Science Feature - July 2008
Tex Med. 2008;104(7):37-40.
By Ken Ortolon
As Texas Medical Association president a decade ago, Dallas orthopedic surgeon Phil H. Berry, MD, launched a statewide campaign to promote organ donation.
Live & Then Give was a major success in raising awareness among Texans of the need for organ donation and getting physicians involved in talking with their patients about donation. The program was so successful the American Medical Association picked it up and expanded it nationally.
But the need for transplantable organs has not declined in the years since Live & Then Give was launched.
"When I first started talking about organ donation, there were 15,000 people on the waiting list," said Dr. Berry, who himself received a liver transplant in 1986. "Now that number is around 95,000 to 97,000, so we aren't solving the problem yet."
That prompted Dr. Berry to lend his energy and support to another organ donation awareness campaign tested last spring in Texas. He hopes Doctors for Donation - which has the weight of the federal government behind it - will dent the ever-growing transplant waiting list.
A Trusted Source
The U.S. Health Resources and Services Administration (HRSA), in coordination with the United Network for Organ Sharing (UNOS), the Dallas-based Southwest Transplant Alliance , and the Dallas and El Paso county medical societies, launched Doctors for Donation in 2007.
TMA and all three of the state's organ procurement organizations endorsed the one-year pilot program. Based in part on Live & Then Give, it asks primary care physicians to take the lead in educating their patients about donation. HRSA officials hope to begin rolling out the program nationally before the end of this year.
James Burdick, MD, director of the HRSA Division of Transplantation, says the agency recruited primary care physicians because people view their family doctor, pediatrician, or other primary care specialist as a trusted source of medical information.
"One of the factors that's very important is the fact that an awful lot of what people know about and think about medicine, they get from their primary care doctor or their family doctor," said Dr. Burdick, a former transplant surgeon.
With that in mind, HRSA designed materials that primary care physicians can place in their offices to encourage patients to ask about donation or to help physicians bring up the topic. The materials allow the doctor to have either a brief discussion with the patient about donation or a more extended conversation if the patient wishes.
The idea, Dr. Burdick says, is "to have materials available that are easy for doctors to use to move the discussion along so they don't have to take a lot of time with it and still really provide that educational dimension."
The kits include posters physicians can display in their waiting rooms, along with cards answering questions they may receive about donation. The card includes links or telephone numbers for patients to get more information, including how to contact the Texas Organ Donor Registry.
Also included is a card with tips on how physicians can promote organ donation in their offices and approach families about donating a loved one's organs.
Finally, the kit includes a notepad with preprinted information on how to contact the Glenda Dawson Donate Life -Texas Registry . Physicians can tear off a sheet and hand it to any patient interested in signing as a donor.
All materials are available in both English and Spanish.
HRSA officials say they tested Doctors for Donation in Texas because of Texas physicians' experience with Live & Then Give. In fact, Pam Silvestri, public affairs director for the Southwest Transplant Alliance, urged HRSA to look at the Live & Then Give program when she heard the agency was planning its own campaign.
"They actually took a lot of the Live & Then Give program and turned it into Doctors for Donation," Ms. Silvestri continued. "And, because Texas had already had some success with a similar program, they decided to pilot this one in Texas."
HRSA also enlisted Dr. Berry as a consultant on the program. "He will be a coach for us as we continue to move along in this project," said Mary Ganikos, PhD, chief of the Public and Professional Education Branch of HRSA's transplantation division.
HRSA chose Dallas and El Paso counties and enlisted the two county medical societies to help recruit physicians to participate.
Patsy Slaughter, executive director of the El Paso County Medical Society, says Ms. Silvestri came to one of the society's meetings to explain the program to physicians. The society also sent letters and called a number of physicians seeking participants.
Ultimately, 145 Dallas physicians and 68 El Paso doctors agreed to participate. Ms. Silvestri says Southwest Transplant Alliance recruited a number of transplant recipients in both communities to serve as volunteers to deliver program materials to the participating physicians. That way, she says, the physicians got "a chance to meet someone in their community who's had a transplant and hopefully be moved by their story to really take this program to heart."
El Paso family physician Azalia Martinez, MD, needed little encouragement to sign up.
"I feel there is a need for more awareness," said Dr. Martinez, who also does emergency medicine, where she says donation comes up frequently. "I'm a donor. I feel like if something untoward happens to me that there's no sense in a good set of kidneys and the heart and some lungs and the liver going to waste. I'd like someone to benefit from my death."
