Measure ‘R’ contains curious ‘reform’
On November’s ballot, tucked among the local measures affecting only Los Angeles, is curious Measure R, a plan by the Los Angeles City Council to provide each of the 15 council
members an extra $570,000 in pay, by my own estimate roughly $1.25 million in subsidized health care per person for life and an extra pension windfall per person worth hundreds of thousands of dollars.
Council President Eric Garcetti, as chair of the city Elections Committee, assigned the measure the letter “R” for “reform.” But critics — including retired Department of Neighborhood Empowerment chief Greg Nelson, city ethics commissioner and journalist Bill Boyarsky and the editorial boards of the Los Angeles Daily News and Los Angeles Times — call it something else: a sneaky way to loosen the accountability of our public officials.
And here’s the kicker: The “proof” that purports to demonstrate the measure’s effectiveness? It doesn’t exist.
On the ballot, Measure R will be described by proponents as a law that improves term limits and city ethics rules. Many voters will assume it’s a good idea, since it’s backed by the League of Women Voters and Chamber of Commerce.
In truth, Measure R wipes out the limit of eight years, allowing our existing crop of 15 council members — and all subsequent ones — to stay in office 12 years. (Voters can try ousting them earlier, but the history of such efforts is not encouraging.)
Measure R did not arise from citizens. In fact, polls show that Angelenos oppose efforts to soften term limits. Nor would voters seek to hand each of our current council members an additional $1 million to $2 million in pay and perks.
Only history will tell the tale of how Measure R really came to be. What is known, however, is this: It was proposed in vague outline by the chamber and league on a Friday. The council — which can take months just deciding the color of recycling bins — backed it the following Tuesday.
I’ve seen a lot of self-interested moves by politicians. One was the clever move in 1990 by the City Council, also peddled as “reform,” to forever tie their pay raises to those of Superior Court judges. As a result, every time overworked judges get a pay raise, so do the 15 council members. That’s why they earn $149,000, the highest-paid council members by far in a major U.S. city. (New York City, a far costlier place to live, pays its council members $90,000; San Francisco, another more expensive city in which to live, pays $91,000).
Although Measure R is touted as ethics reform, City Attorney Rocky Delgadillo and Ethics Commissioner Boyarsky — who is also a columnist for The Jewish Journal — have said it actually helps lobbyists cover their tracks.
Los Angeles Area Chamber of Commerce board member Ron Gastelum defended Measure R to me, saying the chamber and league proposed it because “it takes a council member the entire first term to really learn the business of the city,” and council members start running for other offices during their second term.
According to Gastelum, “after closely examining all these factors, we had to conclude that an additional term is needed.”
Except no “examination” happened. In an interview, Gastelum told me that neither the chamber nor league studied the achievements of legislative bodies limited to eight years, vs. those with 12. Moreover, they did not contact other cities or regions, nor did they define what “effectiveness” is.
Over the summer, league past president Cindy O’Connor admitted to the Tarzana Neighborhood Council that the league set up Measure R as “a carrot and stick.”
The carrot, she said, was their claim of an ethics crackdown. The stick, she said, was the unpopular term limits extension which could never pass alone.
Nelson says, “Measure R is really horrifying, because if you are lobbyist and you work on a contingency and don’t get paid until the issue you’re working on is over, you don’t, under this ‘reform,’ have to report that you are lobbying on the issue. So they are invisible! This is what Boyarsky and Delgadillo found unconscionable.”
Boyarsky, who cannot criticize Measure R because he is on the Ethics Commission, has nevertheless voiced extreme displeasure that it arose from backroom dealing and waters down city ethics laws.
“When I found out it eases regulations on lobbyists, I started asking all these questions of our [commission] staff,” he told me. “But that was all I could do. I am prohibited from criticizing ballot measures. My only consolation is I believe it’s going to lose.”
Would the City Council be more effective given 12 years instead of eight?
Nelson, who spent decades as an aide to fiery former Councilman Joel Wachs, says no.
“I realized it didn’t matter how much time council members have in office, the day I got this call from the Los Angeles Times,” he told me. About 15 years ago, before term limits, the newspaper asked Nelson to name the most important things the council had achieved that year.
“I couldn’t think of a single thing to put on a list for them,” he recalls. “The lesson is, given more time, the council is no more effective and no more interested in the big issues. I saw it firsthand.”
IMAGE IS EVERYTHING
On Oct. 4, the Beverly Hilton became the only place in town where you could watch Jeffrey Tambor and Rabbis Laura Geller and Debra Orenstein say Hamotzi.
Tambor was there to do double duty both as emcee of the fourth annual Jewish Image Awards and to pick up an award for Excellence in Portrayal of Male Jewish Character in Television for his role as convict-convert George Bluth Sr. on the Fox Emmy-winning comedy “Arrested Development.”
The awards, presented by the Los Angeles Entertainment Industry Council of the National Foundation for Jewish Culture (NFJC), recognizes outstanding contemporary creative work, transcending stereotypes and cliches, that portrays Jewish values, history and traditions in film and television.
Tambor joked that although his grandparents, Yossel and Gertrude, were Orthodox, he is so Reform that he attends Temple Beth McPherson, where on Kol Nidre the cantor performed songs from “Pippin.”
The night was big on laughs in more ways than one: the three winners in the TV category were all from comedies.
The Excellence in Portrayal of Female Jewish Character in Television went to a Jew-by-choice. “Sex and the City’s” Kristen Davis won for her role as WASP Charlotte York, who undergoes conversion for the love of Harry Goldenblatt. Despite the amount of bed-hopping on the HBO series, creator Michael Patrick King called the Charlotte-Harry story line “one of the most controversial things to happen on the show.”
Davis said the candlelighting prayer was the hardest thing she ever had to do, and she still is uneasy about watching herself say it on screen.
As “Saturday Night Live” alum Laraine Newman presented the award for Television Episode to writer Joel Cohen for “The Simpsons'” Krusty the Clown-themed episode, “Today I am a Clown,” she noted that not since “Bam-Bam’s bris” on the “Flintstones” had Judaism played such a role in an animated series.
Cohen said the episode, where Hershel “Krusty” Krustovsky becomes a bar mitzvah to get a star on the Jewish Walk of Fame, was written and treated with a lot of respect.
Considering the dearth of Jewish TV characters this season, next year’s probably won’t be as humorous.
Actor, singer and Tevye-forever Theodore Bikel presented awards to two pieces of nonfiction. Menachem Daum’s “Hiding and Seeking,” about a man who wants his ultra-Orthodox sons to appreciate the contributions of non-Jews – especially the Polish family who rescued his father during the Shoah – won for Excellence in a Documentary.
The award for Excellence in Promoting Cross-Cultural Understanding went to “Paper Clips,” a documentary by Joe Fab that chronicled what happened in 1998, when white Christian students at a Tennessee middle school filled a railcar with 11 million paper clips to give a sense of how many people were killed in the Holocaust.
The three major awards were spread throughout the evening. Actress and MorningStar Commission board member Caroline Aaron (who voiced Dr. Marcia Fieldstone in “Sleepless in Seattle”) presented Hadassah’s MorningStar Commission Marlene Adler Marks Woman of Inspiration Award to executive producer Caryn Mandabach. Mandabach, who has produced nearly “1,000 hours of television with shows like “Roseanne,” “Third Rock From the Sun” and “The Cosby Show,” joked that three months after she met the man who would become her husband, she was thrown by the fact that he wasn’t Jewish.
“How many of you think Mandabach is a Jewish name?” she asked, polling the crowd.
Uber producer Mark Gordon received the 2004 Tisch Industry Leadership Award for his work on such films as “The Day After Tomorrow” and “Saving Private Ryan.” Gordon, who joked that Keanu Reeve’s character in “Speed” was originally supposed to be a Chasidic rabbi, said that to him, being Jewish means “not going along, not giving up, not being beaten.”
“The OC” creator Josh Schwartz received the first-ever Creative Spirit Award, presented by cast members Kelly Rowan and Peter Gallagher, who said that in his role as patriarch of the mixed-marriage Cohens, he was proud to be “TV’s first Jewish family in Orange County.”
The 28-year-old Schwartz, whose show was called “guilty pleasure of the year” by VH1, held up his award and said of all the things he has done and won “this is the thing my mom is most proud of.”
Others in the grand ballroom that night included Todd Leavitt, president and COO of the Academy of Television Arts and Sciences and his wife, Lauren; Peter Horton; Mark Feurstein, Joan Hyler; Shalhevet founder Jerry Friedman, and Jessie and Pauli, two Sigma Alpha Epsilon Pi sisters from MTV’s “Sorority Life,” who have worked with the MorningStar Commission since their season finale.
Since this is the 350th anniversary of the Jews arrival in America, NFJC felt it was only fitting to announce the “Top 10 Great American Jewish Films.” The selection process, which was launched last July, allowed the public to vote on feature films and documentaries that best embody Jewish values, culture and experience.
The films are: 10. “The Graduate,” 9. “Diary of Anne Frank,” 8. “Annie Hall,” 7. “The Jazz Singer” (original version), 6. “Exodus,” 5. “Gentleman’s Agreement,” 4. “The Pianist,” 3. “Kissing Jessica Stein” (Tambor noted that Tovah Feldshuh, who co-stars in the film, “must have voted a lot”), 2. “Fiddler on the Roof” and – No. 1 – “Schindler’s List.”
The folks at “Yentl” have not yet demanded a recount. – Shoshana Lewin, Contributing Writer
ROUNDTABLE DOES LUNCH
The Jewish Business Leader Roundtable (JBLR) celebrated its first anniversary at Tarzana’s El Caballero Country Club on Oct. 15. But instead of its typical 7 a.m. breakfast meeting, Roundtable regulars shared an elegant lunch with guest speaker Norman Pattiz, founder and chairman of Westwood One, who recounted his entrepreneurial past and his current efforts to bring balanced news to the Middle East.
Pattiz had worked as sales manager for local television station KCOP in the late 1970s, but a week before his wedding he was fired and replaced by the new general manager’s younger brother.
