No.2 / April 2010

ORGAN tRANsplANts

Experts Look inside for advice from leading physicians.

Patients Hear real stories from real people.

giving the giftof life

Young friends help celebrate the 25th anniversary of UCLA’s Liver Transplant Program

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2 · aPriL 2010 an indEPEndEnt advErtising suPPLEmEnt by mEdiaPLanEt to Los angELEs timEs

CHAllENGEsThe transplantation of organs, tissues or cells from one person to another continues to capture the public’s interest and imagination, even decades after the first successful procedures.

Helping those In Need

No one needs to ex-aggerate the fact that transplanta-tion is, for many people, the dif-ference between life and death. For

others in need it is an opportunity for a vastly enhanced quality of life.

Unlike anywhere else in medi-cine, the ultimate implement of healing is a human gift. Transplant professionals rely on the generosityof ordinary people to help their fellow human beings through donation. As such, the public needs and wants to know how these gifts are being used.

This special report is intended to give you, the reader, a greater understanding of how transplan-tation is done today and what the future may hold. While the basic principles of transplantation are well established, we continue to make advances in medical practiceand science to make them more available and more successful. Transplantation represents a uni-que crossroad between emerging

science, medical practice, ethics, law and public policy. New deve-lopments in any one discipline can affect each of the others in turn.

UNOS (United Network for Or-gan Sharing) operates the nation’s Organ Procurement and Trans-plantation Network under federal contract. In this capacity, we develop and monitor policies that determine how deceased donor organs are allocated to candidates in need. We create standards for transplant institutions nationwide and investigate issues that may affect patient safety. We collect and report data on all vascular organ transplants nationwide, data which are reflected in many of the articles in this report.

We are proud of the achieve-ments made thus far in the field of transplantation. More than half a million people in the United States are living with some form of trans-plant. Long-term survival continu-es to improve, as does the quality of life of transplant recipients. Some people already have lived 40 years or longer with a successful trans-

plant. With the advances made in surgery and medicine over the last 20 years, we expect many more people to survive decades in good health due to transplantation.

Yet the remaining challenges are daunting. Since transplant ope-rations were first performed on a broad scale, there have never been enough organs or tissues availa-ble to meet the need. Sadly, the gap between need and availability con-tinues to grow. Today, more than 105,000 men, women and children anxiously await an organ trans-plant nationwide. Many more need tissue or bone marrow transplants.

We hope this report will not only inform you but remind you of your chance to help. If you have not done so, take just a moment to reflect on the inestimable good that comes from one person’s com-mitment to help others through organ and tissue donation. And please join the tens of millions of people who have made this posi-tive commitment already. Help us in our quest to save the lives of all those in need.

James J. Wynn, MDPresident, unosChief, section of transplant surgery,medical College of georgia

“today, more than 105,000 men, women and children anxiously await an organ transplant nationwide.”

Fact

Californians Wantedregister to become an organ donor.

We recommenD

PagE 3

Paid Leave p. 5How employers can make donating even simpler

organ transPlants, 2nD eDition, aPril 2010

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responsible for this issuePublisher: allan chiuallan.chiu@mediaplanet.com 1 213 237 3910Contributors:elena de la cruz, Beth Drost, Dr. Willis navarro

Distributed within: los angeles times, april 2010 this section was written by mediaplanet and did not involve los angeles times news or editorial Departments.

a special thanks to...

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aPriL 2010 · 3an indEPEndEnt advErtising suPPLEmEnt by mEdiaPLanEt to Los angELEs timEs

CHAllENGEs

Californians recently celebra-ted the enrollment of six milli-on residents as organ and tissue donors, making the state’s donor registry the largest in the U.S. Ho-wever, residents still lag behind most of the nation when offered the opportunity to register.

In 2009, only about one in four DMV customers checked ‘yes’ ontheir forms to register as donors, and of 26 million licensed drivers

and ID holders, only 23 percent ha-ve signed up. Still, the Donate Life California Registry continues to grow rapidly, adding 30,000 donors each week through the DMV.

The Donate Life California Registry plays an increasingly essential role in saving and healing Californians. Since the registry was introduced in April 2005, donors have saved more than 900 lives th-rough organ donation and healed

more than 30,000 through cornea and tissue donation.

