HB 337-ANATOMICAL GIFTS REGISTRY Number 2154 CHAIR WILSON announced that the final order of business would be CS FOR HOUSE BILL NO. 337(STA), "An Act relating to anatomical donor registries, to an anatomical gift awareness fund, to an anatomical gift awareness program, to motor vehicle licenses and registrations, and to state identification cards." Chair Wilson reminded the members that the committee had a hearing on this bill last week and there was agreement that there needed [to be some changes in the language]. The sponsor of the bill has drafted an amendment to address the concerns of the committee, she said. Chair Wilson asked Mr. Hilyard to present Amendment 1. Number 2110 HEATH HILYARD, Staff to Representative Lesil McGuire, Alaska State Legislature, presented an amendment to CSHB 337(STA) for Representative McGuire, sponsor, and answered questions from the members. He told the committee he believes [Amendment 1] will clarify [and correct] any questions the members had during the last meeting. CHAIR WILSON told Mr. Hilyard that she would like the three portions of Amendment 1 to be handled as part A, B, and C. MR. HILYARD began discussion of Amendment 1, which read [original punctuation provided]: TECHNICAL AMENDMENT (Page 3, Lines 30-31) (b) The purposes of the fund [IS] are to promote gifts under AS 13.50.010 - 13.50.090 and to administer the donation program established under AS 13.50.150. CONCEPTUAL AMENDMENT (Page 4, Lines 12-14) (4) "motor vehicle document" means a motor vehicle registration, a driver's license, an instruction permit, or state identification, or a renewal of the registration, license, or permit; CONCEPTUAL AMENDMENT (Page 4, Lines 15-17) (5) "procurement organization" [MEANS A PERSON LICENSED, ACCREDITED, OR APPROVED UNDER THE LAWS OF A STATE FOR THE PROCUREMENT, DISTRIBUTION, OR STORAGE OF BODY PARTS] means an organization that has been designated by the United States Department of Health and Human Services to coordinate activities for the procurement of body parts, for any portion of this state; MR. HILYARD pointed out that [part A] which is a technical amendment is intended to correct a grammatical error on page 3, lines 30 and 31. He said Terry Bannister, Legislative Legal and Research Services, pointed out the necessity for the change. The wording is changed from the "purpose" of the fund "is" to the "purposes" of the fund "are", Mr. Hilyard said. CHAIR WILSON said in response to Representative Seaton's question as to the handling of the amendment, that it is her intention to handle these changes as one amendment unless the members have a problem with a portion of it. Number 2068 MR. HILYARD told the members that the next change [part B] is a conceptual [change] because it may need to be rephrased once the bill goes to Legislative Legal and Research Services for a revision. This change refers to page 4, lines 12 through 14, where motor vehicle document [adds] "or state identification." He said that language had been accidentally omitted and Terry Bannister pointed that out and suggested it be included to ensure the bill included all forms of motor vehicle documents. Number 2047 MR. HILYARD commented that [part C] is also a conceptual amendment which goes to the heart of the questions members discussed at the last meeting. On page 4, lines 15 through 17 which reads as follows: (5) "procurement organization" means a person licensed, accredited, or approved under the laws of a state for the procurement, distribution, or storage of body parts; MR. HILYARD explained that [part C] deletes the language currently in CSHB 337(STA), Version U, and replaces it and returns it to the original language that was in Version I. He added that Version I was the first version that was read across the House. What the bill will says is that [procurement organization] "means an organization that has been designated by the United States Department of Health and Human Services to coordinate activities for the procurement of body parts, for any portion of this state." He told the members that this wording has been cleared through Legislative Legal and Research Services, LifeCenter Northwest, and the [Department of Administration], Division of Motor Vehicles. Number 2012 REPRESENTATIVE SEATON moved Amendment 1. There being no objection, Amendment 1 was adopted. Number 1985 RAY VIDIC testified in support of HB 337. He told the committee that he has a friend who has been on dialysis for ten years. This bill is important because anytime there is an increase in donations, there is a reduction of suffering, and whoever receives an organ has their quality of life improved, he said. There are many people in the state of Alaska and the nation who are suffering because they are in need of an organ. MR. VIDIC gave a glimpse of his friend John's life. He has been on dialysis for