The 1997 NCAN conference, at Loyola Univ. in Chicago, attracted 350 persons active various AIDS ministries. They heard a variety of presentations about improving religious and medical help for minority and women HIV/AIDS patients, and about the founding of the AIDS Quilt.
I’m not Cured, but I’m Healed,” Patry Bentz told participants at the 10th anniversary conference of the National Catholic AIDS Network in Chicago. A middle-aged Minnesota woman who contracted AIDS from her now-deceased husband, Ms. Bentz meant that, though not cured of the disease, she felt healed in spirit by the support she has received from the church, and especially by the companionship of participants gathered for the six-day event at Loyola University Chicago. “Companions on the Journey,” in fact, was the title of this year’s gathering that ran from July 17 to July 22.
The conference brought together 350 men and women from around the country, both religious and lay. Virtually all — including persons like Ms. Bentz who are living with the disease — are engaged in various kinds of AIDS-related ministries. As the word “companions” also suggests, the themes of the plenary sessions and the workshops had much to do with community. Because of the stigma connected with AIDS, however, the lack of a strong sense of community nationwide has meant that efforts to address the pandemic in a unified and mutually supportive way have been slowed.
In the first plenary session, for example, Mindy Fullilove, M.D., associate professor of clinical psychology and public health at the New York State Psychiatric Institute and Columbia University, spoke of homophobia as one of the destructive forms of this stigma. Referring to a study of attitudes among black youths in San Francisco, she spoke of the youths’ view that African Americans who had contracted the disease through intravenous drug use were worthy of compassion and respect, but not those infected by homosexual activity. It was difficult for them, she said, even to imagine a black man as gay, because they believed that AIDS was a disease of gay white men. Dr. Fullilove, who is herself African-American, described attitudes of this sort as reflective of what she termed a consciousness of separateness; it must be replaced, she urged, by an acknowledgment of the interdependence of all communities.
The absence of wholeness in the wider community and the separateness that goes with it, is also evident in the unequal access to newly developed drugs called protease inhibitors. Taken in combinations, referred to as a cocktail, they have made it possible for many people with the virus not only to live longer lives, but also to live more active lives. The drugs are very expensive, though, and consequently availability tends to be limited to the well insured or wealthy. Jon Fuller, a Jesuit priest and physician who is assistant director of the Clinical AIDS program at Boston City College, observed that, in consequence, the virus is making increasingly deadly inroads among poor people of color — the very people with least access to the new medications. As for developing nations, he added, where just providing clean water is often a major problem, protease inhibitors are out of the question.
Moreover, although the death rate among males in the United States has begun to decline because of the protease inhibitors and more emphasis on prevention, there is a shadow side to this good news — namely, the emergence of an overly optimistic outlook. Dr. Fuller spoke critically of newspaper headlines like “When the Plague Ends” as premature and misleading. Once the public thinks that the epidemic is over, he said, it will be difficult to regain a strong interest in pursuing an end to the disease. The negative implications for fund-raising are already being felt; donations have fallen off, and there have been cuts in government funding.
Dr. Fuller also Warned that because the new drugs can in certain cases reduce the virus to undetectable levels, some who are infected may mistakenly assume that it is permanently gone and abandon needed precautions. Contributing to this misperception are magazine advertisements for the protease inhibitors. He showed slides of several that have appeared in Arts and Understanding. Healthy looking young men (all of them white) are shown engaged in physical activities as strenuous as rock climbing. Such images subtly suggest that the virus is less threatening than it really is. Even the term “cocktail,” he said, has a falsely glamorous edge to it.
Toward the end of his presentation, Dr. Fuller stressed that because there is no cure for AIDS, the first priority must still be prevention. In this regard, he voiced concern that the Catholic Church has been reluctant to engage in dialogue about the role that needle exchange and condom education programs have played in reducing the rate of infection in some parts of the world. He suggested that dialogue along these lines could be productive, and that this might best be approached through the efforts of theologians — a proposal endorsed in several of the regional meetings that took place before the end of the conference.
If insufficient attention is given to the needs of low income people of color in general who are H.I.V.-positive, so is there neglect regarding women. Most of the AIDS-related research has focused on males; and yet, while the rate of infection among men has started to drop, for women it is rising. AIDS in the United States is now the third leading cause of death among women between the ages of 25 and 44. They have consequently been among those most harmfully affected by the consciousness of separateness.
By way of underscoring this lack of attention, the conference included several presentations by women who discussed some of the steps now being taken to address the imbalance. Since many H.I.V.-positive women are mothers, one of the issues facing them concerns the need to make arrangements for the care of their children before they are incapacitated by their illness. This was the theme of a workshop entitled “Mothers with H.I.V., the Journey,” conducted by Patty Bentz and another woman from Minnesota, Mary Gherer. The focus of their workshop was a video of the same title that they have produced in conjunction with a group of H.I.V.-positive mothers. The video describes the way in which-working with case managers and attorneys — the mothers are offered an opportunity to ensure that the eventual caregivers of their children will be the ones they themselves have chosen.
