NewslettersTRIO Membership UpdatesTransplant Recipients International Organization, Inc. January 2000
TRIO hopes you had a very Merry Christmas, Happy Chanukah, and a Happy Kwanzaa! We would also like to wish you and your loved ones a very Happy New Year! May the coming months bring you peace, health, and happiness. Table of Contents
National Donor Day 2000Mark your calendars for this years' National Donor Day on Saturday, February 12, 2000! As in the past years, the event will be held at Saturn dealerships across the country to enhance public awareness of the many ways one can give the Gift of Life. The first two National Donor Days (1998 & 1999) raised nearly 17,000 units of blood, added over 2,400 potential donors to the National Marrow Donor Program (NMDP) Registry and distributed tens of thousands of organ and tissue donor cards. With your participation, National Donor Day 2000 will be a record-breaker! The celebration takes place at every Saturn location across the country from 11:00 a.m. to 5:00 p.m. on February 12, 2000. There are at least three ways the public can be involved: blood will be collected for local blood banks, blood samples will be tissue-typed and the results entered into the NMDP Registry who will contact them if they are matched with a patient who needs a bone marrow transplant (BMT), and organ and tissue donation pledge cards will be available to sign. To encourage donation dialogue among families and friends ("Share Your Decision"), Saturn will provide free 15-minute long distance phone cards to the first 50 visitors at each site. The goal of National Donor Day is to let others know the importance of organ and tissue donation, especially in the minority communities, at a time when over 70,000 patients are waiting for a transplant. As time moves forward, TRIO chapters will be receiving more information about National Donor Day 2000. Posters, flyers, press kits and postcards will be distributed to spread the word in your communities, as well as the locations of local Saturn dealerships. TRIO members-at-large should feel free to call 1-800-TRIO-386 to request information for their area as well. Information is also available on the TRIO website, www.trioweb.org. With everyone's participation, National Donor Day 2000 will be a huge success! [Web note: More information can also be found at the National Marrow Donor Program's website.] Education
Thanks for the BoostWe extend a hearty New Year thank you to the following people who have notified us that they have donated United Airlines Mileage Plus miles to TRIO's account: Kris and Larry Adams, Hawaii; Iris Gardner, Hawaii; Larry Slagle, District of Columbia; and Nat Wilson, Virginia – a total of 150,000 miles. TRIO's Travel Program, a Charity Miles partner in United Airlines' frequent flyer program, approved 66 applications in 1999 for free air travel for transplant-related travel. The flights were paid for by generous donations of frequent flyer miles by many, many people. How about you? It's easy. Call United Airlines Mileage Plus at 1-800-421-4655 and tell the operator you wish to donate miles to TRIO in the Charity Miles Program. That's it. Get going! If you donate miles to TRIO, or if you have donated, please let us know. We'd like to acknowledge your generosity here in the Membership Update. [Editor's Note. United Airlines' policy is a minimum donation of 10,000 miles.] ePatients.com[Update (1/20/00): Unfortunately, ePatients.com and eDonate.com are no longer active. We regret this and will continue to work to support and educate patients and their families. Please contact TRIO by e-mail or phone (800-TRIO-386) if you would like to help us in this mission. Also, TRIO remains an Amazon.com Associate, so your on-line purchases can still benefit TRIO.] Because of their "up close and personal" experience, patients and their families are the experts on what it really feels like to live through injury, illness, and recovery. These people learn valuable insights and coping techniques that can guide others through some of the bumpy spots on their healing journey. And, it can be a great source of comfort and reassurance to listen to another patient or family member who has faced a similar challenge. There has never been an extensive collection of patient stories that are easily accessible to everyone from everywhereuntil now. ePatients.com has created an on-line community where patients, families, and their loved ones can gather to share their story with one another, giving and receiving the understanding and encouragement that is so essential. If you have a story that you'd like to share with others, just e-mail triostories@epatients.com or call Patricia at 408-261-6480. An ePatients.com staff member will then contact you to jointly determine how your experience might benefit other patients around the world. To show their appreciation, ePatients.com will donate $25 (the first 1,000 stories received are eligible) in your name to the nonprofit organization of your choice (like TRIO!). Now you can raise funds for TRIO simply by purchasing the products you normally buy. All you have to do is point your web browser to www.e-donate.com/trio and choose from vendors like Amazon.com, Avon, Dell, Art.com, and PlanetRX. Up to 35% of your purchase price will be given to TRIO to support the programs that matter to you. The best part is that there's no extra cost to you or to TRIO for participating. Shoppers at Amazon.com may also donate by visiting that site directly. So, make a difference and shop at www.e-donate.com/trio today! Medicare Agency Rules to Provide Increased CoverageEffective December 10, 1999, the Health Care Financing Administration (HCFA) will provide coverage of liver transplantation for patients with hepatitis B. Until now, HCFA (the agency that provides reimbursement for all Medicare patients) denied coverage for hepatitis B patients who required liver transplants. HCFA policy was based on poor outcomes in patient survival a number of years ago. With the use of newer drugs, current outcomes for hepatitis B transplant patients are comparable to those for other liver transplant indications. With the success of hepatitis B liver transplantation, it was now time to change HCFA policy. This change will enable patients and families already burdened with end stage liver disease as a result of hepatitis B to no longer be further burdened by the failure of Medicare to provide the reimbursement needed for a life-saving liver transplant. TRIO's Web Site -- Are you on-line?Don't forget to visit TRIO's newly expanded web site! TRIO has joined up with a unique service that has created a "Legislative Action Center" page on the TRIO site. This service allows TRIOweb users to get the latest information on legislative issues as they relate to transplantation, write to members of Congress, and learn more about Congressional committees, leaders, and members. A "Letter to Congress" template is available to help you become advocates for transplant issues quickly and easily. Check it out: and let your voice be heard! Go to: http://www.trioweb.org Oops . . . Again!We'll get it right, sooner or later! The last few issues of LifeLines contained an error in the "Calendar of Events." The World Transplant Games in Orlando, Florida, will be held on June 21-24, 2000, not what was previously published. We look forward to a wonderful event! Advocacy
