Ben Carson's return flight from the other side of the world had touched down barely 24 hours earlier, but Hopkins' pediatric neurosurgery director fielded questions at a standing-room-only press conference on July 11 as unflappably as if the operation to separate 29-year-old conjoined twins had, in fact, succeeded. Carson, one of the lead surgeons for the unprecedented procedure, knew reporters wanted to hear directly from him what had happened at Singapore's Raffles Hospital. In a Hopkins Outpatient Center conference room, packed tight with nearly a dozen cameras and journalists from around the country and around the world, the softspoken neurosurgeon described the events preceding the twins' deaths on July 8, then took reporters' questions one by one.
From the first, Carson had estimated that Ladan and Laleh Bijani, Iranian sisters fused together at the sides of their heads, had a 50 percent chance of surviving an attempt to give them the individual lives they craved. To assure himself that the women fully understood the surgical risks, including the possibility that one or both might survive in a vegetative state, he had spoken to them personally. Yet in the end, he said, it was their strong desire to "go for broke" with a single-stage operation that played a significant role in the outcome.
The sisters' brains were separate, but among the blood vessels they shared was the superior sagittal sinus, which the surgeons replaced with a leg vein in one sister. When the graft filled with blood, then later clotted off with no ill effects, the surgical team realized blood was leaving that twin's brain via an unknown route. Carson at that point strongly advised stopping the operation so the team could revise its approach and proceed again in two or three weeks. The twins' relatives, however, who were making decisions on their behalf, insisted their wishes be carried out. The two were finally separated, but died of uncontrollable hemorrhaging within 90 minutes of each other.
In retrospect, Carson said, "If it had been done here and I had been in charge, I personally wouldn't have accepted an ultimatum of that nature."
Still, despite characterizing the 54-hour operation as one of the five most difficult of the thousands he's performed, Carson didn't Monday-morning quarterback his decision to try to help the twins in the first place. "It is never a failure," he said, "if you take something away from it that will improve your chances next time around."
- Mary Ann Ayd
In an unprecedented feat of logistics and bravura, 12 Hopkins surgeons performed a triple-exchange kidney transplant operation this summer, giving a woman from Miami, a woman from Pittsburgh and a child from Washington, D.C., new chances for lives free of dialysis. The three organ recipients came to campus separately for evaluation, each with a willing but incompatible donor. Thanks to its extensive database, the transplant team figured out that by swapping each of the intended kidneys among the three pairs, all the recipients would receive a compatible kidney.
"It was a Eureka moment when we solved the compatibility puzzle," says Robert Montgomery, lead surgeon on the case and director of incompatible kidney transplant programs. "If one piece fell apart, the whole thing would fall apart."
Orchestrating a successful exchange among six people involved weeks of meticulous planning and, in the end, choreography. All three donors had their kidney removed simultaneously, and the surgeons then made sure each recipient was ready for the new organ. The surgical marathon lasted nearly 12 hours.
The three patients with new kidneys were equally ecstatic. Thirty-year-old Germaine Allum, the Florida woman who'd been close to death from kidney disease when Montgomery first met her last February, may have expressed their feelings best. "We each have a piece of each other now," she whispered.
- Mary Ann Ayd
Betty Greer was an institution at the Wilmer Eye Institute, if only by virtue of her four decades of service. But the former scrub nurse was more than a long-time employee. Of the hundreds of thousands of people who have drawn paychecks from here, Greer, who retired last year, belongs to an exclusive club. Two operating suites bear her name.
Greer came to work at Wilmer in 1961 and, in just three months, became former chairman Edward Maumenee's personal scrub nurse. "God granted him the most gifted hands," Greer says of her first boss. "In eye surgery, the tissues are so fine, but he knew the depth to get. His sutures were so pretty." Soon, she found that she had watched so many operations that she could guide the residents in Maumenee's techniques.
"She had enough knowledge that residents could ask her, What would Dr. Maumenee do?" remembers top ophthalmologist Walter Stark, who was once one of those residents. "She'd look through the microscope and say, 'In this complicated case, he would take this instrument and use it in this special way' -- and that would usually get the doctor out of trouble."