When he returned to Los Angeles from his honeymoon, Pattiz was inspired by a 52-hour Motown weekend on KGFJ and began syndicating programs to radio stations under the name Westwood One. The company now supplies radio and television stations with news, talk, sports, music, traffic reports and weather, and boasts an estimated 2003 revenue of $539.2 million.
In 2000, President Bill Clinton appointed Pattiz to the U.S. Broadcasting Board of Governors. After discovering that the U.S. outreach to the Middle East consisted of a one-size-fits-all, seven-hour shortwave Voice of America broadcast out of the Greek island of Rhodes, he went about reshaping the nation’s approach to countries whose media environment is saturated with hate speech and self-censorship.
What the board of governors came up with was Radio Sawa, which was armed with a journalistic mission.
“We’re not in the propaganda business,” Pattiz said. “We’re an example of a free press in the American tradition.”
Programming youth-oriented popular music with news, Sawa broadcasts are increasingly finding an audience. The only two countries not broadcasting Sawa are Egypt and Saudi Arabia.
“We’re starting to cut through the natural bias in the area,” said Pattiz, citing studies that show Radio Sawa listeners have a more positive attitude toward the United States than non-Sawa listeners.
Pattiz’s latest effort on the board has been Alhurra, Arabic for “the free one,” a commercial-free Arabic-language satellite television network for the Middle East that mixes news coverage with magazine shows on topics like entertainment, sports, high-tech, style and food.
And while Alhurra is hoping to share the audience with Al Jazeera, Pattiz didn’t have many kind things to say about the Qatar-based cultural icon.
“They are not the CNN of the Middle East. They are CNN meets ‘Jerry Springer,'” he said.
JBLR is a Jewish Federation/Valley Alliance group that started with the help of 10 families and has grown to host 25 members and five or six guests at each breakfast meeting. The group meets on the first Friday of each month, seeking to provide members and guests with thought-provoking speakers on topics of concern to the Jewish community, rather than the usual staid networking mixer.
Recent programming has included talks with Rabbi Stan Levy, co-founder of Bet Tzedek, and L.A. City Councilman Jack Weiss, as well as an Oct. 3 group volunteer effort at SOVA’s Reseda’ Boulevard location.
“We’ve been focusing on the quality of speakers and the quality of time that we spend together,” said Larry Cohen, JBLR co-chair.
The group has previously limited its membership but is expanding in January to include CEOs, presidents and principal partners.
For more information about the Jewish Business Leader Roundtable, call (818) 464-3263. – Adam Wills, Associate Editor
More than 160 women attended Hadassah Southern California Health Professionals Council’s sixth annual Women’s Health Day on Oct. 14, titled, “Healthy Women, Healthy Lives.”
Held at West Los Angeles’ University Synagogue, which co-sponsored the event, medical experts addressed topics such as heart health, colorectal cancer and cosmetic dermatology. Members picked up information sheets on breast cancer, genetics-based discrimination and organ donation.
“It’s a chance to educate women about health matters and give them up-to-date information and clear up misconceptions,” said Charlotte Horstein, Health Professionals Council president. “There are so many advances today.”
She added that it’s important for women to keep up with medical changes, because “women typically determine health care for the family.”
During his lunchtime speech, University Synagogue’s Rabbi Morley Feinstein addressed the Jewish approach to stem-cell research.
“A physician has the divine right to heal as a partner with God in creation,” Feinstein said. “We are in the ethical business of saving life.”
The first Women’s Health Day was established in 1998 by the Health Professionals Council, formerly the Nurses Council, and drew 25 women to a luncheon at Cedars-Sinai Medical Center.
“As we’ve developed our program, women’s health issues have gotten a great amount of attention [from Hadassah members],” said this year’s event chair Maxine Wainman, a 50-year member and registered nurse who helped start the Women’s Health Day. “I wanted it to be a thank you to the Hadassah women who had been so active in Southern California.” – AW
Israel Has Rx for U.S. Health Care
Israel and the United States each have successes and failures in their respective health care systems, but the younger of the modern nations, rooted in its tradition of helping the needy, has much to teach its American ally. When it comes to some of the most important issues facing the American health care system today — universal health care, administrative costs and establishing a national health basket of services — America can look to Israel.
Until 1995, health insurance in Israel was voluntary, although 99 percent of the Jewish population and 97 percent of the Arab population were covered by four HMOs, the first of which was established at the end of 1911. This was a system wherein the insured members paid the HMO, and the employer made a compulsory payment to the National Insurance Institute.
Today in Israel, everyone is covered by health insurance. In 1994, the Israeli parliament passed a groundbreaking health insurance bill that made every Israeli resident automatically insured, no matter their age, financial status or religion. In the United States today, more than 43 million people, including 12 million children, are uninsured.
Israel’s universal health care is characterized by its "national health care basket," which defines the range of services to which every resident is equally entitled. Residents can petition a labor court if they believe an HMO has ignored their rights to a medical service.
Universal access to Israel’s national health care basket means that there is no underinsurance in Israel, which happens when there are gaps in coverage. In the United States, more than 100 million citizens are underinsured — including 40 million with Medicare, 50 million with Medicaid and at least 10 million who are employed in large companies that have self-insurance.
The main health care delivery system for all Israelis is through primary and secondary clinics. These clinics, which are present throughout the country, provide easy and efficient access to care.
The clinics that belong to the HMOs enable quick access to primary medical care and also easy referral to specialists without waiting lists. There is continuity of care, while there is now a tremendous effort to computerize all the medical data.
Ninety-five percent of general care hospitals in Israel are public. There is no wait for diagnostic examinations such as MRI and CT or for procedures such as open-heart surgery. Payment for hospitalization is the responsibility of the HMO, and there is no deductible or co-insurance payment required of the patient.
There is a $3 co-payment for each prescription on the approved drug list covering acute and chronic diseases.
High unemployment and the Israeli economic recession make it difficult for about 10 percent of the population to pay even this, even though there is a $50 biannual co-payment cap.
Caring for the elderly is a core social policy and an integral part of health care in Israel. While in the United States geriatric care is handled by Medicare, in Israel it is part of the health basket and is the responsibility of the HMOs.
Only hospitalization in nursing homes is the responsibility of the Ministry of Health for those who cannot afford to pay for private insurance or from their own means. Geriatric care, being an integral part of health care in Israel, is of high quality.
I do hope that one of the Israeli government’s priorities in an improved economic situation will be to reflect the nation’s social values by exempting the poorest 5-10 percent of the population from drug co-payments.
Israel’s health indicators for longevity and infant mortality are better than those of the United States. This aspect is not unique to Israel, but many Western countries are better in the various indicators of health than the United States. Yet while Israel spends 8.8 percent of its Gross National Product on caring for the elderly, the United States spends 15 percent of its GNP.
In international comparisons of health care systems, Israel ranks among the top 20 in the world. But, even with its favorable standing, Israel faces many challenges, such as the financial limitations of introducing new technologies and prescription drugs to the health basket and the high taxes Israelis pay. Also of concern are high out-of-pocket expenses for cost sharing and for health care services that are covered only by complementary insurance.
Israel’s health care system, while based on the core value of access for all, is still evolving. The establishment of a "health parliament," a private initiative endorsed by the government, enabled input from ordinary Israelis to help set priorities for the future, including the challenges of limited resources and the growing gap between rich and poor.
Obviously, Israel and the United States differ vastly in size, making full comparisons limited. But with the exception of four large states, Israel is similar in size to most U.S. states. The American health system can be improved only if states take responsibility for health care, or, in the case of the four largest states, if there is regional responsibility within the state.
In 2003, the United States spent at least 30 percent of its national health expenditures on administration, while Israel spent less than 10 percent. The United States could have saved at least $280 billion of the $400 billion spent in administrative expenditures in 2003 to cover the uninsured and to close the gap of the underinsured, strengthening the democratic principles it holds dear.
Professor Mordechai Shani is the director general of Sheba Medical Center at Tel Hashomer, Israel’s largest hospital. He served twice as director general of the Ministry of Health, including 1994, when the Insurance Bill and the Patients Bill of Rights were passed by the Knesset.
Rabbis’ Tact Puts Sex Victims First
David Schwartz, who pleaded no contest last year to charges associated with child molestation at an Orthodox summer camp, has been released from a yearlong stay at a residential treatment facility and is now living in the Pico-Robertson area. Rabbinic and mental health professionals are taking steps to help the victims and their families, as well as the community at large, feel safe and protected from a man who allegedly sexually brutalized and psychologically tormented 4-year-old boys at a Culver City camp for the arts in summer 2002.
Despite his plea, outside of courtroom proceedings Schwartz has maintained his innocence. His wife Nitzah, a preschool teacher at Yeshivat Yavneh in Hancock Park (where Schwartz himself used to teach), has stood by him throughout, saying to rabbis and others that there is no way the father of her children could have committed the lewd acts attributed to him.
While some rabbis who know the family have quietly supported Schwartz and his family, many prominent rabbis and community leaders have been strident and outspoken in their support for the victims — an indication that the Orthodox community has overcome its historic hush-hush approach to abuse. Taking its lead from Jewish Family Service’s Aleinu Family Resource Center, a group of rabbis has attended hearings, counseled the victims and inserted itself into the case.
Several high-profile cases in recent years — both locally and nationally — have helped foster a newfound willingness among rabbis to work with mental health professionals not only to handle crises, but to take proactive measures as well.
"The families see us there and the community knows we’re there, and I think that it’s an important factor for them to know we are not just going to sweep this under the rug," said Rabbi Berish Goldenberg, chair of the Rabbinical Council of California’s (RCC) Family Commission and a member of Aleinu’s Halachic Advisory Board — groups that often collaborate and have overlapping membership.
In a plea bargain reached in January 2003, Schwartz pleaded no contest to one count of committing lewd acts with a minor under 14. Eight other charges were dismissed, and Schwartz received a six-year suspended prison sentence and one year in a treatment facility, and is now on probation for an additional four years. He must undergo another year of therapy, cannot work as a teacher or with children and must register as a sex offender for life.
Upon Schwartz’s release in late January this year, Superior Court Judge Katherine Mader at the Airport Courthouse ordered Schwartz to stay out of an area roughly encompassing the Pico-Robertson and south Westwood neighborhoods. Schwartz, his wife and their three young children reportedly live just east of Robertson Boulevard, one of the boundaries, but have been ordered by the court to move east of La Cienega Boulevard. In addition, Schwartz must stay 100 yards away from a list of synagogues and schools where some of his victims may attend.
