young life. “‘Compared to what he went through, and also what we went through as a family with him, you can’t say a marathon is difficult —not at all,’” Christine said of her son and their family’s trials. The Boston Marathon was but the second step in their running, having participated in Venice, and planning to be in the Toronto Marathon this September, all after a program of vigor-ous training.

The Fortins of North Bay have been very much part of the Toronto hemophilia com-munity for many years, known for their warmth, caring and boundless energy! Patrick, as well as being a hemophiliac, was among the youngest, at age 6, to test positive for HIV-AIDS. Because of limited treatment facilities in the north, the Fortins brought Patrick to the Hospital for Sick Children where he was assessed regularly by the hemophilia care team but, more importantly, was treated by Dr. Susan King at the hospital, one of the world’s foremost experts on pediatric HIV-AIDS. Patrick de-veloped a very close relationship with Dr. King and aspired to become a doctor like her some day. Later he was also a patient at Wellesley and the St. Michael’s Hospital Comprehensive Care Clinic, where Christine particularly appreciated Ann Harrington’s cheerful dedication. Christine was very much involved with TCOR’s Women In Touch and is grateful to Candace Terpstra and the group for their support and opportunity to share, particularly during Patrick’s last years when his condition deteriorated markedly, requir-ing constant care.

After allowing a decent interval for the Fortins to get back from Boston, I decided to phone Christine. My first inclination was to ask, “How did you do? Where did you place?” I refrained from asking those questions be-cause I realized how irrelevant they really are. Their running is dedicated to creating

a living memorial to Patrick and to honour a wonderful, caring doctor, Susan King. They had previously discovered that Dr. King was gravely ill with ALS (Lou Gehrig’s Disease) and that she had always had the dream to establish a hospice for mothers and children with HIV-AIDS.

To continue André Picard’s narrative, “As they run today, the Fortins will raise tens of thousands of dollars—it’s hard to say how much exactly because they can barely keep up with the steady flow of cheques to their home in North Bay, Ont., as word spreads.

“All the money will go toward the con-struction of Canada’s first hospice for moth-ers and children with HIV-AIDS.

“The 12-bed home, part of the respected Philip Asiz Centre, is to open in August, 2006, in downtown Toronto, when the city will play host to more than 20,000 delegates at-tending the International AIDS Conference... The Fortins know that when they run today in Boston, they will not cross the finish line first. Neither will any of the half million spectators lining the route know their mis-sion... ‘Since Patrick died, we wanted his life to be a victory,’ Ms. Fortin said... ‘We weren’t sure how to do that, but Susan King gave us a purpose. We can hardly wait to see her dream come true when the hospice opens next year.’”

André Picard has very kindly given us permission to abstract from his much longer article appearing in the Globe & Mail on April 18, 2005.

by Frank Bott

Remembering Patrick

�\ TCOR Community News Summer 2005

Party. Many support and networking activities were organized during the year—Hepatitis C, Peer Support, Women’s Concerns and Family Issues. Camp Wanakita is, of course, an ongo-ing annual event for many of our youth. An important future direction is development of a Transition Program to help youth and their families make the transition from the pediat-ric clinic at the Hospital for Sick Children to the adult clinic at St. Michael’s Hospital.

Administration & FinanceStan Machado reiterated the dilemma of inadequate unrestricted funding vis-à-vis the need to provide for administration. He cited the efforts to achieve savings by combining office space and shared staff with Hemophilia Ontario. He also reported on efforts to or-ganize a standardized accounting system between the regions and the provincial or-ganization and to streamline audit processes. Some efforts to address fundraising concerns included reference to the “CHS Blueprint for National Fundraising” as a “toolkit” for raising and sharing income. He also cited contracting out, expediting and coordinating the Golf Tournament, on an experimental basis, to address the lack of in-house fund-raising resources.

Treasurer’s ReportMike Beck reported a decline in fund balance from $145,287 to $109,313 in 2004. Again the decrease is particularly pronounced in Unrestricted Operations. He presented a diagrammatic example of the problem where you have to maintain an infrastructure to sup-port programs but have difficulty in getting funding for it, and on the other hand, you have a good flow of revenues for programs but are challenged to spend it. He also spoke about a dramatic decrease in gaming rev-enues and raised some of the issues—how secure they are, problems of volunteer avail-ability, and restrictions on the use of funds. Government funding, while still relatively stable, raises questions of future security.