Greer, a single mother with four children who never advanced beyond an LPN but always dreamed of becoming a doctor, got such satisfaction from her work that she volunteered her evenings to teach residents. "I have at least 100 sons and daughters," she liked to say, "and to see them go on to be professors, I feel like I was a part of it."
"She was pretty much queen of the OR," Stark says. "Everybody loved Betty Greer."
- Mary Ellen Miller
David Hellmann wants to shake the dust off the old doctor's black bag and convert it into a mobile armory of high-tech clinical tools. Hellmann, who's director of medicine at Johns Hopkins Bayview, points out that the most recent addition to the bag is the ophthalmoscope, which was invented in 1851, and "if you look at what the average doctor can do at the bedside with what's inside, it hasn't changed in 150 years."
If the truth be told, the doctor's black bag has pretty much disappeared. (Doctors used to rely on it when they made house calls, and we know what's happened to them.) But sensing the needs of a rapidly aging population, as well as the continuing miniaturization of medical technology, Hellmann wants to reinstate it for today's health care needs. Why transport the geriatric patient from the home or nursing facility to the hospital for diagnostic tests, he asks, if the physician can bring some diagnostic tests directly into the patient's living room or to the bedside? The first piece of technology he would place in his new black bag is the portable ultrasound.
Is the heart too big? How well is it squeezing? Is there fluid in the lungs? Do the valves leak? "These are questions this device can answer at the bedside," Hellmann says, pointing to a waffle-iron- size machine on the table in front of him. Yes, but can an internist in an already demanding residency program be trained to use such advanced technology? That's a critical question. To get at the answer, Hellmann, cardiologists Edward Shapiro and Roy Ziegelstein, and ultrasound technician Carol Martire are studying how quickly internal medicine residents from Bayview and Hopkins Hospital can learn to do limited ultrasound. They'll compare the evaluation results the residents get using the technology with those they get from straight physical exams.
If the results are positive, Hellmann may explore using portable ultrasound to detect abdominal disorders, aortic aneurysms, blockages in the kidney, an enlarged liver or spleen. And that may open the door to other technologies for house calls -- -high-tech blood and protein testing, for instance, which could help diagnose early ovarian and prostate cancers right at the bedside. Some internists might resist such technologies, Hellmann and Shapiro both acknowledge, and want to stick to the traditional "laying on of hands" for their physical exams. But "it must be admitted," Shapiro points out, "that the physical exam is limited in its sensitivity and its specificity -- even in the best trained hands."
- Gary Logan
Not long ago, private philanthropy was like the icing on the cake: sweet, surprising and something you could live without. Now it's not the icing, it's the cake -- or at least a big part of it. "Private philanthropy," says John Zeller, "has grown from a marginal component to a major piece of financial planning."
As associate vice president for development and alumni relations for Johns Hopkins Medicine and the Johns Hopkins Institutions, the silver-haired Zeller looks straight out of central casting. But that doesn't make his task of raising $1 billion any easier. That figure represents Johns Hopkins Medicine's part of the University's ongoing $2 billion Knowledge for the World campaign.
With $580 million committed so far, Zeller is already more than halfway there, and the campaign, which ends in 2007, isn't yet halfway over. But much is riding on what he can bring in: professorships and scholarships, clinical and research programs, sophisticated technologies, and buildings like the Children's and Maternal Hospital and the Cardiovascular and Critical Care Tower. The campaign's multiplicity of needs, or what he calls its "specificity," poses Zeller's toughest test, for in the end, he could meet the overall campaign goal, but fall short on some specific priorities.
One of those priorities, the buildings, is turning out to be the biggest challenge. Drumming up interest in bricks and mortar is never easy, and it's harder still in a place like this, where donors, many of them former patients, want to direct their contributions to specific clinical or research programs.
That kind of support is the mainstay of Hopkins Medicine giving, a fact that's due in large part to Zeller.