In a letter filed with the court March 2, RCC’s Goldenberg and Rabbi Avrohom Union recommended the judge also prohibit Schwartz from attending any synagogue where children are present and only allow him to attend synagogues populated mostly by senior citizens. They also asked that Schwartz be ordered stay away from all schools and be prohibited from using the mikvah (ritual bath). Mader rejected those recommendations.
"The court has commented that the victims need to step back and let the man lead his life," said Vicki Podberesky, Schwartz’s attorney. "The court put on restrictions it feels are appropriate and the DA thought those restrictions were appropriate."
Podberesky said that while she can’t comment on the Schwartz case, in general the criminal justice system is imperfect and innocent people do get convicted. "Sex offense can carry a life sentence and people make decisions many times about how to handle their case based on the fact that they want to ensure that they will see their family again," she said.
The rabbis say their job is not to retry the case, but to accept Schwartz’s plea and treat him as a sex offender. The RCC, together with the Halachic Advisory Board, oversees a beit din (rabbinic court) to deal with such issues. Schwartz has been invited to sit down with the beit din.
Goldenberg, who is also principal of Yeshiva Rav Isacsohn Toras Emes, said that the beit din’s aim is not to penalize Schwartz, but to protect the community and to work with Schwartz to help rehabilitate him — perhaps help him find a job and a synagogue.
"In one sense we want to be harsh and tough and make him understand that he is going to be monitored," Goldenberg said. "On the other hand we are here to help and we are willing to come to an agreement. If we can tell the victims’ families that he is going to follow what he is supposed to do and be where he is supposed to be, we can help make things better for him and his family."
The most likely scenario, many acknowledge, is that Schwartz will leave town, which he can do with proper permission from the court. Jewish sex offenders have been known to resettle in Israel or other Jewish communities.
Such was the case with Rabbi Mordechai Yomtov, who divorced his wife and left Los Angeles soon after he was released from prison about a year ago. In February 2002, Yomtov pleaded guilty to two counts of committing continuous sexual abuse on a minor and one count of lewd act on a minor at Chabad’s Cheder Menachem. He was in prison for a year and his whereabouts are currently unknown.
While both Schwartz and his victims would likely be happier with him out of Los Angeles, the beit din acknowledges its responsibility to keep tabs on him. "There is no question that theoretically the ideal situation would be for him to leave town, assuming he could be monitored," said Rabbi Shalom Tendler, a member of the Halachic Advisory Board. "It would be entirely wrong and irresponsible for us to just push our problem on somebody else."
The Halachic Advisory Board has taken a strong stand on issues of abuse. Aside from working directly with Aleinu Director Debbie Fox to respond to crisis situations, the board helped draft and implement guidelines for schools and camps to prevent, recognize and deal with situations of abuse.
Those guidelines have set a national standard in the Orthodox community, and have since been modified and adopted by schools throughout the country.
"That is the beauty of our community — the rabbonim and JFS and Aleinu work together on crises and we provide advocacy and support from a spiritual as well as a mental health model," Fox said.
The victims’ families will need that support, now that Schwartz is back in the neighborhood. One mother of a victim said her son had been doing better but is now having nightmares and acting out again.
She plans to take him to the Culver City Police Department, where detectives have been helpful all along, so they can explain to him how Schwartz is free but the child will still be safe.
"He’s always been so worried about other kids getting hurt, so the police made him a special junior detective," the mother said. "Now they’ll give him one more badge and promote him."
For more information on Jewish Family Service’s Aleinu Family Resource Center, call (323) 761-8816.
Preteen Advocate Educates Nation About Diabetes
At first glance, Emma Klatman’s summer vacation sounds like that of a typical 11 year old. She attended summer camp and traveled to Washington, D.C. Instead of merely a participant at camp, however, Klatman was a featured speaker. And in our nation’s capitol, she came not to sightsee but to lobby legislators.
Klatman serves as the American Diabetes Association’s (ADA) 2003-2004 national youth advocate. Her duties entail promoting research and public policies relating to diabetes, and visiting diabetes summer camps to involve other children in the fight against the disease.
“Emma acts as an ambassador on behalf of all children with diabetes,” said Stewart Perry, chair of the ADA’s National Government Relations and Advocacy Committee. “She puts a face on diabetes in children.”
Perry accompanied Klatman on her recent legislative visits in Washington, D.C., where she urged Sen. Dianne Feinstein (D-Calif.) and aides to Sen. Barbara Boxer (D-Calif.) and Rep. Diane Watson (D-Culver City) to increase funding for research and to insure that diabetes medications be covered under Medicare.
Adapting to her new role like a pro, Klatman presented her case to a supportive Feinstein as the senator walked from her office to a hearing.
“People don’t want to talk to kids when they’re in a hurry, but she did,” Klatman said.
Klatman’s interest in acting (she also attended the Youth Academy for Performing Arts this summer) and a natural poise gives her the confidence to lobby effectively. In one instance, she pulled out her “finger stick” and pricked her finger to show what it’s like to check blood sugar — a constant necessity for those with diabetes.
Visiting diabetes summer camps for children in Illinois, Missouri and Wisconsin, Klatman told the young campers that they can also be advocates, whether by helping other children understand how to manage their disease or by contacting a legislator about important issues. She said this enables children to “gain self-esteem and think that you really make a difference.”
Perry said that youth advocates like Klatman can be more effective than adults in showing children that they “can live a normal, happy, healthy life with diabetes if they take care of themselves.” Her example, he said, shows “this is what you’re capable of — what you can aspire to be.”
Klatman was diagnosed with Type 1 diabetes at the age of 7. She is one of the more than 13,000 American children annually diagnosed with Type 1 diabetes (previously known as juvenile diabetes), which involves a failure by the body to produce insulin. With overweight and inactivity increasing among U.S. children, more cases of Type 2 diabetes are now being seen in children and adolescents. In the past, Type 2 diabetes was considered an adult disease.
Prior to her diagnosis, Klatman experienced symptoms typical of diabetes — she was drinking and urinating frequently, felt constantly hungry and often fatigued. It was at a Purim celebration at Temple Beth Am that her parents realized something was seriously wrong. Her father, Chris Klatman, recalled noticing that Emma appeared peaked, and assuming that she needed something to eat. He bought her more hamantashen and soda, which only served to further elevate her blood sugar. A trip to the doctor quickly confirmed diabetes, and Emma’s life changed from that day forward.
Today, she wears an insulin pump, a blue plastic device that resembles a slightly oversized pager, which is attached to a tube under her skin. The pump automatically administers insulin throughout the day and Klatman presses a button to inject additional insulin based on the food she consumes. She must check her blood sugar levels at least six times a day by pricking her finger and placing a drop of blood in a small device called a glucose meter. Like all people with diabetes, Klatman must keep tight control of blood sugar levels since low levels (hypoglycemia) can lead to loss of consciousness and high levels (hyperglycemia) can eventually cause kidney, nerve, blood vessel and eye damage.
“Sometimes I get so mad that I have to test 10 times a day and I’m not like most kids…. I have something to worry about and they don’t,” Klatman said.
But she said the process has become routine, and even generates admiration among her peers.
Klatman is quite matter-of-fact about her disease and her ability to accomplish her goals. With her youth advocate duties involving monthly travel, she said, “I’ll have to work twice as hard with school, but I’m capable.”
In some ways, Klatman’s illness seems to take a greater toll on her parents, who believe research — particularly stem cell research — may hold the key to the cure for this and other diseases. Until then, her mother, Carol Eisner, noted, “As parents, we’re never relaxed. We really deal with life with Emma test by test.”
While Emma said she can eat anything, her mother elaborates that “eating is never, ever the same…. It’s like keeping strictly kosher: Every single bite that goes into your mouth has thought behind it. For every morsel [you need to ask]: How many carbohydrates does this have and how many units of insulin do I have to give myself for this?”
Because of the frequent need for diabetics to monitor blood sugar levels, one of the ADA’s top priorities involves insuring that children with diabetes be allowed to check glucose levels and inject insulin where and when they need to at school, rather than being forced to walk a distance to the nurse’s office or another isolated location.
Perry talks about other barriers children with diabetes may encounter in schools. “They’ve been told they can’t play football. They can’t be cheerleaders. They can’t go on field trips,” she said. “We want kids with diabetes to be treated no differently than any other kid — not segregated and not discriminated against.”
Emma reflected on what having diabetes means to her.
“I don’t like to refer to myself as a diabetic. I refer to myself as someone with diabetes. It’s something that [requires me to do] more in my life. But I’m still Emma.”
For more information on diabetes, e-mail firstname.lastname@example.org or call 1-800-342-2383.
California Jews Lobby for Medi-Cal
Nearly 200 Jews descended on Sacramento this week to lobby California’s most powerful politicians to protect major programs that serve the poorest and frailest Jews and other Californians from the budget ax.
Jews from throughout the state, including Los Angeles, San Francisco, San Diego and Orange County, canvassed the state capital Monday, May 19 and Tuesday, May 20 to fight against proposed cuts to Medi-Cal, the state’s health insurance for the poor. They also networked, learned how to become effective advocates for Jewish causes and attended workshops on issues ranging from how to manage the media to the need for Jews to build coalitions.
The mood among participants, against the backdrop of a ballooning state budget shortfall estimated by some at more than $38 billion, appeared less ebullient than in the past.
"In prior years, when the state had a surplus, the discussion was on expanding programs and creating new initiatives," said Esther Netter, executive director of the Zimmer Children’s Museum in Los Angeles. "This year, everyone had a defensive posture, and the mood was more somber."
State Controller Steve Westley warned participants at a breakfast speech that California’s budget problems were even worse than they seem.
Attendance for the two-day mission, which was sponsored by the Jewish Public Affairs Committee (JPAC) of California, the state’s main Jewish lobbying group, was 190 — off by more than 8 percent compared to last year, organizers said. They attributed the drop to holding the event a week before Memorial Day weekend, the poor economy and a belief among some Jews that their voice wouldn’t make a difference.
