Stem cell match saved life: Man

“Stem cell match saved life: Man.  Vancouver native pushing campaign for Chinese donors”
– metronews.ca

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Jenny from UK needs your help

Jenny has recently been diagnosed with Leukemia, and she needs a bone marrow transplant to survive.

Below is her appeal letter sent out by herself via email.

Please help SPREAD THE WORD, and REGISTER NOW.

Sincerely,

Patrick

———-

” My name is Jenny Wilkinson and I am a member of Wirral Council’s Accountancy Finance Team.  I have been diagnosed with Leukaemia and the treatment to help save my life is a Bone Marrow Transplant.

Due to my Chinese background, I was shocked to find out the odds of finding a suitable donor worldwide is 1 in 100,000.

If you are interested or you may know of anyone who maybe interested in being a donor; have parents who are both Chinese in origin and is age 18-40 or 18-49 if you are a blood donor, please call the Anthony Nolan Trust on 0303 303 0303, or visit www.anthonynolan.org.uk. Donating is a simple procedure and does not require surgery.

There will also be a Bone Marrow Awareness Event on Saturday 6 February 2010 at West Kirby Concourse from 9.30am-4pm. A mouth swab will replace the simple blood test for assessment.

Please could you forward this email to anyone you know that would be interested in helping.

Thank you for all your help.

Jenny”

Support my friend Helen Lam run with the Leukemia Society

Thank you so much for helping my friend Helen Lam with her fundraiser to Leukemia and Lymphoma.

Please visit her fundraiser website:
http://my.e2rm.com/personalPage.aspx?registrationID=671781

Facebook page:
http://www.facebook.com/event.php?eid=154675097467#/group.php?gid=94118891034

She is really proud to be part of the Nike Woman Marathon and to have a chance to make a difference.

She is also hosting a coming event on Sept 5th, its a club night at Aubar, so if you know anyone that is interested, please let her know!

Helen Lam
+1.778 889 6084
helenlam33@gmail.com

Thanks.
Patrick

Chinese Community Asking You to “Be The One” 華人社區請求你參與「就是你」(Be the One)捐贈幹細胞

Local Chinese Group Launch Month Long Stem Cell Awareness Campaign

For Immediate Release

華人社區請求你參與「就是你」(Be the One)捐贈幹細胞

本地華人社團啟動長達一個月的幹細胞認知運動

加拿大的OneMatch幹細胞及骨髓網絡（OneMatch Stem Cell and Marrow Network）很高興和加華幹細胞協會（OtherHalf – Chinese Stem Cell Initiative）合作，公佈展開一個提高意識運動﹐目的在爭取更多華人在加國及全球登記成為幹細胞捐贈者。這運動的焦點環節為2月21日假萬錦廣場（3255 Hwy. 7, East）舉行的提高意識活動(Awareness Event)。

需要幹細包移植的病人，包括癌症、淋巴瘤(lymphoma )、骨髓瘤(lymyeloma)、其他免疫系統及基因紊亂症患者，當中只有三成可以在自己的家人中找到吻合的幹細胞，其餘七成病人則要倚靠沒親屬關係捐贈者的慷慨支持。由於在同一種族人士當中找到吻合幹細胞遠較不同種族為高，所以OneMatch幹細胞及骨髓網絡需要有更多不同族裔的捐贈者登記。在任何一刻，最少有600名面對生命危險的加拿大病患者需要接受幹細胞移植手術。

OneMatch幹細胞及骨髓登記處的行政總裁Sue Smith表示：「透過和加華幹細胞協會合作﹐OneMatch及加拿大血液局（Canadian Blood Services）彰顯及結集社區的力量﹐以身作則成為一個領導榜樣，不單止令為社區內有需要接受幹細胞移植的病人更易找到幹細胞配對，同時全球的華人社區亦可受惠。」她亦表示﹕「我請求其他不同族裔社群跟隨這個例子，與OneMatch並肩合作，向我們的共同目標邁進﹐令OneMatch幹細胞及骨髓登記冊上所有不同族裔的登記人數都同時增加。」

