ALASKA STATE LEGISLATURE  HOUSE HEALTH, EDUCATION AND SOCIAL SERVICES STANDING COMMITTEE  April 26, 2005 3:33 p.m. MEMBERS PRESENT Representative Peggy Wilson, Chair Representative Tom Anderson Representative Lesil McGuire Representative Sharon Cissna Representative Berta Gardner MEMBERS ABSENT  Representative Paul Seaton, Vice Chair Representative Vic Kohring COMMITTEE CALENDAR    CONFIRMATION HEARING(S) University of Alaska Board of Regents Jacob S. Gondek - Anchorage - CONFIRMATION(S) ADVANCED HOUSE CONCURRENT RESOLUTION NO. 11 Proclaiming July 24, 2005, as Parents' Day. - MOVED HCR 11 OUT OF COMMITTEE HOUSE JOINT RESOLUTION NO. 20 Urging the United States Congress and the United States Food and Drug Administration to assist in the prompt approval of new drug applications for the treatment of prostate cancer. - MOVED HJR 20 OUT OF COMMITTEE HOUSE BILL NO. 114 "An Act relating to the retaining of certain privileges of a parent in a relinquishment and termination of a parent and child relationship proceeding; relating to eligibility for permanent fund dividends for certain children in the custody of the state; relating to child in need of aid proceedings and juvenile delinquency proceedings; and providing for an effective date." - HEARD AND HELD PREVIOUS COMMITTEE ACTION BILL: HCR 11 SHORT TITLE: PARENTS' DAY SPONSOR(S): REPRESENTATIVE(S) CISSNA 04/22/05 (H) READ THE FIRST TIME - REFERRALS 04/22/05 (H) HES 04/26/05 (H) HES AT 3:00 PM CAPITOL 106 BILL: HJR 20 SHORT TITLE: PROSTATE CANCER DRUGS SPONSOR(S): REPRESENTATIVE(S) GATTO 04/21/05 (H) READ THE FIRST TIME - REFERRALS 04/21/05 (H) HES 04/26/05 (H) HES AT 3:00 PM CAPITOL 106 BILL: HB 114 SHORT TITLE: TERM. PARENTAL RTS/CINA/DELINQUENCY CASES SPONSOR(S): RULES BY REQUEST OF THE GOVERNOR 01/26/05 (H) READ THE FIRST TIME - REFERRALS 01/26/05 (H) STA, HES, JUD 03/01/05 (H) STA AT 8:00 AM CAPITOL 106 03/01/05 (H) Heard & Held 03/01/05 (H) MINUTE(STA) 03/05/05 (H) STA AT 8:30 AM CAPITOL 106 03/05/05 (H) 03/05/05 (H) STA AT 9:30 AM CAPITOL 106 03/05/05 (H) Heard & Held 03/05/05 (H) MINUTE(STA) 03/15/05 (H) STA AT 8:00 AM CAPITOL 106 03/15/05 (H) Scheduled But Not Heard 03/19/05 (H) STA AT 9:00 AM CAPITOL 106 03/19/05 (H) 03/19/05 (H) STA AT 9:30 AM CAPITOL 106 03/19/05 (H) Scheduled But Not Heard 03/22/05 (H) STA AT 7:45 AM CAPITOL 106 03/22/05 (H) 03/22/05 (H) STA AT 8:00 AM CAPITOL 106 03/22/05 (H) Moved CSHB 114(STA) Out of Committee 03/22/05 (H) MINUTE(STA) 03/23/05 (H) STA RPT CS(STA) NT 5DP 2NR 03/23/05 (H) DP: GARDNER, GATTO, ELKINS, GRUENBERG, SEATON; 03/23/05 (H) NR: LYNN, RAMRAS 04/22/05 (H) MINUTE(HES) 04/26/05 (H) HES AT 3:00 PM CAPITOL 106 WITNESS REGISTER JACOB S. GONDEK, Appointee to the University of Alaska Board of Regents Anchorage, Alaska POSITION STATEMENT: Testified as appointee to the University of Alaska Board of Regents. EUGENE HARNETT, Staff to Representative Tom Anderson Alaska State Legislature Juneau, Alaska POSITION STATEMENT: During discussion of HCR 11, provided comments as chairman of the "Alaska Parents' Day Committee." REPRESENTATIVE CARL GATTO Alaska State Legislature Juneau, Alaska POSITION STATEMENT: Sponsor of HJR 20. DALE SNELSON, Chapter Leader Us TOO Mat-Su Valley; Regional Director Us TOO International, Inc. Palmer, Alaska POSITION STATEMENT: Provided comments during discussion of HJR 20. MARK MOYAD, M.D., Director Phillip Jenkins Endowment University of Michigan Ann Arbor, Michigan POSITION STATEMENT: During discussion of HJR 20, provided comments and responded to questions. STEVEN P. ASHMAN, Director Division of Senior and Disabilities Services Department of Health and Social Services (DHSS) Juneau, Alaska POSITION STATEMENT: Provided comments and responded to questions during discussion of HB 114. ACTION NARRATIVE CHAIR PEGGY WILSON called the House Health, Education and Social Services Standing Committee meeting to order at 3:33:52 PM. Representatives Wilson, Anderson, Cissna, and Gardner were present at the call to order. Representatives McGuire arrived as the meeting was in progress. ^CONFIRMATION HEARING(S) ^University of Alaska Board of Regents CHAIR WILSON announced that the committee would first consider the appointment of Jacob S. Gondek to the University of Alaska Board of Regents. 