Medical Experts Unite to Remedy Online Confusion
Citing growing problems created by the explosion of health care information available on the Internet without context, medical experts have banded together to support a potential solution. This coalition of experts has put their weight behind YourDoctor.com, which uses a unique and innovative technology that pulls all of healthcare into context through a graphical interface called the HealthMap.
"The superficial, incomplete and often out of context information presented on the majority of current healthcare Internet sites makes it very difficult for both patients and doctors," said Murray Brennan, M.D., professor and chairman of surgical oncology at Memorial Sloan Kettering Cancer Center in New York City, and a YourDoctor.com cancer editor. "Bringing together the best doctors from around the country is the only way to tackle this huge problem. We are pleased to be a part of this effort."
Doctors participating in YourDoctor.com represent virtually all of the medical schools and teaching hospitals in the United States, and include a number of international experts. There are more than 4,000 physicians involved in this effort and the number is expected to climb to 8,000 by the end of 2000, according to a press release from YourDoctor.com.
Physicians disagree on the value of the Internet. "No current healthcare site places the user in the right time Frame of the disease, so the information given on those sites is without context and patients are unable to determine what is right for them and what is not," said Gary Hankins, M.D., professor and vice chairman of Obstetrics and Gynecology at University of Texas-Galveston, and a senior editor for YourDoctor.com. "This is bad for patients and is making the practice of medicine frustrating. Getting other experts from around the country has been easy, because we see a desperate need to address this problem."
"Doctors have watched from the sidelines as this entire industry has developed, and we are now seeing the results of our lack of participation," said Louis Caplan, M.D., professor and Chief of Neurology at Beth Israel Hospital in Boston and Harvard Medical School, and a neurology editor for YourDoctor.com. "Either the information is superficial or extremely detailed. The most important lesson learned from the first generation of healthcare sites is that the information must be delivered to the right audience or it causes a problem. It makes a visit to the doctor less productive and more frustrating. It is the primary motivation for experts getting involved in this project."
"There are several Web sites which have a few doctors participating," said Robert Parry, M.D., a pediatric surgeon on staff at Children's Hospital in Los Angeles, prior to joining YourDoctor.com as its chief medical officer. "We involve hundreds of leading experts within every discrete field of medicine to help make the HealthMaps of their specialty and to provide support for the online communities which are developed." The organization of experts at YourDoctor.com began as a small group of doctors who decided to bring together others from whom they would seek advice if a loved one of theirs became ill. This resulted in the development of a collection of experts who have the respect of their peers, are currently or have been the leaders of nearly every medical society, are chairpersons or directors at leading medical schools, and who combine for well over 200,000 publications.
"The only way for the Internet to have a positive impact on people's lives is for the doctors to be intimately involved in the day-to-day concerns of the site, since they are the ones who truly understand how all of the pieces fit together," said James Norman, M.D., chairman and founder of YourDoctor.com, professor of Surgery and Internal Medicine, and director of Endocrine Surgery at the University of South Florida.
The key to our success will be two-fold: our HealthMap graphical navigation system and our thousands of supporting experts," said Dr. Norman.
Update, August/September 2000, Scott Helm, Editor
How Much is Enough?
This writer has always maintained that some of the most dangerous medicine in the world is practiced at "support group" meetings. For it is in that setting that the "I heard" and the "did you know" or even the "try this" non-documented but believably presented information is exchanged. Fortunately, most of it is not acted upon until it is at least dragged in front of a clinical transplant staffer. On the other hand, heart and lung transplant recipients being what they are - terminally ill - in the desperation of beating the odds, harmful misadventures can develop on the basis of very partial, preliminary, or simply wrong information.
As the previous article points out the Internet has done nothing harmful in and of itself, but there is no control at all over who is gathering the bits and pieces of information as they go "surfing" for solutions to their problems or even "miracle" cures.
For instance, and this is as dangerous as the Net itself, it has been apparently shown that cyclosporine in either lower doses, or bolus type shock intermittent doses can mitigate any number of previously unsuccessfully treated diseases. It's not hard to imagine some "elevator not to the top floor" coming up with the idea of sharing "just a tad" of their cyclosporine with an arthritic wife, or chronic skin disease suffering father. Obviously, at best serious kidney damage could result, or worse a major medical catastrophe.
I have been concerned for a number of years that UpBeat may perhaps be doing a disservice to recipients by lending a credence to the articles that appear here that is totally unfounded and certainly undeserved.
There seems to be a question of how much information do we really need?
Even though we are dealing with our own existence we don't have the proper background to support the information that's out there. Simple example: Almost none of us even know the dosage difference in grams, milligrams, or milliliters, or the size of a wound measured metrically. More complex: The recent "International Society for Heart and Lung Transplant Registry Report of transplantation", which is published annually, has reached a point where it is essentially unreadable to a layman and could be dangerously misinterpreted without the knowledge of the statistical methods used to reach conclusions. Most complex "Interatrial Conduction of Atrial Tachycardia in Heart Transplant Recipients: Potential Pathophysiology."
