Friends Crusade for Marrow Match

A2/B48/DR1101/A26/B35/DR0406. For Alan J. Kuo '85, a Dunster House alumnus suffering from chronic myelogeneous leukemia, this string of letters and numbers means life or death.

Friends of Kuo, an AIDS researcher at the University of California at San Francisco (UCSF), say Kuo has been told he has only one month to live.

"I am sad that my promising career is being prematurely terminated by a random disease," Kuo, 33, said on his page on the World Wide Web, which has attracted more than 21,000 visitors.

Kuo's relatives and former roommates have organized drives all over the world in hopes of finding a marrow match for Kuo.

However, in part because only 200,000 Asian-Americans currently are registered with the National Marrow Donor Program (NMDP), Kuo, a Chinese-American, has yet to find a match.

Time is rapidly running out. Nevertheless, organizers of Harvard's bone marrow drive, which will take place in Loker Commons on Sept. 23 and 24, remain optimistic about Kuo's chances.

Because Kuo's best match will most likely be found among people of Asian heritage, Harrison W. Lin '99, co-president of the Chinese Students Association (CSA), which is co-sponsoring Harvard's bone marrow drive, hopes all Asian-Americans on campus will register.

He and other volunteers have postered campus kiosks and made presentations to minority organizations to attract as many Asian-American students as possible. Asian-Americans comprise 18 percent of the undergraduate population.

"It just takes 15 minutes, and you can save a life," Lin said.

"It just takes 15 minutes, and you can save a life," Lin said.

A Fatal Discovery

Kuo, a native of Cherry Hill, N.J., who now lives in Berkeley, Calif., had just finished his Ph.D. in biochemistry at the Massachusetts Institute of Technology and moved to San Francisco to work in the labs of UCSF when he went in for what he thought was a routine eye appointment.

"He told me that he had gone in to get new eyeglasses," Kenneth D. Ho '85-'86, one of Kuo's former roommates in Dunster's G-entry, recalled. "And when the eye doctor was looking at his eyes, he kept him in for an hour and told him there was something unusual."

"At the time, I joked with him and he laughed about it, too," Ho said. "He kept saying, 'All I wanted was new glasses."

Then Kuo found out that he had chronic myelogenous leukemia in March 1995.

"It makes me sad that reality demands that I change my life, my plans, my ambitions," Kuo wrote in an e-mail to friends in April 1995.

Referring to his recent graduation from graduate school, Kuo wrote: "For the last three months, I have lived a life where I have been unprecedently happy, where all opportunity seems to open up itself before me, only to be shut down again quietly, randomly. Therefore, I am sad-not angry, just sad."

But, never one to dwell on the negative, Kuo added, "Of course, now that this is said, there are things to do."

At first, Kuo, whom friends describe as private, was hesitant to use his name and image in publicity. But he soon conceded to demands that they be used to generate public support.

James C. Kuo, Alan's father, said yesterday from Berkeley that the past two years have been "difficult and heartbreaking."

"I have to be optimistic, but it's very difficult because the antigen is very hard to find and hopefully, we'll find one soon," Mr. Kuo said.

He said Alan recently moved from the chronic stage of leukemia to its acute stage, which means the patient only has one or two months left to live.

Mr. Kuo said Alan recently underwent chemotherapy to treat his cancer cells but that the chemotherapy was only a short term solution. He said Alan was undergoing more chemotherapy later this week.

Mr. Kuo said it has been so difficult to find a match because one of Alan's antigens is so unique.

"Alan's antigen is very special and he has a difficult one" to match, Mr. Kuo said. "The number of new donors has not increased fast enough, although it has increased by one-third or one-half. We probably need a pool of a million donors of the same race."

In order to be a successful match, all six antigens on the donor's human leukocyte antibody (HLA) need to match Alan's antigens.

Mr. Kuo said there are two people so far who have been found to possess five of Alan's six antigens.

One match is a white woman who is a mother and the other is a young Japanese-American male, Mr. Kuo said.

Mr. Kuo said it was unusual for a Caucasian person to possess such a good match to Alan's genetic make-up but surmised that she probably had some Asian blood.

However, Ho said he was told by Kuo's doctor, Hope Rugo, a hematologist and oncologist with UCSF, that if Kuo receives an imperfect match there will be an 80 percent chance his body will reject the marrow.

Therefore, Kuo is still holding out for a perfect match, which would reduce the chance of rejection to 20 to 30 percent, Ho said. Dr. Rugo could not be reached for comment yesterday.

