June 30, 2005
A Deadly Shortage
The lack of adult stem cell donors is taking a toll on Jewish cancer patients.
Judah White's shoulders curl in and his eyes shut tight as he coughs violently. A look of pain flashes across his face. As his coughing slows, he looks up to the ceiling of his mother's kitchen and takes a deep breath.
White is battling his third occurrence of Hodgkin's lymphoma, a cancer that attacks the lymph nodes. The fight has taken most of his energy.
"For me, the disease has always been associated with pain, and it's been a smorgasbord of pain," he said, his voice trailing off. "There's burning, there's aching, there's stiffness, there's bruising.... Literally, any type of pain you could possibly imagine."
White, a 38-year-old resident in internal medicine at Huntington Memorial Hospital in Pasadena, recently completed his latest round of chemotherapy, a traditional treatment for his disease. As expected, the chemotherapy has weakened his immune system, leaving him vulnerable to common infections and other complications.
To rebuild his immune system, to restore his health and vigor, White is trying a newer treatment, one that has been linked to a national debate over medicine, religion and ethics. Doctors have given White donated stem cells. If he's lucky, these stem cells will replenish his lost bone marrow.
These are "adult" stem cells from an adult donor. Unlike embryonic stem cells, which originate from a process that typically involves destroying an embryo, there is nothing controversial about using adult stem cells. In fact, most religious conservatives who oppose the science of embryonic stem cells specifically support the use of adult stem cells as an alternative.
Moreover, adult stem cells already are saving lives through regimens like the one being applied in White's cancer treatment. But there's a problem with adult stem cells, and it directly impacts the Jewish community. There just aren't enough stem cells donors, especially Jewish donors, whose genetic background will match better with Jewish patients in need.
This serious donor shortage, fueled by misunderstanding and insufficient outreach, is resulting in the deaths of cancer patients, although the exact number is almost impossible to determine; others patients, like White, have to settle for imperfect genetic matches, which put their lives at risk as well. Nearly 40 percent of those who need stem cell transplants never find a matching donor, according to a 2003 report from the World Marrow Donor Association.
"I'm a lucky example of the fact that there have been donors," White said. "People have stepped up to the plate, but I am concerned. There needs to be enough donors for those who need this type of treatment."
The picture is not entirely bleak. In the last five years, a handful of groups have formed to recruit Jewish donors. But fears generated by the embryonic stem cell debate continue to muddy an issue that should be clear cut and simple.
"When you say stem cell, most people think you mean embryonic stem cells," said Martha White, Judah's mother. "The whole concept is a little mushed up in everybody's head. They don't really think it through."
It's a confusion that is needlessly costing lives.
White first discovered a swelling in his chest in February 2003. He went to Huntington Memorial, drew his own blood and found a high white cell count. He initially worried about how he was going to break the news to people that he had contracted tuberculosis.
But that wasn't it.
The 38-year-old doctor is outside of age groups traditionally associated with Hodgkin's -- teens to people in their late 20s and seniors in their 50s to 70s -- so the idea that he might have cancer never dawned on him.
But after he got a radiologist to scan his chest, he noticed enlarged lymph nodes, a possible sign of cancer.
This cancer has one of the highest survival rates, but White has had a rough go of it.
The disease has sidelined his career for more than two years; he's only worked one month since his initial diagnosis. In that time, White has also lost his father to complications from diabetes, and he broke up with his girlfriend last fall.
When he isn't hospitalized, White lives in his mother's Westside home, staving off boredom by taking photographs and talking with friends.
White hopes that adult stem cells will strengthen his body, helping it to recover from the debilitating chemotherapy and to fight off the cancer; he never expected his treatment would be entangled in the national debate on embryonic stem cell research.
Embryonic stem cells are widely thought to have great potential for medical breakthroughs, because they can develop into any type of cell in the body. In theory, embryonic stem cell transplants could be used to create new components within a human body, from nerve cells in Alzheimer's patients to a natural pacemaker for heart patients, without fear of the patient's body rejecting the treatment.
Adult stem cells, by contrast, are specialized and have more limited application, but blood-forming stem cells already are saving lives today. The concept is that when adult stem cells are transplanted from a healthy donor to a lymphoma or blood cancer patient, the cells will begin rebuilding the patient's immune system by creating new bone marrow and white blood cells.