Let's take the value of information another way. Do you seek even a small amount of information on your $23,000 automobile? It's complex, might be better to learn how it works. Better yet, we all have a full manual of instructions for our VCR. I still can't set the clock, much less make it turn the TV on and record at a specific time, can you? Have you read your Windows '98 documentation? See there's a whole bunch of information you either didn't need, can't use anyway, or are ignoring.
Technical information doesn't create experts. It is only a tool to be used by experts in the proper setting and must be treated as such.
By Tx Don S. Marshall, Editor & Janitor UpBeat
Saving the Heart Can Sometimes Mean Losing the Memory
By Sandeep Jauhar
James Haneman believes his surgeons sacrificed his mind in saving his heart.
In 1989, Mr. Haneman had a law practice in New Orleans, earned a six-figure salary and sat on several important state and federal law committees. Then he had a heart attack and surgery to bypass blockages in his coronary arteries.
He came through the surgery fine physically. But since then, Mr. Haneman says, he has had memory problems and even simple tasks, like writing letters, elude him. His doctors told him the problems would be only temporary. "They told me not to make any important decisions for a month," he recalled.
But when he returned to work, he recalled, "I could study something and not be ready to say it the next day, particularly in the order it had to be presented." The doctors told him to wait another month.
Frustrated, he turned to self-help tapes and books on memory enhancement. He tried computer exercises and reading non-fiction. But his problems persisted and after two years he quit practicing law. "When you can't remember anything, you can't practice law," he said. "I was doing my clients an injustice."
Though Mr. Haneman is an extreme example, heart surgeons say he is not alone. Doctors say evidence is mounting that a small but significant number of bypass patients suffer some degree of cognitive impairment, like memory and attention defcits and language problems, particularly if they spend time on heart-lung machines.
These patients are apart from the approximately 2 percent to 5 of patients who suffer strokes after bypass surgery, a procedure 600,000 Americans undergo each year.
It is unknown how many patients suffer the less catastrophic, but nevertheless debilitating, cognitive problems. Depending on how the problem is defined, studies suggest that anywhere from 10 percent to 50 percent or more of bypass patients do poorly on tests of memory, language and spatial orientation six months after surgery. These changes can persist years after surgery, and in many cases are probably irreversible.
A significant number of these patients will have recognizable problems in their day-to-day lives. It is estimated that the total cost of these problems exceeds $1 billion a year.
In part, experts say, the incidence of the problem is increasing because older, sicker patients are now being offered bypass operations. In the early 1980's, the average age of bypass patients was about 58, according to Dr. John Murkin, director of cardiac anesthesia at the University of Western Ontario in Canada. Now, it is 66.
"As we operate on older and older patients, because of the accumulated burden of disease in their blood vessels, we're seeing more neurological injury," Dr. Murkin said. In part, experts say, the cognitive impairment itself is the result of stroke, particularly "ministrokes" that patients can suffer when fatty material is dislodged from the aorta, the body's largest blood vessel, when it is clamped in order to shunt blood into a heart-lung machine.
The acts of clamping and unclamping can break the hardened fat coating the wall of the aorta into tiny pieces, like pliers squeezing an eggshell, which can then lodge in the brain.
"On video it looks like a snowstorm," said Denise Barbut, former director of stroke research at the Weill Medical College of Cornell University, who has used ultrasound to study the flow of these particles during bypass surgery. Experts say there are probably several other contributing factors, including tiny blood clots or bubbles from the heart-lung machine, inadequate blood flow to the brain during surgery and brain inflammation.
Whatever the cause, the syndrome is so pervasive that heart surgeons and cardiologists have coined a term for it: pump head. Some even go so far as to encourage some patients to seek other remedies for their heart disease.
"A high-functioning 75-year-old who I might normally be very aggressive about bypassing, I might try to manage medically or with angioplasty," said Dr. Richard Fuchs, a cardiologist in private practice in Manhattan, referring to powerful heart drugs and balloon procedures that open up blocked arteries without surgery. Other experts say they save this advice for patients who already have some sort of cognitive impairment.
Some experts say some of the cognitive problems after bypass surgery may actually result from depression, which for reasons that are unclear develops in many patients after the surgery. In any event, the cognitive impairment occurs in a minority of patients. "I have a fairly large cadre of patients who tell me they've never been better," said Dr. Jeffrey Gold, chairman of cardiothoracic surgery at the Albert Einstein College of Medicine and Montefiore Medical Center in the Bronx. "Many will tell you they're much more creative and prolific, that they haven't suffered any cognitive decline whatsoever."
Dr. Gold points out that some research shows that knee-replacement surgery can result in similar cognitive impairment and that bypass surgery done off a heart-lung pump results in stroke rates similar to those when conventional bypass surgery is done on pump. "I think pump head is a misnomer," he said. "The implication is that the cognitive decline is due to the pump, and that if you avoid it you're safe, but that doesn't appear to be the case."
When patients have cognitive changes after surgery, the effects are often subtle. They may think a little slower or feel "clouded." They may forget appointments or where they put things. They may become irritable or depressed. "The defects can be subtle and patients can often compensate for them," said Dr. Mehmet Oz, a professor of cardiothoracic surgery at Columbia-Presbyterian Medical Center in Manhattan. "On the other hand, if their functioning is already low, the results can be debilitating." Sometimes the changes can be a bit bizarre. "Suddenly the type of food or the type of restaurant they like changes," said Dr. Mani Subramanian, chief of cardiothoracic surgery at Lenox Hill Hospital in Manhattan.