Winter Quorum at the 35th AGM

Members stayed away in droves at TCOR’s Annual General Meeting on April 3, in the face of sloppy wintry

weather, just barely achieving the necessary quorum of members.

President’s ReportHeather Carlson spoke of the past year as being one of “change”—changes in staff with the retirement of Jane Bishop, change in re-sponsibilities for Susan Turner becoming Re-gional Administrative Coordinator; Meghan Cox replacing Candace Terpstra as Regional Service Coordinator; and (at the provincial level) the retirement of Candace Terpstra as AIDS Program Manager. Together with staff changes were the adjustments involved in moving into a shared office with Hemophilia Ontario in the interest of economy. Financial and cash flow concerns have been an ongo-ing worry. Heather expressed her personal thanks to the staff for helping us through a difficult year, to Susan Turner, Marc LaPrise, and Meghan Cox, to Ontario staff Wendy Wong and Shelly Ann Riley, who provides shared services to both. Appreciation was also expressed to the reduced Board of Di-rectors (to eight, of which six will be staying on) and to her colleagues in the Executive Committee.

Program DevelopmentMeghan Cox (in the absence of Rick Grif-fin) presented highlights from the previous year; the Hepatitis C Information sessions, public education on von Willebrand Disease, the newsletter, our resource library with information on Bleeding Disorders, The N.E.W. (Now Experience Wellness) program, the Hunter Bishop Comfort Fund, and the Gale and Rick Stone Learning Fund. A major initiative in the past few years has been the twinning project with the Jordanian Hemo-philia Society, for which TCOR and the JHS were publicly recognized in Bangkok. Social activities included the Summer Picnic, the Lamb Roast at the Platers’ and the Winter

”“...a year of change...

TCOR Community News Summer 2005 /5

Volunteer RecognitionVolunteer of the Year award was presented to Gloria Allain for her dedicated service as a board member for a number of years, as a parent, and her active involvement in the Bingo operations.

The President’s award, given to TCOR’s most generous financial supporter, was given to Sandra Nymark.

aPPreciation certificates were presented or announced for all who supported TCOR through their volunteer efforts in the past year (including some members from other regions). (See inset for 2005 Volunteer Rec-ognition.)

KarttiK shah award: Heather Carlson an-nounced this new award in memory of Kart-tik Shah, “typifying a long-term volunteer commitment to the bleeding community,” the first recipient being Candace Terpstra. Denise Orieux accepted the award on Can-dace’s behalf, speaking about her personal memories of Frank and “Candy” Terpstra, their leadership in getting the adult clinic at St. Michael’s Hospital established, advocating on behalf of blood safety issues, and later (as her replacement) the professionalism and dedication that Candace brought to her posi-tion as Regional Service Coordinator.

Nominations and ElectionsJames Beckwith, as Chair of the Nominations Committee, presented the slate of those who had agreed to serve on the TCOR Board and as Directors of Hemophilia Ontario and opened the floor to further nominations or volunteers as listed below. The Executive Committee (elected at a subsequent board meeting) is also included.

President Michael BeckTreasurer James BeckwithSecretary Paul TascionePast President Heather CarlsonChair, Admin. & Finance Stan Machado Directors: Gloria Allain Tom Alloway Maury Drutz Kim Jepson James Kreppner David Neal John Plater Bill Wade

Delegates to Hemophilia Ontario: Tom Alloway Michael Beck James Beckwith Ian DeAbreau James Kreppner Stan Machado John Plater

Gloria AllainTania AntenucciMike BeckJames BeckwithFrank BottHeather CarlsonEugene ChanCarolynn ChasseAubrey ChiuLilja CohoonTed CreightonJerry CukierBrad DalglieshIan DeAbreau

A sincere THANK YOU to each and every volunteer—we couldn’t have delivered any of our programs and services without you!

2005 Volunteer RecognitionThe Toronto and Central Ontario Regional Hemophilia Society would like to take this oppor-tunity to recognize all the volunteers who have made contributions to the TCOR community over the past year.

