Legislature(2003 - 2004)
01/20/2004 08:00 AM House STA
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* first hearing in first committee of referral
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HB 337-ANATOMICAL GIFTS REGISTRY [Contains discussion of HB 25.] Number 2743 CHAIR WEYHRAUCH announced that the next order of business was 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 2758 REPRESENTATIVE LESIL McGUIRE, Alaska State Legislature, as sponsor of HB 337, opined that, along with Representative Bruce Weyhrauch's HB 25, HB 337 is one of the most important bills the legislature will consider this year. The proposed legislation will authorize the creation of an organ donation registry. Number 2808 REPRESENTATIVE SEATON, upon request of the chair, moved to adopt the committee substitute (CS) for HB 337, Version 23-LS1257\Q, Bannister, 1/19/04, as a work draft. [There being no objection, Version Q was before the committee.] Number 2820 REPRESENTATIVE McGUIRE referred to the sponsor statement and noted that there are currently over 85 Alaskans awaiting organ donations. Organ donations save lives, she said, and HB 337 is an attempt at making the saving of lives easier. Currently, when an individual goes into the Division of Motor Vehicles (DMV), he or she may fill out a donor card and receive a sticker that is then affixed to that person's driver's license. She indicated that many people think that [the act of filling out that card and receiving that sticker is all they need to do]; however, that act does not officially put them in the anatomical donor registry system. She added that this widely misunderstood fact is sad because it results in lives being lost, because many valuable gifts are not realized. Representative McGuire said that unless people have their driver's license or state identification with the [sticker] on it with them at the time of their death, there is a good chance that their wishes will not be realized in time for an organ donation to be made. Number 2874 REPRESENTATIVE McGUIRE told the committee that HB 337 mirrors recent moves by the states of Washington and Montana toward creating a central registry that is kept by the DMV. The way this works, she explained, is that a person would go into the DMV and make an informed consent signatory that will recognize his or her wishes and automatically register him or her into the organ donation system. She clarified that this is an individual's choice and is completely voluntary. Representative McGuire outlined the following choices an individual would have concerning this issue: not register at all; get a donor card and sticker without being registered; or register with Life Alaska or online through LifeCenter Northwest. She explained that Life Alaska is the organ donation bank for the state of Alaska. REPRESENTATIVE McGUIRE turned to the language on page 4, [lines 6 and 7], which provides for a penalty for a person who knowingly violates the dissemination of this information. REPRESENTATIVE McGUIRE revealed that she has met with many folks who have been the recipients of organ transplants who are living healthy, happy lives. Those people are grateful for this legislation, she said. TAPE 04-04, SIDE B Number 2976 REPRESENTATIVE McGUIRE stated her belief that, as a result of legislation [in the State of Washington], approximately 80 percent of those who have gone to that state's DMV have decided to add their names to the organ donation registry. Currently, 90 percent of all the people who make some indication that they want to become an anatomical donor [do so at] the Division of Motor Vehicles. She clarified that many of us may think about becoming anatomical donors, but actually going out to Life Alaska or going online is "a whole 'nother step for many of us." She indicated that many people think about this issue for the first time when they come into the DMV, and [that's when they make their wishes known]. She stated that one of the most important things about making these kinds of decisions is that they be done with clarity, so that those who are left behind understand what it is that their deceased loved ones want done. HB 337 would make it possible for people to [sign] an informed consent in the DMV. REPRESENTATIVE McGUIRE offered to answer questions from the committee. She noted that there are others available to answer questions, as well. In particular, she said that she wants to publicly thank Duane Bannock from the DMV for his cooperation. REPRESENTATIVE McGUIRE added that HB 337 also makes a provision for the DMV to collect one dollar from those individuals who choose to donate it for the purpose of promoting the donation of [organs]. She said this [dollar donation] will go a long way toward: helping Life Alaska promote awareness about organ and tissue donation, helping in [the cost of] the preparation of the documents that will be disseminated at the DMV, and underwriting the cost of the registry itself. She stated her hope that HB 337 will end up funding itself. Number 2828 REPRESENTATIVE HOLM questioned the functionality of the