3:35:04 PM JACOB S. GONDEK, Appointee to the University of Alaska Board of Regents, in response to the question of why he feels he is qualified for an appointment to the University of Alaska Board of Regents, relayed that he has served in several leadership positions at the University of Alaska Anchorage (UAA) over the last few of years. [Much of his testimony was indiscernible due to problems with the teleconference system.] He relayed that he currently holds the position of Student Ombudsman at UAA, and has sat on the UAA Chancellor Search Committee. CHAIR WILSON characterized Mr. Gondek's community and public service record as impressive. REPRESENTATIVE GARDNER concurred, and asked Mr. Gondek what he would like to see the University of Alaska Board of Regents accomplish in the next few years. MR. GONDEK said that giving consideration to the "master plans" of each campus in the university system would be his key focus. REPRESENTATIVE CISSNA said she has concerns about the UAA campus and about how all of the campuses work together. She made mention of the science facility at the UAA, the region's various health facilities, and the issues of sustainability and job/career placement. 3:40:14 PM MR. GONDEK characterized the science laboratory as an excellent building, and opined that it is very important to keep students involved in local community activities. REPRESENTATIVE GARDNER offered her belief that a growing number of youths are staying in Alaska for their college education, and asked Mr. Gondek whether he had any ideas for furthering this trend. MR. GONDEK characterized the expansion of the engineering program as a huge boost to the economy, particularly given the huge demand in the state for engineering services, and said that scholarships provide great opportunities for Alaskans to stay in Alaska while getting their college education, though the increase in tuition rates does have an impact. He mentioned that expanding public awareness of what the UAA has to offer those just getting out of high school could also further that trend. 3:43:27 PM REPRESENTATIVE GARDNER made a motion to advance from committee the nomination of Jacob S. Gondek to the University of Alaska Board of Regents. REPRESENTATIVE GARDNER then withdrew the motion for the purpose of awaiting the formation of a quorum. The committee took an at-ease from 3:45 p.m. to 3:52 p.m. 3:52:05 PM REPRESENTATIVE GARDNER restated the motion to advance from committee the nomination of Jacob S. Gondek to the University of Alaska Board of Regents. There being no objection, the confirmation was advanced from the House Health, Education and Social Services Standing Committee. HCR 11 - PARENTS' DAY CHAIR WILSON announced that the next order of business would be HOUSE CONCURRENT RESOLUTION NO. 11, Proclaiming July 24, 2005, as Parents' Day. 3:53:25 PM REPRESENTATIVE CISSNA, speaking as the sponsor, explained that HCR 11 proclaims July 24, 2005, to be Parents' Day. She then spoke of the importance of parents, of the fact that Parents' Day would be a public celebration within Alaskan communities, and of the existence of a group in Alaska that seeks out nominations for Parent of the Year. 3:56:26 PM EUGENE HARNETT, Staff to Representative Tom Anderson, Alaska State Legislature, relayed that he serves [and would be speaking] as chairman of the "Alaska Parents' Day Committee." He went on to say: This is our 11th year. [The] Parents' Day Committee has been sponsoring public celebration of parents in Anchorage, and we have a big outdoor barbeque; the mayor comes, [the] governor comes, public officials come, members of the legislature [come]. Representative Cissna ... has supported it and participated in it for the last several years. ... Each year our committee chooses Alaska Parents of the Year, and we also choose awardees for excellence in parenting, and of course we honor all those parents that are nominated. We give them a congressional certificate signed by ... Congressman Don Young. ... It's becoming bigger and bigger, as a public event, each year which is one reason why I think this resolution is so pertinent. First of all, I want to especially thank Representative Cissna for introducing this resolution, and also ... Representative Anderson for letting me work on it, and those who have signed it as co-sponsors - thank you very much. This really tells that the legislature of Alaska ... recognizes the role parents play in the public life. And ultimately, in developing public policy, I believe parents play a big role because they inculcate the values that we as adults live by. And parents operate behind the scenes, unnoticed, ... and this is an opportunity to say ..., "We recognize parents all the time, fundamentally, and it's important to note that." This is a holiday much like Mother's Day and Father's Day, but