不但要幫助加拿大的華人﹐同時也要幫助全球的華人﹐這是加華幹細胞協會的聯合主席Susan Go發起這次捐贈運動及提高意識活動的主要原因。「華人社區再不能自滿地抱著『這不會是我』的態度﹐尤其是當華人在OneMatch網絡的登記比例偏低的時候。作為一個社群﹐華人現在就要有所行動﹐集合全社區的力量盡力增加華人在加拿大和全球的登記數字。」

在未來四星期﹐加華幹細胞協會籌備了多項活動﹐包括推出網頁http://www.chinesestemcell.ca﹑在Rogers Centre 1月23、24、25日的農曆新年活動中設置資料攤位、在YouTube及Facebook上開展針對年輕人的招募活動﹐以及2月21日在萬錦廣場舉行提高意識活動﹐提醒社區捐贈幹細胞的迫切性。

如果你有興趣成為可救人一命的捐贈者，今天便請登上www.onematch.ca加入OneMatch﹐或致電加拿大血液局1-888-2 DONATE (1-888-236-6283)。
關於加華幹細胞協會

現時在加國約有10名加拿大華裔病人正等待非親屬幹細胞捐贈，在全球幹細胞捐贈資料庫超過12,000,000個捐贈登記中，只有少於500,000個登記者是華裔。加華幹細胞協會由一班來自不同背景的市民創辦﹐希望把這個逼切情況告知廣大華裔社群。我們和加拿大幹細胞仲介OneMatch合作，目標是令更多華人到幹細胞登記處登記。憑借OneMatch、病人、不同社區組織、醫務專家及傳媒專才的幫助﹐我們舉辦提高意識運動﹐致力解除幹細胞的謎團﹐以及教育公眾有關捐贈常識。我們衷心希望得到華人社區支持﹐以及鼓勵到所有華裔加拿大人到OneMatch登記成為幹細胞捐贈者。我們希望大家認識到如果能救到一個生命﹐感覺會是多麼良好。就是你(Be the One) ﹐請你挺身而出﹐成為拯救生命的另一半( the Other Half)。

加拿大血液局/OneMatch
加拿大血液局是一個全國性、非牟利慈善機構，專責管理加國除魁省以外所有省份的血液及血液相關產品的供應。加拿大血液局同時監察OneMatch幹細胞及骨髓網絡，以及在全國領導器官及組織的捐贈與移植。加拿大血液局負責運作40個固定的收集中心﹐以及每年超過19,000個捐贈站，加拿大血液局的營運資金由各省及特區的衛生廳提供，聯邦政府透過加拿大衛生部(Health Canada)負責監管血液管理系統。更多詳情，可瀏覽網址www.blood.ca。
Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

Toronto, January 22, 2009 – Canada’s OneMatch Stem Cell and Marrow Network is pleased to partner with OtherHalf – Chinese Stem Cell Initiative by announcing an awareness campaign aimed directly at increasing the number of Chinese stem cell registrants in Canada and throughout the world.  The campaign will culminate with an Awareness Event at First Markham Place, 3255 Hwy. #7, East, Markham, Ontario, on February 21^st.

Patients needing stem cells transplants include those suffering from cancers, lymphoma, myeloma and other immune and genetic disorders. Only 30 per cent of them can typically find a match within their own family, while the other 70 per cent must depend on the generosity of unrelated donors. Because the likelihood of finding a match is far greater within one’s own ethnic group, more donors from diverse backgrounds are needed to sign up for the OneMatch Stem Cell and Marrow Network. Equally, at any given time at least 600 Canadian patients facing life-threatening illnesses are in need of a stem cell transplant.