bill in a state that is so vast and so difficult to get around in. He stated his understanding that Life Alaska is a great program, and he revealed that he is a tissue and organ donor who has [a sticker] on his license. He asked what the practical aspects of this are in Alaska. He stated that, in Alaska, the odds of someone getting a heart transplant with any speed probably would be "next to nil." Number 2788 REPRESENTATIVE McGUIRE stated that there is no better place than Alaska for all the reasons that Representative Holm just cited. Creating a central registry that can be accessed online is something that "we're hoping to do here," she said. Because of the vast geographical diversity of Alaska, it is difficult to access information. She stated that [the intent of the bill] is to allow healthcare providers to go to a central registry in a timely manner. As to the second part of Representative Holm's question regarding how likely it would be for an Alaskan to receive a heart transplant from another Alaskan, she said she cannot speak to the specifics on that. However, she noted that things like corneas and ligaments are widely used and given from one Alaskan to another. She stated that she thinks the prospect of having that available is exciting. REPRESENTATIVE McGUIRE reemphasized that unless a person has his or her driver's license on them at time of death, it is impossible for a healthcare facility to carry out that person's wishes, unless the deceased person's spouse, for example, knows with absolute certainty that he or she wanted to be an anatomical [organ] donor. REPRESENTATIVE HOLM revealed that his brother died at 38, and a boy in Houston, Texas, received "a kidney." He clarified that his question had been more about whether there are any facilities in Alaska that do "these types of operations." He stated his understanding that heart transplants are not done in Alaska, for example. Number 2646 CHAIR WEYHRAUCH shared that he knew of one instance where an infant in Juneau [died] after birth and the heart kept another infant in Texas alive. Number 2602 REPRESENTATIVE LYNN noted that, whereas Representative Holm has a sticker on his license, he has a card. He asked if it was the same thing. REPRESENTATIVE McGUIRE explained that the DMV in Anchorage, for example, gives the opportunity to get both [a card and a sticker]. Both serve as one indication of a person's wish. That information is only on the license and is not [in a central location, such as Life Alaska]. She stated, "The law today does not allow for that information to go anywhere." The proposed legislation is necessary to allow for the legal transfer of information from a state agency to a nonprofit organ and tissue bank. Representative McGuire repeated the previously mentioned three options [for people choosing whether or not to be organ donors]. She expressed her hope that people will choose to register [with Life Alaska or online with Life Center Northwest]. In response to a follow-up question from Representative Lynn, she reconfirmed that there is no linkage between [having a card or sticker on a license] and "any kind of system." Number 2490 CHAIR WEYHRAUCH asked if it is true that, currently, a person is not considered an organ donor unless he or she opts in to the system. REPRESENTATIVE McGUIRE answered that's correct. CHAIR WEYHRAUCH asked if HB 337 would change that to a person being in the organ donor system, unless he or she opts out. REPRESENTATIVE McGUIRE clarified that it is voluntary to opt in. Furthermore, HB 337 would add a provision to allow a person to remove him or herself from the registry. She noted that that provision is found on page 3, [lines 5-10], and it read as follows: Sec. 13.50.140. Notification of cancellation. (a) A donor whose motor vehicle document information is on a registry shall notify a procurement organization of the destruction or mutilation of the motor vehicle document or revocation of the gift under AS 13.50.050 in order to remove the donor's name from a registry. If the procurement organization that is notified does not maintain a registry, the organization shall notify all procurement organizations that do maintain a registry. REPRESENTATIVE McGUIRE noted that there are other systems in existence that make it so a person is [automatically] in that system unless he or she opts out, but she emphasized that she would never advocate for that regarding this issue. Number 2444 REPRESENTATIVE GRUENBERG suggested another more prevalent and widespread manner in which to get the message out would be to include a way to register [as an organ donor] in the application for the Alaska permanent fund dividend (PFD). He asked if Representative McGuire would consider that. Number 2320 REPRESENTATIVE McGUIRE stated that that possibility had been a consideration and she is not opposed to it; however, she chose to go forward with legislation that mirrored the models in Washington state and Montana, because they have been tested and are easily understood. She maintained that it might be easier, given that it is the second year of the