HB 337-ANATOMICAL GIFTS REGISTRY [Contains discussion of SB 78] CHAIR WILSON announced that first order of business would be HOUSE BILL NO. 337, "An Act relating to anatomical donor registries, to an anatomical gift awareness fund, to an anatomical gift awareness program, and to motor vehicle licenses and registrations." Number 0100 CHAIR WILSON stated that CSHB 337(STA) was before the committee. She told the members that this legislation will create a donor registry program in which a donor's Alaska driver's license/identification information can be transferred to Life Alaska Donor Services, the state's donor tissue program. She noted that several committee members had cosponsored this bill. Number 0152 REPRESENTATIVE LESIL McGUIRE, Alaska State Legislature, speaking as sponsor of HB 337, called attention to page 2, line 19, of CSHB 337(STA), and explained that subsection (b) simply restates language from subsection (c) of the original bill and also deletes subsection (b) of the original bill. She thanked Representative Seaton for his help during a previous meeting in clarifying that language in the bill was unnecessary and possibly confusing. Representative McGuire stated that this bill is going to save lives. She told the members that the bill was brought about by a lot of hard work by Life Alaska Donor Services, LifeCenter Northwest, and many physicians and nurses across Alaska. REPRESENTATIVE McGUIRE explained that Life Alaska Donor Services created the first organ and tissue donor registry in 2001; however, the only problem is that most people in Alaska don't know how to get their information to that registry; it's not a well-known fact. She said the Division of Motor Vehicles asks residents if they want to be an organ and tissue donor and many people agree to do it. An organ and tissue donor is provided with a sticker to put on his/her driver's license or is given a card, but unless that donor transfers that information to the Life Alaska Donor Services registry, it will not become part of the database. She said unless the donor's driver's license is on that person at the time of an accident, there is no way for [emergency] responders to know that person is an organ and tissue donor. She remarked, "What a travesty, because if you really are and that's your intent, you could have saved a life." Number 0375 REPRESENTATIVE McGUIRE explained that the bill authorizes the Division of Motor Vehicles to transfer information from a person who voluntarily decides to be a member of the organ and tissue donor registry. She clarified that three options are offered. The first option is to decline being a donor of organs and tissues. The second option is to agree to be a donor, but not to be part of the registry. There would be a sticker on the individual's driver's license, she added. The third option is the one Representative McGuire said she hopes Alaskans will choose, which is to agree to be a donor and participate in the registry. REPRESENTATIVE McGUIRE told the members that a similar bill passed in Washington State and there was an 86 percent increase in the registry. Representative McGuire said she hopes to see the same thing happen in Alaska. She explained that there are provisions in the bill to ensure that privacy is protected and that any misuse of the registry will result in a criminal penalty. Jill Steinhaus, Director of Development from LifeCenter Northwest, and testifiers from Life Alaska Donor Services will tell the committee that [misuse of the registry] has never occurred. Number 0504 REPRESENTATIVE McGUIRE pointed to one other provision in the bill called the "Donate a Dollar Program." She thanked Duane Bannock, who is the director of the Division of Motor Vehicles, for his work with the interim working group [in developing this legislation]. The way the program works is that donors may donate $1 toward the Organ and Tissue Donation Awareness Fund. These donations help to fund the brochures that are printed that inform people about organ and tissue donation. Representative McGuire said, for example, that she received a brochure in her recent utility bill that provided information about the donor program, how it saves lives, and how to register. Both Washington and Montana have passed similar bills, and it has been quite successful, she added. Number 0600 REPRESENTATIVE McGUIRE told the members that the final thing to note is that the State of Alaska is changing to a new license system. She explained that when individuals get their new digital driver's license, it will not be in the plastic coating as it is now; it will be similar to a credit card. If an individual agrees to be a donor, there will be a heart on the driver's license itself, rather than a sticker that could be rubbed off. On a legal note, she stated, this is the best possible way for an individual to convey his/her wishes to family in a final and legal way. Representative McGuire explained that in the past there were problems created when an individual wanted to be a donor, got a sticker, but was not listed in the registry. There was a potential for problems with family members who might contest whether it was really the individual's will or not; since the person was not in the registry, maybe the person had changed his/her mind. Number 0670 JILL STEINHAUS, Director of Development, LifeCenter Northwest, testified in support of HB 337 and answered questions from the members. She explained that LifeCenter Northwest works in cooperation with Life Alaska Donor Services to provide organ services in Alaska. This legislation will help to ensure that more Alaskans are able to make their wishes of donations known and ensures that more lives are able to be saved. She told the members that last year similar legislation passed both in Washington and Montana. In the last six months of 2003 there were 135 organ donors; 106 of them were a direct result of the donor designation or registry system. If this legislation passes this year, she stated, there will be a significant increase in the number of lives saved. Number 0783 REPRESENTATIVE COGHILL asked Representative McGuire about the Department of Health and Social Services' comments on the fiscal note. He said he surmises that the Division of Motor Vehicles would handle the information as it comes in; however, the Department