“By partnering with groups such as OtherHalf – Chinese Stem Cell Initiative, OneMatch and Canadian Blood Services, recognize and embrace the power of community; to lead by example by making stem cell transplants more readily available for patients not only within their community, but within Chinese communities around the world,” confirms Sue Smith, Executive Director, OneMatch Stem Cell and Marrow Registry.  “I ask for other diverse groups to follow this example and work together side-by-side with OneMatch towards our collective goal of increasing all diversities on OneMatch Stem Cell and Marrow Registry.”

Helping the Chinese community not just in Canada but around the world is at the centre of Susan Go, Co-chair of OtherHalf – Chinese Stem Cell Initiative’s reason for holding the campaign and awareness event.   “As a community we can no longer be complacent thinking, ‘it will not be me’ when clearly our community is underrepresented on the OneMatch Network.  As a group we needed action now from all parts of our community to make sure we have done everything within our power to increase the number of Chinese registrants here in Canada and around the world.”

There are many activities the group has planned over the next four weeks from the launch of http://www.chinesestemcell.ca, an information booth at the CNY Rogers Centre event on Jan. 23, 24 and 25 and youth focused recruitment activities on YouTube and Facebook all centred around promoting the immediate need and the February 21^st Awareness Event at First Markham Place.

If you’re interested in becoming the one match to save someone’s life, join OneMatch today by logging onto www.onematch.ca or calling Canadian Blood Services at 1 888 2 DONATE (1 888 236-6283).

About OtherHalf Chinese Stem Cell Initiative

Currently there are about 10 Chinese Canadian patients waiting for unrelated stem cell donors in Canada alone.  Out of over 12 million donors registered in the Bone Marrow Donors Worldwide database less than 500,000 of these registrants are of Chinese origin.

OtherHalf—Chinese Stem Cell Initiative was started by a group of concerned citizens from diverse backgrounds who wanted to make this dire situation known to the Chinese public.  In collaboration with OneMatch, the Canadian stem cell agency, our goal is to increase the number of registrants of Chinese origin in the stem cell registry.  With help from OneMatch, patients, various community organizations, medical experts, and media specialists, we are conducting awareness campaigns to deflect myths and educate the public about stem cell donation.  It is our sincere hope that this will motivate the Chinese community to champion this initiative and encourage all Chinese Canadians to register as stem cell donors with OneMatch.

We would like people to think how good they would feel if they could save a life… BE THE ONE.  Be the ‘other half’ to save a life.

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

About Canadian Blood Services/OneMatch

Canadian Blood Services is a national, not-for-profit charitable organization that manages the supply of blood and blood products in all provinces and territories outside of Quebec. Canadian Blood Services also oversees the OneMatch Stem Cell and Marrow Network, and provides national leadership for organ and tissue donation and transplantation. Canadian Blood Services operates 40 permanent collection sites and more than 19,000 donor clinics annually. The provincial and territorial Ministries of Health provide operational funding to Canadian Blood Services. The federal government, through Health Canada, is responsible for regulating the blood system. For more information, please visit our Web site at www.blood.ca.

CONTACT:

Amy Tam, Co-chair

Susan Go, Co-chair

Email – info@chinesestemcell.ca

(416) 760-6181

John Bromley, ABC

Communications Manager, OneMatch Stem Cell and Marrow Network

(416) 313-4438

Waiting for a match

Local launches stem cell campaign to save her life

January 23, 2009 05:50

http://www.metronews.ca/toronto/local/article/171100

Brian Towie/Metro Toronto – Other Half co-chairs Susan Go, left, and Amy Tam get the word out about Chinese stem cell donations at a press conference in Toronto Thursday. The Chinese stem cell initiative group will appear at the Rogers Centre this weekend during Lunar New Year celebrations.

Shu Yi Fung knows how important and difficult it is to find a stem cell match to help cure her leukemia.

The Chinese-Canadian has been waiting for a donor for the past year and a half, in order to undergo a bone marrow transplant.