Joanna DupiraShannon EdgarPat EdwardsChristine FortinRick GriffithCarol HandyCindy HandyJanet Handy Dan IgnasGlenna IngersollKim JepsonLorna KiddStella KokorosJames Kreppner

Derrick LeeMargaret LeeJennifer LindbladHilda MachadoStan MachadoBunny ManganGerry MudgeDavid NealHeather O’GradyJustine O’GradyMike O’GradyMJ O’GradyDane Pedersen Barb Peters

Chris PowerLisa PowerJulia SekMina ShahTammy StockillWill StockillLyf StolteRichard StoneAnia SzadoDr. Jerry TeitelDon TuckerDuane Tulk ”

“...we couldn’t do it without you...

�\ TCOR Community News Summer 2005

Are you aware of the importance of your Comprehensive Care Clinic?

Hey Kids!

by Marc LaPrise, Regional Service Coordinator

TCOR Community News Summer 2005 /�

It happens every year...Your parents pack you into the car or onto the subway and you make that trek down to Sick Kids for the day. You bounce between the weigh scale, to Ann Marie and Georgina, to Pam, to dental, and so on. Sometimes you see me or Diana, sometimes you go to have x-rays, then get blood taken, then have a quick lunch and get back to the 8th floor in order to see Dr. B and maybe another person that is running a study. I realize it is a long and tiring day, and the wait between visits from different people working to take the best care of you can be long... That’s what Game Boy is for, right?

Did you ever take a second to think about how your comprehensive care clinic came to be? Most of you are too young to remember cryoprecipitate, never mind blood-based factor concentrate. I can guarantee that none of you remember the creation of the comprehensive care clinic at Sick Children’s Hospital. I can guarantee that because I don’t remember it happening (and I’m older than you are but younger than 35). So I go to the history books to find out how the clinic came to be, and how important it is for you and your family to support it, your Region, your Chapter, and the Canadian Hemophilia Society.

If it were not for a few very determined people, the clinic may never have happened. Here are some milestones: In the early 1960s scientists discovered how to separate the parts of the blood necessary to help with blood clotting, known as cryoprecipitate (cryo for short). When cryo became avail-able, it led very naturally to the development of a home care program, which meant that someone living with a bleeding condition could do their own infusion (or have their parents do it) at home, and visit the hospital for emergencies or for bleeds that needed more care, much like the care that you expect today. Dr. Peter McClure of Sick Kids was one of the first doctors to have patients on home care and, by the ’70s, young people with bleeding disorders were self-infusing. Many of them even learned to do that at camp. Before cryo and home care, you had to go to a hospital, sometimes to stay for

a couple of days and have whole blood or plasma dripped slowly into you in order to stop the bleeding. When I say there was a ‘push’ to create home care, I mean exactly that—parents, doctors, nurses and those living with bleeding disorders knocking on doors and lobbying the government to help out with comprehensive treatment for all those affected, and to cover the cost of sup-plies needed for home care.

Did you know that less than 50 years ago, the Canadian Hemophilia Society was ‘pushing’ to have children with a bleeding condition in the regular school program? In the ’60s the Ontario Chapter (as it was called in those days) was a world leader in putting out literature to educate teachers, parents and the public on dental care, home care and the hemophiliac in school. Looking ahead, the year 2000 was seen as the year far in the future when we would finally have a cure for hemophilia and other bleeding conditions. Sounds crazy now, doesn’t it? While we still don’t have a cure, we have come a long way in care just in my lifetime. I am sure you will be able to say the same thing by the time you are my age, living with and learning about your bleeding condition.

I wrote this article because I am always amazed by the dedication, compassion and commitment of our volunteers and the sup-port of very dedicated, caring professionals. We are in the midst of a big change after the blood tragedy of the 1980s, we have to change the way we deliver services, and we have to groom the younger generation to join in and dedicate their time and yes, their money, to the cause. Those early volunteers created and ensured that your comprehen-sive care clinic would be there when their kids grew up. Those who volunteer now, continue to defend the quality of care we have on your behalf. It is important that you ensure that the Hemophilia Society (at all its levels) is there when you grow up and that you and your children have the comprehen-sive care that you enjoy today.

Help make it happen!