of Health and Social Services was not sure if the department would be [the responsible agency for the donor registry]. Representative Coghill asked who would be responsible for the management of the registry and donation program. REPRESENTATIVE McGUIRE responded that the Division of Motor Vehicles would be the collector [of the funds] and would forward the money on to Life Alaska Donor Services. She told the members that the only role the Department of Health and Social Services will have in this program is certifying those organ and tissue donation centers that would be eligible to participate in the registry and be classified as such. An earlier version of the bill referred to a procurement organization, and it was decided that the Department of Health and Social Services would be the best department to make the delineation. REPRESENTATIVE COGHILL asked if there would be a cost in using the registry. For instance, would doctors or hospitals be charged a fee to access the registry, he asked. REPRESENTATIVE McGUIRE responded that there will be no cost to access the registry for those who are qualified to do so. She pointed out that the reason for the Donate a Dollar Program was to help offset the cost of maintaining the registry. REPRESENTATIVE COGHILL pointed to page 2, lines 27 and 28, where it says in part, "A procurement organization that has requested registry information from the department shall pay the reasonable costs associated with the creation by the organization of a registry". Who is this language referring to, he asked. Number 1069 HEATH HILYARD, Staff to Representative Lesil McGuire, Alaska State Legislature, testified on HB 337 and answered questions from the members. In response to Representative Coghill's inquiry, he said that he understands there will be a certain administrative cost associated with the setup of the registry. He added that this is distinctly different from the Donate a Dollar [Program] fund and the Anatomical Gift Awareness Fund, which is primarily designed to cover the costs associated with marketing materials. Mr. Hilyard explained that there was some discussion about the possibility of appropriating some funds coming from the Anatomical Gift Awareness Fund to help offset some of the costs in establishing the registry. There is no definitive answer on that yet. The Donate a Dollar Program is primarily used for the production of marketing materials, he said. REPRESENTATIVE COGHILL asked for clarification on who will be responsible for paying for the creation of the registry. Number 1080 MS. STEINHAUS said in response to Representative Coghill's question that the language he referred to is in place to ensure that the Alaska state government is not responsible for the funding [of the creation and maintenance] of the registry. The procurement organizations that provides services in Alaska will be responsible for this funding. Ms. Steinhaus explained that the organization she represents, LifeCenter Northwest, will pay 100 percent of the development cost of getting the registry up and running, and of maintaining the system in Alaska. Number 1134 MS. STEINHAUS said in response to a further question that there will be a billing process established that does not impact the [Division of Motor Vehicles]. Number 1159 DUANE BANNOCK, Director, Division of Motor Vehicles, Department of Administration, testified in support of HB 337. He commented that the Division of Motor Vehicles will be responsible for the creation of the data transmission and has estimated the approximate cost to be $7,000. Mr. Bannock summarized that there will be no net cost to the State of Alaska as a result of this [registry]. Number 1204 REPRESENTATIVE CISSNA asked for clarification of the roles of the Department of Transportation and Public Facilities, the Department of Health and Social Services, and the Department of Administration. She referred to page 2, line 12 through the end of the page. Representative Cissna commented that she would like to know that state employees will not be overburdened. Number 1283 REPRESENTATIVE McGUIRE responded that this is not as complicated as it appears. She explained that the reason the Department of Administration is mentioned is due to the fact that the Division of Motor Vehicles is under the umbrella of that department. She reiterated that it is the Division of Motor Vehicles that will be the collector of the money and that will maintain the registry. She went on to explain that it is not the state Department of Health and Social Services, but the U.S. Department of Health and Human Services that will be making the determination as to whether or not an organization qualifies to be a procurement organization for tissue and organ donors. It is very important that these centers apply through the [U.S.] [Department of] Health and Human Services. She summarized that there is no state Department of Health and Social Services impact, only the Department of Administration, Division of Motor Vehicles. REPRESENTATIVE McGUIRE responded to Representative Cissna concern for staffing by saying that Duane Bannock has been involved in the development of this bill for that very reason. She told the members that he'd thought this through and determined that he and the staff were willing to do this as long as the costs associated with establishing the registry were paid for by the procurement organizations. Representative McGuire explained that when a person goes into the Division of Motor Vehicles [to get a driver's license] there is already a list of questions that must be answered, so that is an action that already occurs. What this [legislation] would do is add an additional question. The additional effort that will be required to do this is negligible, she added. Number 1445 CHAIR WILSON referred to page 4, line 16, where it says "approved under the laws of the state". She asked for clarification that the state is not the accrediting authority, but that the U.S. Department of Health and Human Services is. REPRESENTATIVE McGUIRE responded that the original version had language which gave the authority for accreditation [through the U.S. Department of Health and Human Services]; this version does not. The committee took an at-ease from 3:29 p.m. to 3:36 p.m. CHAIR WILSON announced that HB 337 will be held over.