The donor registry’s future growth faces obstacles, the most immediate being that many Cali-fornians mistakenly believe they are registered as donors if they ha-ve an outdated pink donor stick-er on their license. The only way to register is by checking ‘yes’ on the DMV application form, or signing up through the Donate Life Califor-

nia website.Another obstacle is a tendency

for young drivers and adults age 50 and over to rule themselves out; but in fact, anyone can be a donor. A 93-year-old kidney donor sets the national record for oldest donor.

“Each of us has the power to save up to eight lives as an or-gan donor and heal up to 50 oth-ers as a tissue donor,” said Bry-an Stewart, president of Donate

Life California.Of the more than 106,000

patients currently listed on the Na-tional Organ Transplant Waiting List, approximately 20 percent are registered in California, resulting in a disproportionate need for do-nated organs that magnifies every lost donation opportunity.

To learn more, visit www.donateLIFEcalifornia.org or in Spanish at www.doneVIDAcalifornia.org

In the past, when a baby was born, the umbilical cord was thrown away. But today, blood from the umbilical cord can be collected after the baby’s birth and donated to a public cord blood bank to help patients with leukemia, lymphoma and many other life-threatening diseases.

Like marrow, cord blood is rich in blood-forming cells that can be used in transplant therapy, providing patients an additional treatment option. Recognizing the

value of publicly donated cord blood, Congress passed the Stem Cell Therapeutic and Research Act of 2005. This act included the cre-ation of the National Cord Blood Inventory (NCBI) and provides federal funds to increase the in-ventory of publicly donated cord blood units.

“Congress should continue to support its investment in the NCBI by reauthorizing the Stem Cell Therapeutic and Research Act, which expires this year,” said Jeffrey W. Chell, MD, chief execu-tive officer of the National Marrow Donor Program (NMDP).

Local EffortsCalifornia is uniquely positio-

ned to help add cord blood units to the Be The Match Registry, with public cord blood banks—including StemCyte Internatio-nal and Children’s Hospital of Orange County Cord Blood Bank—that work with hospitals, physici-ans and expectant parents to en-courage them to publicly donate their babies’ cord blood. And, with its diverse population, donations from California will help increase the diversity of the registry.

The California Legislature is currently considering a bill that

would provide up to $1.5 milli-on per year to support the state’s public cord blood banking pro-gram. Assembly Bill (AB) 52 (Portantino) would help fund the storage and collection of donated cord blood units, potentially as-sisting thousands of patients in need of transplants.

Public cord blood banks cover the costs to collect, test and store donated cord blood—there is no cost to the expectant parents. The average cost of this process is between $1,100 and $1,500 per unit.

“I authored this bill because

I recognized that educating pa-rents about public cord blood banking is not enough. Without allocating funding to actually support the collection of publicly available cord blood units, we can’t meet the needs of searching patients,” said Assembly member Anthony Portantino (D-LaCanada Flintridge), author of AB 52.

If passed, Assembly Bill 52 would help cover some collec-tions in California, essentially al-lowing public cord blood banks to accept more donations.

Visit BeTheMatch.org/cord to learn more.

Cord Blood Donation Fills Critical NeedNew Life Gives Hope

California Becomes largest Donor Registry In U.s.

Just CHECk YEsthis Californian is proud to have registered as a donor at her local DMV.Photo: oneLegacy

“Each of us has the power to save up to eight lives as an organ donor and heal up to 50 others as a tissue donor.”

We make our readers succeed!

NEws

4 · aPriL 2010 an indEPEndEnt advErtising suPPLEmEnt by mEdiaPLanEt to Los angELEs timEs

Celine de Guzman, of Agoura Hills, Calif., was a perfectly healt-hy infant until about three months old when the persistent crying began. Soon after, she grew pale and lethargic.

Concerned, her parents Resy Tablante and Riz de Guzman took Celine to the pediatrician. Blood samples showed Celine had se-vere aplastic anemia, a rare di-

sease that occurs when the bone marrow doesn’t produce enough blood cells.

Celine went into intensive care and subsequently endured months of blood transfusions and other treatments—but they all fai-led. Doctors at Children’s Hospital Los Angeles said Celine had only one option: a marrow transplant.