Dr. Gold of Montefiore said one of his patients recently had called after bypass surgery to say he was feeling well and was back at work. "But he told me, `I can't stand the taste of lettuce anymore.' He used to eat a lot of salad, but that changed after surgery."
For Paul Wechsler, a 60-year-old former architect who lives in New Jersey, the changes were not subtle or bizarre, just painful. "The bypass surgery knocked out a lot of my memory," he said from his home, where he spends most of his days. "It changed my whole life around mentally."
The memory problems started immediately after his bypass surgery in 1996. He told his doctor about them, and was assured they would be temporary. But in the following months he did not improve. He found himself asking his fiancée to calculate the tip at restaurants. "I couldn't understand jokes that she would tell me," he said. "Even now, she'll say something to me and I'll say, `What do you mean by that?' " He had been running his own construction business and working as a salesman before the surgery, but he had to quit. "I used to enjoy the challenge of building things up from nothing," he said, but it gave him fits. Though he believes his mental functioning may now be starting to improve, he remains on permanent disability. "I still have to read a paragraph three times to get the meaning," he said.
To avoid the potentially deleterious effects of heart-lung machines, surgeons have developed off-pump, or beating-heart, bypass surgery. Here, surgeons insert a clamp through a small incision in the chest wall to immobilize a small section of the beating heart. A new vessel is then stitched, while the heart continues to pump blood to the brain and the rest of the body. Aortic clamping and a heart-lung machine can be avoided. The surgery is relatively new, however, and most bypass surgery is still done on pump. But studies of whether off-pump surgery protects against pump head have not produced clear results. Dr. Oz of Columbia is now conducting a study, the largest to date, in which 600 bypass patients will be randomly treated with on- or off-pump surgery and studied for cognitive decline.
"If we're going to make decisions affecting the lives of 600,000 people a year, we don't want to base that on the results of a small trial," he said.
Other treatments for pump head are being developed. Embolex, a Northern California company founded by Dr. Barbut, the neurologist, has designed a filter to catch debris from the aorta during surgery. Another company, Cardeon, has developed a balloon device that opens up inside the aorta during surgery, shutting off blood flow and obviating the need for a clamp. Some experts believe that more attention is being paid to pump head today because more catastrophic results, like strokes and deaths, have sharply decreased as anesthesia and surgical techniques have improved. The mortality rate for bypass surgery is now less than 1 percent.
"The nice thing is that today we can worry about the subtle changes," said Dr. Mark Newman, chairman of anesthesiology at Duke University Medical Center.
Dr. Gold of Montefiore said the decision about whether to perform bypass surgery on or off pump can be made in the operating room. He recently had a 52-year-old patient who expressed concern before surgery about intellectual decline. After opening up the patient's chest in the operating room and discovering by ultrasound that his aorta was lined with a large amount of plaque, Dr. Gold decided to do the bypass surgery off pump.
"The most important thing, in my humble opinion, is to be flexible," Dr. Gold said. "The goal is to fit to the patient's needs, not artificially choose a surgical modality."
He added that for the majority of patients, on-pump surgery the most studied was their best option.
Ed. Note: How well I remember the anesthesiologist being one of the first at my conscious bedside after transplant with the question: "Can you tell me what we were talking about while I was getting you ready in the operating room?" I was able to, and he seemed pleased.
Sicker Patients Are Surviving Heart Transplantation
NEW YORK (Reuters Health 10/2/00) Advances in the management of heart transplant patients have allowed sicker patients to undergo transplant without lowering overall survival rates.
In fact, "the survival rate increased during every year during the study period," report Dr. Ranjit John and colleagues from Columbia University College of Physicians and Surgeons, in New York. They published their findings in the September issue of the journal Annals of Surgery.
The investigators reviewed data on 536 patients who received heart transplants at their center between 1993 and 1999.
Compared with patients undergoing heart transplant a decade ago, "the patient population now...is significantly different," the researchers explain. More of these patients have required mechanical circulatory support, have had previous heart transplants, or have pulmonary hypertension, a type of high blood pressure.
Yet the investigators found that the only risk factors adversely affecting patient survival were the age of the donor,donorrecipient gender mismatching, and the year of the transplant.
"For every 2-year period during this era," the researchers report, "the odds of survival...increased by 1.2 times; for every 3-year period, the odds improved by 1.6 times."
The investigators point out that their current population `'includes patients who would have been refused transplantation in an earlier era.''
The survival rates suggest that advances in transplant technology appear to compensate for the fact that patients are increasingly sicker at the time they receive their transplants, the authors conclude.
SOURCE: Annals of Surgery 2000;232:302-311.
Contributed by: Tx Jim Gleason, Collegeville, PA
Even Low Steroid Doses Can Be Trouble
By Julia McNamee Neenan HealthScout Reporter
Oct. 23 (HealthScout) - Daily low doses of a commonly prescribed oral steroid, prednisone, can double your risk of hip fractures and cataracts, scientists reported today.