But with no match found among her siblings she faces a less than 10 per cent chance of finding a match, like other people of Chinese origin awaiting the procedure.

Comparatively, Caucasian patients have an 80 per cent success rate. That’s because ethnic Chinese are direly underrepresented on worldwide donor networks.

In fact, less than 500,000 (or 4.2 per cent of Chinese) are registered, dramatically reducing the chances of doctors tracking down a match for transplant patients.

That’s why Fung hopes her fellow Chinese can help by registering with OneMatch, a national stem cell and marrow network.

“It would be a very precious gift for us during our Chinese Lunar New Year,” Fung said in a statement at a press conference.

“I’m appealing on behalf of all leukemia patients to all you healthy people.”

It’s a state of affairs that Other Half — Chinese Stem Cell Initiative, a group of concerned Chinese-Canadians spearheading this campaign, wants to change.

Partnering with OneMatch, the group is working to get the word out on how important it is for Canada’s Chinese community to register on OneMatch’s database.

Susan Go, co-chair of Other Half, says there are challenges to getting the urgency of its message out among the community.

“We realized that there are certain unique barriers we need to address right away,” she says.

“First of all, Chinese Canadians don’t think there is an urgency in this matter. Secondly, people are afraid to join the registry because they think that donating stem cells is a very painful process and risky to their health.”

Still, Go says Chinese-Canadians are people who unite when there is a problem to solve — and she’s confident they will answer this call for help.

“Our hope is that every Chinese who hears this message will take that step to register with OneMatch,” she says. “Just think how good you would feel if you could save a life.”

For more information, visit http://www.onematch.ca/ or http://www.chinesestemcell.ca/.

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

Chinese Stem Cell Initiative

A wonderful organization called “Chinese Stem Cell Initiative” has recently been formed with the singular mission of increasing the number of registrations of Chinese origin in stem cell registries worldwide.  Our family is so touched by this, and the wonderful people behind its formation.

Please take a look at its website.

Be A Donor.  Spread The Word.

Sincerely,

Patrick

————-

http://www.chinesestemcell.ca/

Our Mission

“To increase the number of registrants of Chinese origin in the stem cell registry worldwide.”

Our Message

There are over 12 million donors registered in the Bone Marrow Donors Worldwide database. The Canadian stem cell agency, OneMatch, is a member of that network. Less than 500,000 (or 4.2%) of these registrants are of Chinese origin.

Currently there are about 10 patients of Chinese origin waiting for unrelated stem cell (bone marrow) donors in Canada. Caucasian patients needing stem cell transplants have about 80% success rate in finding unrelated matched donors. However, Chinese patients have less than a 10% chance of finding unrelated matched donors, which means that more than 90% of the patients are not able to have the life-saving stem cell transplants they need. This is because Chinese are grossly under-represented in the worldwide stem cell registry.

OtherHalf—Chinese Stem Cell Initiative was started by a group of concerned citizens from diverse backgrounds who wanted to make this dire situation known to the Chinese public. In collaboration with OneMatch, the Canadian stem cell agency, our goal is to increase the number of registrants of Chinese origin in the stem cell registry. With help from OneMatch, patients, various community organizations, medical experts, and media specialists, we are conducting awareness campaigns to deflect myths and educate the public about stem cell donation. It is our sincere hope that this will motivate the Chinese community to champion this initiative and encourage all Chinese Canadians to register as stem cell donors with OneMatch.

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

Gift of Life – A potential donor identified!

WE ARE ALL EXTREMELY EXCITED AND PROUD TO FIND OUT THAT ONE OF THE REGISTERED DONORS AT OUR SUMMER DRIVES HAS BEEN IDENTIFIED AS A POTENTIAL DONOR!!!  Below is the notification from Gift of Life:

On Jun 22, 2008 you volunteered to join the Gift of Life Bone Marrow Registry at a recruitment drive held at the Chinese Martyrs Catholic Church. We are thrilled that you made the important decision to be a part of this life-saving resource for patients around the world!