That was 10 years ago. Today, Celine is a healthy 11-year-old. She knows she is alive because of the generosity of another person—a young woman from Hawaii who

had registered with the Natio-nal Marrow Donor Program (NM-DP), a nonprofit organization that facilitates marrow and cord blood

transplants worldwide; conducts research; and provides education and support to patients, donors and health care professionals.

Celine beat tremendous odds. Like 70 percent of people who need a marrow transplant, no one in Celine’s family matched her tissue type, and she was most like-ly to match someone who shared her Filipino heritage. But even to-day, people of Asian descent com-prise just seven percent of those on the Be The Match Registry.

Today, Celine is a thoughtful and loving child, and her mother is gra-teful to Celine’s donor—“Because of this person’s decision to help oth-ers, our daughter has a normal life.”

NEws

Every year, thousands of pa-tients are diagnosed with life-thre-atening diseases, such as leukemia and lymphoma, and an unrelated marrow transplant is often their best or only hope for survival.

For more than 20 years, the National Marrow Donor Program (NMDP) has strived to ensure thesepatients receive access to this potentially life-saving treatment, relying on a collaborative effort with a global network of registri-es, donor centers and transplant facilities—including more than 10 transplant centers in California.

Growing the RegistryAbout 70 percent of patients will

not find a donor within their fa-

mily and turn to the Be The Match Registry. Operated by the NMDP, it is the world’s largest registry, providing access to more than eight million potential marrow donors and 160,000 donated cord blood units.

Because tissue types are inhe-rited, patients are most likely to match someone who shares their heritage. More donors are needed, especially from racially and ethni-cally diverse communities.

Improving Outcomes Medical advances are making

transplants a treatment option for more patients than ever before. Many of these improvements are attributed to refined medical

practices tailored to the patient’s disease and condition, as well as notable improvements in the abi-lity to manage possible transplant complications.

Making Donation EasierThe process for donating also has

become easier. Today, most dona-tions do not involve surgery. The patient’s doctor most commonly requests a peripheral blood stem cell donation, which is a non-sur-gical, outpatient procedure. If the patient’s doctor requests marrow, marrow donation is a surgical pro-cedure performed in a hospital un-der general or regional anesthesia.

Joining the Registry

Becoming a potential marrow donor has never been easier. In the past, people joined by provi-ding a blood sample. Today, poten-tial donors complete a health his-tory and give a swab of cheek cells. People can even register online to have a tissue typing kit mailed to them.

With increased demand for transplants comes a need for ad-ditional committed donors. A ma-jor awareness campaign is under-way in Los Angeles to educate re-sidents about the need for marrow donors and to encourage them to join the Be The Match Registry, volunteer or contribute financially. Visit www.BeTheMatch.org to learn more.

Meeting the Needs Of  Marrow And Cord Blood Donation

Medical advances are making transplants a treatment option for more patients.

Marrow transplant saved Her Young lifeLocal girl enjoying life 10 years after marrow transplant

“because of this person’s decision to help others, our daughter has a normal life.”

Celine de Guzman

– resy tablante

neWs in BrieF

25tH annivErsary

Celebrating silver■ On February 1, 1984, UCLA performed a liver transplant on a 46-year-old man, thereby launching a program that was one of only five in the United States.

“With the justified uncertainty of the patient’s course at that ti-me and the future of our program hanging in the balance, we had no way of predicting whether we would be successful or not,” recalls Ronald W. Busuttil, M.D., Ph.D., professor and chairman, UCLA Department of Surgery. “As a result, nearly 5,000 liver trans-plants later, one cannot imagine how extremely gratifying it was for our transplant team to join more than 2,500 patients, friends and donor families in celebration of all we had accomplished to-gether over 25 years.”

aPriL 2010 · 5an indEPEndEnt advErtising suPPLEmEnt by mEdiaPLanEt to Los angELEs timEs

NEws

For those who can benefit from living donation, Employee Leave & Organ Donation Programs that re-move the financial constraints to donation can be a viable solution to the deficit of available organs. This program, launched by the Ame-rican Society of Transplantation (AST), makes it easier for public and private employers across the U.S. to facilitate the gift of organ donation by providing paid leave to employ-ees who act as live organ donors.