When he joined Hopkins in 1995, fund-raising here was flourishing in a few services -- the Wilmer Eye Institute, the Brady Urological Institute, and the Oncology Center, to name three. Realizing that patients' relationship to the organization is through their doctor, Zeller teamed department chairmen and key faculty with development officers, who began an intense campaign to help the physicians understand how they could engage patients, families and friends in supporting their work. Then, says Zeller, "We created partnerships between faculty and donors to identify areas of need and mutual interest."
Those partnerships have resulted in what is probably the most successful "grateful patient" giving program in the country. Now the question is how Zeller will reach the $275 million goal for buildings while still maintaining that momentum. "It requires additional communication and consensus among the players," says Bob Lindgren, University vice president for development and alumni relations. "Faculty members need to understand the bigger picture, how the buildings, even if they're not moving into them, could improve their own situation."
Key to the campaign's success, says Lindgren, will be finding the really big donors. To that end, Zeller has concentrated on building a systematic approach to major gifts from individuals. Solicitations always begin with face-to-face meetings with prospects. "It's getting down to what their interest is," he says, "telling them how their funds might be used, presenting a proposal, and discussing how the gift might be funded." Then comes what's known as stewardship. "Going back every year, telling donors how their gift has been used and the difference it's made -- that's stewardship. It's an immense task, but stewardship is what leads to the next possible gift."
Also important will be mitigating the effects of HIPAA, the federal privacy regulations that require patients to sign a form before they can be approached about making a gift. Zeller says it's too early to tell just how much of a stumbling block HIPAA will be, "but so far, we've encountered relatively little unwillingness to sign the authorization." With 340 gift officers and staff, development at Johns Hopkins is a huge enterprise. Roughly one half of all fund-raising business is directed to Medicine. Since Zeller joined Hopkins, in 1995, the Fund for Johns Hopkins Medicine has raised over $1 billion.
Zeller says the extraordinarily wealthy are a delight, but adds he's had some of the most fun with donors who give just a few hundred dollars. "He's very comfortable with people," Lindgren says. "He goes about what he does with such dignity and perseverance that everyone respects and admires him. He's a superb fund-raiser, absolutely one of the best in medicine in America today."
- Anne Bennett Swingle
Last week, I visited an old friend and former business colleague. In the past several years we've occasionally discussed a medical condition with which he is afflicted, and he has asked if perhaps one day he could meet an expert from Hopkins, with the thought of providing a charitable contribution to support research related to this disease. It so happened that finally we could align three hectic schedules to enable me to introduce him to the Hopkins physician doing research in this area.
So we all get together and sit down for a visit, but before I can get two words out of my mouth about how opportune it was to have this meeting, the Hopkins faculty member pulls out a one-page, single-spaced, small-typeset form and asks my friend to sign it. "What the [censored] is this?" my friend demands. "A HIPAA authorization form," sayeth the doctor of Hopkins. "Before we can talk about your illness, I need permission from you to hold this discussion about what might be sensitive personal medical information."
Can this be happening? Few things are more sacred or important to us than preserving the privacy of our medical records. We all want that. But because there were some egregious violations of this trust in the past, the feds jumped on their white horses and rode down Pennsylvania Avenue papering it with a mile of privacy regulations under the Health Insurance Portability and Accountability Act. Presumably these new regs will save us all from the evil-doing snoops out there who would abscond with our sensitive medical records without our knowledge.
Well intentioned? "You betcha!" as they say in Minnesota. But even the reticent denizens of Lake Wobegone would shout, The implementation of this worthy goal is just plain dumb. Now, even casual conversations about medical conditions become a potential use or disclosure of sensitive medical data, and are therefore covered by HIPAA.
These regulations have the potential to expand medical malpractice suits to a level never previously imagined. A casual conversation like the one we held might lead to a discussion with the medical school development staff in order to put a proposal together for the prospective donor. Without HIPAA consent, however, the prospect could turn around and complain to the federal government (which could fine us), or could sue us under state privacy laws for inappropriate disclosure, even though, as in this case, the doctor (and yours truly) were never involved in the prospect's care.