Another example of emerging efforts to assist mothers with H.I.V./AIDS began two years ago in Portland, Ore. Realizing that there were no services there, the Rev. Bruce Cweikowski, who is in charge of AIDS ministries for the Archdiocese of Portland, collaborated with Sharon Kirk, a member of the Sisters of St. Mary of Oregon, and other religious women. Together they have developed a ministry called Women’s Intercommunity AIDS Resource. Sponsored jointly by a dozen congregations, W.I.A.R. provides direct services for H.I.V.-positive women and also for their children — increasing numbers of whom are also testing positive throughout the country. It is a difficult ministry on more than the health level, because women who test positive not only struggle with the disease itself, but also with the psychological scars from their backgrounds of isolation, poverty and abuse. As to abuse, the director of W.I.A.R., Sia Lindstrom, noted that H.I.V. and abuse, both sexual and physical, tend to go hand in hand.
Besides the Practical Help provided by groups such as W.I.A.R. and videos like “Mothers With H.I.V., the Journey,” efforts of this kind perform an additional service — namely, raising consciousness about the suffering and the humanity of persons with AIDS, men and women alike. Few individuals have had a greater impact in raising consciousness on the national level than Cleve Jones, another of the main speakers. It was he who began the Names Project and the AIDS quilt. In his address, he described how the idea of the quilt originated from his attachment to a quilt his great-great-grandmother had made for him decades before. The concept began to crystalize after a 1985 commemoration of the murder of Harvey Milk, the gay activist San Francisco supervisor who had been murdered seven years before. The commemoration included placards with the names of people who had by that time died of AIDS in San Francisco. The idea continued to crystalize, and two years later quilt pieces with the names of deceased loved ones made by the friends and family were assembled and displayed for the first time on the grounds of the Washington Monument in Washington, D.C.
The quilt struck a deep chord. As Mr. Jones observed, for ordinary men and women it quickly became not only a form of personal commemoration, but also a powerful symbol of caring for others and an unspoken plea that there be no rejection of persons with AIDS. In the first year, residents of 10 cities had an opportunity to see it, and of 16 in the following year. Now grown to an enormous size, it was last displayed in its entirety on the Monument grounds in the fall of 1996. Since its beginnings, 45 local Names chapters have been organized in different parts of the country; several panels lent by the Chicago chapter were on view at the conference.
But the quilt has become well known abroad as well, and one of the many moving moments of the conference occurred when Mr. Jones spoke of the first panel that had been sent to him from Africa, by a woman there whose husband died of AIDS 10 years ago. Unbeknownst to him at the beginning of his talk, the woman was present in the audience, Noerine Kaleba of Uganda. Ms. Kaleba, who is now the Community Mobilization Advisor at UNAIDS in Geneva, Switzerland, rose to identify herself at the end of the presentation. At a later gathering she described her own story of what it means to be, as she put it living with AIDS in the family. Not only has she herself been widowed by the disease; her sister has been infected with the virus, As has the sister’s two-year-old son.
The conference’s overall theme of community as the needed antidote to the consciousness of separateness was the focus of the main liturgy, celebrated by N.C.A.N.’s episcopal moderator, Bishop Howard Hubbard of Albany, N.Y. The homilist was Msgr. Ray East, the African-American pastor of St. Teresa of Avila Church in Washington, D.C. Alluding to the second chapter of Paul’s Letter to the Ephesians, in which Paul speaks of breaking down the dividing walls of hostility, Monsignor East said that the Scriptures as a whole should “forge us into solidarity with the poorest sister or brother in the world with AIDS.” This was the clearly perceived goal of the co-workers and companions on the journey who attended the conference.
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Byline: Gregg Sangillo and Sara Jerome
The advertising and government-affairs firm R&R Partners has hired John Lopez , chief of staff to Sen. John Ensign , R-Nev., as a senior lobbyist. Lopez, 40, began working for then-Rep. Ensign in 1995. He took a leave in 1998 to work on his boss’s first Senate run, which Ensign lost in a squeaker to now-Senate Majority Leader Harry Reid , D-Nev. “It was very difficult, but it all worked out,” Lopez says. Ensign ran again in 2000, this time successfully, and Lopez was named chief of his Senate staff in 2006.
Ensign’s extramarital affair and the subsequent scandal made headlines this year, but Lopez insists that his departure has nothing to do with those problems. The senator said in a statement, “John Lopez has been a very loyal and talented aide and friend for the past 15 years.” Don Stewart , communications director for Senate Minority Leader Mitch McConnell , R-Ky., adds that Lopez is “well-liked, and he has a lot of people who appreciate his efforts in the leadership office.”
