Promoting Organ Donor Awareness; Supporting organ & tissue transplant recipients, candidates, organ donors and their families.

P r e side nt’s Me ssage Robert Golding Happy New Year to everyone. I hope your Christmas was Merry and Bright! Our success last year in fulfilling the mission of OTAP, by promoting organ donation, and providing the transplant community with a support group, is from our member participation in many promotional events. 2017 brings new opportunities for getting the word out about Organ Donation. The 7th annual Organ Donor Awareness Walk will take place April 9, 2017. The funds raised will be for the Jaime Munoz memorial scholarship, the Betty Montoya memorial scholarship as well as the operating budget for OTAP . A registration form will be included in the February newsletter and website. To help promote the walk, contact Feliz Munoz at [email protected] . Corporate sponsorships will be available if your company or business wishes to donate. Please contact your Human Resources division or other manager about sponsorship and if there is interest please contact Robert. The “Celebration of the New Year” member only potluck will be Saturday January 14 th at the Los Duranes Community Center located 2920 Leopoldo Rd. from 10:45am till 1:45pm. OTAP has paid for the room/serving area and will supply water, sodas, plates, and silverware. All you need to bring is your favorite Mexican food to the party and enjoy the company of your fellow members. There is a map included with the newsletter. The Gift Wrap at Macy’s was a success again this year raising $365.00. Evelyn Rivera, Lynn Davis, Margaret Lopez, and Robert Golding participated. We met a lady on the top of the kidney transplant list who was just waiting for the call to be transplanted. We wished her luck and told her about the support group. Thank you to those that have renewed their memberships and made donations to OTAP. Remem-

ber they are due by January 31st. A membership form is included in the newsletter. Just a reminder please send in your transplant stories for our website to [email protected] . Terry Raines has offered to take your photo or video your story for the web site. The News Letter is on our web site otapnm.com before it is in the mail. While you are there make a donation. Look for the donate button at the bottom of the page!

CONGRATULATIONS!!!! Transplant Recipients Doris Alrick, 2nd Kidney transplant on January 6, 2017 Judy Liles, 1st Kidney Transplant, January 17th

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Why People Don’t Commit to Organ Donation By Evelyn Rivera After receiving a diagnosis of liver cancer and cirrhosis I was place on the national wait list for a liver. I waited anxiously for eighteen months, never knowing if the cancer would take over before I received “the call”. There are so few organs, only those people closest to death receive the gift. A vast disparity exists

between the number of people who say they support organ donation and the number of people who are registered to donate. Statistics reveal that although 95% of Americans state their belief in organ donation only 48% are registered to be organ donors. The percent of registered donors varies from state to state (Department of Health and Human Resources). More than 80% percent in Alaska are registered donors compared to 12.5% in New York. (Wen) What are the reasons behind this disparity? Why don’t people commit? This disparity is a major health concern in the United States where twenty-two people die each day waiting for a life-saving organ. Therefore, reconsideration regarding registration is critical to the nearly 120,000 Americans waiting for an organ, including almost 800 New Mexicans. Researchers have conducted several studies to understand the reluctance to register. Commonly held myths or assumptions are associated with organ donation. One myth is that people over fifty think they are too old to donate. In fact, a 98 year old woman donated a liver to a 68 year old woman. Medical doctors test all organs thoroughly to insure organs are viable for transplantation. Kip Rainbird, a local organ recovery specialist, says that donors under the age of seventy-five are preferred. Also, many people think that a diagnosis of cancer rules them out for donation, but Kip Rainbird states the organs are considered if the person has been free of cancer for at least five years. Sometimes organs cannot be used due to diseases, like Hep C of which the donor and/or the family are unaware exists. Several studies have shown that the reasons for not registering are primarily based on social, cultural and psychological beliefs. Psychologically, one study revealed a general mistrust of medical practitioners: “There are people who subscribe to the belief that if a doctor knows you are a registered donor, they won’t do everything they can to save your life, “says Brian Quick, an associate professor of communication at the University of Illinois. Some people believe that a doctor will not save them, so that their organs can be used

to save someone else.