Still, Cliff Berg, JPAC legislative advocate, said he thought the group’s collective message would get through to legislators because of participants’ commitment to deliver it in person.
"I think the fact that you’re willing to take a couple days off work and come to Sacramento will resonate with [the politicians]," he said. "It shows there are others who feel the same way you do and others behind them."
Gov. Gray Davis has proposed cutting Medi-Cal reimbursements by up to 15 percent to help close the growing state budget deficit. That belt-tightening would save more than $1.4 billion, but would do so at the expense of California’s most vulnerable. Medi-Cal underwrites a slew of programs that cater to a largely Jewish clientele locally, including the Valley Storefront Adult Day Heath Care Center in North Hollywood, and the Multipurpose Senior Services Program (MSSP), which provides indigent elderly with taxi vouchers, home-meal preparation and other services to keep them out of nursing homes.
The Valley Storefront would have to close down, along with an estimated one-quarter of the state’s 307 adult day health-care centers, if the Legislature enacts the suggested cuts. MSSP would shed 110 of its 734 monthly clients and lose one of its two full-time social workers.
"I think it’s immoral to turn our backs on the elderly," said Jessica Toledano, director of government relations for the Jewish Community Relations Committee, a department of The Jewish Federation of Greater Los Angeles. "These programs keep their [seniors’] dignity, and also keep them out of nursing homes, which are far more expensive."
Motivated by Toledano’s and others’ speeches, mission participants made their way to the state capitol where they collectively lobbied 60 legislators or their aides, admonishing them to forego the proposed Medi-Cal cuts. The newly minted lobbyists also asked politicians to support a resolution condemning the Arab League’s revived economic boycott of Israel and to support legislation that would train teachers on the prevention of hate crimes in schools.
It is unclear whether their efforts had much impact.
Assemblyman Leland Yee (D-San Francisco) told a group of five neophyte lobbyists that many Democrats opposed Medi-Cal reductions, but that Republican unwillingness to raise taxes or other fees to balance the budget muddied the picture.
"You need to talk to Republicans about revenue generators," he said.
Even if Medi-Cal cuts pass, mission members deserve credit for fighting a battle on behalf of those who sometimes go unheard, said L.A. attorney Matthew Ross, a former business-affairs executive at CBS.
"We’re up here talking about the poor, immigrants and the elderly, people who don’t often have lobbyists," he said. "We’re their lobbyists. We’re their voices."
To become legislative advocates, mission participants attended a nearly two-hour session in the nuts and bolts of lobbying. JPAC’s Berg told group members to be clear, "stay-on-script," exchange business cards with politicians and, most important, to remain polite, regardless of the reception to their ideas.
"Our broader goal is to build relationships and work on [getting the politicians] to nurture and understand the Jewish community," he said.
Sarah Jaffe, a 19-year-old sophomore at UC Santa Barbara, said participating on the mission gave her a chance to try to create positive change. For her, cutting Medi-Cal is akin to slashing the social safety net that might one day be needed catch her parents — or herself.
"Being a young person and seeing the changes affecting Medi-Cal makes me worry about the future," she said. "Even though I’m not affected now, in a few years, cuts could hurt my parents and, a few years later, me."
Planning Ahead Can Save on Health Care
Eva, 74 and a widow, was a healthy and independent woman until she went shopping one day last December and was mugged. She was attacked with a screwdriver and thrown to ground, breaking her shoulder in four places.
"I ended up on the sidewalk, totally helpless," said Eva, who lives in Westwood and prefers to not give her last name. "I went from being very active to being disabled. My recovery was very painful, and I am still not done."
Eva was hospitalized for a month, and when she came home, she found that she needed nursing care and help doing basic tasks around the house, such as bathing and getting dressed.
"A nursing home just didn’t appeal to me," Eva said, and so she found home care. The cost of such care was between $17 and $20 an hour, and Eva needed it at least 16 hours a day for six months.
The cost of her care could have totaled in excess of $55,000 for those six months. However, Eva was able to avoid the expenditure because she had a long-term-care insurance policy that she bought the year before. The premium cost $2,273.
Because elder care can be an enormous drain on an individual’s resources, with nursing homes costing in excess of $100 a day and home care costing even more, planning ahead and buying long-term-care insurance is one way of preventing the costs from being too overwhelming.
For some in the Jewish community, long-term-care insurance — and particularly the home-care policies — can also have a religious significance. They see it as a facet of the mitzvah of Kibud Av V’em (honoring one’s parents), because it allows children to have peace of mind about their aging parents living out their last years with dignity.
In a 1998 article written by Joel Schwartz in the Association of Orthodox Jewish Scientists Newsletter, Schwartz argued that according to Torah, home care is preferable to nursing-home care, because institutionalized living brings with it a certain loss of honor. While some nursing homes are cheery and bright, others may be drab, unfriendly and, in some cases, even detrimental to the health of those who need care.
Government regulations require nursing homes to provide 3.2 hours of care per patient per 24 hours. In some cases, a nursing home might cut corners because it does not hire enough staff to meet the requirement.
In such a scenario, which some experts in the field say is not uncommon, patients who are severely incapacitated will suffer. They said bed-ridden patients might develop bedsores, because they are not turned often enough, and incontinent patients might be diapered to save labor costs.
Few people want their parents to suffer such problems, but many with aging parents have their own families to provide for and do not have the time or resources to take proper care of their parents themselves.
For many people, long-term-care insurance provides the answer to the problem. Although the premiums might appear high — and even seem useless if the person paying them is healthy — they can end up saving people tens of thousand of dollars if the need for long-term care should arise.
Karen Shoff, a Santa Monica gerontologist, insurance agent and author of "There’s No Place Like a Nursing Home: Four Powerful Steps That Will Change Your Life" (Invisible Ink, 2002), believes that planning for one’s physical retirement is as important as planning for one’s financial retirement. Shoff advises people to start planning for their twilight years in their 50s and 60s, so that they will be able to avoid both nursing homes and the costs involved with home care.
Shoff’s plan involves buying a long-term-care policy, appointing a geriatric-care manager who can assist with legal and medical issues and find services, making a living will that spells out how a person wants to be cared for in the event of an illness and finding an ally who will help carry out the plans.
"You can’t wait until the fire’s there, and people are tearing their hair out," she said. "You need to plan ahead logically."
However, there are some who shy away from long-term-care insurance because they see it as unnecessary to pay premiums above and beyond health insurance and Medicare, which they believe will cover most emergencies. Furthermore, many people argue that, depending on the circumstances, nursing homes can provide better service and offer a wider variety of resources than a home care, in addition to having a social setting that might not be available at home.
"There is an understanding in halacha [Jewish law] that sometimes a parent needs to be put in an institution — for example, if the parent has dementia, and the children can’t handle the burden" said Rabbi Elazar Muskin of Young Israel of Century City. "You need to weigh up the circumstances."
Still, others credit their long-term-care insurance and the home care it bought them with peace of mind. "When I took out the policy, my children kept telling me that I was throwing money out the window," Eva said. "But after I was mugged, they were relieved that I had this help, that I was OK and that I was not going to be dependent on them."
A Dose of Wisdom to Combat Illness
"Illness and Health in the Jewish Tradition," edited by David L. Freeman and Judith Z. Abrams (Jewish Publication Society, 1999, $24.95).
What is your definition of a new book? Mine is a book that I have not yet read, regardless of when it was published. And so, let me call your attention to a book that was published a couple of years ago, but that did not receive the attention that it deserved and that you may have missed.
This is a book for those who are or who some day may be ill, which is another way of saying for everyone. It contains wisdom culled out of ancient, medieval, modern and contemporary Jewish literature that is intended for the patient, the caregiver and the physician. Like every anthology, it has some passages in it that will be your favorites and some that you will not like as much, but there are more than enough of the former to make this a precious and valuable collection.
The writings are of different kinds. There are, first of all, selections from the Psalms, because this is the great treasure house of the human spirit. The Psalms are poems and prayers written by and for those who are ill, and because they are so excruciatingly personal, their power does not diminish with the passing of the centuries.
Then there are selections from rabbinic literature, from both the legal sections and from the midrashim. And then there are selections from the law codes, in which all the bewildering questions that confront patients, caregivers and physicians today are struggled with: When should you visit a sick person and what should you say? When can you let go of life and how long should you fight? How much must you tell a patient when he/she wants to know the truth and how much should you tell when he/she does not want to know the truth?
There are also essays by modern Jewish thinkers–Harold Schulweis, William Cutter, Hirshel Jaffe and others — each reflecting on what they have learned as a result of their illnesses and what they now understand as a result of their recoveries.
These essays do not deal, for the most part, with the theoretical theological questions but with the real concerns of people who are in the hospital. They do not deal with such questions as who has priority for a transplant or whether euthanasia or abortion or stem cell research are right or wrong.
Instead, they deal with such questions as what can we do to make a patient feel that he/she has some control, how can we make the consulting room look less forbidding to the caregivers, and how can a person who has to wear a silly looking gown and a bracelet with his name on it, and who has to sleep in a bed that has sides like a crib, and who has to stare up at the nostrils of those who treat him, feel dignity?
Above all, they deal with the question of where shall a patient find a measure of hope and meaning in the time of illness?
There are a 127 selections in this book. They range from the Chumash and the Book of Job through Maimonides and Glueckel of Hameln in the Middle Ages, to Sholem Asch and Sholom Aleichem in modern times, to Victor Frankl, Max Lerner, Abraham Joshua Heschel and Adin Steinsaltz in our own time.
The prayers and the customs of the tradition are here, such as the "Misheberach," the changing of the person’s name, the amulets, the vidui. New customs and new ways of giving hope and will to live are to be found here, too.
Not only will each person have his or her own favorite in this anthology, but I suspect that different pages will be each person’s favorite at different times in his life. Rachel Cowan’s memoir of what it was like to stay in her husband’s hospital room and to celebrate Shabbat with him there near the end of his life is a gem that those who need be caretakers will appreciate.
The physician’s oath and Isaac Israeli’s portrait of the good physician will speak to doctors about the spiritual challenges they face. (I wish that Nancy Flam’s exquisite prayer for doctors to recite when they lose a patient had been included; perhaps it can be added in the next edition.)
