HB 214-ANATOMICAL GIFTS CHAIR WILSON announced that the next order of business would be HOUSE BILL NO. 214, "An Act relating to anatomical gifts and the anatomical gift donor registry program." 3:31:47 PM VANESSA TONDINI, Staff to Representative McGuire, Alaska State Legislature, reminded the committee that last year the legislature passed the anatomical gifts registry bill, which created an official organ donor registry program at the Department of Motor Vehicles. Through the program, she related, an organ donor's wishes are kept on record in a central database and are transferred to Life Alaska Donor Services, which is the state's organ and tissue donor program. She pointed out that Life Alaska matches the donor's gift to a potential recipient. She added that HB 214 makes simple, technical changes to existing law, furthers the intent of the original legislation, and continues to move the donor registry forward in the state. Furthermore, HB 214 works to make the donor registry more inclusive and offers expanded definitions that clarify the agencies responsible for donation within the state. She explained that it allows for increased notification for the people who are trained to do the actual recovery procedures, allows for greater donation potential, and clears up some inconsistencies between federal regulation and state law. CHAIR WILSON inquired as to the differences between federal and state laws. MS. TONDINI stated that the bill that was submitted last year was done so with the intent that the donor registry be operated from within the state and not controlled by an out-of-state agency and one of the changes is to allow access to both in- state and out-of-state procurement organizations. She explained that procurement organization is in AS "13.52.90" and AS 13.52.390 is defined as the organization designated by the U.S. Department of Health and Human Services. She said that the definition of "technician" is being changed, as it is currently too restrictive [in HB 214] and not in line with the laws of other states. She explained that the FDA defines a technician under "21CFR12.71.170" by requiring establishments to employ sufficient personnel with the necessary education, experience, and training to insure competent performance. She noted that AS 13.52.200(e) only addresses notification to the hospital and HB 214 will expand notification by allowing for law enforcement officers to contact a procurement organization directly. 3:37:59 PM REPRESENTATIVE MCGUIRE asked Bruce Zalneraitus to elaborate on a section of HB 214 where 42CFR482.45 was contradicted regarding the notification requirements. BRUCE ZALNERAITUS, Executive Director, Life Alaska, said that there is a national requirement to notify the procurement organization when there has been a death, including imminent deaths for the purpose of potential organ donation from a body with a beating heart. He explained that the "determination of suitability" is not the responsibility of the hospital and that the procurement organization would make necessary determinations. 3:39:22 PM REPRESENTATIVE GARDNER related her understanding that organ procurement organizations are federally defined and thus the term "organ" is being deleted in order to take the [state's program] out of the federal organ procurement organization. MR. ZALNERAITUS said that in this case it broadens the definition to include, an organization like Life Alaska, with an organ procurement organization that is based out of state. REPRESENTATIVE GARDNER clarified that Life Alaska is a procurement organization. She inquired as to why Alaska needs its own procurement organization when there are functioning regional [procurement] organizations around the country. 3:40:48 PM MR. ZALNERAITUS explained that, in Alaska, most donation is tissue donation. He related, "by having such an exclusion, to an organization that does not represent tissue donation out of state, we feel that would be misrepresenting all donation in Alaska of which organ and tissue are inclusive." REPRESENTATIVE GARDNER stated that the benefit to Alaska is that the tissue donation registry is in Alaska. MR. ZALNERAITUS clarified that it would be a donation registry, it is not distinct between organ and tissue. 3:41:43 PM REPRESENTATIVE MCGUIRE said that last year she worked hard with the Division of Motor Vehicles to get an organ and tissue donation registry in Alaska. As the bill that had been created to create this registry moved through the legislative process, the people controlling the regional organ donation programs offered amendments at the last minute, she related. She mentioned Life Center Northwest, a regional procurement organization, which demanded that Alaska's organ and tissue donation registry would have to go through it for approval. She explained that Life Center Northwest continued to request changes as the development of the registry occurred. She said: Right now, we are working with Senator Murkowski and Senator Stevens to actually get a separate category for Alaska, but for right now, what this bill does is it allows us to continue on in the efforts that we've done. We've increased our organ and tissue donation rates, up in the 80th percentile, we've had some phenomenal work going forward and I don't want that work to be threatened .... The intent all along was that Life Alaska, our only organ and tissue donation center, would be the group that would go ahead and make the decisions and help work with our Division of Motor Vehicles .... Again, Alaskans' expectation was that you use the resources of our Division of Motor Vehicles to work toward an Alaskan registry that benefits Alaskans and is controlled and maintained here, not somebody in Seattle, Washington, and so it is an issue that hits very close to home. 3:45:31 PM REPRESENTATIVE GARDNER pointed out that a team comes up from Washington to harvest organs in Alaska. Furthermore, organ transplants are not performed in Alaska. Since people in Alaska are not able to have organ transplants in Alaska, it makes sense to have the registry located where services occur, she opined. 3:46:18 PM MR. ZALNERAITUS clarified that the services are provided in both places. Furthermore, many tissue transplants occur in Alaska. 3:46:41 PM REPRESENTATIVE GARDNER asked if the information on [Alaska's] organ donation registry is available to the organ procurement organization. MR. ZALNERAITUS replied yes, adding that [the organ procurement organization] has full access to the registry to look up names of potential donors. 