Researchers have long known of the link between higher doses of oral steroids and dangerous side effects, but the new study shows the potential for side effects at much lower doses, says Dr. John B. Wong, an associate professor of medicine at Tufts- New England Medical Center in Boston.
The problem is that prednisone and other steroid medications are critical in managing diseases in which inflammation plays a painful role, Wong says.
"Low-dose steroids are used commonly in a number of diseases, including patients with asthma or rheumatoid arthritis," he says. Prednisone also is used to treat Crohn's disease and other inflammatory bowel disorders. Wong stresses that people who are taking this medicine should not stop doing so based just on these new findings.
"If patients are worried about the longterm side effects, I'd encourage them to discuss it with their doctors," Wong says. "The benefits of the medicine might clearly outweigh the risks."
The study tracked the progress of 4,993 people with rheumatoid arthritisfor 15 years, monitoring their medications and subsequent health.
Those who'd taken 5 milligrams to 10 milligrams of prednisone a day were twice as likely to break their hips and 21/2 times as likely to develop cataracts as those who had taken no prednisone, the study says. And those who'd taken the steroid at these low doses for three or more years were 3.2 times as likely to develop cataracts as those who had not taken prednisone, it says. Findings are being presented today in San Francisco at a meeting of the American College of Chest Physicians.
People with rheumatoid arthritis take prednisone orally, while people with asthma usually inhale the medication. But Wong says other tests have shown that the body absorbs the two forms of medicine similarly. Prednisone is so commonly used that more than half of the participants in the study used the medication at one point or another, Wong says.
However, Dr. Jefrey Lieberman, director of the Arthritis Care Center in Atlanta, says the drug is used less frequently today than it was when Wong's study started in 1982. Lieberman estimates that just 10 percent of his patients use the drug at any one time.
The side effects of prednisone at higher doses have been known for some time, he says. So, while the medication was first seen as a miracle cure, today it's prescribed with more caution, Lieberman says.
About 2.1 million people in the United States are diagnosed with rheumatoid arthritis.
Prednisone doesn't affect the progress of the disease, "but nothing works better to reduce inflammation quickly than prednisone," Lieberman says. Doctors constantly are attempting to determine the "magic dose," or how many milligrams of the medication best help someone without bringing on side effects, he says.
Attempts to reach Schein Pharmaceuticals, which manufactures Prednisone, were unsuccessful.
What to Do
Lieberman says other oral steroids could be presumed to affect your hips and eyes as prednisone did in this study. These steroids, called corticosteroids, differ from anabolic steroids, which bodybuilders sometimes use to pack on muscle power.
If you and your doctor determine that prednisone or another oral steroid is useful for your health, despite its side effects, your doctor will want to monitor you closely, Wong says. In keeping an eye on the health of your bones, for example, and to prevent osteoporosis, your doctor will want to make sure you have enough vitamin D and calcium in your diet. If osteoporosis begins to develop, your doctor may prescribe hormone replacement therapy or another medication to beef up your bones.
Similarly, to protect against cataract formation, your doctor may recommend you shield your eyes from ultraviolet light exposure as much as possible, usually by wearing sunglasses.
SOURCES: Interviews with John B. Wong, M.D., associate professor of medicine and chief, division of clinical decisionmaking, department of medicine, Tufts-New England Medical Center, Boston; Jefrey Lieberman, M.D., medical director, Arthritis Care Center, Atlanta
Contributed by: Tx George Kearns, Punta Gorda, FL
Failed Pittsburgh Bid Encourages A Better System
Pittsburgh Post-Gazette - Editorial: Fair outcome on organs
(10/3/00) Despite spirited competition from a Pittsburgh bidder, the federal government has renewed its contract with the United Network for Organ Sharing.
After two years of pitched battles between the Department of Health and Human Services and UNOS over the best method for organ distribution, it seemed a good time to launch a challenge to the more than decade-long hold UNOS has had on procurement and distribution of organs for transplantation.
But while the bid by Pittsburgh's Center for Support of the Transplant Community failed, its mere existence put pressure on UNOS to accept modification of its distribution system.
The new contract specifically calls for UNOS to accept rules requiring organs to be offered to the sickest patients first rather than to those in the geographic region where the donation was made. UNOS has long favored a geographic distribution system, resulting in extreme disparities in waiting times that disadvantage patients at large centers like the one at UPMC.
The Pittsburgh bidder, which was created by CONSAD Research Corp. and Management Science Associates Inc., did not promote itself as a champion of a sickest- first distribution policy, though it was widely perceived that way. But just by offering the federal government a real alternative, the Pittsburgh bid may have been the leverage needed to get UNOS to accept the fairer and more efficient rules promulgated by the Department of Health and Human Services.
While UNOS kept the $52 million three-year contract to maintain the waiting list and to operate the computer system that matches patients with available organs, the government split off the assessment functions and awarded that piece to an organization in Michigan. The University Renal Research and Education Association in Ann Arbor will keep the scientific registry that tracks the health of organ recipients and assesses how changes in the distribution policy affect them.