The principles of administration for a hospital that were written for Kiryat Sanz Hospital in Netanya, Israel, is an extraordinary document that should be must reading for anyone who administers a hospital. Many other selections in this collection will speak to those who are, or who some day will be, ill and will show them what those who have walked the lonely path that they must tread have learned.
This source book is the work of two remarkable people: Dr. David Freeman, who teaches internal medicine and rheumatology at Harvard Medical School, and Rabbi Judith Abrams, who teaches Talmud via the internet from Houston.
The book came out of a healing service called Refuat Hanefesh that has been held since l990 at Temple Israel in Boston, where patients, caregivers and physicians meet once a month to share prayers, poems and readings — many of them set to music — and study selections from classic Jewish sources and contemporary Jewish thinkers that grapple with how to achieve both strength of body and strength of spirit.
Now that I have discovered this anthology, I am going to make it the textbook for a study group on health, illness and recovery that I want to teach in my community, because there is no one who does not now or will not some day have to confront the issues that this book deals with. So it is a wonderful resource to study now, as well as when we will need it.
My attorney, Irwin Goldring, is a wise man. Never pushy, never alarming. Fifty years in estate planning, you learn something about people.
"Hey, for me this is just a questionnaire," he tells me. "For you, it’s something more."
I’ll say. Irwin has sent me two legal forms stating when and who can act on my behalf, if need be. All I have to do is make choices, name names. I call these "thinking ahead" forms, a way of facing now what I might not later on. Five times he tells me, "May these forms never be needed."
Still, even hypothetically, it’s not so simple. How do I feel about life-sustaining technology? At what point, if ever, would food and water be a form of futile prolonging of life?
And what about hope? For loved ones, does it ever end? But would I want them to wait forever? Under what circumstances would I stop hoping to be "healed" and desire only kindness and care?
"I want to live my life with dignity and for my loved ones to have pleasant memories of my final days," reads the form called "advanced health care directive." Yes, indeed.
It’s not lung cancer, or at least not cancer alone, which gives these matters their urgency. It’s living. You’d think that as a middle-aged woman, I’d have faced it before: life’s a crapshoot. But reading Irwin’s forms, I try to imagine the potential decisions my legal designees might have to make on my behalf, and my heart is filled with gratitude, well in advance. May their judgment never be needed.
Can we talk about death? It sure is asking a lot. It’s easier to discuss sex, or money, or God — all famous sources of argument, disagreement and despair, but whose province lies squarely in life.
My husband, whose 15th yarhzeit I mark this week, denied the possibility of death, even from his hospital room. Never once uttered the word. Macho, maybe. Self-contained, perhaps. Fearful, certainly.
He continued to practice law from his bedside briefcase, between bouts of heart failure. He made out a will for his personal property. But he protested all the way. The subject was depressing, he said. It implied a lack of confidence in his immortality.
Now it’s my turn. My husband’s choice is not mine. I have my motives for talking about death here and now.
First, maybe I can be like the biblical Isaac, who grabs hold of his terrors of dying, prematurely blesses his sons and then lives a good, long time. Isaac knew that one way to get beyond anxiety is to deal with it.
Second, I want you, dear readers, to talk to each other about the Big D.
We are living in such a high-tech age, in which confusion over end-of-life issues grows by the day. Ignoring the challenge does not help. Yet vulnerability keeps us silent. Facing end-of-life issues, we know exactly how little we know.
These forms are important insurance against fate. The ancients feared death, as the Psalmist writes, "on that day his plans come to nothing." But we moderns rightly fear death in the midst of life. We cannot solve this by denial, and must be ready with surrogates to protect us against life on a tube.
For Jews across the denominational spectrum, the spiritual challenge can become intense. What is God’s will? Have I a right to prolong or shorten life by providing an antibiotic or refusing a respirator? Where there is no right and wrong, an open heart and clear thinking can go a long way.
I am sitting in the park with my friend, Dr. Ken Leeds. For 10 years, Leeds was on a Cedars-Sinai bioethics committee, applying Jewish values to end-of-life issues.
"Where things go wrong," Leeds tells me, "is when people don’t talk to each other. If there’s a disagreement in understanding what the patient wants, it leads to trouble." In the absence of agreement, the doctor is often put in the middle, opting to maintain life against the patient’s desire. It can turn ugly.
None of us should be alone in these difficult decisions. End the death taboo. Do not expect to have all the answers at once, but do get started. Get your forms in order. Talk to a rabbi. Talk to your children. Start the conversation. Discussion brings light.
And may your plans, once resolved, never be needed.
No News Is Bad News
The Los Angeles Jewish community is harboring a deadly secret.
Thousands of Jews in Southern California, among hundreds of thousands worldwide, carry the gene for a fatal disease that’s as prevalent as Tay-Sachs and just as devastating, but local Jewish leaders have failed to let the public know that the disorder exists — and is now preventable.
One in 30 Ashkenazi Jews carries a genetic mutation responsible for familial dysautonomia (FD), a disorder of the autonomic and sensory nervous systems. It interferes with the body’s ability to regulate itself and its processes; symptoms include inability to feel pain or temperature sensations, wild fluctuations in blood pressure and body temperature, and trouble with chewing, swallowing and digesting food.
Children with FD typically experience developmental delays, physical or cognitive, of varying severity. Their eyes don’t produce tears, and some are at such risk for eye damage that they have to wear protective goggles. Many are fed through gastric tubes implanted in their stomachs to keep them from inhaling the food and liquid they don’t have the coordination to send down the esophagus instead of the windpipe. Any kind of microbe or emotional upset can throw a child into a "crisis" that necessitates a race to the hospital.
Early death, most commonly in one’s 20s, is generally caused by cardiac problems such as heart arrhythmia or a stroke caused by a sudden spike in blood pressure; renal failure, when constant fluctuations in blood pressure are too much for a young person’s kidneys; or pneumonia caused by aspiration of food and drink into the lungs.
FD children are also at high risk for accidents. "They don’t seem to have a good sense of where they are in space," said Sonia Peltzer, a physician with two FD children who is president of FD Hope, Inc., an organization devoted to raising awareness of the disease, raising money to support research, and creating a support network for affected families.
The disease becomes the focus of every household with an affected child. Mavis Feinberg, a Pacific Palisades resident whose grandson has FD, said of her daughter and son-in-law, "Their whole life has become caring for their son, because FD is so invasive in so many areas of their lives. It has a horrible impact on a family."
In a video produced by FD Hope, smiling, gap-toothed 9-year-old Andrew Slaw is shown playing outdoors like any other kid. He’s in fourth grade in suburban Chicago, with no lag in mental abilities and no insurmountable problems with motor skills. But during the past five years, Andrew has been rushed to the hospital "in crisis" some 20 times, sweating and retching, his blood pressure and heart rate dangerously high. When a crisis occurs, "he looks like he wants to crawl out of his skin," said Andrew’s mother, Ann.
When healthy children catch cold or get upset, their systems are able to regulate themselves, but anything that has an inflammatory effect on the body overloads an FD child’s autonomic system. The GI tract shuts down, making it difficult to give a child nourishment and liquids. The subsequent drop in blood sugar or electrolyte imbalance can cause a child to go into seizure.
"We knew Andrew had difficulties from birth," said Ken Slaw, Andrew’s father and FD Hope’s vice president: Andrew coughed and gagged when he was fed and didn’t gain weight as a baby. He had poor muscle tone and balance, although, his father said, "Andrew sometimes found genius ways of compensating for his difficulties." They finally took him to a neurologist when he was 4, after Ken accidentally slammed Andrew’s fingers in a door — and Andrew didn’t feel any pain.
Although Andrew can handle food by mouth, he eventually received a gastric tube so that his parents and medical personnel can get nutrition and liquids into him when he’s in crisis. Peltzer’s daughter Sarah, 3, on the other hand, had a gastric tube implanted shortly after her diagnosis at two months of age and receives all her food and liquids through it.
Children who receive all their nutrition through "g-tubes" are given formulas such as Ensure or Pedialyte, blended foods like milk shakes, and pureed vegetables and fruits, Peltzer said. The kids with the most severe feeding problems lack the coordination to chew and swallow. "It’s like having a mouth full of Novocain," she said.
With the family consumed by day-to-day care and medical emergencies, unaffected children in the family grow up fast. Ann Slaw said their daughter, Emily, 7, "often speaks like she’s 47." While Emily is sometimes "displaced" by Andrew’s illness, she added, "We try to make sure her needs are met."
Ann Slaw thinks living with a sick brother has made Emily "a more compassionate and insightful person." Similarly, Sonia Peltzer says her two older children, ages 6 and 8, who do not have FD, have become "sensitive to issues I don’t think they would have been sensitive to otherwise. They’re going to become really neat people."
First reported in 1949, FD occurs when a child receives a chromosome bearing the genetic mutation causing FD from each of his or her parents. When each parent is a carrier of the gene, there’s a one-in-four chance a pregnancy will result in a child with FD; children who inherit the gene from just one parent don’t have FD but are carriers themselves.
The mutation developed exclusively within the Ashkenazi Jewish community and is one of several diseases associated with that population. The two most devastating Jewish genetic diseases besides FD that occur frequently are Tay-Sachs, a metabolic disorder that attacks the central nervous system, and Canavan disease, which causes degeneration of the brain from earliest childhood. The most common is Gaucher’s disease, carried by one in every 12 Ashkenazi Jews, in which an enzyme deficiency typically causes orthopedic problems and blood abnormalities.
Although the Sephardi community is not as well studied as Ashkenazi Jews, researchers recently discovered the gene mutation for a disease called hereditary inclusive body myopathy, a progressive muscle disorder affecting Middle Eastern Jews in their 20s and 30s.
An enormous breakthrough in FD research came just a year ago, when scientists at Fordham University in New York isolated the genetic mutation that causes the disease. That made it possible for people to be screened for the FD gene, the way many prospective parents of Ashkenazi background get tested for Tay-Sachs. Labs in Israel, New York, Houston, and here in Los Angeles are set up to test people for FD.