”

“less than 50 years ago, the CHS was ‘pushing’ to have children with a bleeding condition in the regular school program

�\ TCOR Community News Summer 2005

Candace is the first recipi-ent of the Karttik

Shah Award which was created by TCOR in his memory to honour a person who “typifies a long-term contribution to the bleeding disorders community.” Candace first became involved with Hemophilia Ontario and TCOR in the late ’70s after her marriage to Dr. Frank Terpstra, and together they formed a very effective team in dealing with the issues of the time. Candace became Chair of TCOR in 1980 and Frank be-came President of Hemophilia Ontario in that year. Two major thrusts came out of Ontario and TCOR, following upon a Conference on Comprehensive Care leading to the formation of an Action Committee on Comprehensive Care. The committee initiated an objec-

tive review process to select a hospital site for Adult Care. St. Michael’s Hospital was selected but the Ontario Ministry of Health required that TCOR put up over $100,000 in “seed money.” This demanded a major fund-raising thrust to obtain those kind of funds. The Terpstras and many others worked to make that happen. Stan Machado (who suc-ceeded her as Chair of TCOR) and others (such as Helen and Hunter Bishop) played a key role in this initiative. The Committee was also successful in getting enhanced funding for the Hospital for Sick Children. By 1985 funding was obtained by Hemophilia Ontario for comprehensive care in Thunder Bay, Kingston and the Adult Program in Ottawa.

The other major thrust of the ’80s was driven by Bill Mindell, Chair of the Ontario and TCOR Blood Products Committees, who gave early warning of the need to pay atten-tion to concerns about the blood system. In 1988 the CHS set up a task force to negoti-ate an assistance package with the federal government for those infected with the HIV virus through the blood system. As well as being spokespersons on these issues in Ontario, Frank and Candace (together with Denise Orieux) sought out Michael Wilson, then Minister of Finance, in his constitu-ency office in Etobicoke, to get his support for the CHS task force. So moved was he by

Frank’s story of how HIV/AIDS had affected him and his family, that Michael Wilson (who was probably the most influential force in the federal cabinet), at the conclusion, said he would not “oppose” the CHS request for assistance.

In the early ’90s, Candace’s motivation moved in the direction of meeting the needs of women whose lives had been affected by husbands, partners or sons infected with HIV and/or Hepatitis C viruses (and in some instances women who had been infected). She wanted the opportunity to “give back” because of all the support she received from women in the Society following her husband’s death in 1990. As Chair of the Hemophilia Ontario Women’s Committee from 1994 to 2000, Candace was instrumen-tal in getting professionals such as Catherine Commuzzi involved to facilitate sharing of experiences and support among the women, and to develop the group leadership skills and support group model necessary to do this important work.

Candace replaced Denise Orieux as Re-gional Service Coordinator in 2000, bringing a unique background to the position, not only in terms of someone who had personal experience (in the “trenches” so to speak) but had a background in Nursing and Social Work—the consummate professional. Dur-ing her three years in this position she de-veloped and ran the Hepatitis C Information sessions and assisted many of our members with compensation and treatment issues. At TCOR Candace facilitated the development of the Women In Touch support group —a group that continues to meet regularly. Dur-ing this most recent year she was able to reactivate the Provincial Women’s Network —a support group which is inclusive of all women, as well as advancing the work of the Hemophilia Ontario AIDS and Hepatitis C Advisory Committee (with particular em-phasis on co-infection), work which she says is “dear to her heart.”

It is appropriate that she received the award in memory of Karttik Shah, because he credited her with bringing to fruition the twinning relationship with the Jordanian Hemophilia Society, for which TCOR and

by Frank Bott

Candace Terpstra Honoured

”

“Karttik Shah credited [Candace] with bringing to fruition the twinning relationship with the Jordanian Hemophilia Society

TCOR Community News Summer 2005 /�

the JHS were recognized with the “Twins of the Year Award” by the World Federation. Again, very fittingly, Candace was able to be in Bangkok to receive this honour on our behalf. When Candace became AIDS Program Manager for Hemophilia Ontario in 2003, she was very much involved in developing the provincial twinning program with Iran. From the perspective of this Editor, I always appreciated the thorough and professional articles prepared by Candace, reporting on the Information Sessions and her reports on congresses and other meetings in her world travels in Montreal, Seville and Jordan, al-

ways with a certain “side bar” of her personal adventures.