A Reno, Nev., native, Lopez figured out early that he was a Republican. As a 7-year-old during the 1976 presidential race, he remembers hearing a radio ad for Gerald Ford . “I looked at [my mother] and said, ‘Mommy, if you vote for Jimmy Carter , he’ll raise your taxes.’ ”
R&R Partners, incidentally, is known for promoting the Las Vegas slogan “What happens here, stays here.” –Gregg Sangillo
Around The Agencies
New to the Health and Human Services Department is policy analyst Julie Hantman , who is an interdisciplinary scientist at the Biomedical Advanced Research and Development Authority, which is part of the office of the assistant secretary for preparedness and response. Hantman, 40, will focus on policies for procuring medical supplies to confront biological emergencies, such as an H1N1 flu outbreak, a bioterrorist attack, or an emerging infectious disease.
BARDA contracts with companies that manufacture vaccines and other critical supplies to ensure that the commodities are tested and ready. Because there is rarely a market for such products until disaster strikes, the government’s procurement practices “create an incentive of the most fundamental kind,” Hantman explains.
Before joining HHS, she spent four years with the Infectious Diseases Society of America, most recently as a senior program officer for public health. During that period, she registered as a lobbyist and had frequent contact with staff members at the Centers for Disease Control and Prevention, the National Vaccine Program Office, and the White House Homeland Security Council. Hantman also helped draft a statement on adult immunization that has since been endorsed by the American Medical Association. For 10 years before joining the society, she was an independent health policy consultant.
Hantman’s passion for health extends outside the policy arena: She has produced radio documentaries about the history and science of AIDS medication and the psychological effects on New Yorkers of the September 11 terrorist attacks. She also performs as a storyteller at SpeakeasyDC, the Capital Fringe Festival, and other venues. One of Hantman’s tales recounts lessons she learned as a “middle-class child of the suburbs” volunteering at needle-exchange programs aimed at preventing the spread of HIV/AIDS. –Sara Jerome
Brenda Sulick has joined the National PACE Association as vice president for congressional affairs and advocacy. She will lobby to protect the congressionally authorized Program for All-Inclusive Care for the Elderly, which coordinates the medical needs of frail senior citizens.
Sulick, 45, sees PACE as an example of successful government involvement in health care, and she wants the program to stay that way. She worries that health care reform might “inadvertently impact” PACE, which is largely financed through Medicare and Medicaid. “There could be repercussions for PACE if legislation is passed by people who aren’t aware of the PACE programs and how they function,” Sulick said.
She arrives from the Alzheimer’s Association, where she was the lead lobbyist. Before that, Sulick was an aide to Sen. Blanche Lincoln , D-Ark., on the Special Aging Committee, a position supported in part by the John Heinz Senate Fellowship in Issues of the Aging. Earlier, she handled health care issues for AARP’s National Retired Teachers Association division.
Sulick isn’t pleased with the way seniors have been drawn into the hyperbole of the health care debate, citing “inaccurate and distorted messages in the media about end-of-life counseling.” Realistic discussions about “long-term care services and supports” for seniors are necessary, she says. –S.J.<p> Jennifer Dunphy , 25, a lobbyist in the Boston office of O’Neill and Associates, was promoted to director in the firm’s Washington government-relations practice. (The CEO of O’Neill and Associates is Thomas P. O’Neill III , son of former Rep. Tip O’Neill , D-Mass., the longtime House speaker.) Dunphy says that her transition from Boston to Washington has been like “a high school reunion” with Capitol Hill staffers for the Massachusetts delegation.
Before she became a lobbyist, Dunphy focused on Bay State Democratic politics. She was a finance assistant on the 2004 Kerry-Edwards presidential campaign, and she stays in touch with former colleagues in the office of Sen. John Kerry , D-Mass. Dunphy was also the finance director for Massachusetts Sen. Marc Pacheco , and a campaign scheduler for Christopher Gabrieli during his failed 2006 bid for the gubernatorial nomination. She worked with Hillary Rodham Clinton ‘s 2008 presidential campaign on a finance steering committee devoted to young professionals.
Dunphy, who is concentrating on health care legislation, says she feels “less removed from the real action” now that she’s in D.C. –S.J.
Promoting intercultural understanding has become a specialty for S amia Makhlouf , 27, who joined the Arab American Institute last month as a government and policy analyst. She came from the Defense Department, where, as a program manager at the Near East South Asia Center for Strategic Studies, she ran diplomatic seminars for international officials. Participants — from ambassadors to lieutenant colonels — would convene to hash out problems, build understanding, and learn more about Washington’s often-perplexing operations. “It’s difficult, unless you’re involved in our government, to understand how things work,” Makhlouf said. “We would explain to them how and why the things they found frustrating happen.”