Furthermore some people mistrust a doctors’ ability to determine death. Death is

defined as no blood and no oxygen to brain, with no chance of recovery. In contrast, there is a chance of recovery from a coma. Irrational fears also prevents registration. One fear is that “it will hurt” and another is that the mere act of registering will cause the person’s death. Psychological surveys indicate “that people are unable to face the subject of death”. Brian Quick also mentioned the “ick” factor, people don’t want to think about their bodies or their loved one bodies as disassembled and distributed to those in need (Wen). Regarding the cultural beliefs some people say donation is against their religious beliefs, yet statements issued by many religions show support for organ donation. Clearly, the messages are not reaching the masses. Pope Francis has described organ donation as “a testimony of love for our neighbor.” Churches

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in the United Kingdom have formed a partnership called “Flesh and Blood” to encourage their congregations to view organ donation as a way to participate in their communities. The Mormon Church recognizes donation as a selfless act that results in benefit to individuals with medical conditions. All Jewish denominations encourage organ and tissue donation. Recently two Jewish rabbis became living donors. Each of them donated one kidney to someone in need of that organ. Another religion, Sikhism, places emphasis on the importance of giving and noble deeds. Although some Native Americans say their bodies must be intact for religious reasons; other tribes agree with organ donation. Another impediment to donation are social beliefs and norms. Social beliefs and social norms are long term behaviors of a society that contribute to the lack of commitment. Socially people don’t like to think about, discuss or plan for death. In one study a women

said “…Nobody really wants to talk about that”. (Wen) Also, organ donation is not typical and common in most deaths. The media plays an important part in contributing to social beliefs. For instance, one study showed that more than half of people get their information about organ donation from TV, particularly

Grey’s Anatomy. “We found that heavy viewers of the show saw Grey’s Anatomy as realistic, and the more realistic they saw these stories, the more likely they were to buy into medical distrust” (Wen). For example the show’s doctors begin discussing organ donation from a patient, before the patient has died. Typically a doctor does not know the registration status of a patient until they are dead. Mass media does a disservice to society in its portrayal of medical ethics. Family social beliefs also influence donations. Family members do not commonly discuss their option to donate with other family members in fear of contradicting family beliefs. This makes the choice difficult when the loved one has passed and the family does not know what the loved one wishes are regarding donation. Traditionally in America the dead are buried without organ donation. For instance it is “big news” when a celebrity or well-known athlete dies and donates their organs. If donation became the norm it would not be “news”. Organized tissue and organ donation could become a cultural norm like we did with bike helmets and seatbelt interventions” says Aisha Tator, executive director of the New York Alliance for Donation (Wen).

Social media campaigns now promote organ donation needs while addressing these commonly held beliefs. Maybe changing perceptions of donation will lead to more commitment. Patients are now receiving corneal transplants to see again; hand and arm transplants, like the double arm transplant that an U.S. soldier received last month; uterus transplant in order to carry a baby and penile transplants that victims of interactive explosive devices need both physically and psychologically. The potential to save lives and

enhance lives might be the new motivation to more registrations (United Network for Organ Sharing). In summary, as the wait list continues to grow the need for more commitment becomes critical. Perhaps a reconsideration of fears and myths will help people to “walk the talk”. There is no reason people should die waiting for an organ. I am forever grateful to my 22 year old, female donor for giving me

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the gift of life. I hope that in the near future the disparity will disappear. Maybe sometime in the future people will comment on our era of time and say “I can’t believe less than half of Americans were organ donors.” Or one day our society will value life more than death. As, Sam Messina, a father of a twenty-five year old donor said after meeting with two women that received his son’s organs, “When I look into their eyes, I see a little bit of Matthew moving on.” Works Cited Rainbird, Kip. Organ Recovery Coordinator, New Mexico Donor Services, Personal Interview, 10 Oct. 2016 United Network for Organ Sharing; http://www.unos.org/get-involved/promote-organ-donation/ Accessed

18 Oct 2016 United States. Department of Health and Human Services. OrganDonor.gov; http://www.organdonor.gov/ about/donors/religion Accessed 15 Oct. 2016 http://www.organdonor.gov/statistics-stories/statistics Wen, Tiffanie. “Why Don’t More People Want to Donate Their Organs?” The Atlantic “http:// www.theatlantic.com/health/archive/2014 10 November 2014

OTAP ORGAN DONATION SCHOLARSHIP I would like to give the members an update on the OTAP Scholarship Program. The committee has mailed out the forms to the high schools. At this point we have only received one essay submitted. It is still very early so I am confident that there will be more entries submitted. I am still in the need of a few more readers. If interested please email me at [email protected]. Being a reader is a rewarding experience as the essays can be very interesting. Thanks! Sharon Aiuto - Scholarship Chairperson

New Web Affiliate I have increasing our web presence by registering OTAP with a free service “Great Nonprofits”. You can find them at www.greatnonprofits.org . Type in Organ Transplant and the state (NM) in the search bar of the web page. “Select Organ Transplant Awareness Program” and our page will come up. Please add your story about OTAP to our page. The more stories we get the more interest OTAP will receive through this new avenue. You may donate to OTAP on this page.