"They say there's a match in Japan, but we're not sure if it's a perfect match. In older databases, we need to get further DNA testing," Mr. Kuo said. "This has the potential to be perfectly matched, but we need to test it. So far, we have not been able to get consent from the donor in Japan."

Mr. Kuo said a request for donor consent was made by the Hutchinson Research Cancer Center in Seattle, which is handling Alan's donor search, more than two weeks ago. However, the center has yet to receive a response.

Therefore, friends and family of Alan Kuo are making a last-ditch effort to recruit as many Asian-American donors as possible.

Bone-Marrow Drives

Rebecca M. Young '86-'88 and Mark A. Simonoff, friends of Kuo from high school and college, are organizing Harvard's bone-marrow drive along with CSA's Lin.

The drive will focus on the minority and particularly the Asian-American community, where Kuo is most likely to find a match.

"Just as we inherit our eyes, hair and skin color, we inherit bone marrow in the same manner," Cheryl Louie, executive director for the Asian American Donor Program, said in a news release.

"When a patient is looking for a donor, his best possible chance to find a suitable donor is through his own ethnic community," she said.

But minority registration in the National Marrow Donor Program (NMDP) is low, making it difficult to find a donor that matches Kuo's marrow perfectly.

This summer, Kuo organized a website explaining his disease and urging all Asians to register.

"You and your friends can make the difference between life and death for me, as well as for others present and future who suffer from this cancer," Kuo wrote on his site.

A chain of e-mails was sent across the country in the Asian-American community with a similar petition for help, flooding the in-boxes of college students everywhere.

Helen S. Ng, who works on Asian-American donors for the Minnesota-based NMDP, said bone-marrow drives around the country have significantly increased registration in the past few months.

"The drives are happening faster than ever before," she said. "Thousands have registered through Alan's recruitment. There have been drives coast to coast in the U.S. and Hong Kong and Singapore."

Last week alone, a drive at the University of California at Berkeley registered nearly 1,000 minority donors.

This week, Harvard's CSA hopes to do the same.

Tomorrow and Wednesday, any minority student can register free of charge by taking a blood test. If a donor is found who matches Kuo's marrow type, he or she will be contacted and asked to give bone marrow.

Donation involves the extraction of bone marrow from the hip while the patient is under general or local anesthesia. Donors can go home after a few hours or rest in the hospital overnight. In a healthy individual, the body replaces the lost marrow, leaving no permanent damage.

Minority Controversy

This week's registry is free to minority students only. White students may also register, but they must pay $50.

Katosha L. Belvin, media coordinator for the NMDP, said there is good reason for the emphasis on minority registration.

Registration, which involves taking a blood sample, is expensive because of the cost of testing the donor's marrow type.

While a white patient has an 81 percent chance of finding a marrow match, an American Indian has a 75 percent, an Hispanic a 64 percent chance, an Asian a 55 percent chance and an African-American only a 47 percent chance of a match, Belvin said.

A grant from the United States Navy is currently paying for all African-Americans, Asian-Americans, Hispanics and Native-Americans to register free of charge, she said.

Kuo's friends also solicited money from Blue Cross/Blue Shield of Beth Israel Deaconess Medical Center in Boston to allow people of all races to register during the summer drives.

But Jol A. Silversmith '94, former president of the Civil Liberties Union of Harvard and current president of the Harvard Law School Civil Liberties Union, said this policy is unfair to white students.

"I'd really like the CSA and the bone marrow people for that matter to sit back and think about what they're doing," he said.

"This drive is being sponsored to help one particular person, but they are passing up the opportunity then to help other people who might be matched by other Harvard students," Silversmith said.

However, Kuo's friend Simonoff, who graduated from Harvard Law School in 1988 and was founder and past president of the Harvard Law School Civil Liberties Union, disagreed.

Although Simonoff said he is biased because he has been friends with Kuo since high school, he said he feels the bone marrow drive could help everyone.

"It's already easier for Caucasians to find a match, so why should we target them?" Simonoff asked. "Maybe I have a bias now because Alan if my friend. All I know is Alan doesn't have a match and this is the only way he's going to get one."

Press Coverage

Mr. Kuo said he has been both surprised and pleased by the outpouring of support from Alan's school friends and perfect strangers.

Kuo has received press coverage from NBC News, the San Francisco Examiner, the Chicago Tribune and other media networks across the country.

However, some have been less than receptive to Alan's saga.