That is a good move, since self-policing is seldom an effective or reliable system.
The new contract should resolve the years of dispute and turmoil over the distribution of this very scarce resource. And it should lead to fewer people dying while waiting for organs that go instead to less ill patients in closer proximity to the donor.
But Congress has intervened in this matter before to protect the geographical distribution system, which favors smaller transplant centers scattered around the country. And it is not outside the realm of possibility that it would do so again.
We hope not. After years of hearings and debates and studies and recommendations, the federal government has come up with a set of rules that makes sense in managing this precious resource. After an open and competitive bidding process, the winner has agreed to those terms.
Congress should accept the outcome and give this saner and fairer policy a chance.
Contributed by: Tx Dave Cannavo, Boston
HHS Announces Creation of Organ Transplantation Advisory Committee; Will Review Proposed Changes in Allocation Policies
WASHINGTON, Sept. 27 /U.S. Newswire/ - HHS Secretary Donna E. Shalala today announced creation of an Advisory Committee on Organ Transplantation to strengthen scientific, medical and public involvement in the department's oversight of transplantation policy. In particular, the new committee will provide independent review and advice to HHS concerning revised organ allocation policies being developed by the nation's transplantation network.
The new committee, to be formed this fall, was recommended by the Institute of Medicine (IOM) in a report mandated by Congress in 1998.
"In its report to Congress, the Institute of Medicine endorsed the role of HHS in ensuring the fairness and effectiveness of the nation's organ transplantation system," Secretary Shalala said. "At the same time, the IOM recommended creation of a new entity to provide the department with top- notch, science-based counsel on transplantation policy. This new advisory committee will fill that need."
National transplantation policies are developed by the Organ Procurement and Transplantation Network (OPTN) for approval by HHS. Under regulations that took effect earlier this year, the OPTN policies must be designed to meet performance standards to ensure that the system operates in the best interest of patients. The performance standards are included in the HHS regulation and are also consistent with IOM recommendations. In particular, the IOM called for sharing livers for transplantation across broader population areas than at present. The IOM concluded that broader sharing will help ensure that livers are provided to patients with greatest medical need, as determined by transplant physicians.
"The IOM data support our finding that more lives can be saved through broader sharing of organs, with particular focus on livers," Shalala said. "Under the final regulation, the OPTN has been developing proposals for improving liver allocation policies. Our new advisory committee needs to be in place to provide its independent assessment of these proposals."
The IOM report focused on liver transplantation policies because human livers are in such short supply, and because liver allocation policy has been the subject of debate for a number of years. In its regulation, which took effect March 16, HHS made it clear that organ transplantation policies will continue, as previously, to be developed by the transplant community through the OPTN. HHS review and approval is needed to make these policies binding on OPTN members.
This summer, the OPTN has developed proposals for better characterizing the medical condition of patients waiting for a liver transplant. These proposals are currently being made available by the OPTN for public comment. The new advisory committee is to be in place in time to review OPTN proposals when they are submitted to HHS.
In addition to its review of OPTN- developed policies, the advisory committee will examine transplantation data needs, as well as other transplantation issues, including scientific, public health, ethical, coverage and financing issues. The committee will include up to 20 members. Nominations for prospective members must be made within 30 days of publication of the Federal Register notice announcing the committee.
Earlier this month, HHS reported an increase in organ donation for the first half of 2000, and HHS this month also released a new guide to help in the training of hospital staff and others who talk with families of potential organ donors and request organ donation.
"All these steps represent progress toward an organ transplantation system that will serve patients better," Shalala said. "They are signs that we are on a path toward new progress in organ donation and transplantation."
Contributed by: Tx Dave Cannavo
UNOS Transplant Fight
By LAURA MECKLER - AP Writer
WASHINGTON (AP 10/17/00) - Negotiations over organ transplant policy between the House and Senate have fallen apart, making it virtually certain Congress will adjourn without approving new rules governing the system.
At issue is who should have final say over transplant policy - the government or the private contractor that runs the transplant system.
It has been a bitter fight since early 1998, when the Clinton administration issued regulations directing that more donated organs go to the sickest patients.
The administration argued that the current system, based largely on geography, meant that certain patients were dying because of where they live. But some hospitals and states feared that under new rules, they would lose organs to places where more patients are waiting or where fewer organs are donated.
Congress has been working to resolve the argument, though in practice, much of the debate has been settled.
Last month, the United Network for Organ Sharing, which runs the system, signed a new contract with the Department of Health and Human Services that accedes authority to HHS on all policy matters and writes the language of the regulations into the contract.
Still, Congress had hoped to set guiding principles into law. Early this year, the House passed a bill that strips HHS of its power to set policy, giving the private contractor complete control over the way organs are distributed. It was supported by the private contractor and many transplant hospitals but fiercely opposed by the administration, some patient groups and other hospitals.
The Senate, led by Sens. Bill Frist, R-Tenn., and Edward Kennedy, D-Mass., crafted a compromise that has widespread support and attempts to balance power between HHS and the private contractor. Under the Senate bill, a panel of medical experts would have final say over policy, based on legal principles outlined in the legislation.
