Number 034 CHAIRMAN PORTER announced the committee would take up HB 323. HB 323 - RELEASE OF CERTAIN DEATH CERTIFICATE INFORMATION CSHB 323(JUD) am: "An Act relating to requests for anatomical gifts and to the release of certain information for the purpose of facilitating anatomical gifts." Number 049 REP. CYNTHIA TOOHEY, Prime Sponsor of HB 323, referred to the committee substitute (CS) and explained it changed one word on page 1, line 13, deleting "statistics" and adding "records." She gave the following statement to the committee: "Thank you for the opportunity to discuss HB 323. For purposes of presentation and discussion, I would ask that the committee adopt the CS which all members have in their file. "This bill would help facilitate organ and tissue donation. Over 300 tissue and organ transplants are anticipated this year. This includes tendon, bone, tissue, corneal, heart valve, and bone transplants. For the families who have donated the tissue or organs of their loved one, this can provide great consolation for that family to know one or several individuals have had quality of life improve because of the donation. "Currently, statute restricts the release of information from death certificates in the Bureau of Vital Statistics. In the case of organ and tissue donations, this may mean that potential donors are lost due to delay, since time is of the essence in harvesting the tissue. "HB 323 would enable a bank, storage facility, or person who handles procurement of anatomical gifts to obtain the necessary information from the Department of Health and Social Services (DHSS) within a time frame allowing for successful donation. "The information would be contained: 1. On the certificate 2. Collected by the Department for completing the certificate or, 3. In information from other vital human records. (The supplemental coroner's report is an example.) "To assure the most expedient process, obtaining this information from the medical examiner or the bureau prior to its officially appearing on the death certificate necessitates the broader definition. When a death occurs, the medical examiner is one of the first to know. The pertinent information would consist of: 1. The name of the person who could execute the anatomical gift. 2. The medical suitability of the potential donation. "In other words, this information would allow the person potentially procuring the donation to know: 1. If the tissue or organ was healthy. 2. Who to contact to obtain permission in a timely manner to allow successful harvesting. "The DHSS and the court system are strongly supportive of this legislation. It has two zero fiscal notes. The proposed CS is technical in nature and consists of changing one word. I believe the committee received an information sheet regarding the change, but I would be happy to address the proposed change if the committee wishes." REP. TOOHEY stated that JENS SAAKVITNE from Life, Alaska (via teleconference), DR. NAKAMURA from DHSS, and CHRIS CHRISTENSEN from the court system were there to respond to questions, too. Number 151 JENS SAAKVITNE, Director, Life Alaska, which is an Alaska based nonprofit tissue bank serving Alaska, testified in favor of HB 323. Mr. Saakvitne indicated that in 1993 Alaska had 87 tissue donors and they supplied a little over 200 tissue transplants to the state along with approximately 800 out-of-state, and some of the transplants included 40 corneal transplants, 150 tendons, a heart valve and a lower leg bone for transplant, along with knee and shoulder repair. Mr. Saakvitne said that of the decedents family Life Alaska has talked to and presented the option of donation, between 75 and (inaudible) agreed to donation, and those that agree to donation enter into a two year bereavement support group. He concluded that Life Alaska would make every opportunity to serve the community of Alaska, both as far as recipient needs and giving whatever support they can to the decedent's family. Number 208 JACK PHELPS, Legislative Aide, Rep. Pete Kott, testified on behalf of himself in opposition to certain portions of HB 323. Mr. Phelps indicated he was not testifying against the concept of organ donations; however, he shared with the committee his qualifications for why he wants to speak on another area of HB 232. Mr. Phelps explained that he is an ordained minister, although he's not currently working in that field, and he spent 15 years of his life as a minister and was commissioned as a Lt. Colonel in Brigade Chief of Chaplains in the Alaska State Militia and was appointed by Governor Cowper to serve on the general staff for two years as advisor on religious issues. MR. PHELPS said that during those 15 years he had a number of opportunities and the responsibility of dealing with families of the bereaved, and his concern with HB 323 as written is that one of its primary effects would be to allow organ banks or storage facilities direct access to the names of next of kin within the first 24 hours to ask them to agree to donate parts of their beloved loved one. Mr. Phelps indicated this is an extremely sensitive time for these