The future costs of implementing the HIPAA privacy regulations, which for the most part have taken effect only recently, represent a huge unfunded mandate. Certainly, the direct costs of heightened security to protect unauthorized access to your medical records are reasonable and especially necessary in this day of easy electronic access. We expect to pay them and do. But the indirect costs -- tracking every conversation and every form of encounter with patients and patient data and maintaining an audit trail -- have yet to be calculated. They are going to be enormous. And no doubt the prospect of HIPAA-related fines and litigation will lead to new layers of defensive administrative practices that will even further raise the cost of medicine.
And they ask me why I drink -- it's to numb the pain! But don't tell anyone, because if you do, I might have to sue you for unauthorized release of my personal medical information.
- William Brody
For as long as she can remember, Aimalohi Ahonkhai has been clear about two things: She would be a physician. And she would be a physician who changes the fact that when it comes to medical care, the world's have-nots are disproportionately people of color. The disparity was obvious in the Philadelphia suburb where Ahonkhai grew up, the daughter of a pediatrician and a teacher. In Nigeria, where she often went to visit her grandparents, the inequality in health care was glaring.
So when the Harvard graduate arrived at the School of Medicine three years ago, it didn't take her long to hook up with other students equally bent on altering the status quo. At Hopkins, Ahonkhai met Nadine Jackson, a veteran of several medical missions to the Caribbean. And at a Student National Medical Association meeting, Ahonkhai learned from University of North Carolina medical student Patrick Hines about a campaign getting under way in Ghana called Save A Million Lives. Putting their heads together, the three med students came up with an idea for an ongoing education program aimed at curbing the HIV scourge in rural Ghana. To be centered in the village of Ada, the program would pool SNMA resources with those of the organization founded by a Ghanian princess, Asie Ocansey, and American musician Isaac Hayes.
For their first mission in June 2001 (there have since been two more), Ahonkhai joined forces with more than three dozen medical and public health students, physicians and nurses, who were greeted in Ada with open arms at an enormous welcoming reception hosted by all the chiefs and elders in the community. In just two weeks, the all-volunteer group set up a free health screening clinic, trained local community health nurses to do HIV testing and counseling using a curriculum Ahonkhai wrote, and surveyed nearly 1,300 villagers to discover what they know about HIV.
One of the biggest obstacles to halting the spread of HIV in Africa, says Ahonkhai, is stigma. "I'll never forget one infant who looked like a skeleton," she says. "His mother had died of AIDS, and the family members were afraid of him. It tore my heart apart, holding this little child struggling just to breathe."
Yet, even though she's put unforgettable faces on the numbers -- in Ghana alone, some 400,000 people have HIV and 120,000 children have been orphaned by it -- Ahonkhai refuses to be discouraged. "I can't cure poverty, I can't bring HIV drugs to treat everyone," she says. "But I can define and appreciate our successes. The community health educators were recruited before we arrived in Ada, and they showed up to be trained. That's success. People developed their own passion for this cause and kept it up after we left. That's success. We got some of the village chiefs to support condom use. That's success."
And those achievements have changed Ahonkhai. Previously planning to get a master's degree in public health when she finished medical school, she's opted instead for a fellowship under Hopkins HIV expert Robert Siliciano. "My experience in Ghana shaped that decision," says Ahonkhai. "It's given me a focus that I can dedicate myself to."
- Mary Ann Ayd
Of the thousands of visiting professors who've stepped up to podiums here, none had ever been invited to address the issue that Juanita Merchant did. To be sure, the University of Michigan professor of internal medicine had plenty to say about her research on gastrointestinal cancer at the Department of Medicine's grand rounds. But it was in smaller, more informal settings during her two-day stay that Merchant led no-holds-barred discussions on why so few black, Hispanic and other minority physicians opt for careers in academic medicine.
Merchant, a Stanford undergraduate who earned both her medical and doctoral degrees at Yale, was an obvious choice to inaugurate Medicine's minority visiting professorship. The post, says Gary Wand, chair of his department's year-old diversity council, is meant to showcase the work of the country's very talented minority physician scientists, as well as hang out a welcome sign for those who might bypass Hopkins because they think it's an ivory tower.
No one is really sure why less than 3 percent of faculty at America's leading medical institutions are minorities. At Hopkins, for example, although minorities make up as much as 20 percent of the medical school classes and about 8 percent of the instructors and assistant professors, only 2.7 percent are full professors.