it is more, as Representative Cissna alluded to; Parents' Day is not just a time to celebrate, but also to make a statement that underscores the vital role parents play in the lives of our children, and really in the stability of our society. So this holiday, Parents' Day, was originally established by Congress in 1994 as [a] reoccurring holiday. I remember when it was first discussed; I walked into Don Young's office here in Anchorage, and his secretary ... said, "Oh, no, they're not making any more new holidays." MR. HARNETT continued: Well this holiday did get passed unanimously by Congress and signed by the President, and it was bipartisan. I think that's one of the things that has struck me over the years, that honoring parents is not a political issue - this is really refreshing. And I'm so glad that the state of Alaska [is], at this time, officially recognizing this with a resolution. We've had proclamations from the governor every year, but this is really better, from the legislature, and I understand it's only for this year. Maybe in the future, ... we [would] certainly like to see this established as a permanent holiday, but thank you again for doing this to honor Parents' Day in Alaska. I think it's a well-placed effort. REPRESENTATIVE GARDNER sought confirmation that the sponsor only intended to have the resolution apply to this year. REPRESENTATIVE CISSNA confirmed that that is her intention. REPRESENTATIVE ANDERSON surmised that a statutory change would be required in order to have Parents' Day automatically recognized yearly. REPRESENTATIVE GARDNER moved to report HCR 11 out of committee [with individual recommendations and the accompanying fiscal note]. There being no objection, HCR 11 was reported out of the House Health, Education and Social Services Standing Committee. HJR 20 - PROSTATE CANCER DRUGS CHAIR WILSON announced that the next order of business would be HOUSE JOINT RESOLUTION NO. 20, Urging the United States Congress and the United States Food and Drug Administration to assist in the prompt approval of new drug applications for the treatment of prostate cancer. 4:01:03 PM REPRESENTATIVE CARL GATTO, Alaska State Legislature, sponsor of HJR 20, stated that as a survivor [of prostate cancer] he sponsored this resolution because of the complete absence of drugs available. He said he is interested in the management and identification of cancer, and commented that there are few, if any, drugs used in the treatment of prostate cancer. He mentioned that there are certain drugs that are being studied that could aid in treating prostate cancer, and this legislation may serve to encourage the federal government to make more drugs available [for prostate cancer patients]. He offered his understanding that 5 people a day in Alaska contract cancer, and that 25 people die every year from prostate cancer. 4:04:13 PM REPRESENTATIVE GARDNER noted that the sponsor statement appears to have a discrepancy. REPRESENTATIVE GATTO relayed that he'd meant the sponsor statement to indicate that this year, the expectation is that 5 people will die every day from cancer, and that 25 of those people will die specifically from prostate cancer. REPRESENTATIVE GARDNER commented that according to her understanding, if men live long enough, most will develop prostate cancer. REPRESENTATIVE GATTO concurred, and said that when autopsies are performed on victims of car accidents, all the men are found to have [prostate cancer]. He made mention of various methods of treatment currently available. CHAIR WILSON commented that she was shocked to read the "Whereas" clause on page 1, lines 13-14, which claims that $16.9 billion in productivity is lost every year due to prostate cancer. 4:06:29 PM DALE SNELSON, Chapter Leader, Us TOO Mat-Su Valley; Regional Director, Us TOO International, Inc., first related the story of his discovery of having developed prostate cancer and opting to have his prostate removed. He said: We don't really have the drugs to fight it. ... It's a deadly disease, it's the most solid tumor that the human body can conceive. ... About 75 percent of it is very slow moving. For ... example, [for men] 65 years old, ... 