Taking the Next Step
Dr. Ganikos says HRSA is extremely pleased with the number of physicians who agreed to participate in the pilot project, even though some of the participating physicians were more active in the project than others. Officials don't yet have a way to determine how many patients may have signed up to be organ donors.
"I think we had varying degrees of success, and we've learned a lot from the pilot," she said. "All of the physicians we worked with were people who responded saying they wanted to participate. But when we got on with the program and we called them to get their involvement, some were more eager to participate than others."
Dr. Ganikos says project materials are being redesigned to take into account what they learned during the pilot. For example, they changed some references from "physician" to "health care professional" because they found it often is a nurse or physician assistant in the doctor's office who speaks with patients about organ donation. In addition, they incorporated some healthy living suggestions into a card with organ donor information as a way to help patients avoid the need for a transplant. Once those materials are approved, they will expand the project, more than likely to other areas of Texas and to HRSA-funded community health centers across the country.
She says the community centers are targeted because they treat a high percentage of minority patients.
"There's a need for greater minority donation," she said. "Minorities donate in proportion to their proportion of the population, but their need for transplants is much bigger, particularly kidney transplants."
After the rollout with the community health centers, HRSA hopes to expand the program to primary care physician offices across the country.
Dr. Martinez says she can't say whether her discussions with patients have resulted in any of them signing up as organ donors, but she's anxious to continue as a participant.
"There's just more of a need to expose the general public to the need for organ donation," she said. "I do bring it up and I probably will start bringing it up more often now because education starts with the family physician."
Dr. Berry, a tireless advocate for organ donation now for more than 20 years, says he believes this program can make a difference if enough primary care doctors will just make the commitment to talk with their patients about organ donation.
"People are becoming more aware, but I suspect the numbers who are committed organ donors still hover around 50 to 60 percent, and that's just not enough."
Physicians wanting more information about Doctors for Donation should contact Joy Demas at HRSA at (301) 443-7050 or at email@example.com .
Ken Ortolon can be reached by telephone at (800) 880-1300, ext. 1392, or (512) 370-1392; by fax at (512) 370-1629; or by e-mail at Ken Ortolon .
State Web Site Makes Donor Registration Easy
The Texas Department of State Health Services (DSHS) has an online organ donor registry to make it easier for Texans to register as organ, tissue, and eye donors. The Glenda Dawson Donate Life - Texas Registry has information about organ donation and instructions for registering online.
Before the registry, Texas did not have an official state list of people who wanted to consent to being donors. Former Texas Medical Association President Phil H. Berry, MD, of Dallas, hopes the donor registry will clarify a loved one's organ donation wishes for family members.
"In the past, a patient may have said that he wants to be an organ donor but then he wasn't there, of course, when that situation arose and some of the family members would say, 'No, we don't want to do that.' And that's unfair to the person who made that commitment before his death," Dr. Berry said. "Now, signing up online and being on a computer registry should eliminate a lot of those issues."
DSHS officials also say the list can help ensure would-be donors' wishes are carried out after they die. They also say the Web site makes it easy for people to get facts about organ donation and decide if registering as a donor is right for them.
The Web-based registry helps streamline the donation process at a time when medical decisions and procedures must happen quickly.
Registration online takes less than five minutes. Donor information is protected. Only authorized organ procurement organizations and tissue and eye banks can access the information.
Dr. Berry says persons interested in being organ donors still can sign a traditional donor card and carry it in their wallet. However, the registry is a more efficient process and increases the likelihood the family will honor their loved one's wishes.
Currently, more than 8,000 people are waiting for organ transplants in Texas. More than 2,000 transplants were performed in Texas in 2007, but more than 400 people died waiting for organ transplants.
The registry is named for the late State Rep. Glenda Dawson, a kidney transplant recipient, who championed the cause of organ donation. The Texas Legislature mandated the creation of the statewide registry, which began Sept. 1, 2006, and stipulated in 2007 that it be renamed in Representative Dawson's memory.
Approximately 130,000 people have registered as potential organ donors since the site was launched. Through Feb. 29, 2008, the top 10 Texas counties in terms of registrants were Dallas, Collin, Tarrant, Denton, Harris, Bexar, El Paso, Travis, Wichita, and Midland.
Dallas and El Paso counties were sites for Doctors for Donation, a pilot program launched in 2007 by the U.S. Health Resources and Services Administration to recruit primary care physicians to promote organ donation to their patients.
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