The discovery of the gene threw into high gear the efforts of those close to the disease to publicize it. "The Jewish community in general has to jump on the Jewish genetic disease bandwagon and push public education and testing," said Michael Rancer, a library administrator at UC Berkeley and a member of FD Hope’s board of directors whose son, David, died of FD last May at age 11.
Rancer is trying to get his local Federation involved in a joint program with UC San Francisco Medical Center to provide testing and encourage Bay Area Jews to get tested, and he said that the Jewish Federation of Metropolitan Chicago has a "model program" publicizing the prevalence of the FD gene.
At present, there are about 350 youngsters with FD worldwide, but a one in 30 occurrence of the mutation means there are upwards of 20,000 carriers in the greater Los Angeles area.
However, Mavis Feinberg said, Jewish leaders in Los Angeles haven’t seemed interested in getting the word out about FD; she said she hasn’t had a response to queries she’s made to Jewish organizations and half a dozen rabbis. "I don’t think people realize how neglected, ignored, and shunned this Jewish disease is," she told The Journal, adding that one rabbi said to her, "I don’t want to bring it up because I don’t want to upset my congregation."
Dalia Laitin, a genetic counselor at University Children’s Genetics Lab, affiliated with Childrens Hospital in Los Angeles, said that the local Orthodox community is concerned enough about Jewish genetic diseases to offer routine screening to teenagers at Los Angeles yeshivot, but non-Orthodox synagogues don’t seem motivated to spread the word.
When her lab came up with a panel screening for Jewish genetic diseases about a year and a half ago, allowing people to be tested for several disorders at once, Laitin said she tried getting congregations to publicize the program without success. "I contacted several non-Orthodox synagogues, but they were either busy or not interested in publicizing this program to their congregations," she told The Journal.
Along with testing, those involved in the fight against FD work hard to raise money for research, pointing out that research on this disease has implications for people suffering from other forms of dysautonomia, including Parkinson’s disease, autism, panic disorders, and autonomic problems caused by diabetes and high blood pressure.
"Because of the small number of identified individuals with this disease, there is little government support for research," said Sondra Mallow, a Jacksonville, Fla., mother of three FD children. But, she says, "we have hope … that we all live to see the day the disease is eradicated."
Michael Rancer has hope, too, but his is tinged with the knowledge that their cause has a long way to go. "We are years away from a cure," he said. "Although our goal is to make [David] the last child to die from FD, we know that’s not realistic."
For more information about familial dysautonomia, log on
to www.fdvillage.org, e-mail email@example.com, or call
Mavis Feinberg of FD Hope at (310) 459-1056. For more information about the
spectrum of Jewish genetic diseases, see the Web site for the National
Foundation for Jewish Genetic Diseases, www.nfjgd.org . To find out how to get tested for familial dysautonomia and other genetic diseases, call University Children’s Genetics Lab at (323) 669-2271.
Oy Vey Iz Mir!
"But mom, I feel too sick to go to school today. My tummy hurts, my throat hurts, I feel hot," moans 7-year-old Adam. His mother kisses his forehead and replies, "Adam, you feel cool as a cucumber! You’re probably not sick, you’re nervous about making friends at your new school. But I shouldn’t take any chances; there is a bug going around. You can have the day off. Maybe I’ll take you to the doctor."
Perhaps this is where it all starts, in second grade. I’ve been a doctor for more than a dozen years now, and a Jewish doctor at that. I’ve treated people from dozens of countries and countless cultural backgrounds. Over the years I have noticed that Jewish people suffer disproportionately from painful conditions that are ultimately tied to their emotions.
Research supports the concept that Jewish people are more likely to suffer from some psychological conditions, and less likely from some other disorders, than the general population. An article from the Israeli Journal of Psychiatry and Related Sciences, published in 1989, reviews studies that show a lower prevalence rate of schizophrenia, but a higher level of neurosis than non-Jews. The authors also conclude, "Jews tend to internalize aggression."
The relationship of alcohol abuse and psychiatric conditions as it varies among ethnic groups is quite interesting. An article in the American Journal of Drug and Alcohol Abuse in 1989 describes a study of drug and alcohol intake for Jewish and Christian men at UC San Diego. Christian men were more likely to report alcohol-related problems than were Jews.
In a more recent report in the Social Psychiatry and Psychiatric Epidemiology Journal from 1992, data showed that the overall lifetime rate of psychiatric disorders among Jews did not differ from non-Jews. However, Jews were more prone to depression. An article in the American Journal of Psychiatry published in July, 1997, noted that Jewish males had higher rates of major depression than Catholics and Protestants. But, again, rates of alcohol abuse/dependence were lower in the Jewish population and inversely related to rates of major depression.
What’s interesting about these studies is that they point out that Jews seem to suffer a higher rate of neurotic illness, more depression and less alcoholism. Of course, this could represent a genetic tendency. However, no one has demonstrated that Jews share the Asian tendency to have a lower level of an enzyme that breaks down alcohol in the system. No one has yet discovered the depression gene or a gene therapy for it, so perhaps we should think about the role of Jewish culture.
It’s possible that over centuries of restricted living in the shtetls and ghettoes of Eastern Europe, and elsewhere under the domination of other groups, Jews have learned that directly expressing anger and aggression was a dangerous thing. The alternative to acting out emotions is often to turn these feelings inside. Gradually, this became a learned behavior, passed on culturally from generation to generation.
This self-attack or internalization of anger and aggression may be the cause of a higher rate of depression and certain other conditions such as irritable bowel syndrome, headaches, chronic back and neck pain, and temporomandibular joint syndrome (TMJ). Jewish people internalize emotion, literally experiencing in their bodies the angers, fears and frustrations of everyday life. The oy vey we hear does represent real, physical pain in a patient’s abdomen or back. But the origin of the pain may indeed rest in emotional tension rather than a particular structural disorder of the colon or spine.
Many Jewish children, like Adam in the story above, have found that their parents are sensitive to their every ache and pain and much more attentive when they kvetch. The pattern continues as adults when Jews are quite willing to share their aches and pains with one another as a way of bonding and letting off steam, but not really confronting the underlying emotional issues. This indirect style, or repression of emotions, may lead to physical symptoms.
The medical profession is beginning to acknowledge the mind-body connection in a variety of ways. Insomnia, headaches, back pain, fatigue and abdominal pain all can have purely organic causes; but we are learning more and more to connect these symptoms and others with a patient’s emotional life. The elderly widow or widower who suffers a well-documented higher rate of death and disease in the first year after losing a spouse is one example of a mind-body effect.
The good news is that Jews are also among my most educated patients, and especially among younger people, much more psychologically aware. It turns out that the key to treating these mind-body disorders is making patients aware of the connection and teaching them to think about their pain less and their feelings more. I tell them: "Think psychologically, not physically."
Jewish people are often among the best at learning to approach their problems this way. And, by the way, these conditions are quite common in all ethnic groups, just more so in Jews.
So the next time one of your parents says, "Oy Vey, my aching back!" think not of dad’s bulging disc or mom’s bursitis, but instead, the statement beneath: "Why haven’t you called?"
When Georgia Freedman-Harvey’s son was born with a rare genetic disorder, she and her husband discovered "the invisibility factor" for Jewish children with special needs.
"When the sign says ‘Everyone Welcome,’ it doesn’t really mean everyone," said the Orange County mother of two. Determined to give her son as normal a childhood as possible, she fought to have him participate in activities from Mommy and Me groups to public school classrooms to Jewish camps. "We need to get the non-disabled community more educated so that they will want to include children like mine," she says.
Freedman-Harvey recounted her experiences at a conference on Judaism’s response to disability held Sept. 13 at Hebrew Union College-Jewish Institute of Religion (HUC-JIR) in cooperation with the USC School of Social Work. The gathering brought together rabbis and attorneys, social workers and students, disabled individuals and their families to share insights and spur further efforts to integrate the disabled into everyday life.
"Disability is something that inhibits free and full participation as an individual in communal life," explained Wilda Spalding, a conference speaker who has headed multiple delegations to the United Nations’ Commission on Human Rights. Beyond those using wheelchairs, the disabled include people who are hearing or vision impaired, have mental disabilities or have any number of chronic diseases.
Presenters dealt with a range of cultural, legal and institutional issues. Dr. Liora Findler of Bar-Ilan University’s School of Social Work, reported on her studies looking at grandparents in families with disabled children. David I Schulman, supervising attorney of the Los Angeles City Attorney’s AIDS/HIV Discrimination Unit, warned that the courts are slowly eroding the hard-fought legal rights of people with disabilities. Though unable to fly out because of airport closures, Sara Rubinow Simon provided a description of efforts made by the Jewish agencies in Washington, D.C., to integrate children with special needs into the Jewish community.
"This may have been the first Jewish consultation on services to the disabled in a number of years in our community," noted Steven Windmueller, Director of the Irwin Daniels School of Jewish Communal Service, HUC-JIR. The program was co-sponsored by a number of entities — not all of them Jewish — including the City of Los Angeles Department on Disability. Other Jewish organizations participating included USC’s Casden Institute for the Study of the Jewish Role in American Life, The Kalsman Institute on Judaism and Health of HUC-JIR and Jewish Family Service of Los Angeles, a beneficiary agency of The Jewish Federation.
"We can only hope that this gathering might have served as a catalyst for further discussion and for needed intervention," Windmueller said. "Whatever else it did achieve, it reminded us, especially in this season of renewal, that we have an opportunity and an obligation to reach out to all within our community."
For a list of programs for the disabled offered by Jewish Family Service of Los Angeles, call (323) 883-0342.
A Sit-up a Day…
Back when Bernie G. was only 78, he suffered a minor stroke. Then his loving wife of many decades died. The double blows caused Bernie’s family to put him into a nursing home because he seemingly could no longer care for himself. Bernie became apathetic about life and mostly just languished all day long in bed.
But then a university researcher studying the effects of weight lifting on seniors asked Bernie to take part in an exercise program. At the start, using both arms, Bernie could only lift 18 pounds over his head.
After 12 weeks of working out on the weights, Bernie discovered he could heft 48 pounds. He also started propelling himself in his wheelchair — thereby removing the need for an attendant — and doing all his own feeding, dressing and personal-care chores.
Four years later, at 82, Bernie says he is enjoying life and working out with weights — albeit lightly — four times a week.