Makhlouf traveled to more than 25 countries during her Pentagon tenure. Fluent in Arabic, she helped persuade officials from nations that had no diplomatic relations with one another to engage in dialogue and dinner: At the end of each seminar, participants would contribute dishes from their homeland to a potluck meal. “These men would come without their wives and struggle in hotel kitchens to make these elaborate entrees. Sometimes it would be awful,” she said, “but we’d eat it.” Makhlouf would typically prepare favorites from her Palestinian-American upbringing, unless another participant was Palestinian. Then she would represent her American roots–whipping up peanut-butter-and-jelly sandwiches or pizza.
Earlier in her career, Makhlouf interned at Defense and then was director of development for the U.S. Copts Association, which promotes the interests of a Christian religious minority in Egypt.
At the AAI, Makhlouf will focus on domestic issues, seeking ways to promote civil rights and include more Arab-Americans in government, including voting. “In the Middle East, your vote sometimes doesn’t count, depending on the type of government, your gender, and which ethnic or religious group you’re part of,” she said. “Sometimes being politically active was even dangerous. Arab-Americans sometimes have that mind-set. We want to convince them you have to vote — it’s your civic duty.” –S.J.
In other news from the Arab American Institute, Nadine Wahab recently left to become communications director for the Rights Working Group, an organization that promotes civil liberties and human rights in the U.S. She is preparing to launch the group’s program on racial profiling. While at the Arab American Institute, Wahab, 33, was a producer for Viewpoint With James Zogby, a television program featuring the group’s president. The show is broadcast throughout the Middle East by Abu Dhabi Television.
Wahab, 33, who had previous experience with a video-production company in New York City, was also an early producer for the “Imagine-Life” ad campaign, which spotlighted the hardships facing Palestinians in the occupied territories. “It seems to be that a lot of people are now looking for someone who is versed in both PR and video work,” she says. Wahab has also worked for public-relations firm Keybridge Communications in Washington, and volunteered with the Network of Arab-American Professionals in New York.
She spent the first part of her life in Egypt and Kuwait before her family moved to Northern Virginia. She graduated with a psychology degree from Virginia’s Marymount University. Even off the job, Wahab spends much of her time fighting for human rights. “A lot of my friends are organizers. I work with a lot of Palestinian organizers on the issue of peace in the Middle East,” she says. “One of the things about working and living in D.C., especially in this kind of field, is that you can’t differentiate between when you go out at night and what you do in the morning.” Wahab also enjoys Omar Offendum and other Arab-American hip-hop artists.
While she was at the AAI, a theatre organization in Venice, Calif., called the organization seeking input for developing an Arab-American character in an upcoming production. The character in the play Not Until You Know My Story was ultimately based on Wahab. When she saw the production in D.C., she got a surprise. “They really got my mannerisms. I did the entire [research] interview over the phone, and so when I saw them, I’m like, ‘How do you know that I move like that?’ ” –G.S.
The Hatcher Group, a public-affairs firm, has brought in several ex-journalists to build up its Bethesda, Md., office. The latest hire is Phyllis Jordan , a former Maryland editor for The Washington Post. Jordan says she thought it was time to leave the Fourth Estate. “One of the frustrations for me in journalism was always that you could write about something that you really believed in, but you could never advocate for it. And this [job] gives me an opportunity to do that,” she says. “I don’t think I’m ready to go out and represent insurance companies. But I am ready to advocate for good causes. And everything they handle here are good causes–nonprofits and foundations.” Among the Hatcher Group’s clients are the Annie E. Casey Foundation, the Center for Global Development, and the Working Poor Families Project.
One of the highlights of Jordan’s Post career was editing a story about a 12-year-old boy whose untreated tooth abscess led to his death. “When the reporter I was working with [ Mary Otto ] first started the story, the boy was alive,” Jordan recalls. “And she was doing it as a story about how for $80, they could have fixed his tooth abscess, but instead they spent $200,000 on brain surgery. And then when we were about to run the story, we called to check on something and found out that he had died. Congress jumped on it, and it became a big issue. And they put dental benefits into [the State Children’s Health Insurance Program].”
Jordan, 50, hails from Lexington, Va. She earned her bachelor’s degree at Sweet Briar College in Virginia and a master’s in journalism at the University of Missouri (Columbia). Earlier in her career, she covered military matters for The Virginian-Pilot in Norfolk, Va., where she met her husband, Capt. Brian Wilson , a Navy lawyer. When Wilson’s career sent the couple to California, Jordan took a job at the Los Angeles Times as city editor for Ventura County. –G.S.
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