65 percent of the men will have [prostate cancer] ... but not die from it. [For men] 80 years old, 82 percent will have and not die from it. But then on the flip [side], we have the 20 percent, and I'm in that 20 percent group. If I would have not [had a] prostatectomy a year ago March, I would have been gone - dead - by now. ... Worldwide, research and development on prostate cancer is just going like wildfire. ... Prostate cancer is a silent killer ..., and it's amazing how many men don't even know what a prostate is - it is very, very deadly. ... If you catch it early ..., they can do a lot of things and you will live. ... Alaskans [are] really hard to penetrate as far as [spreading awareness of] ... prostate cancer, and ... [so] we're really working on awareness programs now; we are going to start soliciting our blue magnetic ribbon - ... when people see those they'll say, "prostate." ... MR. SNELSON commented on the reluctance of a man to go to the doctor, and on how it often ends up being his wife that insists he visit the doctor. He detailed some of the history of Us TOO International, Inc., and Alaska's chapters. 4:11:15 PM MARK MOYAD, M.D., Director, Phillip Jenkins Endowment, University of Michigan, said that he thinks he has a unique relationship with the people in Alaska because he recently visited Juneau and spoke at the Men's Health Fair, and has gone to Anchorage each year for almost the last ten years in a row and spoken before [Anchorage's] "prostate group." During the past year, he relayed, one of the leaders of the prostate group, a man in his early fifties, passed away from prostate cancer. Dr. Moyad went on to say that the main problem currently is a lack of access to promising treatments. He relayed that he'd promised the aforementioned gentleman's widow that he would get involved in the process of trying to educate men with regard to what is likely to be an issue for them and to how they should be giving serious consideration to the issue of prostate cancer. DR. MOYAD noted that although the "early access program" - or "compassionate use program" - is available in cases involving breast cancer or colorectal cancer, it is not available in cases involving prostate cancer. He said "we" would love it if people around the world could have access to new targeted therapies, therapies that could potentially help advanced patients while having a low rate of side effects. He made mention of one promising drug for which the biggest side effects appears to be a runny nose or headache. Unfortunately, younger prostate cancer patients are also affected by not having access to targeted therapies, and although prostate cancer has developed the reputation of having more people die with it than from it, the problem with that line of thinking is that it belittles the facts that it is the second leading cause of cancer death in men, that about 28,000 to 30,000 men still continue to die from prostate cancer in this country alone, and that a lot of those men are younger. DR. MOYAD reiterated that getting access to promising treatments is a real problem, adding that he doesn't know of any other cancer that has more of a problem with regard to accessing treatment. CHAIR WILSON asked why the rate [of prostate cancer] is increasing. DR. MOYAD surmised that age, race, lifestyle, and genetics increase the risk factors significantly. He noted that if one looks at countries that have low rates of prostate cancer, when people from those counties move to the United States, within one generation they experience the same increasing levels of risk as Americans. And while a lot of people have used that statistic to say that the increased risk is due to the American environment, the American diet, and the American lifestyle, he also thinks that part of the problem can be traced back to a genetic factor, particularly since it's not unusual to see prostate cancer in two or three generations of a family. 4:17:33 PM DR. MOYAD, in response to the question of why he thinks early access programs or compassionate use programs are not available for prostate cancer drugs, surmised that it could in part be due to the fact that there hasn't yet been a large-scale, passionate movement to address the issues and educate people about the issues associated with this type of cancer, whereas there have been such efforts made regarding breast cancer, colorectal cancer, and cancers associated with human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS). He said he sees that state of affair changing, though, and relayed that Betty Ford once told him: "I do believe in my heart that ... when I was diagnosed with breast cancer in the early '70s, there was no real movement and there were no real educational materials, and ... look what's happened in 30 years. ... I know you get frustrated with prostate cancer sometimes but I think you'll see that change." DR. MOYAD said he now sees more support groups, more people getting involved politically, and more people getting involved in asking for more research dollars, though it's been a slow transition and there is still a great deal more to be accomplished scientifically as well as politically. 