Twenty-Third Legislative Session, to get this legislation on the books and allow it to go forward now, and consider "expansion" at a later date and time. Number 2313 REPRESENTATIVE GRUENBERG pointed to a letter from [Theresa L.] Bannister, [Legislative Counsel, Legislative Legal and Research Services], dated December 23, [2003, included in the committee packet], which he said refers to Section 13.50.160, subsection (d) - an "anti-sweep" provision. He turned to page 4 [of Version Q] and noted that the language there says that the money can go into the fund without further appropriation, but there is no anti-sweep language contained therein. He suggested that that may be something that could be taken up in the House Finance Committee. REPRESENTATIVE McGUIRE responded that HB 337 does have a referral to the House Finance Committee and she is looking forward to that hearing to discuss the idea of the fund itself and how that will work. Number 2220 REPRESENTATIVE GRUENBERG turned to the issue of privacy, and mentioned [AS] 13.50.110. He questioned how to ensure that Alaska's privacy concerns will be honored by those organizations that are not bound by Alaska State law, particularly when there is communication with procurement organizations in other states. He asked if [the legislature] can make a condition of information and organ transplant transfer that if [other states not bound by Alaska State law] participate with Alaska, they will honor Alaska's privacy requirements. REPRESENTATIVE McGUIRE brought attention to page 2, line 19, which read, "(b) A registry must include only residents of this state." She noted that one of the reasons for the penalty language in the proposed legislation is over concerns regarding the privacy issue. In response to a comment by Representative Gruenberg, she stated that one of the difficulties in a bill such as this is to avoid micromanaging or hindering the transfer of information [when] the result [could be] a loss of life. At the same time, she added, "You want to make it abundantly clear that the privacy of the folks in the registry needs to be maintained." She defined it as a delicate balance. REPRESENTATIVE GRUENBERG stated, "Normally, when you create a crime, ... it picks up a fiscal note." REPRESENTATIVE McGUIRE opined that it would not be a large fiscal note. She said she could not imagine [that] many people would be prosecuted for this. Number 2017 CHAIR WEYHRAUCH turned to page 1, [lines 11 and 12], which read as follows: Sec. 13.50.090. Short title. AS13.50.010 - 13.50.090 [THIS CHAPTER] may be cited as the Uniform Anatomical Gift Act. CHAIR WEYHRAUCH asked if Alaska has a Uniform Anatomical Gift Act, and he asked Representative McGuire if she can address that issue. REPRESENTATIVE McGUIRE answered that Alaska does have that Act, which is contained in statute, beginning with [AS]13.50.010. The [proposed] CS for HB 337 picks up a portion of that and makes changes; therefore, [AS 13.50.080 and AS 13.50.090] are changes to that Act. She indicated "13.50.100" and said, "In fact that's new language." To clarify, she stated that this bill would become a part of the Uniform Anatomical Gift Act. For the record, Representative McGuire read the revisor's note under that Act. Number 1859 JILL STEINHAUS, Director of Development, LifeCenter Northwest, first addressed the issue of privacy and the transfer of information. She assured the committee, "We've been through this process in both Washington [state] and Alaska in the 2003 legislative session." She noted two things: First, as previously mentioned by Representative McGuire, there are privacy concerns noted in the bill and a penalty for misuse of the information, which would be strongly followed by the procurement organizations in Alaska. Second, [LifeCenter Northwest] organizations are held to the same privacy and confidentiality standards as the hospitals; those standards are known as the HIPAA [Health Insurance Portability and Accountability Act] standards, under the federal government. There are stringent requirements regarding the transfer of information and [LifeCenter Northwest's] role in that. Privacy concerns are of the utmost consideration, she stated, and Alaska's private information would not be shared with other procurement organizations throughout the United States. MS. STEINHAUS mentioned Representative McGuire's previous comment that 85 individuals in Alaska are waiting for lifesaving organ transplants. On that note, she told the committee that in the last two months of 2003, [LifeCenter Northwest] facilitated 135 organ donors in the state of Washington. One hundred and six of those donors were the direct result of the donor registry system. She added, "So, we've seen great success and a significant increase in the number of lives saved." Number 1725 REPRESENTATIVE WEYHRAUCH revealed that he does not have an organ donor card, while Representative Lynn [has a card] and Representative Holm [has a sticker]. He asked how the bill would help current organ donors and how it would help people who are not yet donors. MS. STEINHAUS