Directed Donation – A.C.R. 19

MINUTES OF THE

ASSEMBLY Committee on Health and Human Services

Seventieth Session

March 24, 1999

The Committee on Health and Human Services was called to order at 1:40 p.m., on Wednesday, March 24, 1999. Chairman Vivian Freeman presided in Room 3138 of the Legislative Building, Carson City, Nevada. Exhibit A is the Agenda. Exhibit B is the Guest List. All Exhibits are available and on file at the Research Library of the Legislative Counsel Bureau.

COMMITTEE MEMBERS PRESENT:

Mrs. Vivian Freeman, Chairman

Mrs. Ellen Koivisto, Vice Chairman

Ms. Sharron Angle

Ms. Merle Berman

Ms. Barbara Buckley

Ms. Dawn Gibbons

Ms. Sheila Leslie

Mr. Mark Manendo

Ms. Kathy McClain

Mr. Kelly Thomas

Ms. Kathy Von Tobel

Mr. Wendell Williams

GUEST LEGISLATORS PRESENT:

Assemblyman David Goldwater, Assembly District 10

STAFF MEMBERS PRESENT:

 

Marla McDade Williams, Committee Policy Analyst

Darlene Rubin, Committee Secretary

 

OTHERS PRESENT:

 

Gerald Crum, Private citizen

William R. Hale, CEO, University Medical Center

 

Chairman Freeman opened the hearing on A.C.R.19 and asked Assemblywoman Gibbons to discuss her bill.

 

Assembly Concurrent Resolution 19: Urges all Nevadans who agreed to donate organs and tissues to direct that their anatomical gifts first be offered to transplant candidates living in Nevada. (BDR R-961)

 

Assemblywoman Dawn Gibbons, representing Assembly District 25, explained the purpose of her bill through her guests. First to speak was Jelena Hatfield who said on April 23, 1998, she contracted a rare form of bacterial meningitis and as a result lost her fingers and legs. Before she lost her legs she had needed a graft of cadaver skin in an effort to save them. It took a few days to get the skin, but she then received the skin, a living organ. Passage of A.C.R. 19 would make obtaining living organs much easier and more convenient for the people of Nevada.

Sandy Smith, Sierra Eye and Tissue Donor Service, introduced several persons in the audience from northern Nevada who were waiting for liver transplants Ms. Smith explained that coordinators from Sierra Eye and Tissue Donor Service recovered eyes and tissues from northern Nevada and distributed them to persons waiting in the area. Organ donations were handled in a different manner. Because Nevada shared the local waiting region with northern California, Nevadans were at a disadvantage. There were 65,000 people on the United Network Organ Sharing (UNOS) waiting list for transplants and the number increased greatly every year. The number of people who became donors had remained stagnant and stayed at around 6,000, which equated to about 20,000 organs. So, less than one-third of the 65,000 individuals actually received transplants, the rest continued to wait for years and many died while waiting.

Ms. Smith discussed why directed donation would work well for Nevada. In the entire state 300 people were on the transplant waiting list. In northern Nevada, in the local region that included northern California, over 6,000 were on the waiting list. California always seemed to have more patients waiting who were sicker than Nevada patients. Last year 15 donors from northern Nevada, which had always been a pro-donation community, supplied 64 organs to California and were transplanted into California residents. When Ms. Smith’s group spoke to people about organ donation, directed donation gave Nevada another option; they could direct their organ or tissue to someone in need in northern Nevada.

Debbie Pinjuv identified herself and said she had been on the transplant list for over 2-1/2 years. Two months ago she had been flown to Stanford Medical Center in California, due to complications of her end-stage liver disease which caused a build up of poisons and ammonia that the liver was unable to detoxify.

Those poisons and ammonia entered the brain and in the worst case scenario one lapsed into a coma and died. She described the terrible symptoms associated with end-stage liver disease and while hospitalized was prepared for a liver transplant. Before that could happen, two California patients were admitted and she was told they would be receiving transplants instead. The doctors found a drug that stabilized her condition however the dosage was so high it ultimately caused kidney failure and deafness, in which case she would be a candidate for both liver and kidney transplants. Her doctors were trying to find her a liver before deafness occurred.

Ms. Pinjuv said there were 30 people in her liver transplant support group and her story was one of many, all were critically in need of organs. The alternative to receiving a donation was death, but that did not have to be if directed donations became a reality in northern Nevada. She asked the committee to support A.C.R. 19.

Chairman Freeman asked Assemblywoman Gibbons what would be the result of having the resolution passed in regard to public education and how would it be facilitated. Ms. Gibbons said Sandy Smith was setting up a base in Nevada to keep track of organ donors. Ms. Gibbons believed it was a cause that could be celebrated annually and when the legislative session ended she was committed to spending time and raising money to raise awareness. She explained she had not asked for legislation because she felt it would put attention on California and there might be punitive results. The desire behind A.C.R. 19 was to educate Nevadans, to have a donor base in Nevada from which they could draw.

Sandy Smith said her group was working with a living bank in Texas. When people signed up the information would come to the group’s office here and a registry would be maintained, ultimately the prospective donors would carry a card stating they were donors. There were also educational seminars in high schools, universities, malls, and so on.

Heidi Smith identified herself as a health insurance agent. She was waiting for a liver transplant. Her condition occurred as a result of contracting hepatitis C after a blood transfusion following a miscarriage in 1980. She was number 1 on the waiting list at Cal-Pacific, and number three on the United Network Organ Sharing (UNOS) list, but had received no call from California stating an organ was available. Someone from California always seemed to need the organ first. She pointed out not everyone who was dying looked like they were, many looked in reasonably good health, but the fact remained that person could die in their sleep; that was often the way it happened. The veins burst and the person bled to death. She said the people waiting did not “want to rile California” but would like to have Nevada take care of its own the same way that California took care of its own.

Assemblywoman Angle said she was concerned about the punitive ramifications of the bill that Ms. Gibbons mentioned, and would that set up an elitist idea that would make other states not want to put Nevadans’ names on their lists. Ms. Gibbons said it was already punitive against Nevadans; Californians were receiving the organs. She had brought the resolution forward to draw attention to the issue, there were plans for a much larger campaign in April, which was Donor Month, and included getting Governor Guinn involved. Attorney General Frankie Sue Del Papa sent a letter of support (EXHIBIT G) and was very involved with the organ donor program. The fact remained, if Nevadans in need could not look to Nevada first, she might lose three of her friends who testified today.

Heidi Smith said Nevadans would still be donating to California, however, with passage of A.C.R. 19 people would have the opportunity to say they would like to have their organ go to someone in Nevada. The desire was not to make California angry rather to have Nevada recognized as having a population in need of transplants.

Chairman Freeman recommended A.C.R. 19 be moved out and asked for a motion.

VICE CHAIRMAN KOIVISTO MOVED TO DO ADOPT A.C.R. 19.

ASSEMBLYWOMAN BUCKLEY SECONDED THE MOTION.

THE MOTION CARRIED UNANIMOUSLY.

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