Truly preventive medicine
By JUDY SIEGEL-ITZKOVICH
You probably know about IVF, but have you heard of PGD? If the abbreviation is unfamiliar, you're not alone, as even many physicians have not heard of it. Yet pre-implantation genetic diagnosis, used in conjunction with in-vitro fertilization, is making it possible for couples who carry or even suffer from serious genetic defects to have completely normal, non-carrier babies.
Rabbi David Fuld and his wife Anita (left) alongside the mother of the first PGD baby to be treated and born at Sha'are Tzedek.
Some Jewish "traditions" you wouldn't want to pass on: One in five Ashkenazi Jews is a carrier of a genetic condition.
PGD, developed in stages in various parts of the world, is now offered at Tel Aviv Sourasky Medical Center, Jerusalem's Shaare Zedek Medical Center, Sheba at Tel Hashomer, Rambam Medical Center in Haifa, Hadassah University Medical Center in Jerusalem's Ein Kerem and Kaplan Medical Center in Rehovot. The very expensive double procedure has been subsidized for health fund members with supplementary insurance, and is performed for a high fee in most of these Israeli hospitals.
But only at Shaare Zedek has it been offered for free from the beginning, in March 2004. Now the government has added PGD to the basket of health services paid for by the members' health funds and subsidized by the Treasury. But this coverage is limited; it gives each couple a maximum of two healthy children
David Fuld, a non-practicing Orthodox rabbi, a mohel and a New York real estate mogul who with his wife Anita established and funded Shaare Zedek's PGD unit, will continue to offer unlimited PGDs for qualified Israeli couples. The 62-year-old Fuld, who has performed about 13,000 circumcisions as a mitzva, first became interested in the subject as a result of being an unpaid circumcisor. He has even circumcised many of the babies born healthy thanks to the unit. As a successful businessman, he says he "wanted to open this PGD lab to give back some of what I have received." The beauty of PGD is that it does not involve abortion, says Fuld in a recent interview with The Jerusalem Post, but merely the selection of healthy eggs for fertilization or of healthy, non-carrier embryos for implantation. As Shaare Zedek is a Jewishly observant hospital, the avoidance of abortion is a real plus. It is used even to identify embryos with genetic deafness or with neurofibromatosis, which can result in minor cosmetic symptoms or very serious ones.
Among the 45 genetic disorders for which the PGD lab has tested embryos (or polar bodies attached to newly removed or fertilized eggs) - are fragile X, monotonic dystrophy, cystic fibrosis, Tay Sachs, Bloom, Gaucher, thalassemia, Duchenne muscular dystrophy, familial dysautonomia, Niemann-Pick disease (type A), Fanconi, Canavan, retinoblastoma, Marfan, CIPA and other syndromes.
THE SHAARE ZEDEK lab, one of the few in the world willing to work on any disease, was also a pioneer in testing for genetic markers and not only mutations. The lab has also done sex selection of embryos for a couple who received approval from the Health Ministry committee that discusses such applications; this particular couple also needed PGD for preventing the implantation of an embryo with a disease.
The waiting time for PGD for a previously tested disease treatment is about a month, the time it takes a woman to start a new cycle for IVF. If the disease is one the lab has never done before, treatment can take three months, because an entirely new system has to be set up.
The benefactor has visited the top genetics departments in the world, including those at Harvard and Baylor, and says Shaare Zedek's "is second to none. The staff are especially skilled, devoted and caring. Shaare Zedek was the only place with a high level of genetics, medicine, fertility, ethics and halacha. There is no combination like this in the US," Fuld says enthusiastically: "This just the beginning. Our goal is to create a genetic center for world Jewry; we want to do anything we can to reduce the suffering of the Jewish People."
The lab could easily attract medical tourists, as PGD+IVF abroad costs up to three times the fees charged foreigners coming to Shaare Zedek.
Having invested $2 million in the hospital's PGD unit so far and coming to Jerusalem monthly, Fuld says "it is the most successful thing I have done in my life."
The result of his initiative are 62 healthy children so far - including a set of triplets and 10 sets of twins - born at Shaare Zedek, along with 20 women pregnant with 27 fetuses. The oldest child, born to a woman with myotonic dystrophy (which entails muscular degeneration, cardiac defects and impaired vision) whose risk of having a baby with the disease was one in two for each pregnancy, is four years old.
Shaare Zedek director-general Prof. Jonathan Halevy and medical genetics unit head Prof. Ephrat Levy-Lahad were rather doubtful when Fuld, who had been donating to the hospital since the 1960s, offered to sponsor the PGD center. They were not certain it would be in high demand, and knew it would require a major long-time commitment. Fuld consulted with some of Israel's leading rabbinical arbiters and was given endorsements on condition that PGD would not be used for "trivial reasons."
For example, the Shaare Zedek lab is careful to avoid eugenics: Staffers do return embryos that are disease carriers to the womb, so PGD will not artificially eliminate disease for future generations. If the family have a recessive disease and the lab does a polar body biopsy, they select for normal eggs, but the sperm could be carrying a mutation, thus making the embryo a carrier.
THE WELL-CONNECTED and persuasive businessman, who has become a self-taught expert in the field, convinced the hospital to set up the special lab and enlist qualified personnel. A handful of Shaare Zedek personnel went to Dr. Yuri Verlinsky's Reproductive Genetics Institute (RGI) lab in Cyprus to become convinced they could set up a PGD lab at Shaare Zedek, and Altarescu and a number of embyologists received advanced trained at the RGI lab in Chicago.