Kenneth Ho said that one woman he approached for a bone-marrow drive this summer rebuffed him because she said she didn't believe Alan's life was more valuable than any other life because of his distinguished background and intellectual ability.

"It's true that a person in poverty might not get as much attention as Alan, but nevertheless, people who would otherwise not have a match are now going to be helped inadvertently because of Alan," Simonoff, a lawyer with the U.S. Department of Labor's Boston office, said.

Mr. Kuo also said the bone marrow drive was a worthy effort. "Even if it's not going to help him, it will help other people in the future and we all need this," he said.ReutersMAKING A POINTAn anti-uranium mining protester wearing a gas mask stands atop a banner covering a pile of barrels outside the Australian Prime Minister's Sydney office.

"It just takes 15 minutes, and you can save a life," Lin said.

A Fatal Discovery

Kuo, a native of Cherry Hill, N.J., who now lives in Berkeley, Calif., had just finished his Ph.D. in biochemistry at the Massachusetts Institute of Technology and moved to San Francisco to work in the labs of UCSF when he went in for what he thought was a routine eye appointment.

"He told me that he had gone in to get new eyeglasses," Kenneth D. Ho '85-'86, one of Kuo's former roommates in Dunster's G-entry, recalled. "And when the eye doctor was looking at his eyes, he kept him in for an hour and told him there was something unusual."

"At the time, I joked with him and he laughed about it, too," Ho said. "He kept saying, 'All I wanted was new glasses."

Then Kuo found out that he had chronic myelogenous leukemia in March 1995.

"It makes me sad that reality demands that I change my life, my plans, my ambitions," Kuo wrote in an e-mail to friends in April 1995.

Referring to his recent graduation from graduate school, Kuo wrote: "For the last three months, I have lived a life where I have been unprecedently happy, where all opportunity seems to open up itself before me, only to be shut down again quietly, randomly. Therefore, I am sad-not angry, just sad."

But, never one to dwell on the negative, Kuo added, "Of course, now that this is said, there are things to do."

At first, Kuo, whom friends describe as private, was hesitant to use his name and image in publicity. But he soon conceded to demands that they be used to generate public support.

James C. Kuo, Alan's father, said yesterday from Berkeley that the past two years have been "difficult and heartbreaking."

"I have to be optimistic, but it's very difficult because the antigen is very hard to find and hopefully, we'll find one soon," Mr. Kuo said.

He said Alan recently moved from the chronic stage of leukemia to its acute stage, which means the patient only has one or two months left to live.

Mr. Kuo said Alan recently underwent chemotherapy to treat his cancer cells but that the chemotherapy was only a short term solution. He said Alan was undergoing more chemotherapy later this week.

Mr. Kuo said it has been so difficult to find a match because one of Alan's antigens is so unique.

"Alan's antigen is very special and he has a difficult one" to match, Mr. Kuo said. "The number of new donors has not increased fast enough, although it has increased by one-third or one-half. We probably need a pool of a million donors of the same race."

In order to be a successful match, all six antigens on the donor's human leukocyte antibody (HLA) need to match Alan's antigens.

Mr. Kuo said there are two people so far who have been found to possess five of Alan's six antigens.

One match is a white woman who is a mother and the other is a young Japanese-American male, Mr. Kuo said.

Mr. Kuo said it was unusual for a Caucasian person to possess such a good match to Alan's genetic make-up but surmised that she probably had some Asian blood.

However, Ho said he was told by Kuo's doctor, Hope Rugo, a hematologist and oncologist with UCSF, that if Kuo receives an imperfect match there will be an 80 percent chance his body will reject the marrow.

Therefore, Kuo is still holding out for a perfect match, which would reduce the chance of rejection to 20 to 30 percent, Ho said. Dr. Rugo could not be reached for comment yesterday.

"They say there's a match in Japan, but we're not sure if it's a perfect match. In older databases, we need to get further DNA testing," Mr. Kuo said. "This has the potential to be perfectly matched, but we need to test it. So far, we have not been able to get consent from the donor in Japan."

Mr. Kuo said a request for donor consent was made by the Hutchinson Research Cancer Center in Seattle, which is handling Alan's donor search, more than two weeks ago. However, the center has yet to receive a response.

Therefore, friends and family of Alan Kuo are making a last-ditch effort to recruit as many Asian-American donors as possible.

Bone-Marrow Drives

Rebecca M. Young '86-'88 and Mark A. Simonoff, friends of Kuo from high school and college, are organizing Harvard's bone-marrow drive along with CSA's Lin.