As she quipped to us about “Freedom 55,” Candace is reveling in the discovery of “free time” and no schedules and appointments. We rather suspect that won’t last too long as she completes her studies towards a Fine Arts degree at York University and devotes herself to her art, something she has been doing for a number of years but never having quite enough time to do it, and kept hidden from some of us in her typically modest fash-ion. All the best “Candy,” as you do all those things to find self-fulfillment and creative

Hepatitis C Compensation—Still Not a Done Deal!(For those infected before 1986, after 1990)

On Wednesday, April 20, 2005, all members present in the House of Commons voted in favour of a mo-

tion of concurrence put forward by Steven Fletcher, Health Critic for the Conservative Party of Canada, and supported by a majority of the Parliamentary Standing Committee on Health. The motion read as follows:

The Standing Committee on Health has the honour to present its

Seventh ReportPursuant to Standing Order 108(2), your

Committee has adopted the following mo-tion on Monday, March 21, 2005:

“That the Committee report to the House, that it not only continues to urge the government to extend compensation to all those who contracted Hepatitis C from tainted blood, but that it call on the govern-ment to do so immediately, in recognition of the First Report of this Committee, the recommendations of the Krever Inquiry and the large surplus in the federal Hepa-titis C compensation fund.”

The vote, highly symbolic in nature, is non-binding on the federal government, cur-rently in a minority situation in The House, and led by the Liberal Party of Canada.

This means that despite the unanimous support of MPs from all parties—the govern-ing Liberals, and Conservatives, Bloc and New Democrats in opposition—the status quo remains. There has still been no clear indication on the part of the Government as

to when potential compensation recipients from outside the 86-90 timeframe may begin to submit claims.

As it stands, discussions are currently underway between representatives from the federal government, lawyers represent-ing those people already covered under the 1986-1990 Agreement, and lawyers repre-senting people excluded from the 86-90 plan, in efforts to determine the most reasonable way to extend compensation.

At the same time, an actuarial study is being conducted to determine the amount of money that remains in surplus in the 86-90 fund. It is thought that this money may potentially be used to assist those outside the 86-90 window. The study was to be com-pleted by June 2005, however it is possible that it will not be available until some time in the fall.

The position of the CHS remains the same: to protect the moneys already set aside for claimants accepted into the 86-90 plan, and to provide equal compensation to those outside of the 86-90 period. There are several ways that compensation could be extended to those excluded, including using surplus funds from the 86-90 plan, and having the government guarantee to top up any shortfall. It would be likely that a parallel fund would have to be set up for the new claimants.

(Abstracted from Canadian Hemophilia Society website of May 3, 2005.)

�0\ TCOR Community News Summer 2005

In exchange for not bringing the case to trial, the Red Cross agreed to plead guilty to violating the Food and Drug Regula-

tion Act by distributing an adulterated, or contaminated, drug. The $5,000 fine is the maximum penalty for that charge under the Food and Drugs Act..

It had originally faced six charges of com-mitting a common nuisance by endangering the lives, safety or health of the public.

The secretary general of the Canadian Red Cross delivered a videotaped apology to the Hamilton courtroom, accepting the organization’s responsibility for its role in the tainted blood scandal.

As a third point in the agreement, the Red Cross will give $1.5 million to the Uni-versity of Ottawa for a scholarship for family members of those affected and a research endowment fund.

The judge will not formally deliver the sentence until a later court date on June 30, but Crown lawyer John Ayre called the proposed fine reasonable.

“The Canadian Red Cross Society is deeply sorry for the injury and death ...for the suf-fering caused to families and loved ones of those who were harmed,” said Dr. Pierre Duplessis, the secretary general of the Red Cross, in his taped statement.

“We accept responsibility through our plea for having distributed harmful products for those that rely on us for their health.”

More than 1,000 Canadians were in-fected with HIV and up to 20,000 with hepatitis C after receiving tainted blood products from the charity in the 1980s and early 1990s. It was one of the worst public health disasters in Canada.

As of 1997, about 3,000 people had died. While others have died since then, more recent estimates are not available.