responded that HB 337 will streamline the process for an individual who has already made that decision. Because there will not only be the DMV as an access point, but also Life Alaska, LifeCenter [Northwest] and a web-based system, people throughout the community who have not yet made the decision to donate organs and tissues may obtain information from any of those places and, in their own time and space, can document their wishes in a way that is easiest and most accessible for them. Number 1615 CHAIR WEYHRAUCH offered a hypothetical situation, whereby a person has made a decision to be an organ donor, but his or her spouse disagrees with that intent. He asked what HB 337 would do to address that situation. MS. STEINHAUS replied that that is not an uncommon situation. She said the answer is twofold: First, if two people can say, without doubt, that the individual who has died had actually changed his or her mind and no longer wanted to be a donor, then the procurement organizations would not move forward with the process. Second, if a spouse simply disagrees with the now- deceased person's decision, but acknowledges that it was in fact that person's decision to be a donor, then members from Life Alaska and LifeCenter Northwest procurement organization will counsel members of the family and answer any questions that they may have, and help that person feel secure in the decision that the individual who has passed has made. This supports that individual's wish and supports the family through the grief process. She stated that that has been found to be a very successful [process], and often times a family's reluctance to move forward with the donation process is less about a disagreement with the decision to donate and more about "a disagreement with the process of death." CHAIR WEYHRAUCH asked Representative McGuire if she disagrees at all with Ms. Steinhaus's assessment. Number 1460 REPRESENTATIVE McGUIRE answered, "I do not disagree, as a matter of fact." She stated that these are delicate matters that occur regularly. She noted, "That is currently the state of the law, regardless," and she indicated that HB 337 would help clarify the issue. CHAIR WEYHRAUCH mentioned "the five wishes" and HB 25. He described a real-life situation that occurred in Florida, where a woman indicated the desire to donate her organs and she went into a coma. The parents disagreed with the spouse's decision and the legislature indicated that her feeding had to continue. He noted "a lot of times, bad facts make bad law." He asked how a situation would be dealt with when, for example, the husband and sibling of a victim support that victim's decision to be an organ donor, while the parents do not. REPRESENTATIVE McGUIRE noted that Ms. Steinhaus's previous statement regarding two individuals standing against a victim's being an organ donor was only in the situation where those two people had proof that the victim had actually changed his or her mind, not in the situation where those two people disagreed with the victim's choice. She surmised that in the former situation, the two people would have to supply written documentation or oral testimony that's "consistent with one another." CHAIR WEYHRAUCH suggested that the factors that would be weighed on a case-by-case basis would include: who is closest to the person who [registered to be a donor], how recently was the change in direction made, how credible is the kind of testimony, what sort of characteristics do "these people" have, and how did they get the information. REPRESENTATIVE McGUIRE said that's absolutely right. Number 1260 REPRESENTATIVE SEATON asked what effect a person's having a durable power of attorney might have. REPRESENTATIVE McGUIRE prefaced that she is not an expert in this area of law; however, she offered that her gut instinct was, "You better make sure your durable power of attorney is clear as to what matters they have power over." She applied this to anatomical donation and do not resuscitate orders, for example. She added, "You certainly don't want them trumping your opinion." Number 1186 REPRESENTATIVE COGHILL asked if people would just [be told about registering] the next time they reapply [for a license], or if they will be notified [sooner]. Number 1170 REPRESENTATIVE McGUIRE stated that Duane Bannock is a good resource regarding this subject. She noted that one exciting factor is that [DMV] will be converting to a digital licensing system. She explained that there will be a forced expiration on that, so that "everybody will have been through the system within 10 years." She admitted that 10 years is a long time. She indicated that Life Alaska would be making a public advocacy campaign. She shared her hope that any discussions the legislature has regarding HB 337 and any coverage thereof will "raise this to the issue," to let people know that the sticker on their license and the card in their wallet would be better served if they were part of the registry. Number 1041 REPRESENTATIVE GRUENBERG stated that it would seem if there was a durable power of attorney or a living