You have been identified as a potential match for a 6 year old boy suffering from Inherited Immune Systems Disorders needing a bone marrow transplant.

As you can imagine, time is critical for the patient who is awaiting the transplant, so it is very important that I speak with you as soon as possible in order to explain the next steps in the donation process. Please contact me as soon as possible by phone at 800-9MARROW or e-mail me at hseidman@giftoflife.org to arrange a time to speak.

Thank you very much, and I look forward to hearing from you soon!

It truly is a gift of life for someone in need.  

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

Brother of leukemia patient in China changed his mind on day of donation – 捐骨髓日哥變卦 弟網上懇求生機

【明報專訊】按照原來的計劃，身患白血病的張成友將於春節前在北京接受骨髓移植，可原本答應為他捐獻骨髓的哥哥卻在手術前突然改變主意。張成友日前在網上發帖，懇請哥哥捐獻骨髓，給自己生的希望。

《京華時報》周六報道，張成友今年32歲，老家在河北遷安，大學畢業後留京工作已有10年，目前為西門子(中國)有限公司醫療部工程師。

2007年1月，因身上出現血點，張成友被確診為M5急性髓係白血病。接受了6個療程的化療後，張成友回老家休養了一年。去年9月，他的病情復發。

張成友說，患病後，他一邊接受化療，一邊通過中華骨髓庫尋找配型相合的骨髓捐獻志願者。張成友的哥哥也接受了HLA配型，結果為「半相合」。

骨髓移植大概得4、50萬元人民幣。張成友說，得知他患病的消息後，公司同事為他捐款7萬多元，公司領導還答應為他解決部分費用，加上自己借一點，錢基本上夠了，手術原計劃于春節前進行。

張成友哥哥上月28日從老家來京，住進304醫院做骨髓移植的術前準備。張成友表示，次日一早，醫生準備為哥哥做體檢時發現，哥哥已不辭而別，手機也處於關機狀態。

張成友隨即返回遷安，登門尋找卻不見哥哥，打他手機也不接。嫂嫂後來打來電話說，擔心手術成功率太低並對自己身體有影響，哥哥已不願捐獻骨髓。

張成友元旦在網上發了一個名為《哥哥，我想活》的帖子，希望哥哥打消顧慮捐獻骨髓，給他生的希望。

張成友哥哥周五中午在電話中表示，他和張成友的配型只是「半相合」，僅符合手術的最低要求。他擔心手術成功率太低，且自己身體一直不太好，患腰椎間盤突出已有多年，擔心手術對身體有損害。更讓他為難的是，他的妻子對此堅決反對，甚至以離婚相要挾。

據主治醫生閆蓓表示，「半相合」，手術成功率肯定比「全相合」的低，因為抗排異反應更難，所以手術費用也會更高。但目前來說，已沒有別的選擇。

32 year old Cheung Sing-Yao, a medical engineer in Beijing, was first diagnosed with acute leukemia in January 2007. 

A perfect unrelated marrow match was identified in Jiangxi at that time, however Cheung could not afford the approximate cost of $500,000 Yuan for the transplant, and therefore went through 6 rounds of chemotheraphy instead to try and put his leukemia in remission.  Which lasted for about a year, and ultimately relapsed in September 2008.

According to Cheung’s oncologist, a marrow transplant is Cheung’s only hope now for long term survival.  Unfortunately, the unrelated donor in Jiangxi has retracted their participation to be a marrow donor, leaving Cheung’s older brother, who is a half match (or haplo match), his only hope.

Cheung’s co-workers raised approximately $70,000 Yuan.  Cheung borrowed  from the bank, and Cheung’s employer agreed to pay for the balance so that a transplant can proceed before this Spring. 