In 2004, doctors tried to rebuild White's blood system with his own stem cells, which had been extracted and set aside before he underwent chemotherapy. But that procedure didn't work. His cancer came back later that year, just after Rosh Hashanah.
Judah White has lifelong ties to Judaism. He attended Jewish day school as a child, and he studied medicine in Israel for four years. His faith and culture are vital to him, but his built-in Jewish genetics may have frustrated his pursuit of a cure.
The shortage of Jewish donors has worked against him. Out of 54 international agencies that register donors, only one is specifically geared toward the Jewish community, the Florida-based Gift of Life Bone Marrow Foundation. Its worldwide list of donors totals just 90,000.
The National Marrow Donor Program (NMDP), the nation's largest registry with 4 million donors, only contains 16 percent minority donors. It defines minority as including African Americans, Latinos, Asian Americans, Pacific Islanders and Native Americans, as well as Jews.
Compounding the Jewish donor shortage is the unique tissue type of most Jews born to Jewish parents. In America's heterogeneous sea, the Gift of Life database is a homogeneous anomaly, similar in many ways to lists of donors in Japan and Finland.
"When you look at the tissue types and the combinations of types from Ashkenazi and Sephardic Jews, they are unique," said Jay Feinberg, Gift of Life's founder and executive director. "They are unique in and of themselves, and they are unique in the international population."
While genetics often necessitates that Jewish patients be matched with Jewish donors, Sephardim and Ashkenazim can't necessarily donate to one another.
"Even within the groups, a Persian Jew trying to find a match with a Jew from Spain would also be very tough," Feinberg said.
Intermarriage -- the rate is about 50 percent in America -- presents another complicating factor.
With the return of White's cancer late last year, the search for a stem cell donor became more urgent. Even without the complication of Jewish genetics, the inability to find a donor match is common.
The chance of an exact tissue match with a sibling is one in four, and only 30 percent of patients find a suitable match within their family. For the remaining 70 percent, who must turn to an unrelated volunteer donor, the odds of finding a match are between one in 100 and one in 1 million.
The transplanting procedure itself exacerbates the need for a large population of donors. Unlike blood donors, who can give blood every eight weeks, people who donate adult stem cells are kept out of the donor pool for more than a year in case the transplant recipient requires more stem cells.
And "it's the donor who sets the timetable," White said. "If the person doesn't want to donate for whatever reason -- their kid is being bar mitzvahed or it's just a bad point in time for them -- that's it, they don't have to. There's no obligation."
Without enough Jews signed up on donor registries, matches become a matter of good enough rather than perfect.
Without an exact match, White faces an increased risk of graft-vs.-host disease, a form of rejection in which the new immune system attacks the patient, because it treats the already frail body as a foreign invader. Symptoms can include liver complications, skin disease, hair loss and digestive system problems.
Also, "there's no guarantee that the new immune system is going to take," said White, whose professional expertise informs him all too well. "You could die of infection. There are a thousand other complications."
Some of the risk and suffering could be avoided if patients could only find better-matched donors.
And his mother has tried.
The health of her son has become a cause for Martha White, a transplanted New Yorker, who is all at once intense and warm, religious and a feminist. Her past projects have included starting a children's Jewish book festival in Simi Valley.
Once her son's third bout with lymphoma was confirmed, she tapped her activist streak.
"I was informed that the Jewish community was underrepresented, so finding a match was harder," she said. "So I said, 'All right, let's organize a drive and see if we can get some people.'"
She sent an e-mail to six family friends, who in turn forwarded it to people they knew. The message stressed Judah's need for blood stem cells, not a bone marrow transplant -- which is an older, longer-established treatment. She took the risk of people confusing adult stem cells with embryonic stem cells. But she also wanted to make it clear that she wasn't looking for volunteers to submit to bone marrow donation, which is a comparatively lengthy and painful process.
Martha White was expecting 20 or 30 replies; more than 200 people turned out for the screening. The response shocked the Whites and the City of Hope, the agency Judah selected to handle the adult stem cell transplant. A single medical team in the back of her home struggled to keep pace with the long line of willing donors that snaked through the hallways. People had to be turned away. A second day for donor screenings was eventually added.