will and it was "later in time than the organ donor card," then "that would prevail." He explained that, usually, in probate "it's the last expression of the deceased." REPRESENTATIVE McGUIRE agreed. She stated that that's why she thinks it's so important that a person be clear when executing these types of indications of his or her will. She said there are only a few hours to get a donated organ to the person that needs it, which is why this issue is so important. REPRESENTATIVE GRUENBERG opined that, at some point, [the legislature] needs to consider whether there needs to be a central registry for people's last wishes. Number 0950 BRUCE ZALNERAITIS, Executive Director, Life Alaska, told the committee that that organization began a voluntary donor registry in August of 2001, at which time it collected information - mainly from the DMV - through cards completed by patrons and sent back to Life Alaska. He said that [the information on those cards] was then entered by hand on a computer database. That database has grown since then and is now exceeding 53,000 Alaskans in the voluntary donor registry. He explained that although a registry exists, the mechanism by which it's completed and maintained is cumbersome. He stated his belief that HB 337 would address "a streamlining of that effort." MR. ZALNERAITIS told the committee that he has been [involved] in organ and tissue donation [matters] for 28 years and has come to know both the tragic circumstances of loss and the benefits and successes of transplantation. He stated that it is known - through surveys, polls, and campaigns - that most people in the United States would like to be donors. However, it is also known that when family members are not aware of their loved one's wish at the time of death, there is not the same rate of consent "as would be the case in the first person," because they are many times reluctant to make a decision on behalf of that loved one if they do not know his or her wish. Having a first- person consent registry [allows] individuals to affirm their desire to be a donor, provides for readily retrievable information through electronic means, and lets those family members know the wishes of their loved one who has died suddenly. He added, "And it is this mechanism that we find is one of the most beneficial aspects of a registry." Number 0650 REPRESENTATIVE GRUENBERG told the committee that he wears a lapel pin in the shape of a ribbon, that stands for organ donation. He offered his understanding that that pin had been put out by the federal Department of Health and Human Services. He asked if it would be possible to obtain a supply of the pins to distribute to other legislators. MS. STEINHAUS said yes. MR. ZALNERAITIS responded that he would be glad to assist in that request. REPRESENTATIVE GRUENBERG stated that [having those pins available for legislators to wear] would remind them "how good this bill is." Number 0534 CHAIR WEYHRAUCH asked how HB 337 would help streamline the data collection effort. MR. ZALNERAITIS responded that the documentation, as it currently stands, involves an individual attending a health fair, visiting the website and downloading a copy the registration documents, or going to the DMV and filling out a form that is then mailed back to Life Alaska. He reiterated that a [Life Alaska] staff person is assigned to transfer the written data into a computer database where the registry is currently maintained. He stated, "Having this done at the same time as registration for licensure would allow this to be done electronically and would facilitate a [streamlined] approach to that mechanism." He added that people who visit the DMV would be made aware of the possibility [to be an organ donor]. He noted that, over 70 percent of the time, people believe that they are on a registry because they hold a card or sticker from the DMV. CHAIR WEYHRAUCH asked which department would have jurisdiction over the program. MR. ZALNERAITIS responded that the collection would continue to occur at the DMV, but Life Alaska and LifeCenter Northwest, in partnership, would actually maintain the registry. In response to a follow-up question by Chair Weyhrauch, he clarified that the donor registration would be "within the organ and tissue procurement organization." CHAIR WEYHRAUCH said he would ask this question of a public official of the State of Alaska. Number 0203 REPRESENTATIVE GRUENBERG stated that the concept of a central health registry is an important issue that has tremendous implications. He opined that it is about time that the people of Alaska consider a voluntary health registry, where anybody who is in a life-threatening situation could have registered his or her last wishes, organ donation information, and emergency health information. He said that one number could be dialed from anywhere in the state to access this information. He asked Mr. Zalneraitis what he thinks of that idea. MR. ZALNERAITIS responded that he supports that. He stated that any mechanism that could increase the availability and access to information in an emergency is most