In meetings with faculty, residents and fellows, Merchant drew lessons from her own experiences. "I brought up prickly issues," says the 47-year-old Howard Hughes investigator, "such as how rarely top postdocs and technicians get assigned to work with minority and women junior faculty. It's not necessarily racism -- bigger labs tend to suck up a lot of the resources -- but without the nuts and bolts of what it takes to succeed, it doesn't matter how much you work or how much grant money you get, you're going to look unproductive."
Merchant acknowledges that minorities often feel pressure to practice in the community, but tells those who see a dearth of role models in academic medicine, "I learned very early that if I wanted to effect changes, I'd have to be able to get the ears of people who can make changes. Don't complain that there aren't enough of us if you don't want to be part of the solution."
To that end, Medicine's Diversity Council is also setting up a program to match its 30 minority residents and fellows with mentors and recruiting the best fourth-year medical students from around the country for a monthlong clerkship.
"In the past, we've been too humble about blowing Hopkins' horn to the minority community," says Wand. "These programs show we mean business."
- Mary Ann Ayd
A call to the office of Paul White, assistant dean for admissions and financial aid at the School of Medicine, revealed all sorts of interesting data about the 119 men and women who began medical school here this month. What's most striking is how clearly the demographics of this Class of 2007 display the changing face of American medicine itself.
In just over a generation, students choosing medical school have gone from fresh-faced 22-year-old white males just out of their undergraduate experience to men and women from every background. As was the case last year, this Hopkins class is 53 percent female. One of these women arrives with 10 years of experience as a detective in the Chicago Police Department.
Agewise, the group includes18 under-represented minorities (African American or Hispanic), four students already in their 30s and two who are only 20 years old. One male member of the class spent last year in Iraq as a fighter pilot instructor with the U.S. Air Force; one woman had been working as a kindergarten teacher. The most-represented undergraduate colleges include JHU (10 students), Yale (seven) and Duke and NYU (five each). The students hail from 30 states, topped by Maryland (17), New York (15) and California (12).
All in all, this is a select bunch. Out of 4,265 final applications to the School of Medicine for this year's entering class, these students represent the 2 percent who will finally attend medical school here.
Dear Dr. Gallant Can I get HIV from being kissed on the neck, given that the skin on my neck is intact?
Dear Joel Been on AZT/3TC/NVP for 18 months. Good response. 100% compliant. Is there any reason why I should not ask for my medication to be changed to AZT/3TC/EFV? Many thanks for this forum. Kind regards, Trevor.
Dr. Gallant My sister is a barber in a very bad part of town. When I went in there the other day, she was washing out her mouth because she had gotten some hair in her mouth from some guy who she thinks is not in very good shape. Is hair infectious, especially in the mouth? P.S. If it is, how could she protect herself without quitting her job?
For more than six years, HIV/AIDS specialist Joel Gallant has been fielding questions like these as director of Expert Question & Answer. The two online forums on the Johns Hopkins AIDS Service Web site are a free service in which faculty AIDS experts answer questions from physicians around the world and also from HIV-positive patients. The issues they touch on can be as complex as concerns about antiretroviral therapies or as basic as, well, whether it's possible to get AIDS by touching.
Gallant personally responds to more than 100 questions a month, more than half of those that come in from clinicians and practically all the queries from patients, unless he deems them unsuitable. (The patient forum receives about five times as many queries as the clinician one.) Over the years, he's become so adept at composing answers quickly -- even long, technical ones -- that he now takes advantage of missed patient appointments in the clinic or sleepless moments late at night in a hotel room to write back.
"Some people ask questions that are very sophisticated; others know little," says Gallant, who's associate director of the Division of Infectious Diseases. Some are not even patients -- a source of both exasperation and some of the humor on the site. "This site is designed for those who are HIV positive. But it also attracts the worried well, whose hypochondriasis, obsessive-compulsive disorder or sexual guilt lead them to become hysterical over inconsequential encounters and symptoms."
Q: I had sex with a woman!!! I used a condom and she doesn't seem to be sick! I had sex with her 7 months ago! Should I worry????