“Individuals who give up a kid-ney or part of a liver to another per-son are heroes. Sometimes we read about them, but what goes unspo-ken is that potential living donors often cannot donate because of wages lost from work during reco-very from surgery. There are ma-ny potential donors who just can-not give because of the time they would miss from work,” said Joren C. Madsen, MD, DPhil, president of

the AST.Paid leave could also help ease

the chronic shortage of organs in the U.S., where more than 50,000 new patients were added to the transplant waiting list in 2009. Each day, 18 people die awaiting organ transplants.

AST’s Employee Leave & Organ Donation Program provides assis-tance and education to employers in establishing a paid leave pro-gram for living organ donation.

Living DonorsLiving donors are responsible

for the organs in approximately 50 percent of kidney transplants, 10 percent of liver transplants and two percent of lung transplants. There were 6,306 live organ dona-tions in 2007.

The recovery period for organ and tissue donation surgery varies by individual but is generally one week for bone marrow, four weeks for kidney and up to 12 weeks for liver and lung.

Ast ProgramCurrently, at least 40 institutions

and corporations have paid leave policies for live donors. Twenty-nine states also have policies and many have related legislation pen-ding. The federal government has had a paid leave policy since 1999.

“Paid leave for employees who give the gift of an organ to another person is gaining momentum in the U.S., but participation by pri-vate industry and major institu-tions is needed to help this initia-tive grow,” said Dr. Madsen.

AST encourages employees to talk to their employers about adopting paid leave programs. The AST pro-vides assistance to employers who want to establish a paid leave poli-cy for organ donors. The assistance includes: a sample human resour-ces policy statement; a booklet that describes organ donation and rela-ted employee needs; copies of exis-ting state and federal policies; and a news release template to announ-ce the program. AST has also produ-ced a DVD that profiles three donors who were able to give the gift of life to family members because of sup-portive employer programs. Visit www.a-s-t.org to learn more.

questionnaire

What are steps to ensure a successful living donor liver transplant?

David C. Mulligan, MDdirector, transplant Centermayo Clinic in arizona

■ Living donor liver trans-plantation can save the lives of hundreds of patients who oth-erwise have little chance of receiving a deceased organ.

The primary focus for all living organ donors is to maximize their safety by evaluating them for their medical and psychosocial readi-ness. At Mayo Clinic in Arizona, we carefully select only those who have the best possible prognosis for a great outcome following their major surgery.

When we are satisfied with the results of initial screening, poten-tial liver donors are scheduled for an extensive, four-day series of appointments and exams.

Detailed discussions take place

with social workers, psychiatrists, independent donor advocates and the medical and surgical teams to confirm that donation is purely for altruistic intentions.

The final step is a liver biopsy to examine the tissue to rule out any abnormalities that could place the donor at additional risk. Surgery is scheduled only after the donor’s case is reviewed at a multidiscipli-nary selection conference.

These donors are heroes who risk their lives for someone they care for in a most wonderful way. They go through the most thorough medical evaluation a human being can imagine, and a major surgery that cannot be minimized.

Employers Can Help shortageCurrently there are more than 100,000 Americans awaiting a lifesaving donor organ, many more people than there are donors.

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INspIRAtION

Jose Gutierrez (Donor)After our father suffered a severe

brain trauma in 2006, our family made the collective decision to donate his organs. Our decision was based on his belief that we sometimes need to make room in this world for others to live. In that spirit, we knew that organ donation was the right thing to do. Years later our lives have been deeply enriched by the donation experience.

Our father was a simple and hum-ble man. He enjoyed reading and was an avid supporter of education.

He delved into literature and practi-ced English whenever he could. He enjoyed learning new vocabulary words and completed night cour-ses at our local high school. We will always remember his positive attitude and optimistic view of life.

Hearing from one of the recipients of his organs was something we never expected; their letter touched us deeply. In it, the recipient of my father’s heart expressed his unconditional gra-titude for extending his life. We received the letter with delight

knowing the recipient was recove-ring well. However, we yearned for our father and continued to mourn his absence. Just like the recipient’s numerous drafts, it took us several attempts to respond to his heartfelt appreciation. Our original intention was to save one person, so learning that three additional recipients be-nefited was truly an added blessing.

Leiauna AndersonI was two months away from re-

alizing my dream of becoming a mother when I felt something was

wrong with my baby. In the ER the nurse looked at me and said “I’m sorry honey, there is no heartbeat.” During the emergency c-section the doctors discovered that my liver was badly damaged.