For the last two weeks, negotiators from each chamber have tried to find a compromise, but the Senate side was unwilling to change the substance of its measure.
"They asked us to undo virtually every compromise agreement we had come to," said Cybele Bjorklund, a Kennedy health aide who took part in the negotiations. "We didn't have a lot of room to move. This had been a heroic effort to get everyone on the same page."
She said that many of those who supported the administration had no motive to compromise further since the contract has already been signed and, after several congressionally imposed delays, the regulations have already taken effect.
She said that she and other Senate negotiators offered to make some minor changes, but they would not overhaul the dispute resolution system and other cornerstones of the bill, as the House team demanded.
For its part, the House was disappointed with the Senate's "take it or leave it" attitude, said Pete Sheffield, a spokesman for Rep. Tom Bliley, R-Va., chairman of the House Commerce Committee and one of the administration's fiercest opponents on this issue.
"Congress is still here. Why not continue to work on differences that exist?" Sheffield said. "To just say Take it or leave it' and close the door doesn't do anyone any good."
Hospital Introduces Computers
By WILLIAM McCALL - AP Writer
PORTLAND, Ore. (AP 9/22/00) - Scott Banke is heading for a month of isolation after he receives a bone marrow transplant, and at any other hospital he would likely be cut off from the outside world.
But at Doernbercher Children's Hospital, the sixth-grader, who has bone cancer, will be able to keep in touch with family and friends using a state-of-the-art computer installed in his and other patient rooms in the pediatric oncology ward.
"Yeah, it's pretty cool," Scott said, using a wireless mouse and keyboard to work his way around the Internet on a crisp flat panel screen that swivels across his hospital bed.
Like many of the young patients at the state's medical research hospital, drugs and chemotherapy will a toll on 11-year-old Scott.
The least the hospital can do is keep him and other youngsters from being bored, Dr. Gary Jones said.
"I once had a mother say to me that being in the hospital in a child oncology ward is kind of like your child has gone to prison - with his mother," the pediatrician said. "The biggest problem is boredom."
During its recent construction, the hospital - part of Oregon Health Sciences University - was extensively wired for computers to expand the network connecting doctors and staff.
The hospital joined Intel Corp., which is based in Silicon Valley but has its largest division in Oregon, to install the computers in the 16 rooms of the pediatric oncology ward.
"It's just a tremendous help," said Bob Banke, Scott's father. "It gives him instant access to whatever interests him. It keeps him busy and curious, and that's great."
Families also are encouraged to use the computers to keep in touch with their businesses and look up medical information in between doctor visits. Some simply to play games with their children.
"Not only is the patient isolated in a room, but one or two family members are also there with them," Jones said.
"I'd guess that at least a third, up to a half, of those computers are being used all the time." Jones gives much of the credit to Intel, whose workers volunteered their time to build the computer network after learning about plans for wiring the new hospital building.
The goal was to design a system that would be easy to use and out of the way of doctors and nurses.
"We wanted something that wasn't cluttered," said Tim Sweeney, director of technical marketing for Intel's New Business Group in suburban Hillsboro. "It had to be as clean and unobtrusive as possible."
The computers' slim, lightweight monitors are on swing arms. The wireless keyboards and computer mice can be used anywhere in the room.
A small Intel two-way video camera keeps children in touch with other young patients, hospital staff, and even family and friends outside the hospital.
Sweeney said the system is experimental and that it can't be done for everybody because of the large volunteer effort.
Jones called it a model for other hospitals across the country.
"It's been so popular here, we're hoping we have a lot of copycats," he said.
Ed. Note: Wow! What a potential project for Transplant Support Groups! Either collect used computers for use by both waiting and transplanted patients. Or approach local businesses and computer firms for donations toward purchase of a uniform type of computer for the same use. The latter would make it far easier on the staff.
Novartis, Biotransplant Set Up Xenotransplant Firm
BASEL, Switzerland, (Reuters 9/26/00) - Swiss health care group Novartis AG and U.S.-based BioTransplanthave agreed to set up a new company that will research xenotransplantation, Novartis said in a statement on Tuesday.
Xenotransplantation is the controversial science of transferring cells, tissues and organs from one species to another. It has made media headlines primarily due to its attempts to use pig organs in humans amid a shortage of donor organs from other people.
Novartis said the field "has the potential to provide a lifeline for thousands of people waiting for an organ transplant, many of whom will die before an organ becomes available."
Firms Act to Patent `Human- Pig' Hybrid Cells
By Maggie Fox, Health and Science Correspondent
WASHINGTON (Reuters 10/5/00) - Two firms trying to find alternatives for organ transplants said on Thursday they had applied to patent a cloning process in which they fused human and pig cells.
The environmental group Greenpeace attacked the researchers as "Frankenstein scientists," prompting the companies to deny they were trying to create a half-human, half-pig creature.
They said they were looking for ways to advance therapeutic cloning, which would involve taking a patient's own cells and growing them in the laboratory to create a source of stem cells or "master cells," which could then be developed into tissue or organs for transplant.
Instead of waiting in line for an organ donor, thousands of patients could, in theory, get transplants taken from their own cells. They would not need the drugs now used to suppress their immune systems so their bodies do not reject the transplant.