4:20:35 PM DR. MOYAD, in response to further comments and questions, pointed out that there are many similarities between breast and prostate cancers in terms of genetics and treatment; for example, primary treatment for both cancers involve hormone therapy. He suggested that one difference in drug development for the two types of cancers might be that the average age for the diagnosis of prostate cancer has been a few years higher than for breast cancer, and there is already an awareness that breast cancer can be a younger person's disease. He added that he is excited by the fact that the development of breast cancer drugs will aid the development of prostate cancer drugs. MR. SNELSON concurred with Dr. Moyad's comments, added that more and more young men - men in their 30s and 40s - are falling victim to prostate cancer, and emphasized the need for early detection of prostate cancer. 4:25:23 PM REPRESENTATIVE GATTO asked Dr. Moyad to comment on two new drug therapies that he's recently become aware of - "Xinlay" and "Provenge." DR. MOYAD said that Provenge is a vaccine and is given three times as an injection. He opined that the benefits [of Provenge] outweigh the risks and that it may be the first vaccine that could actually allow cancer patients to live longer. He said that as new drugs are developed to help patients with more advanced stages of the disease, one of the questions that arises is what would happen if some of the more benign treatments were tried early on - would doing such result in avoiding harsher treatments or perhaps even in preventing the disease to begin with? He went on to mention some of the possible side effects of [Provenge and Xinlay] treatment. He spoke of his frustration regarding the amount of time it is taking for HJR 20 to move through the process, but also expressed his belief that the resolution is doing a lot to raise awareness of the issue of prostate cancer and its treatments. 4:27:39 PM REPRESENTATIVE ANDERSON moved to report HJR 20 out of committee with individual recommendations and the accompanying fiscal note. There being no objection, HJR 20 was reported from the House Health, Education and Social Services Standing Committee. HB 114 - TERM. PARENTAL RTS/CINA/DELINQUENCY CASES [Contains mention of HB 193.] CHAIR WILSON announced that the next order of business would be HOUSE BILL NO. 114 "An Act relating to the retaining of certain privileges of a parent in a relinquishment and termination of a parent and child relationship proceeding; relating to eligibility for permanent fund dividends for certain children in the custody of the state; relating to child in need of aid proceedings and juvenile delinquency proceedings; and providing for an effective date." [Before the committee was CSHB 114(STA).] [Although the House Health, Education and Social Services Standing Committee heard, amended, and reported HB 114 out of committee on 4/22/05, the bill had not been noticed for a hearing.] 4:28:59 PM CHAIR WILSON explained that although the committee had decided to insert certain language into [CSHB 114(STA)] last week, she has since been notified by Legislative Legal and Research Services that the title of the bill precludes the insertion of that language. Therefore, she is having Legislative Legal and Research Services draft a new bill, which will be introduced as a committee bill and which will contain the language the committee agreed upon last week. REPRESENTATIVE ANDERSON referred to proposed language authorizing the Department of Health and Social Services (DHSS) to promulgate emergency regulations pertaining to the personal allowance of those residing in assisted living homes. He surmised that that proposed language would be included in the forthcoming new committee bill. CHAIR WILSON offered her belief that that proposed language was instead included in HB 193. AN UNIDENTIFIED SPEAKER said, "No." REPRESENTATIVE ANDERSON relayed his understanding that the DHSS preferred to address that issue via budgetary authorization, and that the DHSS recently presented the Senate Finance Committee with an $18 million supplemental budget request "and the request for Medicaid under the Division of Senior and Disabilities Services." He questioned why the DHSS didn't simply amend its request to cover any additional needs and thereby bypass the need to promulgate emergency regulations on the aforementioned issue. The committee took an at-ease from 4:33 p.m. to 4:38 p.m. CHAIR WILSON, in response to further comments, offered her understanding that the DHSS felt it couldn't amend its supplemental budget unless either more money was put into [its] budget or funds were taken from some other program. 