I was transferred to UCLA to be placed on the list for a transplant. My husband was told I was not go-ing to make it. When a liver arri-ved, even though it wasn’t a perfect match, my doctor transplanted it. It kept me alive until a second organ, from a 19-year-old woman who had died in an accident, arrived.

After regaining my health, I was told I should never again become pregnant. My world collapsed. My doctor, however, found out that I could donate an egg. My brother’s wife offered to carry the baby for me and we did in-vitro fertilizations.

Today, I mourn my first son, but I am convinced he saved my life by sending me to the hospital; I honor and thank my first donor who kept me alive, as well as my second donor who allowed me to become a mother to Rex. An organ is truly the most beautiful gift someone can receive.

CLIENT: ST. JOSEPH JOB#: STJO_0251_TRANSPLANT_AD NAME: KIDNEY TRANSPLANT AD PUBS: LA TIMESSPECS: 4C BLEED: NA TRIM: 10” x 4.5” LIVE: NA GUTTER:

ART DIRECTOR: JIM CUDDHYCOPYWRITER: COURTNEY BETLEYPRODUCTION: KATHI LAMEYACCOUNT EXEC: REBECCA WELLSSTUDIO: 3RIAN OLIVAS

READER 5FPO HI-RES

PRODUCTION NOTES: APPROVED CHANGES

TEAM LEADER: ART DIRECTOR: COPYWRITER: PROOF READER: ACCOUNT EXEC:

DGWB St. Joseph Hospital Proof NA 4/7/10 10:00am NB

S833 S833_STJO0251 10”x4.5” 100%1.0

For over 35 years, the St. Joseph Hospital Kidney Transplant Center in Orange has been giving hope, health and

second chances to the people of Southern California. That’s because we understand that transplant patients have

a unique set of medical needs that must be cared for with the utmost dedication and expertise. And all that hard

work and attention to detail has paid off with some of the best patient outcomes in the nation.

To learn more, call 714-771-8033 or visit sjo.org/kidney and watch our podcast explaining our unique

approach to kidney care.

1100 W. Stewart Drive

Orange, CA 92868

The St. Joseph Hospital Kidney Transplant Center:Proud home of second chances.

A second Chance: Donor And Recipient stories

Jose gutierrez“We sometimes need to make room in this world for others to live.” - Jose gutierrez (son)

Leiauna anderson “after regaining my health, i was told i should never again become pregnant. my world collapsed.”

aPriL 2010 · 7an indEPEndEnt advErtising suPPLEmEnt by mEdiaPLanEt to Los angELEs timEs

pANEl OF EXpERts

■ What are the main differences in practicebetween a pediatric versus adult liver trans-plant?

The pre-transplant mortality is much higher among adult patients. One of six adults on the waiting list for liver trans-plantation dies without the opportunity of transplant. This figure may be underestima-ted since some adults may not be accepted as candidates because they are too sick to undergo transplantation, or removed from the list for the same reason. In children, pre-transplant mortality is about one percent.

There are many opportunities to offer them transplantation, such as trimming a large donor liver to a small size or by splitting a liver into two functional units for transplan-tation of an adult and pediatric recipient, respectively. Living donor liver transplan-tation is another option. Further, a parent or relative is more willing to donate aseg-ment of the liver to help his/her child than an adult donor to adult recipient. ABO-in-compatible livers may successfully be used in young children, particularly in patients under three years of age; however, ABO-in-compatible livers have not been particularly successful in adults.

The pediatric candidates at a disad-vantage are small kids needing a combi-ned liver plus intestinal transplant. This pre-transplant mortality approaches 50 percent, as patients need organs from donors similar in size. There are very few pediatric donors, particularly among pre-schoolers.

■■ Are there long-term health risks trans-plant patients need to be aware of?

Kidney failure patients reap a multitude of benefits from transplantation. However, there are health risks associated with trans-plantation.

Transplant medications that prevent rejection place patients at risk for life-thre-atening infections. Fortunately the risk for infections diminishes over time and can be prevented with careful attention to ca-re. Transplant medications also prevent “rejection” of new or hidden cancer cells resulting in a one hundred-fold increase in cancer risk—mostly in skin cancer and a form of a rare lymphoma unique to trans-plant recipients. However, at-risk patients are identified before transplantation and these risks can be managed by the use of ongoing screenings.