desirable. Because the registry is electronic and web-based, it is accessible night or day, every day of the year. REPRESENTATIVE GRUENBERG asked if Mr. Zalneraitis is aware of any government in the world that has done that. MR. ZALNERAITIS answered that he is not aware of such a comprehensive registry. In response to a follow-up question by Representative Gruenberg, he said that although he is not a computer expert, he believes that the computer technology exists to collect that information. TAPE 04-05, SIDE A Number 0001 CHAIR WEYHRAUCH related his concern about [threat of computer] hackers. Number 0048 HEATH HILYARD, Staff to Representative Lesil McGuire, Alaska State Legislature, answering questions on behalf of Representative McGuire, sponsor, responded to Chair Weyhrauch's previously stated question regarding who would be the authorizing agency. He stated that the DMV's customer service locations would be the "point of interface" between those people applying for motor vehicle registration or license renewal. The DMV operates under the Department of Administration, a point that is identified "under the definitions." CHAIR WEYHRAUCH asked what jurisdiction or interaction the Department of Health & Social Services would have regarding HB 337. MR. HILYARD clarified that the definition of procurement organization has been changed in Version Q. The previous definition referred to an organization approved by the United States Department of Health & Human Services. He surmised that "therein lay the confusion." He offered his understanding that the Alaska Department of Health & Social Services "has any immediate interface." Number 0237 REPRESENTATIVE GRUENBERG turned to page 4, [lines 16-18], which read 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; REPRESENTATIVE GRUENBERG asked Mr. Hilyard if the State of Alaska currently has laws governing the procurement, distribution, or storage of body parts. MR. HILYARD offered that there is some governance under Chapter 13.50 [which is the Uniform Anatomical Gift Act]. He stated, "Essentially, this definition that's included is a definition that I have worked on with Representative Weyhrauch's staff member, with regard to ... HB 25." He said HB 25 has some "interface" with HB 337, and [the sponsor] is "trying to maintain a certain degree of consistency." He added, "So, that's the reason we chose that particular phraseology." He suggested that Life Alaska or LifeCenter Northwest may have some recommendations with respect to restructuring that definition. He offered his understanding that that language was used in the federal uniform Act. REPRESENTATIVE GRUENBERG asked if any part of HB 337 is dependent upon the passage of HB 25, or vice versa. MR. HILYARD offered his understanding that the answer to that question is no. He suggested that there could be a situation where revisors may have to make conforming changes with respect to statutory references after both bills pass; however, he restated his understanding that "one is not required for the other." REPRESENTATIVE GRUENBERG suggested that Chair Weyhrauch and Representative McGuire may want to enact and engraft some sections on each bill that would only take effect upon the passage of the other bill, so that they don't have to go through the revisor [process], which would delay [the bills] by at least another year]. CHAIR WEYHRAUCH said he would look into that. He noted for Mr. Hilyard's benefit that one of the fiscal notes accompanying the bill is from the Department of Health & Social Services. He said it does not look like it's the intent of [HB 337] or "its eventual effect" to cause a new fiscal note to be adopted by the Department of Health & Social Services. However, he added, "It probably requires a revisitation of this Department of Administration fiscal note, because it appears with a fund in here, which is probably why it has this [House Finance Committee] referral." MR. HILYARD revealed that he had not had the opportunity to review the fiscal note until this morning. He admitted that he was confused with respect to the Department of Health & Social Services fiscal note. He offered his understanding that [that fiscal note] refers to the [original] bill version, with respect to the procurement organization definition. Number 0562 DUANE BANNOCK, Director, Division of Motor Vehicles (DMV), Department of Administration, told the committee that the DMV is pleased to do its little part in the big picture, as it pertains to [HB 337]. He noted that Life Alaska has been asked to interact with DMV's scheduled training with its frontline workers, so that DMV can be giving accurate information and increasing the number [registered]. Mr. Bannock stated that HB 337 will help the way DMV processes information and the way that data is transmitted back to Life Alaska. It also incorporates some physical changes, as a result of the new digital driver's licenses. He offered to answer questions from the committee. Number 0721 CHAIR WEYHRAUCH announced that HB 337 was heard and held.
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