people, and it worries him what effect this type of intrusion could have on their privacy at a time when they are in a very vulnerable situation. He said he wanted the committee to be aware of the fact that in current statute we require medical personnel to speak to the next of kin and let them know it is one of their options to donate organs and other tissues. He concluded that it is not as if people are not aware of this option, and it causes him a great deal of concern to think of organ and tissue bank personnel contacting people in their time of bereavement. Number 317 REP. TOOHEY commented that the speaker before her had hit on what the bill is, exactly; the object of the bill is to allow tissue procurement to happen within a viable time. She said if you wait for two or three days the tissue is no longer viable. Rep. Toohey asked Mr. Saakvitne to speak to this issue after hearing testimony from Dr. Nakamura. Number 328 DR. PETER NAKAMURA, Director, Division of Public Health, Department of Health and Social Services (DHSS), testified in support of HB 323. He said they have had, not only in the state of Alaska, but across the nation, a great deal of difficulty in getting enough human tissue for all surgical replacement needs. Dr. Nakamura explained that the reason they have not been able to participate in this program much in the past is that there is language within our legislation that doesn't allow the release of information that would allow the tissue program to have early access to the tissue in time to salvage the usable tissues. Dr. Nakamura said HB 323 allows the state of Alaska and Bureau of Vital Statistics to release the necessary information to allow this tissue to be harvested in time. Number 364 CHAIRMAN PORTER asked if current state law requires or allows a medical person that is attendant at the death to advise the next of kin of the opportunity to donate tissue. MR. PHELPS responded that the law requires it. REP. TOOHEY explained that she doesn't think Mr. Phelps is aware of the time frame, and sometimes getting the information on the death certificate takes up to four days or longer. She said as an emergency room nurse she has never had the opportunity to tell [the next of kin of] someone who has died that they need to consider tissue transplant. Rep. Toohey said it is not something the hospital does necessarily, although it is supposed to be policy, but to her knowledge it has never been done. Number 399 CHAIRMAN PORTER indicated that the bill would provide that a tissue facility would be able to have this information and consequently make a inquiry of the next of kin. He asked if that would be generally done in circumstances where there is a needy recipient, or if it would be done in general terms. Number 405 MR. SAAKVITNE replied that they do not need to tissue match and type tissues that way. There is normally not a specific recipient that the tissue is designated for, but there is a waiting list, and there is a sure guarantee that if humanly possible it would be used for transplant. Number 412 REP. KOTT indicated that state law requires hospitals to inquire about tissue donations, and a policy should already be in place for hospital personnel. He asked if next of kin are listed, and if so, what are the procedures for notifying the next of kin. Number 429 MR. SAAKVITNE responded that first, there are indeed statutory requirements for all hospitals to have policies and procedures that require donation information at the time of a death, but they are carried out rather infrequently, and it also doesn't address those individuals that die outside of a hospital. He indicated that of 41 families he spoke with over the last year and a half, 31 of those families have agreed to some type of donation, and he has yet to have a family for the request. Mr. Saakvitne pointed out the statute says the coroner may release the information, but is not required to do so, so if they start receiving complaints from families, the coroner can stop releasing the information. Number 464 CHAIRMAN PORTER asked how, step by step, it would work. Number 467 MR. SAAKVITNE replied that the coroner's office would continue to inform him of coroner's deaths, and they would make an assessment as far as age and medical suitability. Next, he or another trained counselor would contact the family and act as an information resource. He continued by saying they go over what decisions will be taking place over the next few days and inform them there may be an option of tissue donation, but inform them there is no wrong decision, and then leave a phone number and leave it to the family to call back. Mr. Saakvitne said about half the families immediately say donation is something they want; another 25 percent call back within a few hours; and the remainder either don't call at all, or they call for other information, but decide against donation. Number 492 REP. GREEN indicated he had a number of questions and asked, if they are short of tissue, how many people who might be potential donors die in the hospital as opposed to elsewhere? What is the prime age group for donors? What