John Plater, spokesperson for the Canadian Hemophiliac Society, called

Red Cross fined $5,000 in tainted blood dealCBC News, HAMILTON, ONT. - The Canadian Red Cross was fined $5,000 for its role in the tainted blood scandal after it pleaded

guilty to a lesser charge for its role in what’s been called a “public health calamity.”

the day historic. “For the first time in Canadian history...

we’ve learned without a doubt that at the centre of the worst public health tragedy in our country’s history there were people breaking laws and that resulted in people’s deaths,” said Plater.

Monday’s proceedings did not deal with charges laid against the former director of blood transfusions, Dr. Roger Perrault.

He and three other doctors, along with New Jersey-based Armour Pharmaceutical Co., are accused of criminal negligence caus-ing bodily harm and endangering the public. The charges are for allegedly allowing Ar-mour’s HIV-infected blood-clotting product to be given to hemophilia patients.

The RCMP started their investigation after a 1997 commission of inquiry, headed by Justice Horace Krever, blamed governments and the Red Cross for failing to put safety measures in place to protect the public.

Krever, who called the scandal a “nation-wide public health calamity,” didn’t have the authority to assign criminal blame in his report.

For more information and background to this story, check out http://archives.cbc.ca/300c.asp?id=1-70-737.

TCOR Community News Summer 2005 /��

short strokes

• Our Annual Bowlathon on March 5 was very successful with over 60 people partici-pating in bowling and a “Crazy Hat” competition. The event raised over $3,500 for TCOR.

• An informal potluck luncheon was held at the office on March 11 to honour Candace Terpstra, who retired from her position as AIDS Program Manager on April 1.

• We were pleased to welcome, with much excitement on this occasion, Shaw, son of our Past-President Heather Carlson. So-named after Heather’s good friend Karttik Shah, he was born on December 23. Also present for the luncheon was his proud grandmother, Bunny Mangan!

• As part of the Spring parade of births, our Regional Administrative Coordinator, Su-san Turner had a baby girl on April 16. Emma Rachel weighed in at just over eight pounds. Susan is now absent on maternity leave. Congratulations and best wishes to Susan.

• TCOR celebrated World Hemophilia Day on April 17 at the Air Canada Centre where thousands of Raptors fans were made aware of bleeding disorders. The Hemophilia Ontario logo was displayed on the score board prior to the game, and volunteers were stationed at booths, handing out World Hemophilia Day magnets along with information on hemophilia and von Willebrand Disease. Many thanks to Marc La-Prise, Shelly-Ann Riley, and Gloria Allain who made the event possible.

• Vancouver will be the site for Hemophilia 2006 World Congress from May 21 to 25, 2006. It’s not too early to plan for this important event. For more information, visit www.wfh.org.

Bleeding Disorders Resource CentreWant to know more about gene therapy? Have a question about inhibitors? This is just a reminder that the TCOR Office has a Resource Centre available to anyone interested in accessing information about bleeding disorders. Current periodicals, books, videos and other resource materials are all available for your perusal. And coming soon, we will also have a computer terminal available for health-related research. So drop by the office and visit our Resource Centre to learn more about the bleeding disorder that affects you and your family!

Interested in volunteering at TCOR? We are currently looking for an individual to assist with the Resource Centre – if you’re interested, please call Meghan at 416-924-3446.

�2\ TCOR Community News Summer 2005

The Toronto and Central Ontario Regional Hemophilia Society exists to improve the quality of life for all persons affected by Hemophilia and re-lated conditions. The opinions presented are those of the authors and do not necessarily represent those of Toronto and Central Ontario Region (TCOR). These articles are for information exchange. TCOR does not endorse or recommend any of these opinions. Please discuss all medical questions with your doctor or staff at the Comprehensive Care Clinic. Feedback on this or any issue of Community News is welcomed. Editor: Frank Bott. Contact information is on page 1.

Editing and design services: GEPM Group Inc. www.gepmgroup.com

You won’t want to miss...

John and Karen Plater’sLamb Roast and BBQ

SaturdayAugust 20, 2005

Anytime after 1:00pmMaple Bend Farm

Heathcote, ON

What to bring:1. Yourself and your family2. A salad or dessert3. Lawn chairs/blanket4. Bug spray and sunscreen5. A few snacks and drinks

RSVP to Meghan at 416-924-3446 or e-mail mcox@hemo-philia.on.ca. Let us know how many are coming from your family and what you will bring and we’ll send you direc-tions to the farm.