Transplant medications can also cause elevated cholesterol and speed up the deve-lopment or progression of heart and vascular disease. Bone loss caused by the use of even small amounts of steroids increases the risk of fractures and other bone problems.

Even with these potential risks trans-plant recipients at St. Joseph Hospital have benefited from a one year success rate of 100 percent for over the past five years, and most recently a three year success rate of 97.3 percent and they are expected to live twice as long as they would have on dialysis and be healthier overall.

■ What advancements have been made to increase the success rate of heart transplant procedures?

Back in the “old days”—meaning 1980—

fewer than 200 patients underwent heart transplantation, with 65 percent surviving one year post-surgery. Today, the one-year survival rate is approaching 90 percent; the three-year survival rate is around 80 percent. This is remarkable, especially for the people behind the numbers—the patients who receive the gift of life and their family members.

There are several reasons for the improved outlook, including improved pre-transplant protocols, better medications and advances in surgical technique.

In several new randomized clinical trials, new anti-rejection medications such as tacrolimus, mycophenolate mofetil and sirolimus have significantly reduced rejection episodes. Newer and more effective antibiotics have also reduced deaths from infections. Simultaneously, cardiologists have been employing simple blood tests called immune monitoring assays, to detect rejection instead of routinely relying on a heart biopsy, which is an invasive procedure. Fewer invasive procedures mean improved quality of life for transplant patients. Pre-transplant, new preservation solutions have better protected the donor heart. Finally, the use of the bicaval surgical technique, a more natural way to sew in the donor heart into the recipient, has led to improved working of transplanted hearts.

jon A. kobAshiGAwA, md director, Heart transplant ProgramCedars-sinai Heart institute

■ What material differences exist when working with implantable artificial hearts versus donated organs?

Although both implantable artificial hearts and donor hearts require surgical implantation, they have many differences. Implantable artificial hearts are attached to a power source via a cable, that the pa-tient wears at all times. In addition, since artificial hearts are mechanical devices, they may develop “wear and tear” issues and/or mechanical failure over time.

Implantable artificial hearts al-so expose the patient’s blood to artifici-al surfaces, which may serve as a sour-ce of clots and possibly cause stroke. Be-cause of this possibility, patients are required to take blood thinners, which come with their own set of risks. In contrast, the transplanted donor hearts function similar-ly to the patient’s natural heart.

To prevent the patient’s immune sys-tem from attacking the “foreign” do-nor heart, heart transplant patients are treated with medications that sup-press their immune system and may ma-ke them susceptible to infections. De-spite this immunosuppression, the do-nor heart may be slowly injured overtime, limiting the survival of heart transplant recipients. Fifty percent of heart transplant recipients are expected to live more than 10 years. Survival following implantation of an artificial heart may only be a “few years.”

AbbAs ArdehAli, md director, Heart and Lung transplant ProgramuCLa Health system

CArlos o. esquivel, md, phdChief, division of transplantationstanford university and Lucile Packard Children’s Hospital

ervin ruziCs, md medical directorst. Joseph Hospital Kidney transplant Center

Ranked Best in the West & No. 3 in the Nation

In the town of Hollywood endings,we specialize in new beginnings.For more than 25 years, UCLA’s pioneering surgeons, physicians and

scientists have transformed the lives of transplant patients, from introducing

tissue-typing to the world to developing innovative therapies to expand the

availability of lifesaving organs. As one of the most comprehensive and

experienced transplant centers in the nation, we offer a multidisciplinary

approach to diagnosis, care and treatment for children and adults.

• Bone Marrow/Stem Cell Transplant• Corneal Transplant• Heart Transplant• Intestinal/Multivisceral Transplant• Islet Transplant• Kidney Transplant• Liver Transplant• Lung and Heart/Lung Transplant• Pancreas Transplant

For more information and to hear our patients’ stories, go to www.transplants.ucla.edu 1-800-UCLA-MD1 (1-800-825-2631) www.UCLAheALth.org

Follow us at: www.facebook.uclahealth.org and www.twitter.com/uclahealth

UCLA098 LA Times TranspAd (PRS)pc.indd 1 4/14/10 10:44:43 AM