TRIO President Testifies Before HHSTRIO President Bruce Weir, on behalf of TRIO, testified before Secretary Donna Shalala at the Department of Health and Human Services (HHS) in early December. Transplant surgeons, the presidents of ASTS and Physicians, transplant coordinators and others in the transplant community met to discuss implementations to the final rule governing the Organ Procurement and Transplant Network (OPTN). The final rule, the transplant community's reaction to the rule, and how the rule can best be implemented were all topics of discussion. Weir spoke in favor of the National Organ Transplant Act (NOTA) revisions. "Fifteen years ago, NOTA established the framework for a system to allow our citizens to obtain an organ transplant in a fair manner. TRIO has been at the forefront asking for improvements to this system and we have supported the changes proposed in the rule. This is not a system for doctors. It is not a system for transplant centers. It is a system for patients." He went on to list several issues related to the revisions that TRIO is supporting, such as: using standardized criteria to list patients; more public representation on the Board of OPTN; and asking for oversight over the system by Secretary Shalala. The meeting successfully provided the principal organizations and individuals in the transplant community an opportunity to consult with the Secretary and to begin the process for collaborating on the implementation of improvements in the transplant system. [Read the full testimony on-line.] H.R. 1180 Becomes LawPresident Clinton has signed into law H.R. 1180, the Ticket to Work and Work Incentives Improvement Act of 1999. This bill contains a 90-day moratorium on the Department of Health and Human Services (HHS) Final Rule regarding organ donation. One potentially troublesome aspect of the Final Rule is a potential lowering of the current UNOS high quality standards for transplant centers and surgeons. The result of this regulation would enable any hospital or doctor to perform transplants, regardless of qualifications, and that would clearly not be in the best interest of patients. HHS has acknowledged this concern and has expressed willingness to discuss it. UNOS will continue to work with HHS to ensure the regulation honors the consensus of the medical community and best serves the needs of patients. Extending Medicare CoverageThe Institute of Medicine (IOM) recently held a public briefing on three new reports about the extension of Medicare benefits for services that were previously excluded or limited. One of the reports examined the current three-year limit on coverage of immunosuppressive drugs for transplant recipients. The authoring committee of this particular report found that there is strong evidence to support patients' continued need for immunosuppressive medication and their increased risk for graft rejection if they cannot follow their prescribed drug regimen. Even though the cost of medication seems high, it is still more cost-effective to provide immunosuppressive drugs to transplant recipients than to provide a second transplant to a patient who experiences graft rejection. This report, which was requested by Congress, will be used in the future to aid policymakers in determining the feasibility of extending Medicare coverage to Medicare patients. Wisconsin Donor Leave of Absence BillA bill that would require state agencies to give organ or bone marrow donors paid leaves of absence to donate their organs is the subject of a recent legislative hearing. People donating their bone marrow would be granted a leave of absence of five days and people giving other organs would get a 30-day paid leave of absence under the measure (Assembly Bill 545). This Wisconsin donor leave of absence bill is similar to the Donor Leave of Absence bill sponsored by Rep. Elijah Cummings of Maryland. That bill, signed by the President in September 1999, grants federal employees a leave of absence if they donate an organ or bone marrow. Wisconsin's effort might signal other states to file similar legislation. Editorial Calls for Mandated ChoiceA recent editorial in the British Medical Journal called upon US and UK policymakers to move forward with mandated choice as a means of narrowing, if not eliminating, the gap between organ supply and demand. "Mandated choice requires people to say whether or not they will donate their organs when they renew a driver's license, file an income tax form, or perform some other task required by the state [or federal government]," wrote North American editor Ronald Davis in the November 27 issue of the journal. "This approach allows consent to be expressed in advance of illness and death." Another option for increasing organ donation suggested by Davis is presumed consent. Under presumed consent, it is assumed that everyone will be a cadaveric organ donor unless his or her family explicitly refuses. Davis' editorial says that the time has come for a bold public policy on organ donation. Organ and Tissue Donor StampThe Organ and Tissue Donor Stamp was unveiled a year ago at the 1998 U.S. Transplant Games. However, this year's postage-rate increase put the stamp out of circulation. The U.S. Postal Service currently has no plans to reprint the stamp at the new postage rate. To voice your concerns and opinions on this matter, please write to:
William J. Henderson
The Organ and Tissue Donor Stamp is still available through TRIO. Even though the postal rate has increased, simply using a one-cent stamp in addition to the 32-cent Organ and Tissue Donor Stamp will help to support organ and tissue donation. Like the Breast Cancer stamp, they are available for 40 cents each (this price includes a 32 cent Organ and Tissue Donor Stamp and a 1 cent rate make-up stamp). The remaining seven cents will be used for donor awareness efforts. Thanks very much to all of you who have called to place orders for stamps! Call TRIO to place your order! 800-TRIO-386 |
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