3:47:02 PM REPRESENTATIVE CISSNA expressed concern with regard to the notion of the cost being borne by Alaskan taxpayers, and then inquired as to what kinds of taxes Alaskan taxpayers would be required to pay [related to this legislation]. REPRESENTATIVE MCGUIRE reminded that the state of Alaska does not have a personal income tax, but that all of the businesses in Alaska pay an income tax. REPRESENTATIVE CISSNA interjected that the businesses wouldn't be paying the taxes on this. REPRESENTATIVE MCGUIRE clarified, "We are allowing a division of our government that we fund out of our general fund, which is in part a product of those taxes that Alaskans that own businesses, that own oil companies, that own small businesses, that pay into licensure and so on." REPRESENTATIVE CISSNA opined that it's really dangerous to talk about "Alaskan taxpayers" that way. 3:48:43 PM REPRESENTATIVE MCGUIRE said: Anytime we make a commitment to utilize government entities, government resources, it is my humble opinion ... that when we commit to utilizing our resources in this state, to help put together registries, to help whatever the project is, that we are committing Alaskan resources to do that. The Division of Motor Vehicles is funded in large part ... by the fees that we pay to get our driver's license .... My point is that when I put this bill through ... I made the pitch that I thought the overall benefit to Alaska and to Alaskans that could receive and donate organ and tissue was a good thing .... My intent in the bill was never that the registry would be housed outside of Alaska in Alaskan's control .... This legislation, right now, is technical in that it corrects parts of the bill that I meant to be there and in some cases didn't mean to be there .... I was trying to articulate the places where I feel I failed to carry out my intent. 3:51:40 PM CHAIR WILSON asked Mr. Zalneraitus to inform the committee regarding the importance of an Alaska-based registry. 3:51:52 PM MR. ZALNERAITUS said that there are both organ and tissue donations in Alaska, and Life Alaska's registry was designed for Alaskans to be represented within the state and had about 65,000 people on it. The intent of adopting the Alaska donor registry with the Division of Motor Vehicles was that registering would be easier, he related. He pointed out that the intent was also that the registry remain in Alaska and that the control and the operation of the registry stay within the state in order to take advantage of future opportunities including using the permanent fund for donor registration. CHAIR WILSON pointed out that in Alaska, accidents often happen in remote locations and thus it would be an extra expense for the [registry] in Seattle to come to Alaska versus Life Alaska doing it, which she estimated it could the majority of the time. 3:53:41 PM REPRESENTATIVE GARDNER applauded the efforts of encouraging more people to donate organs and tissue. However, she said she was puzzled by the cost involved with an Alaskan registry as the donated items are not only used in Alaska, but are available to the entire region. Similarly, Alaskans can receive transplants from other regions as well. She expressed concern with regard to the expense of establishing a registry when one already exists. Representative Gardner agreed that people could be encouraged to register through the DMV or the permanent fund application form, but they could register with the Western states' registry for no additional cost. MR. ZALNERAITUS stated that [Life Alaska] would bear that cost as they would be responsible to maintain the other registry. REPRESENTATIVE GARDNER inquired as to where the funding comes from to do registry maintenance. MR. ZALNERAITUS said that Life Alaska funds support the maintenance of the registry. In further response to Representative Gardner, Mr. Zalneraitus explained that Life Alaska would be responsible for the Alaskan portion of the registry in Alaska because Life Alaska would benefit from knowing who is on the registry. Therefore, there is a fee for Life Alaska to access the registry. He said: We are operating in Alaska, and if you're an Alaskan and let's say an example, that registry is located out of state, that registry costs money to build and to maintain and to continue to operate ... those [costs] are borne by the users of the registry. We are authorized to access the registry, not the public ... for the purpose of determining who's a donor ... and part of the actual statute is that "it shall only be used for the purpose of determining whether somebody is a donor." 3:56:48 PM CHAIR WILSON asked if other states pay to access the Seattle area [registry]. MR. ZALNERAITUS stated that he does not know what other states pay. REPRESENTATIVE GARDNER posed a situation in which her organs were available for harvesting and the hospital contacted the organ procurement organization. In such a case, would that cost Life Alaska anything, she asked. MR. ZALNERAITUS said that the costs involved in this are a result of accessing and maintaining the registry. He explained that Life Alaska is bearing the cost of the registry, as of now. REPRESENTATIVE GARDNER inquired as to why a second registry is necessary when Alaska can't harvest or transplant organs here. CHAIR WILSON clarified that very little of the harvesting that is done in Alaska is organs, it is mostly tissue. REPRESENTATIVE GARDNER surmised then that this is really targeting the harvesting of tissue. REPRESENTATIVE MCGUIRE said: Life Alaska, through their donations, does pay .... We have initiated in this state what's called "donated dollar" ... when you go to sign up to hopefully become an organ and tissue donor in Alaska ... the DMV asks you, "would you like to donate a dollar to Life Alaska to help support organ and tissue donation efforts?" ... it's mainly getting the word out .... 4:00:38 PM REPRESENTATIVE MCGUIRE opined that she didn't intend to create more work for law enforcement by requiring them to send the notification, which resulted in a fiscal note for postage, related supplies, etcetera. Therefore, she moved that the committee adopt Amendment 1, which would remove that notification requirement and thereby eliminate a fiscal note from HB 214. There being no objection, Amendment 1 was adopted. REPRESENTATIVE MCGUIRE moved to adopt [Conceptual] Amendment 2, as follows: Page 2, line 25: Delete "and a procurement organization" There being no objection, [Conceptual] Amendment 2 was adopted. REPRESENTATIVE ANDERSON moved to report HB 214, as amended, out of committee with individual recommendations and the attached zero fiscal note. There being no objection, CSHB 214(HES) was reported from the House Health, Education and Social Services Standing Committee.