Bernie’s case is not an isolated oddity. In the United States alone, researchers at six major medical centers have found that weight lifting and other forms of exercise can literally turn back the clock. One of the oldest iron-pumping subjects on record was a frail 96-year-old woman who regained the mobility, spunk and vigor of an average 58-year-old. Moreover, strength training among seniors has been shown to help slow the loss of bone, strengthen the heart and boost immunity, while increasing flexibility and balance. All that helps prevent body-wracking, bone-splintering falls, which lead to more serious medical woes, along with sky-rocketing health care costs.
"Many physicians have been gun-shy about putting people over 80 on weight lifting programs," says Dr. John Meuleman, associate professor of internal medicine at the University of Florida’s College of Medicine in Gainesville, Fla. "But as long as the exercise is supervised, starts with light weights and gradually works up, we’ve found the elderly can be encouraged to work out harder and will do just fine. The human body is designed to be used during all its days."
Scientists and researchers have found that working out can do much more than ease the ravages of time. Studies are showing that exercise is a type of medicine that can help prevent heart disease, type I and II diabetes, arthritis and osteoporosis. High blood pressure and other health ailments are also eased by regular activity.
Exercise helps strengthen the heart muscle and may cause chemical changes in the blood that help protect against heart attacks. Working out helps diabetics because it lowers glucose levels by taking some glucose to use for energy. Diabetics who regularly break a sweat say exercise even reduces the need for insulin. Being active helps arthritics because it brings more blood to muscles, improves joint flexibility, strengthens muscles, tendons and ligaments.
Nonetheless, only about 20 percent of people in industrialized nations get regular exercise. And, according to one researcher, that widespread sloth is actually a type of 21st-century plague.
"Records in industrialized nations show heart disease is up 37 percent since 1950; type II diabetes is up 600 percent since 1958, and more people than ever complain of backaches, osteoporosis and high blood pressure," says biologist Frank Booth at the University of Missouri-Columbia in Kansas City, Mo. "Calculations show sedentary living and inactivity are linked to at least 17 chronic diseases and are responsible for about 250,000 deaths yearly in the United States alone."
Only smoking, which claims about 400,000 lives yearly in the United States, causes more preventable deaths.
The cost of treating inactivity-related illnesses, Booth reckons, approaches $1 trillion yearly. What is not so clearly known, however, is why physical inactivity leads to disease in the first place. So Booth has created an advocacy group, Scientists Against Inactivity-Related Diseases, to better understand why the human body is so sickened by a couch potato lifestyle.
Additionally, U.S. Surgeon General David Satcher last year released the first report on physical activity and cited health benefits that are "momentous," he wrote. "Exercise prevents premature death, unnecessary illness and disability; controls health care costs and maintains a high quality of life into old age."
The surgeon general says many health conditions can be better managed by any activity that requires 150 calories a day or 1,000 calories a week. That’s how much energy a 150-pound person burns in 30 to 45 minutes of house cleaning or car washing, in 15 minutes of snow shoveling or 20 minutes of rapid walking.
Whatever the cause, being as active as possible seems to supply some anti-aging effects.
Prof. Robert A. Wiswell, associate professor of biokinesiology at the University of Southern California, has studied 250 older athletes for the last 14 years. His subjects, all over 40, hold mundane jobs but have been dedicated to a particular sport. His athletes include a 66-year-old "ultra" distance runner (50 to 100 mile races at a time,) and a 91-year-old swimmer. Fifteen of his subjects are over 70 while another five are over 80.
The athletes are poked, prodded, measured and monitored in just about every way known to medical science. Physical testing includes treadmill tests, bone density scans, muscle biopsies, blood pressure checks, analysis of cholesterol levels, blood, body fat, aerobic capacity, and even knee strength. "The numbers on all their tests are what you would expect to see in college age people," says Professor Wiswell. "The men have an average body fat percentage of 15 percent; the women have about 21 percent."
Many experts have traditionally assumed physical fitness and agility in the human body automatically takes a steep nose dive after about age 35. But all the data in Wiswell’s lab reveal a surprising stability in athletic performance between the ages of 40 and 65, when a slight decline sets in among men. In women, the decline hits about five years earlier.
"The practical part of knowing the strength possibilities of an elderly person is that losing some strength can make the difference between independent living or placement in a care facility," says Professor Wiswell.
Yet another form of exercise — tai chi, the graceful, nonstressful workout from China — reduced the rate of falling by half in a group of seniors who took tai chi three times a week for 15 weeks.
Another study at the University of Florida found that buffing your biceps also protects your body against damage from a substance known as free radicals. Those are naturally occurring substances that are a byproduct of ordinary metabolism but damage cells and tissues. A health world buzzword, free radicals have been linked to cardiac woes as well as age-related disorders like stroke and even cancer. Thus, many health conscious people gobble antioxidants, like vitamins C and E. But the University of Florida study subjects had lower levels of free radicals in their blood after lifting light weights three times weekly for half a year. More recent findings on the effects of exercise include benefits that overcome male and female problems, damaged hearts and putting off middle-age weight gain.
For instance, researchers at the University of Pittsburgh studied 2,100 women, ages 20 to 69, and found those who worked out more than six hours a week were 27 percent less likely than other women to develop ovarian cancer. The protection was seen in both younger and older subjects. Researchers think that women who engage in regular physical activity may boost natural hormones that have an anti-tumor effect.
If men ever needed a reason to pick up an exercise habit, a study at New England Research Institutes in Watertown, Mass., may have provided it. That study found exercisers are less likely to become impotent. The study revealed that men who burned 200 calories or more a day — a level met with two miles of daily walking — have half the risk of erecticle dysfunction as other men.
Even when your health is not perfect, regular movement can help make life better. In a study on 406 heart attack survivors at the University of Texas School of Public Health in Austin, Texas, researchers took an inventory on the subjects’ health and amount of physical activity once a year for five years. Findings? While 150 had a second heart attack, those who remained active had a 78 percent lower chance of another attack.
"The wrong age group — the 30-somethings — is filling health clubs," he says. "At 57, I personally am not exercising to promote bulging muscles. I exercise to promote health so I won’t have my lifestyle restricted at age 93. It is never too late to regain muscle mass which, if left alone, starts a decline at about age 50."
Overweight and Counting … Down
Reena Dulfon, 14, trudges home every day after school, and no matter how much she begs, her mother won’t pick her up in the car. Robin Dulfon is not being a mean mom, but is helping Reena accomplish her goal. And though Reena sees this 30 minutes of daily exercise as a chore — after all, it’s all uphill — she’s secretly proud of walking the distance.
Mother and daughter have twice participated in Dr. Lydie Hazan’s eight-week PowerPlay Program for overweight and obese children and teenagers.
When Reena first entered the program a few years ago, she was a shy and baggy-outfitted 12-year-old, weighing 170 pounds, unsure if this would be just another boring visit to the doctor. But her single mom, a registered nurse, is acutely aware of the health issues involving overweight children.
“She made me do it,” Reena said, “but it was fun.” They learned about nutrition, how to read labels and count calories, and did aerobics, hip-hop and other exercises.
“It worked! The first week I lost a couple pounds, and then lost one pound a week,” said Reena, who is now a svelte 146 pounds and still counting … down.
Obesity in children is no small matter, but a health crisis of epic proportions. According to a July 2000 Newsweek article, one out of three children in this country are seriously overweight.
That statistic seems hard to believe, until you look around. Go to any mall or playground and see the results of a fast-food, fried-food diet. Children as young as 3 are being referred to Hazan, and that’s not exactly what she had in mind when she started her clinic.
“I thought I would make a difference to the older children, but I have 6-year-olds crying in my office because they are so ashamed [of] getting teased at school. I have a 7-year-old in the program that weighs 242 pounds.”
Five years ago, as an energetic Los Angeles emergency-room pediatrician, Hazan began to notice the correlation between severe asthma attacks and obesity.
“To give you an idea of the enormity of the epidemic, kids would come into the E.R. and have to be intubated [have a tube inserted to help breathing] twice a year. One night a girl almost died because we couldn’t tube her, she was too big,” Hazan said. “After that, I swore I would make sure she lost weight.”
Hazan found, however, that there were no resources for overweight and obese children in Los Angeles. And it wasn’t only Los Angeles; the entire country was lacking.
Eventually, Hazan hooked up with the Center for Disease Control’s Dr. Bill Dietz, a pediatrician specializing in overweight and obese children.
“By talking with Dietz, I soon found out there were no immediate solutions available, so I started thinking about long-term [solutions]. I developed PowerPlay based on that,” Hazan explained.
PowerPlay is a comprehensive eight-week weight-loss program that combines medical, psychological, nutritional and physical treatment, and that seeks a balance between what goes in and what goes out. A child cannot double his exercise routine for a day and expect to pig out the next, although, Hazan confesses, there are some compromises. But consistency is key, for both children and parents.
“Lead by example” is Hazan’s mantra for what she believes makes the program work. “When a child enters the program, the whole family begins to lose weight,” she said.
As a first step, Hazan gives each child two medical screenings, during which health problems, such as type-two diabetes, are often detected.
“It used to be that type-two diabetes was considered an adult-onset disease, but no more,” Hazan said.
After the medical screenings, the program provides nutritional consultation with a licensed dietitian, daily fitness classes, group and/or individual therapy, art and music therapy and continual progress assessments of both child and parent. Hazan estimates a weight loss of 10 to 30 pounds can be accomplished during the eight-week session.
“When talking to the parents, I try to demystify the whole stigmata — that weight is health — and that’s it.”
Still, Hazan fights against cultural and societal pressures. She finds the stigma attached to being overweight crosses all cultural boundaries, a little less for African Americans, a lot more for Latinos, and a whole mixed bag for Jews.
Being overweight or obese is a “huge epidemic among Orthodox Jews,” Hazan admitted. “And especially among Orthodox girls,” for whom Hazan has developed a special program.
“First of all, there are no healthy places to eat. All of the kosher restaurants serve fried foods on white or rye breads, with huge portions. Secondly, there is Sabbath, a celebration where instead of a three-course meal, there are four-course meals that start on Friday and continue until noon the next day. Challah is loaded with calories,” Hazan said.