assurances are there that HB 323 won't become a body parts shop? How is the program working in other states? If the most likely group to provide tissue is the younger population, what happens if you can't find the next of kin in a timely manner? Is it reasonable to expect that you would receive the information in a timely manner? Number 533 MR. SAAKVITNE responded that not enough people are made aware of the tissue donation option. Although many people may have a donor card, out of the 87 donors last year, only four had donor cards that could be located. Number 501 DR. NAKAMURA responded, saying as far as the number of deaths outside a hospital, he couldn't give a figure, but the major causes of death in the state would be cancer, heart disease, and accidents. He continued by saying that if you go to the healthy population, those under 45, a disproportionate number die from accidents and violence outside of hospitals. Number 533 MR. SAAKVITNE indicated that more tissues can be used for plasma surgery from younger patients, and the overall age ranks from full term birth to 70, but age 45 or younger, many more tissues can be used. He responded in regards to the body shop question: of other states that have incorporated this, about 15 states, they have a coroner call-in system, and in all of those states it is never mandated that the coroner has to release the information. If families start to be abused or complaints come in, then it becomes the moral obligation of the coroner or departments of health to clean up their act or shut the organization down and no longer give out information. MR. SAAKVITNE said the only state he had personal involvement with was Colorado. The only problem he is aware of is that at times the coroners felt it was extra work and, once in awhile, viewed them as a minor pain bothering them for information. When he left there in 1989, he was unaware of any complaints from families. MR. SAAKVITNE then discussed the time question, and said in some cases they will not be able to reach the families in time to harvest tissue. Currently, there are a lot of cases where they don't have the chance at all, and HB 323 would probably double the number of cases where they are able to offer the families a reasonable donation option in a reasonable amount of time. Number 593 REP. KOTT suggested that if hospitals were in fact following the procedures in statute, wouldn't that take care of the back load? Number 610 MR. SAAKVITNE indicated that it would help, but would still not be enough. Number 615 REP. TOOHEY said if there is no immediate need in Alaska for tissue, it goes to a bank in Seattle and then it is sent everywhere in the Northwest, so the tissue does not go to waste. Number 630 MR. SAAKVITNE concurred and said all tissue is held for 30 days on reserve for Alaska; the exception is corneas, which have to be used within five days. There are certain tissues that are used 100 percent of the time in Alaska, such as tendons, but other tissues, such as heart valves, get used in the Northwest. Number 657 REP. KOTT asked Mr. Saakvitne what he was doing to ensure that he was not violating a person's religious beliefs. Number 665 MR. SAAKVITNE responded there are no major religions that are against organ or tissue donation; there are some cultural beliefs with the Gypsies and certain American Indian tribes, but no religious beliefs per se. He said, beyond that, they never try and talk a family into it. They simply inform them they have several options and donations is one of them, and there is no wrong decision. Number 670 REP. KOTT said if an individual was to carry a card at the time of death, indicating they did not want to be a donor, what would the subsequent action be. Number 673 MR. SAAKVITNE replied that they would never contact the family about donation if that was the case. Number 675 REP. GREEN asked if Alaska was considered an importer or exporter of tissues. Number 683 MR. SAAKVITNE responded that Alaska is an exporter of most tissues, but with certain things, such as corneas and tendons, we become importers. With heart valves, we are an exporter. He noted that within the next six months, Providence Hospital is going to start transplanting heart valves, rather than sending patients to Portland, and at that point Alaska will become an importer of heart valves also. REP. GREEN asked what the rejection rate is for tissue. Number 701 MR. SAAKVITNE said just about all the tissue they are transplanting does not have blood vessels, which reduces rejection by about 95 percent. Most of the other five percent is taken care of by freezing or freeze drying, which tends to destroy the immunological identity of tissues so when they are transplanted they are not recognized as foreign. REP. PHILLIPS moved to adopt the committee substitute. Hearing no objection, it was so moved. Number 720 REP. PHILLIPS moved that the committee move CSHB 323 out of committee with individual recommendations and zero fiscal notes. Hearing no objection, it was so ordered. CSHB 323(JUD) WAS MOVED OUT OF COMMITTEE WITH INDIVIDUAL RECOMMENDATIONS AND ZERO FISCAL NOTES