Cheung’s brother travelled from their home village to Beijing to start the pre-transplant physical exams.  However, on the morning of Dec 28th, 2008,  he evidently changed his mind, left the hospital without notice and kept his cell phone turned off since.

Cheung repeatedly tried to reach his brother to appeal his decision, but was unable to get through in person or by phone.   On Jan 1,2009 , Cheung posted his appeal on a blog hoping to reach his brother through the internet.

Through a phone interview on Jan 2, 2009, Cheung’s  brother, a primary school teacher, told a local reporter that the success rate of a haplo transplant is relatively low compared to a transplant from an unrelated perfect match, and he was concerned that the donation process would affect his already ailing back.  He also told the reporter that his wife would divorce him if he went through with the donation. 

According to Cheung’s oncologist, the donation process definitely will not affect Cheung’s brother’s health in any way.  And even though the success rate of a haplo transplant is lower than a perfect unrelated match, time is of the essence for Cheung right now and a transplant of his older brother’s half-matched marrow is Cheung’s best hope for survival.

While Cheung and his parents continue to hope that his older brother will change his mind soon, Cheung’s step-sister has recently submitted her blood for an HLA typing, and the Chinese marrow registry continues to search for a perfect unrelated match for Cheung.

 

Click here for your local Registry’s link and REGISTER TODAY to help Carolyn and Others.

 

 

 

 

Our love goes out to the family and friends of Valerie Niles

LISA PRIEST    The Globe and Mail

January 2, 2009 at 12:00 AM EST

A 36-year-old leukemia patient who fought the Ontario government to have a stem-cell transplant funded in the United States won her case – but died before she was able to obtain the treatment, prompting calls for an investigation.

Valerie Niles’s last few hours of life were spent in an Ottawa hospital bed with her mother’s hand on her heart until its final beat on the clear, cold morning of Dec. 22.

Her death marked the end of an 11-month battle with acute myeloid leukemia, but also with government. Ms. Niles and her oncologists garnered a coveted spot for a special stem-cell transplant treatment in Seattle; she was accepted, but the Ontario Health Insurance Plan refused to fund it in August.

Although Ms. Niles, who spent much of her life in Toronto, eventually won her case on an appeal, by then seven weeks had passed and the earliest treatment opportunity was in November. Shortly before she was to leave for Seattle, she developed a complication, rendering her ineligible for the treatment, her best shot at survival gone.

“If I had gone in August, I would be in recovery now. It was OHIP’s refusal to fund our case that caused the delay,” Ms. Niles said in a telephone interview from her Ottawa hospital room five days before her death. “… I feel they did it just to save money. They do it to weed out the weak.”

Ms. Niles’s case raises disturbing questions about Ontario’s out-of-country process, which has already undergone one review after cancer patient Suzanne Aucoin of St. Catharines, Ont., was denied funding for treatment she received in the United States.

Although that external review is complete, problems persist, not only for Ms. Niles but another patient, Susan Caiger-Watson. Like Ms. Niles, she was denied similar treatment in Seattle, won on appeal but then developed a complication, making it impossible for her to obtain treatment. She died on Aug. 24, leaving behind husband Chris Fraser and daughter Sophie, 11.

“It’s one thing to fight a deadly disease but when you have to fight the system at the same time, that’s doubly deadly,” Mr. Fraser said. “You would think that after one sacrifice the lesson would be learned.”

Perry Brodkin, a health lawyer in private practice who was the sole lawyer for OHIP from 1973 to 1991, read Ms. Niles’s case and said evidence from her oncologists was overwhelmingly in her favour.

“This case cries out for a brand new investigation of OHIP’s prior approval process,” Mr. Brodkin said. “It’s not working if they deny funding in a case like this. Are we going to put another patient’s life on the line with this OHIP approval process?”

He also called on the coroner to investigate whether the government’s denial of funding and the subsequent delay was a contributing factor in Ms. Niles’s death, which he labelled a travesty.