A: What you're asking me is whether you should worry about having had safe sex. If the answer were yes, then everyone would have to worry every time they had sex, which would mean either that people would stop having sex and the world's population would dwindle (unlikely), or that everyone would just go around in a perpetual state of anxiety. If you're going around in a perpetual state of anxiety, then maybe you're just not ready for sex.
The weighty world of academic medicine and a Miss Manners-styled advice column might seem like strange bedfellows, but that's precisely what makes the forum so arresting. Gallant's scathing wit and breezy style percolates through the patient forum. Some of the most entertaining responses are collected in a "Favorites" archive.
The AIDS Web site, which today receives some 93,000 visits per month, also carries two publications that comprise a sort of bible for HIV practitioners: Medical Management of HIV Infection and The Hopkins HIV Report; excerpts from a Hopkins patient newsletter; case rounds; and information on AIDS conferences, clinical trials, prevention and more. But there's no doubt that Expert Q&A is its star feature.
With an archive of more than 6,000 questions dating back to 1997, the Q&A forums reveal a chronological portrait of the AIDS pandemic. "People have forgotten what it was like [in '97]," Gallant says, "when effective therapies were just beginning to be used, and everyone was afraid they were going to die. Now, people take that effectiveness for granted; they're worried about side effects and long-term toxicity."
Q: I recently read an article that said it is very unlikely that scientists will EVER find a real "cure" for HIV. This is really upsetting news, to me. It seems to mean being condemned to a lifetime of taking multiple drugs whose long-term effects are unknown.
The Q&A forums got their start in the mid-1990s when Gallant began answering some of the HIV-related questions pouring into an AOL newsroom -- and was promptly deluged with hundreds of personal e-mails. He turned pro when he began fielding questions for The Body, an online HIV/AIDS resource. Then he brought his creation to the Hopkins Web site.
At first, Gallant worried that the forum's "racy content" wouldn't past muster, but he got the go-ahead, and so far, no one's objected. Well, almost no one. When Gallant queried the JHU Press about doing a Miss Manners-style book compiling questions and answers, he was asked to replace the forum's earthy language with proper medical terminology. That request he promptly rejected. "You can't talk about AIDS without talking about sex," Gallant says, "and you have to use the language everyone understands."
- Anne Bennett Swingle
Visit Expert Q&A at: www.hopkinsaids.org/ask.html.
It's a practice almost as old as American medicine itself -- -the venerable doctors' rounds. Every day, eager, white-coated medical students and residents scurry along from bed to bed visiting hospitalized patients to check their health status and talk over what they find. Now a group of researchers here is challenging the very methods those doctors use as they perform this hallowed ritual.
"It's a great way to teach medicine, but it doesn't seem to be in the best interest of the patient," says Peter Pronovost, M.D., Ph.D., associate professor of anesthesiology and critical care medicine and co-author of a study published in the recent issue of the Journal of Critical Care Medicine. After listening to discussions between doctors and patients, Pronovost says the research team discovered that rounds were "more provider-focused than patient-centered." Doctors typically focused on the physiology, pharmacology and so-called available evidence for each patient, not on creating a set of objectives for the person's recovery.
What works better, the researchers found, is to focus on step-by-step goals with a list of short-term aims for each patient and then time these directly to a daily care plan. The team tested its theory between July 2001 and June 2002 on 112 patients in Hopkins Hospital's surgical oncology intensive care unit. All year long, a group of staff physicians, post-doctoral fellows, anesthesia and surgery residents, nurses and a pharmacist spent about 25 minutes at each patient's bedside and created a plan of care for the day. When rounds were over, they made certain the primary nurse and resident-on-call understood the recovery goals for that day and what needed to happen to get the patient to the next level.
To evaluate the success of the new method, at the end of the year, the researchers checked how long it had taken for each of the patients they saw to be well enough to be moved out of the ICU. They discovered that during the year-long study the length-of-stay in the ICU had decreased by half. Shorter hospital stays, Pronovost points out, are generally an indication of more-satisfied patients and fewer medical errors.
- John Lazarou