The drive will focus on the minority and particularly the Asian-American community, where Kuo is most likely to find a match.

"Just as we inherit our eyes, hair and skin color, we inherit bone marrow in the same manner," Cheryl Louie, executive director for the Asian American Donor Program, said in a news release.

"When a patient is looking for a donor, his best possible chance to find a suitable donor is through his own ethnic community," she said.

But minority registration in the National Marrow Donor Program (NMDP) is low, making it difficult to find a donor that matches Kuo's marrow perfectly.

This summer, Kuo organized a website explaining his disease and urging all Asians to register.

"You and your friends can make the difference between life and death for me, as well as for others present and future who suffer from this cancer," Kuo wrote on his site.

A chain of e-mails was sent across the country in the Asian-American community with a similar petition for help, flooding the in-boxes of college students everywhere.

Helen S. Ng, who works on Asian-American donors for the Minnesota-based NMDP, said bone-marrow drives around the country have significantly increased registration in the past few months.

"The drives are happening faster than ever before," she said. "Thousands have registered through Alan's recruitment. There have been drives coast to coast in the U.S. and Hong Kong and Singapore."

Last week alone, a drive at the University of California at Berkeley registered nearly 1,000 minority donors.

This week, Harvard's CSA hopes to do the same.

Tomorrow and Wednesday, any minority student can register free of charge by taking a blood test. If a donor is found who matches Kuo's marrow type, he or she will be contacted and asked to give bone marrow.

Donation involves the extraction of bone marrow from the hip while the patient is under general or local anesthesia. Donors can go home after a few hours or rest in the hospital overnight. In a healthy individual, the body replaces the lost marrow, leaving no permanent damage.

Minority Controversy

This week's registry is free to minority students only. White students may also register, but they must pay $50.

Katosha L. Belvin, media coordinator for the NMDP, said there is good reason for the emphasis on minority registration.

Registration, which involves taking a blood sample, is expensive because of the cost of testing the donor's marrow type.

While a white patient has an 81 percent chance of finding a marrow match, an American Indian has a 75 percent, an Hispanic a 64 percent chance, an Asian a 55 percent chance and an African-American only a 47 percent chance of a match, Belvin said.

A grant from the United States Navy is currently paying for all African-Americans, Asian-Americans, Hispanics and Native-Americans to register free of charge, she said.

Kuo's friends also solicited money from Blue Cross/Blue Shield of Beth Israel Deaconess Medical Center in Boston to allow people of all races to register during the summer drives.

But Jol A. Silversmith '94, former president of the Civil Liberties Union of Harvard and current president of the Harvard Law School Civil Liberties Union, said this policy is unfair to white students.

"I'd really like the CSA and the bone marrow people for that matter to sit back and think about what they're doing," he said.

"This drive is being sponsored to help one particular person, but they are passing up the opportunity then to help other people who might be matched by other Harvard students," Silversmith said.

However, Kuo's friend Simonoff, who graduated from Harvard Law School in 1988 and was founder and past president of the Harvard Law School Civil Liberties Union, disagreed.

Although Simonoff said he is biased because he has been friends with Kuo since high school, he said he feels the bone marrow drive could help everyone.

"It's already easier for Caucasians to find a match, so why should we target them?" Simonoff asked. "Maybe I have a bias now because Alan if my friend. All I know is Alan doesn't have a match and this is the only way he's going to get one."

Press Coverage

Mr. Kuo said he has been both surprised and pleased by the outpouring of support from Alan's school friends and perfect strangers.

Kuo has received press coverage from NBC News, the San Francisco Examiner, the Chicago Tribune and other media networks across the country.

However, some have been less than receptive to Alan's saga.

Kenneth Ho said that one woman he approached for a bone-marrow drive this summer rebuffed him because she said she didn't believe Alan's life was more valuable than any other life because of his distinguished background and intellectual ability.

"It's true that a person in poverty might not get as much attention as Alan, but nevertheless, people who would otherwise not have a match are now going to be helped inadvertently because of Alan," Simonoff, a lawyer with the U.S. Department of Labor's Boston office, said.

Mr. Kuo also said the bone marrow drive was a worthy effort. "Even if it's not going to help him, it will help other people in the future and we all need this," he said.ReutersMAKING A POINTAn anti-uranium mining protester wearing a gas mask stands atop a banner covering a pile of barrels outside the Australian Prime Minister's Sydney office.