Nevertheless, Hazan has developed a few tricks. “I’ll talk to the kids and work out a compromise for Sabbath. ‘OK, you can have half a portion of kugel, if you take a walk afterwards.'”
“I know why doctors avoid this [issue],” Hazan sighed. “It’s a very frustrating field. Kids stop losing weight, stop being motivated, and you have to be the cheerleader, the evil endorser of the program. Parents love me for that, because their child must be accountable to me.”
Robin Dulfon couldn’t agree more, appreciating that her daughter “knew I wouldn’t be nagging her anymore.” She added, “I’m such a believer in this program, I want Reena to do it again!”
Reena isn’t so sure about that, but both agree that PowerPlay is effective. Her weight loss “makes me happy,” Reena said, “and makes me look better. My friends at school really didn’t say much about it, but my family members said, ‘Wow! You look good.’
How Can We Stand By ?
With the Days of Awe just behind us, it might do us all good to consider the content of the prayers we collectively uttered. Many were personal prayers for one’s self and loved ones, but many also included prayers for the faceless poor and needy as expressions of our concern for the larger community. These prayers highlight the essence of what it means to be a Jew and reinforce how essential it is to reach outside one’s own neighborhood to assist the larger community of man.
In America, children are suffering without health care coverage. As Jews and human beings, how can we silently stand by? With both state and federal budgets reflecting healthy bottom lines, now is the time to fully fund both education and health coverage for all children. If we don’t do this now, we simply lack the will and not the means.
These issues are intertwined. The lack of funding for medical coverage contributes to school absenteeism.
At the 80-year-old Pediatric & Family Medical Center (PFMC) in downtown Los Angeles, we see this every day.
We recently treated a child at PFMC who had no family medical coverage and suffered permanent hearing loss due to recurrent, untreated ear infections, severely limiting his ability to learn in the classroom.
Children with chronic asthma are treated with home remedies and regularly miss school. Without prescription drug coverage, inhalers are not affordable.
We see developmentally delayed children who do not receive crucial developmental screenings at an early age because they do not see a doctor on a regular basis.
Hundreds of other clinics across the state see the same shameful thing. And with California’s uninsured population growing by nearly 70,000 a month, the problem is not going away any time soon. In this country, we accept the fact that education is a right – not a privilege – for our children. Education, it is argued, establishes a strong foundation for future individual endeavors as well as for society as a whole. Yet health care, amazingly enough, still remains a privilege.
While funding public education is vital, the right to health care cannot be overlooked. Without good health, children cannot benefit from their education. This is an important policy, and it is time to bring this debate into the public forum.
There is absolutely no question that this funding is vital to build a strong future for our children and the country. Unfortunately, our country does not give the health of our children the same priority.
California has been as lax as the federal government in its dedication to the health of our children. During his election campaign, Gov. Gray Davis crusaded for education reform, but his dedication to children’s health care coverage lags far behind. While the governor recently signed legislation making small dents in the needs of our uninsured, a great deal more must be done.
The state’s budget surplus led Davis to cut visitor’s fees to California’s sprawling park system. If he can make it cheaper for children to visit Malibu Creek, there must be a way to make children’s health care coverage affordable and available.
It’s time Davis and the California legislature fully recognize the findings of a recent Field Poll indicating that health care is the voters’ no. 2 concern, and it actually ranks as the top issue among Latinos.
Research from the American Association of Retired People indicates that the number of uninsured children under age 18 increased to 10.7 million in 1997 – or 15.1 percent of all children. How does this lack of coverage impact our young? According to a 1997 National Center for Health Statistics survey, children without health insurance were six times more likely to go without needed medical care, five times more likely to use the emergency room as a regular source of care and four times as likely to have necessary care delayed.
The Children’s Defense Fund indicates that uninsured children are at greater risk for preventable illness. The majority of uninsured children with asthma and one in three uninsured children with recurring ear infections never see a doctor during the year. Many are hospitalized for acute asthma attacks that could have been prevented or suffer permanent hearing loss from untreated ear infections. A report from the state of Florida indicates that uninsured children are 25 percent more likely to miss school.
Researchers have shown that investing in children’s health coverage actually saves taxpayer dollars. One in four uninsured children either uses the hospital emergency room as a regular source of health care – a costly endeavor – or has no regular source of care.
Florida found that when parents were helped to buy coverage for uninsured children, children received health care in doctors’ offices rather than hospital emergency rooms. In 1996, emergency room visits dropped by 70 percent in areas of the state served by the new program, saving the state’s taxpayers and consumers $13 million.
While educating our children remains essential, it is just as essential that we keep the issue of health care coverage for children on the front burner during 2000.
Healthy children are, in the long run, better educated, and our society will undoubtedly benefit from both. The richest nation on earth need not sacrifice health care for education. Surely we can make room in the U.S. budget for both.
Raise your voice for all of America’s children. They deserve no less.
Carl E. Coan is president and chief executive officer of the Pediatric & Family Medical Center.
Live and Be Well
Susan Fishbein was a clumsy child. She couldn’t climb stairs without falling. She was always dropping things, always spilling things when she poured. In 1983, after a bout with pneumonia, Fishbein, then a 33-year-old mother of two, living in Erdenhiem, Del., began falling more frequently. After breaking both ankles and suffering a severe knee injury within a few months, she began a round of medical tests.
Four years and numerous misdiagnoses later, a blood test revealed the shocking news: Fishbein’s coordination problems were symptoms of Tay-Sachs, a disease previously thought to affect only infants, who usually succumb by the age of 5. Fishbein was among the first adults recognized to be suffering from a rare variant of Tay-Sachs disease, known as Late Onset Tay-Sachs (LOTS).
People with LOTS are predominantly of Ashkenazic Jewish descent, although the disease also occurs in other ethnic groups. While there are fewer than 100 known cases of LOTS, the prevalence of this rare disease is estimated to be one in 67,000 within the U.S. Jewish population. Specialists believe that the actual number of individuals who carry this disorder is probably higher. The higher number would include some people who have been incorrectly diagnosed with amyotrophic lateral sclerosis, or Lou Gehrig’s disease, or spinal muscular atrophy, also known as Kugelberg-Welander disease.
Individuals with LOTS usually come to a physician’s attention in early adulthood, when they notice difficulty walking or going up and down stairs. However, what is unusual in these individuals is the additional presence of problems of balance, slurred speech and, in some cases, hand tremors.
Families of affected individuals often note that their speech is becoming increasingly difficult to understand. Another unusual feature of this disorder is the presence of psychiatric disturbances in a large number of cases. Physicians have come to recognize that such psychiatric disturbances, especially manic-depressive disorder, can be symptoms of LOTS.
The same gene causes both the infantile and late onset forms of Tay-Sachs disease, but the defect caused by the gene — a deficiency of the hexosaminidase A enzyme — is less severe in Late Onset Tay-Sachs. The pattern of inheritance is the same for both forms of the disease. LOTS can be diagnosed by a blood test that measures enzyme levels. Getting the correct diagnosis and receiving medical care from health professionals who are well-acquainted with the disorder is particularly important if psychiatric problems are present.
There is no known cure or treatment available for Late Onset Tay-Sach, yet those affected now have a glimmer of hope that one may be found. Doctors around the world are in the process of conducting experiments with enzyme replacement and gene therapy. Dr. Evan Snyder, a Harvard neurologist, has already cured the disease in mice. With continued research, Snyder said a human cure may be close.
Unfortunately, government funding for rare diseases such as Late Onset Tay-Sachs is almost nonexistent. Tay Sachs awareness peaked during the 1970s, said local LOTS fund-raiser Bonnie Pastor, and then fell off dramatically. Private donations are necessary for research and education. There are 150 other similar lysomal storage diseases such as Late Onset Tay-Sachs; research on one will help all.
If you or someone you know is interested in more information on Late Onset Tay Sachs, please call (800) 672-2022; e-mail at firstname.lastname@example.org; or write to Late Onset Tay-Sachs Foundation, 1303 Paper Mill Road, Erdenheim, PA 19038. A local contact is Bonnie Pastor (818) 906-3814
Barbara Shapiro, M.D., Ph.D., is director of the clinical neuromuscular unit at Massachusetts General Hospital. M. Priscilla Short, M.D., is director of the neurogenetics unit, University of Chicago. They co-chair the Late Onset Tay-Sachs Foundation’s medical advisory committee.
Ask the Doctor
Somewhere there is a parent who doesn’t have a thousand worries about his or her children’s health. We just haven’t met that kind of parent yet. For the rest, there’s a place you can go for answers.
On Wednesday, June 9, at 7:30 p.m., Childrens Hospital Los Angeles and the Jewish Healthcare Foundation — Avraham Moshe Bikur Cholim “Hearts of Angels” program will unite to present “An Evening Dedicated to Our Children’s Health” at the Hotel Nikko. The event is free and open to all.
A panel of selected community pediatricians and pediatric specialists will answer your questions on any and all health concerns about raising children from infancy to adulthood. The event chair is Dr. Robert Adler, associate chair of Childrens Hospital and vice chair of USC School of Medicine’s department of pediatrics.
The doctors will take questions, or you can fax or e-mail them in prior to the event.
“Parents and physicians have greater constraints on their time,” said Rabbi Hershy Ten, president of the Jewish Healthcare Foundation. “As a result, issues and concerns are not always adequately discussed. Parents must assume a greater responsibility in their children’s health care, and information and understanding is vital in this role of parenting.”
The Jewish Healthcare Foundation — Avraham Moshe Bikur Cholim is a nonprofit organization that provides subsidized health care services and social assistance to needy families throughout Los Angeles and California. Some of the philanthropic services provided are medical and diagnostic subsidies, the “Bikur Cholim House,” health care campaigns, social support and patient advocacy. One of the many goals of the Jewish Healthcare Foundation — Avraham Moshe Bikur Cholim is to expand access to affordable quality health care for individuals and communities.
Childrens Hospital is among the four top-ranked pediatric institutions in the country, and is rated the best in the Western United States, according to US News & World Report.
Reservations are required for the free event. Parents only. Discounted hotel parking. For more information, call (323) 852-0728, fax (323) 852-0727, e-mail email@example.com. — Staff Report