4:39:45 PM STEVEN P. ASHMAN, Director, Division of Senior and Disabilities Services, Department of Health and Social Services (DHSS), offered his understanding that the supplemental budget request wasn't increased because the DHSS hadn't yet had the opportunity to talk to the Office of Management & Budget (OMB) about it. He said that [the DHSS] wants to "fix this" via the most expeditious mechanism, whether that ends up being via the operating budget or via some other legislation. REPRESENTATIVE CISSNA surmised that the legislature was simply not aware until just very recently of how bad the situations regarding assisted living homes and personal care attendants (PCAs) have become. She suggested that the committee ought to address legislation pertaining to this issue in a slow and deliberate manner. 4:43:27 PM CHAIR WILSON indicated that because the aforementioned new committee bill is not yet before them, the committee would not be taking public testimony on it yet. REPRESENTATIVE GARDNER asked whether the Department of Health and Social Services could simply add the money necessary to cover the personal needs allowance for assisted living homes, or whether such had to be done via legislation. MR. ASHMAN said that the DHSS will attempt to [obtain the funds] through the supplemental budget. REPRESENTATIVE GARDNER asked whether, if that attempt succeeds, a "legislative fix" would then even be necessary. REPRESENTATIVE ANDERSON remarked upon the shortness of time left in the session. CHAIR WILSON concurred. REPRESENTATIVE ANDERSON expressed a preference for the DHSS to obtain the necessary funds via the supplemental budget. 4:45:52 PM MR. ASHMAN said he would pass that information on to the commissioner, adding that the idea behind including a mechanism [for funding] in HB 114 was to simply provide for an option should one be needed. REPRESENTATIVE GARDNER surmised, then, that providing a funding mechanism via HB 114 is not absolutely necessary; rather, the money could simply be obtained via the supplemental budget. MR. ASHMAN said that what is necessary is for the DHSS to obtain the necessary funding, and, in response to an additional comment, that the supplemental budget would address the situation for this fiscal year (FY). REPRESENTATIVE CISSNA said she is assuming that it will be difficult to get a [new] piece of legislation through the process before the end of session. CHAIR WILSON surmised that the likelihood of new legislation making through the process before the end of session would depend on the number of committee referrals a bill receives. She relayed her belief that "our best bet is a supplemental [budget request]," and explained that she is having some intent language and guidelines for PCAs included in the forthcoming new committee bill. 4:47:43 PM REPRESENTATIVE ANDERSON again remarked on the shortness of time left in the session, and suggested that efforts should be made to encourage the speaker to assign the forthcoming new committee bill to only the House Health, Education and Social Services Standing Committee and the House Finance Committee. CHAIR WILSON said her concern is that the committee has not yet had a good discussion on [the aspects that will be included in the forthcoming new committee bill]. REPRESENTATIVE ANDERSON opined that there has been sufficient discussion on the assisted living home issue, and again suggested that efforts should be made to encourage the speaker to assign the forthcoming new committee bill to only the House Health, Education and Social Services Standing Committee and the House Finance Committee. CHAIR WILSON said she would try to do that. REPRESENTATIVE CISSNA said her hope is that "these two issues" could be looked at in greater depth by the committee, and mentioned that she would be doing that herself over the interim. CHAIR WILSON indicated a willingness to have the committee do everything it can. [HB 114 was held over.] ADJOURNMENT  The House Health, Education and Social Services Standing Committee was recessed at 4:50 p.m. to a call of the chair. [The meeting was never reconvened.]