Ontario’s out-of-country pre-approval process is seen as a medical safety valve for patients. For treatment to be approved, the procedure must be unavailable in Ontario, cannot be experimental and should be deemed medically appropriate. However, patients can have out-of-country treatment funded even if it is available in the province if there is a delay that would cause irreversible tissue damage or death. The patient’s physician must fill out part of the form.

Ontario’s Health Ministry says it has increased the number of patients approved for out-of-country funding.

In the 2002-03 fiscal year, 2,083 patients were approved for out-of-country care. From April 1, 2007, to March 11, 2008, a total of 6,132 patients had their treatment approved, according to government figures. (Those numbers do not include the referrals of emergency neurosurgery and cardiac patients sent to the United States for care.)

The number of people denied out-of-country treatments has also increased, although not nearly as much. In fiscal 2002-03, 225 patients were denied funding through the program, compared with 388 patients who were denied from April 1, 2007, to March 11, 2008.

After four rounds of chemotherapy failed to provide a remission for Ms. Niles, oncologists recommended she go to the Fred Hutchinson Cancer Research Center in Seattle, where a cancer-busting regimen of chemotherapy, total body irradiation and a radioactive monoclonal antibody that targets leukemia cells were provided.

Without this treatment, it was undisputed that Ms. Niles would die within a year, according to the decision of Ontario’s Health Services Appeal and Review Board, a panel that hears from patients who have been denied funding for out-of-country treatment.

In refusing her case on Aug. 19 last year, OHIP said the treatment is not accepted in Ontario as appropriate for a person in the same medical circumstances.

Ms. Niles saw the denial as the government “playing the odds and that’s disgusting.”

Even obtaining public documents on Ms. Niles case was riddled with obstacles. Although Ms. Niles did not ask for her name or documents to be restricted at the review board public hearing, the exhibits and efforts to contact her were achieved only after a lawyer became involved on behalf of The Globe and Mail.

Lorri Puil, an Ottawa-based physician scientist who also does medical advocacy, spent two months researching the case for Ms. Caiger-Watson’s appeal at no cost and was also involved with Ms. Niles’s case.

“I’ve seen patients who are dealing with a life-threatening disease, they’re trying to do the best they can with it and all of a sudden they are hit with the fact that their provincial government won’t pay for their treatment,” Dr. Puil said. “And so they get into this bureaucracy they shouldn’t have to deal with and are put through an extraordinarily painful process.”

Indeed, Mark Minden, medical oncologist and senior scientist at Princess Margaret Hospital and the Ontario Cancer Institute, who spent a full day of his own time testifying at the appeal of Ms. Niles, said the legislation to obtain out-of-country treatment can be prohibitive, especially when it involves cancer cases.

“I saw the legislation as not being very fair,” said Dr. Minden, who holds the Philip S. Orsino Chair in Leukemia Research at Princess Margaret. “I think it was denying people treatment that was potentially lifesaving.”

Dr. Minden said that if Ms. Niles had gone to Seattle, she had a 20- to 25-per-cent chance of survival at three years, compared with 10 to 15 per cent if she received treatment in Ottawa. The Seattle treatment would cost roughly $500,000 (U.S.).

He stressed that novel therapies to treat patients like Ms. Niles are expected to be available in Ontario this year.

With the Seattle treatment no longer possible, Ms. Niles went to the Ottawa Hospital, where she was to have a stem-cell transplant; her brother, Judd, a perfect match, was her donor. However, after two days of intensive chemotherapy, she developed complications and stopped breathing.

A newlywed, she leaves husband Jean-Marc Salvagno of Belleville, who owns a French bistro. “She was so full of life,” he said.

Yesterday, he was retrieving her ashes.

“Bureaucracy seems to have a lot to do this,” said mother Marianne Niles, 66, who is holding a private memorial of family and friends today. “She was good to go in the summertime. The doctors tried so hard; they all worked so hard for her.”

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