"I'm still getting phone calls from people who want to become part of it," said Martha White, marketing and sales director for Mount Sinai Memorial Parks and Mortuaries.
She is hoping to build on the donor drive for her son by establishing an as-yet-unnamed blood stem cell donor initiative for Jews that focuses on the Los Angeles area.
Some efforts already have been made. In the last year, marrow donor screenings were held at Temple Sinai (112 people screened), Hebrew Union College-Jewish Institute of Religion (69), Temple Isaiah (27) and Beth Shir Shalom (nine). The largest local effort occurred on last Aug. 29, when Nessah Educational and Cultural Center in Beverly Hills screened 1,111 people for a Persian Jewish cancer patient in New York.
Not all who test for the registries will qualify as donors. The screening process, which usually amounts to a simple cheek swab, disqualifies people over 60 and those with AIDS, cancer, insulin-dependent diabetes, frequent epilepsy, hepatitis B or C and tuberculosis.
College students are considered ideal donors, mostly because of the length of time they'll be able to remain on the registries. Hillel, the organization for Jewish college students, is working with Gift of Life to reach this desired demographic. Last year, Hillel drives took place on 50 campuses. Only two Southern California Hillel chapters took part -- UC Santa Barbara's screened 132 donors and UC Riverside's screened 33.
There would be more adult stem cell donors, except for perception problems. The major donor registries all use the words "bone marrow" in their name, because they began as registries for bone marrow donors. These days, many clients need adult stem cells instead, but the registries have consciously shied away from the politically charged term "stem cell" to avoid association with the controversy over embryonic stem cells.
Soon after President Bush weighed in on embryonic stem cells in 2001, the National Marrow Donor Program cautioned agencies on the use of the term "stem cells." The registries worry about endangering both financial support and public participation.
This calculation, however, has caused an undesired side effect.
Many confuse adult stem cell donation with the lengthy and frequently painful process of bone marrow extraction. (Bone marrow transplants also can be used to rebuild the immune systems of cancer patients.) Because harvesting bone marrow can result in substantial discomfort, doctors say, it also can create reluctance on the part of potential donors to register. This reticence is actually unwarranted, given the less painful adult stem cell donation process.
Thus, outreach to potential donors has been muddied by semantics, fueled by a mix of old terminology and new fears raised by the embryonic stem cell debate.
Some experts say that, in the United States, upward of 80 percent of donors are contacted for adult stem cell donation, and only 20 percent for bone marrow. Around the world, the numbers are more evenly split.
"We've seen a really large shift over the years," said Jill Kendall, program director of the City of Hope's Unrelated Marrow Donor Program. "Because blood stem cell transplants are a new modality, physicians were initially slow to use it, but now they're very eager."
An anonymous donor for White was identified in April. The donor came from one of the bone marrow registries. In keeping with transplant protocols, White will not meet him until the end of the year.
Judah White will endure a monthlong hospital stay as part of his treatment, and the potential complications of graft-vs.-host disease weighs on him. But he's trying to keep his focus forward, on getting out of the sick role -- the one he's had to endure for two years, ever since he first discovered that swollen lymph node.
"You still remember yourself as a healthy person. You're surrounded by healthy people, and you want to go out and do all of the same things they do," he said. "Every conversation is focused around your illness. You get tired of it, you get tired of talking about it."
Unlike the average cancer patient, he's painfully fully aware of what's happening to his body. He said he knows the God-awful worst and the best. And he knows that with each recurrence of cancer, his treatment options are dwindling.
"I think in the end, this is pretty much my last shot," White said as he played with a red string tied around his wrist -- a gift from a friend who went to Jerusalem. "And that's the hardest part to recognize."
He also knows that as more Jews join the donor registry, there's real hope that his prospects and those of other cancer patients will improve.
"It's a matter," he said, "of surviving and getting through to the next day."
To monitor Judah White's progress as he recovers from his stem cell transplant, visit www.judahdaniel.blogspot.com. To contact Martha White about her local adult stem cell initiative, e-mail, email@example.com.For more information about Gift of Life, visit www.giftoflife.org or call (561) 988-0100; for City of Hope, visit www.cityofhope.org or call (626) 256-4673; for Hillel donor drives, visit www.tzedekhillel.org or call (202) 449-6500.