A new study points to an overall decline in living donor volume in the United States. “The AJT Report” takes a look at possible reasons for the downturn. Also in this issue, we discuss two back-to-work programs for transplant recipients.
News and issues that affect organ and tissue transplantation
FEWER LIVING DONORS
A decline in living donors may be due to multiple factors
After a dramatic rise of 265% from 1988 to 2004, culminating with a peak of 6,647 living kidney donors in 2004, the U.S. has experienced a decline in kidney living-donor volume. According to a recent study based on an analysis of data from the Organ Procurement and Transplantation Network (OPTN), the number of living donors declined to 5,618 in 2012. Additionally, the data show that the decline was most pronounced among men, blacks, younger and lower income adults, siblings, and parents.
The 2004 peak was “long before there was any regulation for living donors,” says Christie P. Thomas, MD, chair of the OPTN Living Donor Committee. The initial decline after 2004 was followed by a second small increase in living-donor volumes before falling again. While the total number of living donors has declined, certain categories of living donors and some regions of the U.S. have reported increases, Dr. Thomas says. Although the Living Donor Committee has been tasked with safety, not donor volume, committee members plan to discuss living-donor volume at their next meeting this spring.
Among the potential reasons the study authors cite for the decline in living donors are:
The economic downturn;
An older transplant population, with older potential donors;
A reluctance of lower-performing centers to select “marginal” donors;
A reduction in family size;
Changes in donor selection criteria; and
A policy of the United Network for Organ Sharing that prioritized allocation of deceased-donor kidneys to younger patients.
Another disincentive may be our system of health insurance, according to a 2010 personal viewpoint published in the American Journal of Transplantation and authored by E.S. Ommen, MD, of Mount Sinai Medical Center in New York and J.S. Gill, MD, of the University of British Columbia in Vancouver.
James Rodrigue, PhD, a psychologist at the Transplant Center, Beth Israel Deaconess Medical Center in Boston, who is one of the co-authors of the initial study, also says he is concerned that the proposed new kidney allocation system would exert additional downward pressure on donation rates “because the system is likely to favor those who are young, and they are the ones who now have higher rates of live-donor kidney transplantation.”
Live Liver Donors
The numbers are also down for living-donor liver transplants, says James Trotter, MD, medical director of liver transplantation at Baylor Health Care System in Dallas. He cites risk aversion by many centers, accumulating donor deaths at experienced centers and increasing obesity in the donor pool.
Josh Levitsky, MD, a gastroenterologist at the Comprehensive Transplant Center at Northwestern University Feinberg School of Medicine in Chicago, adds, “While there may be advantages to performing earlier live transplant on pretransplant survival, there does not appear to be a clear benefit [for] long-term graft function and survival, as seen in kidney.”
“I think it has declined for some of the same reasons, such as financial disincentives, as well as priority given to hepatocellular carcinoma patients; before, [it was] much easier to convince donors of the need, and [these patients] were perfect candidates due to less severe liver failure,” says John Fung, MD, PhD, chair of the Digestive Disease Institute at the Cleveland Clinic.
New study data point to an overall decline in U.S. kidney and liver living-donor volume.
Financial disincentives and an aging pool of potential donors are among the reasons cited for the downturn.
Some Centers Report an Increase
Interestingly, Dr. Rodrigue says that approximately 20% of transplant programs in the U.S. have seen an increase in living donors. In 2009 and 2010, an increase in annual living donors was seen in Region 4, Region 8 and Region 9.
Although his team was unable to explain the reasons that these regions flourished, Dr. Rodrigue hopes that a Living Donor Consensus Conference for Best Practices can be held to bring programs together to look at how patients are educated, their support networks and more. The Live Donor Community of Practice and the American Society of Transplantation are working with patient care organizations, professional societies and insurance companies to make this conference a reality in 2014.
LIVING DONORS COMMENT ON THE DECLINE
IF YOU ASK LIVING DONORS why they believe there may be a decline, the answers are varied. Here are a few of their responses, as posted by users of the message board of www.livingdonorsonline.com, a site for patients run by the International Association of Living Organ Donors:
“Those of us who have offered our kidneys are a brave lot. Why would anyone in perfect health even consider going through the surgery, losing half of their filtering capability for life, be a possible health insurance liability, and just get a ‘thank you’ for what they did?”
“I think [that] in reality, donors really want reassurance and a guarantee before, during and after surgery…. The independent donor advocate is supposed to address the approval-to-donate process but we see in reality it falls short in most hospitals.”
“I will say that I did not receive full true informed consent, and I resent that to this day.”
Back-to-Work Programs Help Transplant Patients
Two institutions have formed work-transition programs for patients who have undergone transplantation, offering assistance with interview skills, resume writing, training placement and job searches.
Vanderbilt's Return to Work Program
After David Richards had a double-lung transplant, he was unable to return to his job in the healthcare sector due to risk of infection. Stephanie Knight hadn't been able to work for some time due to end-stage kidney disease. After her successful kidney transplant, she realized she needed help in brushing up her job interviewing skills.
Richards and Knight are among hundreds of transplant patients who have benefitted from the Patient Return to Work Program at Vanderbilt University in Nashville. Started in 1995, the program helps transplant patients get back into the workforce or return to school for training. Joanne Ball, the program's director, says patients are told about the program before transplant and she contacts them about three to six months after the transplant to invite participation. Among the counseling services offered are career interest testing, analysis of work history for transferrable skills, job interview skills, resume writing, computerized job searches and job placement. When posttransplant patients need new skills, the program assists with school selection and obtaining tuition provided by the state.
With help from the Return to Work Program, Richards now attends Tennessee Tech University as a full-time student studying management information systems. Knight credits the program with helping her in job interviews and with her resume, all of which led her to a new job.
The Vanderbilt program is funded by the Tennessee Division of Rehabilitation Services, a division of the Tennessee Department of Human Services. In 2004, the Return to Work Program was selected as a model for the nationwide implementation of similar programs throughout the transplant community.
Georgia Transplant Foundation's JumpStart
Started in Georgia in 1996, the JumpStart program is offered through the Georgia Transplant Foundation for all state transplant patients. The foundation provides training and apprenticeship programs as well as assessments identifying career options, job readiness workshops, one-on-one job coaching, information on the Americans with Disabilities Act, and worksite modifications. JumpStart participants may be employed by outside organizations or engaged as an independent contractor based on the need for on-the-job training, acquisition of a new skill set, work experience, and confidence building for a smooth transition back to work.
Vivian J. Tomlinson, JumpStart's director, says the Carlos and Marguerite Mason Trust provided the start-up money for the program, and since then it has received funding through the Georgia Vocational Rehabilitation Agency under the Department of Labor.
JumpStart's clients have ranged in age from young adults to retired people looking to supplement their income. For example, a liver transplant recipient came to JumpStart with the primary need of securing a job with health insurance benefits. JumpStart's career counselor invited him to a Metropolitan Employment Networking Association meeting and there he made a connection that led to a full-time position with the Centers for Disease Control and Prevention. Another JumpStart client is a double-lung transplant recipient who lost his job as a printer due to severe physical limitations. After participating in JumpStart's apprenticeship program, he was able to find a location where he could work while updating his printing skills. He was eventually hired in a part-time position.