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OTAP Transplant Times December 2016

Transplant Community Support Group FOR:

Pre and Post-Transplant Patients, Caregivers, Family Members, Living Donors

WHAT WE DO:

We benefit from discussing our experiences. We support each other. Primarily we are here to edify and encourage each other in a safe environment. We can communicate with people who are familiar with our circumstances. On occasion we have guest speakers.

WHO WE ARE:

We are a patient run support group. We are a free nonprofit group sponsored by OTAP

WHEN AND WHERE:

We meet on the first Saturday of each month. From 10:30 a.m. to Noon Erma Fergusson Library 3700 San Mateo Blvd. NE Albuquerque

CONTACT PERSON:

Venae Warner (505) 344-0512

to OTAP Sponsors for their support, NM Donor Services for printing of this newsletter, board, members for their submissions and the newsletter committee.

Celebrating 20 years Successful Transplant! Bob Skaggs Kidney May 27, 1996

Organ Transplant Awareness Program of New Mexico, Inc. PO Box 37217, Abq., NM 87176 Robert Golding, President [email protected] 505-934-7976 Evelyn Rivera, Vice President, [email protected] 505-299-5955 Patricia Pistorio, Treasurer [email protected] Feliz Munoz, Secretary [email protected] Marilyn Fore, Member at Large Support Group Facilitator Venae Warner, 505-344-0512 Scholarship Committee Sharon Aiuto, Feliz Munoz

Like us on Facebook Facebook.com/otapnm Web site www.Otapnm.com

Upcoming Events January 7, 2017 10:30 am – Noon

Transplant Community Support Group Erna Fergusson Library 3700 San Mateo Blvd NE

January 14, 2016 10:45 am – 1:45 pm

Celebration of the New Year Mexican Potluck Los Duranes Senior Center 2920 Leopold Rd NW

January 18, 2017

General Meeting “Organ Donor Awareness Walk Kick-off” Mario’s on 4th just north of Montano

February 4, 2017

Transplant Community Support Group “Caregivers Day” Erna Fergusson Library 3700 San Mateo Blvd NE

April 9, 2017 8:00 am

7th Annual Organ Donor Awareness Walk

Please send all Newsletter submissions to Robert Golding at [email protected]

2017 OTAP Annual Membership form Name_______________________________________________________________________________ Address_____________________________________________________________________________ City________________________________________State_________________Zip Code____________ Phone #_________________________________ Cell Phone___________________________________ Email address for organization communications only____________________________________ ____ I would prefer to receive the newsletter electronically. ____$15 Individual membership

_____ $20 Family membership

$_____donation

United Way Donations used code: “ORTRAW” Make checks payable and mail to: OTAP, PO Box 37217, Albuquerque, NM 87176 All contributions are tax deductible ___Candidate: Organ/Tissue Type: _________________Date Listed____/____/_____ ___ Recipient: Organ/Tissue Type: _________________Date Received____/ ____/ ____ 2nd transplant date –month day year: ____/____/____ ___Donor/member of a Donor Family: Name______________________ Organ/Tissue Type___________ Recipient___________________________ Transplant date –month/day/year: ____/____/_____ ___ Friend of OTAP Opportunities - Please check all that apply: I am interested in helping with promotional events. ____

fundraising events. ________

Personal information may be shared with other members such as phone number. ____ and address. _____ I am interested in working with the scholarship team. _________ I only want to receive the monthly newsletter. _________ I am interested in being part of the newsletter team. _________

I would be willing to help with health fairs or any other projects. ________ Suggestions: _______________________________________________________________________________ _______ Newsletter Sponsor ($100 Annual Donation) please send business card for ad in newsletter

Thankyou for your support!