Therapeutic cloning is in itself controversial, with opponents saying such creation of a human embryo for any reason is unethical. But scientists and others who support it say the mass of cells that would be created would not be an embryo in any real sense and would be a valuable medical tool.
"We support the prospect of human therapeutic cloning," Peter Mountford, chief executive officer of Melbourne, Australia-based Stem Cell Sciences, told Reuters in a telephone interview.
"At this point we are not pursuing the research, because there are bigger problems to solve and we think this is only one approach to providing a source of cells."
Stem Cell Sciences and Charlestown, Massachusetts-based BioTransplant Inc. (BTRN.O) confirmed they had applied to the European Patent Office for a patent on the process, but said Greenpeace had mischaracterized their work.
"The application shows that the firms have already transferred cell nuclei from human fetuses to egg cells from pigs and cultivated the resulting embryos for around a week in the laboratory," Greenpeace said in a statement.
"Society should not reward these Frankenstein scientists with patents," it added.
Mountford said his company had indeed used nuclear transfer to put a human cell nucleus into a pig's egg. Nuclear transfer, the method used to create Dolly the sheep, the first cloned adult mammal, involves scraping the nucleus out of an egg cell and replacing it with the nucleus, which contains most of the genetic material, from another cell.
SOURCE OF STEM CELLS
The process, if done correctly, re-programs the nucleus and it starts to divide as if it were a fertilized egg. In effect, it regresses back to the very first stages of life.
These cell masses could be a source of embryonic stem cells, which have the power to become any type of cell in the body at all, including nerve cells, blood cells or organ cells. Stem Cell Sciences said it had shown last month that this could be done, using mice.
In the latest case, Stem Cell Sciences, working with a team at Monash University, said it used a pig's egg cell and the nucleus from a cell taken from a cell line, or laboratory culture of cells.
After the nuclear transfer the cells divided, 4 or 5 times, to create a mass of either 16 or 32 cells. Mountford said the experiment proved that human and animal cells could be fused for the purpose of therapeutic cloning.
Another company has done similar work. In 1998, Advanced Cell Technology, based in Worcester, Massachusetts, said its scientists had fused human cells into cow eggs and let them grow as an embryo for a few days. Its aim is also to produce organs and tissues for transplant.
The reason for using cow or pig eggs is simple - they are more readily available than human eggs, which can be obtained only through difficult and painful surgery. Farm animal eggs are available at any slaughterhouse.
Julia Greenstein, chief scientific officer at BioTransplant, said her company had a long- standing arrangement to support and license Stem Cells' work.
"We are interested in Peter's work in human cell reprogramming for human therapeutic cloning," she said. "And we are interested in nuclear transfer for animal cloning."
BioTransplant is also working on genetically engineered pigs as a potential source of animal- to-human transplants, or xenotransplants. Animals containing human genes, known as chimeras, are commonly used in medical science - for instance, sheep that produce human proteins in their milk.
The U.S. government is forbidden by law to fund scientists who engage in cloning, therapeutic or otherwise, but privately funded scientists can legally do as they please.
Britain's chief scientific officer has proposed that therapeutic cloning be legalized there, but the European Parliament condemned the idea in September. Australia is debating the issue.
Italians Report Breakthrough in Stem Cell Research
By Claudia Parsons
MILAN (Reuters 9/19/00) - Scientists in Italy said on Tuesday they had shown that certain cells from the brains of adult rats can be used to generate muscular tissue, a discovery that could have implications for transplant therapy.
The discovery concerns so-called stem cells, the body's "master cells" responsible for reproducing other types of cells.
The breakthrough comes at a time of controversy in the scientific world about the use of stem cells from embryos, which have great potential for transplant therapy because at an early stage they can be used to recreate any kind of cell.
If the research on rats translates to humans, it could allow doctors to use adult stem cells, skirting the ethical dilemma about using human embryos.
Luigi Vescovi, co-director of the San Raffaele hospital's Stem Cell Research Institute in Milan, said new research had proven what he called the "transdifferentiation capacity of somatic adult stem cells."
"It's a process by which a cell from a given tissue can give rise to a cell form of a different tissue, possibly even of a different embryonic origin," he told Reuters after presenting a paper to be published in science journal Nature Neuroscience.
Previously it was thought adult stem cells did not have the same capacity to produce cells in different parts of the body.
Critics say taking cells from embryos involves destroying a human life. The embryos used in current research are usually those left over from test-tube fertility treatment.
"The main therapeutic potential...is in the power of using healthy cells from one healthy part of the body to replace cells damaged or destroyed by an illness in another part of the body," the Institute said in a statement.
"With adult stem cells there would also be the possibility of auto-transplantation, eliminating all the problems of immunological compatibility and rejection," it said.
Vescovi said the most obvious possibility for therapeutic development was in the area of muscular dystrophy.
For example, doctors could eventually use brain stem cells to generate new muscular tissue for use elsewhere in the body.
However Vescovi emphasized the research was still at a very early stage and it had not yet been proven that what held true for rats would translate to humans.
It would require several years more research before patients could expect to benefit from the discovery.