ten years, has had last rites pronounced on him twice. He receives dialysis at home three times per week because he chooses to live in Juneau with his family, rather than [moving] somewhere where it can be done for free. Since the dialysis is done Monday, Wednesday, and Friday, there is a longer period of time between Friday and Monday and during that time he gains 20 pounds, he explained. He has a special insert in his arm for drawing the blood in and out. That insert has had to be moved twice, he said. Number 1940 MR. VIDIC told of two months of John's life. He was up in Anchorage and had to have seven-eighths of his thyroid removed because of a condition that results from being on dialysis. He was also bleeding rectally so he also had to have a colonoscopy. Because of his weakened state the doctor punctured his colon and had to have an emergency surgery where he had to have an [incision] from his breastplate down past his navel. On his way home in the Anchorage airport his stitches burst and had to return to the hospital. His son, who is 14 years old, had to handle the 911 call. MR. VIDIC told the members that this guy is a fighter. In ten years he hasn't complained. His life is good and he has his son, something to live for, Mr. Vidic said. He said that the committee's work will decrease the suffering of so many people like him. MR. VIDIC told the members that in his conversation with his friend, he found that while John has been on a list for 10 years; he has no idea who manages the list or where he is on the list. He is too busy trying to stay alive. Mr. Vidic summarized his comments by saying that if one life is saved because of this legislation, then the members have done a wonderful thing. Number 1846 REPRESENTATIVE WOLF commented that Mr. Vidic's testimony hits home to him because his wife's cousin needs a liver transplant. He added that she has been on a list for over 12 years. This is a good bill, he said. CHAIR WILSON encouraged [the members and public] to have their blood drawn and to register to be a donor. Number 1799 REPRESENTATIVE GATTO asked if there are age or disease limitations on being a donor. Number 1752 MR. VIDIC replied that he understands the limitations are set by the organ procurement providers. Hospitals will do a battery of tests both on the individual's physical and psychological health to see if the donation would be acceptable. Number 1752 CHAIR WILSON announced for the record that Representative Cissna is on-line. Number 1742 REPRESENTATIVE CISSNA commented that her late husband, Stan, had the kidney of a nine year old girl and it was the healthiest part of his body. It gave him nine years of life that was very rich, she said. She asked for clarification on the two ways in which a person gets on the [organ donor] registry. One is getting a blood test and signing up, and the other is to register through the DMV. She asked if one is more binding than the other. Number 1677 CHAIR WILSON explained that a person can get a blood test and when the registry is looking for a match, then that individual would be contacted. This [procedure] is with respect to live donation of a kidney, for instance. Chair Wilson clarified that this bill is really dealing with the situation where there has been a death [through an accident] and the troopers could identify that the [deceased] person is a donor because of the notation on the person's driver's license. REPRESENTATIVE CISSNA asked if the notation on the driver's license is as binding as the donor who has gone through the blood test and has gone to the registry. Number 1609 MR. HILYARD responded that in conversations with LifeCenter Northwest and DMV he found that the standard is that if there are two next of kin that will swear an affidavit that there had been a change in the individual's willingness to be an organ donor, then that would be grounds to contest the organ donation. Mr. Hilyard said he was told by LifeCenter Northwest that that situation does not occur that frequently. Many times once the organ procurement organization, such as LifeCenter Northwest, has had the ability to counsel with the family that frequently the organ donation intent is upheld and the organs are harvested. Mr. Hilyard pointed out that the information from the DMV is just being listed in the registry. The registry does not list their physical qualifications or any medical history. Number 1555 CHAIR WILSON pointed out that it is important to know as soon as possible if there will be an organ donation because there is a difference in how the body is taken care of. Number 1542 REPRESENTATIVE SEATON moved to report CSHB 337(HES) out of committee with individual recommendations and the accompanying fiscal notes. There being no objection, CSHB 337(HES) was reported from House Health, Education and Social Services Standing Committee.