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。

血癌男��发帖求兄捐骨髓(图)

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.

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

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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