Asked whether it could eventually phase out the need for organ donors, Vescovi was cautious. "In terms of potential it could. The problem is we have not demonstrated whatsoever that this is the case. There is no proof," he said.
Heart Transplant Deaths Trigger Official Inquiry
By Jenny Booth
Electronic Telegraph, Issue 1969 10/15/00 - ALAN MILBURN, the Health Secretary, has ordered an urgent inquiry into theabnormally high death rate among heart transplant patients at St George's Hospital in south London. Eight of the 10 patients given new hearts by the surgical team at St George's since December have died from complications within 30 days of their operations. The Tooting hospital voluntarily suspended heart transplants this week when it realised that its death rate had reached 80 percent - more than five times the national average.
The team of surgeons and transplant co- ordinators at St George's carried out an internal review, but was unable to identify a common factor in the eight deaths. Some of the eight had other health problems. On Friday, after discussions, St George's was ordered by the National Specialist Commissioning Advisory Group (NSCAG), which designates hospitals in England to carry out transplant surgery, to halt lung transplants as well.
Yesterday afternoon, Mr Milburn made the concern public by authorising the Commission for Health Improvement (CHI) to conduct a wide- ranging external investigation into the deaths, looking at both the surgery and post-operative care. The CHI is an independent watchdog, set up in April to monitor the quality of health care, with powers to send hit squads into failing hospitals and replace managers. It was established after the scandal over the high death rate among babies undergoing heart surgery in Bristol, which went undetected for several years.
Mr Milburn said: "The investigation follows concerns raised by St George's Healthcare Trust regarding statistics on death rates of transplant patients which require further investigation. "The investigation will be carried out with support from the trust, the Royal College of Surgeons and NSCAG.
"The investigation will consider all aspects of transplant surgery, including patient case mix, surgical practice and post-operative care. Forty patients on St George's transplant list waiting for donor organs to become available have been contacted. Some asked to be transferred to the waiting list investigation will consider all aspects of transplant surgery, including patient case mix, surgical practice and post-operative care."
Forty patients on St George's transplant list waiting for donor organs to become available have been contacted. Some asked to be transferred to the waiting list of one of six other cardiothoracic transplant units in England, but many have remained on the St George's list. The surgeons will continue to carry out heart bypass surgery while transplants are suspended.
Professor Paul Jones, the trust's medical director, said that the hospital had acted responsibly in reporting the statistics. He expected the halt in heart transplants, of which there have been 371 since 1986, to be temporary.
"Until the beginning of this year our results were within the national average," said Prof Jones. "The national average of 15 per cent is taken across all the transplant units over a period of many years. Within that figure, all transplant units experience peaks and troughs in mortality. There was a 12-month period in 1997/8 when we had a mortality rate of zero."
Contributed by: Tx Dave Cannavo, Boston
Payton Used To Promote Organ Giving
By Nancy Armour - AP Sports Writer
CHICAGO (AP 10/31/00) - Go to a Chicago Bears home game, and you'll find a former Bear great sitting at a booth, talking with fans, and signing autographs.
Sure, athletes sign autographs all the time ... but this is different. These Bears are signing driver's licenses in a tribute to Walter Payton.
More than 565,000 people have joined the Illinois Organ/Tissue Donor Registry since February 1999, when the NFL's all-time leading rusher announced he had a rare liver disease and needed a transplant. Since his death from cancer a year ago Wednesday, 306,771 names have been added.
There are now almost five million people on the Illinois registry, the largest in the nation.
"Obviously, the announcement by Walter that he needed a transplant and then his death brought great attention for the need for organ donors," said Dave Bosch, spokesman for the Regional Organ Bank of Illinois.
"I'm always somewhat hesitant about assigning either good or bad to one event or project," Bosch added. "But ... there were a number of times families said, Yes, we heard about Walter Payton. It made my family talk about it.'"
There are 71,930 people nationwide awaiting an organ transplant. Thousands more who need a transplant don't qualify for the waiting list for various reasons, including other health problems.
After he went public with his illness, Payton became an advocate for organ donation, even as his condition deteriorated beyond the point where a new liver would have helped him. He drew attention to the cause, as other afflicted celebrities have raised public awareness and money.
Michael J. Fox lobbies Congress in the effort to find a cure for Parkinson's disease. Christopher Reeve's Paralysis Foundation supports spinal- cord injury research. Doug Flutie raises money for autism, which his son has.
"I don't think it's wrong to say we capitalized on Payton's situation. I think he would have wanted to capitalize on that," said Sue Altman, director of the secretary of state's Organ Donor Program. "It's kind of like when Magic Johnson (tested HIV positive)."
In November 1999, the month Payton died, 44.1 percent of the people renewing or getting their license joined the Illinois donor registry, a 2.1 percent increase from the previous month. In December, the number jumped to 45.2 percent.
"Those, for us, are fairly dramatic numbers," Altman said. "We are certain that in those months, that increase is partly attributable to Walter Payton."
Though it's been a year since his death, Payton's name is still being used. His widow, Connie Payton, filmed a commercial with Secretary of State Jesse White urging people to be organ donors.
The team also has donated $275,000 to organ-donor and cancer research in Payton's name to date.
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