HB 114 - HEALTH CARE DATA; BIRTH REGISTRATIONS Number 0023 CHAIRMAN BUNDE announced the first item on the agenda was HB 114, "An Act relating to health care data and registration of births." Number 0077 GAYLE WOLF, student at the University of Alaska Anchorage, an intern for the House Health, Education and Social Services Standing Committee, was first to testify. She said HB 114 was introduced last year as HB 540 at the request of the Department of Health and Social Services (DHSS), passed the House unanimously, was referred to the Senate for consideration but was never voted on because the legislature adjourned before the bill was addressed. MS. WOLF said HB 114 will accomplish changes in law needed to assure that the DHSS has access to information on diseases and conditions of public health significance which are essential to carry out disease surveillance, control and prevention activities. It will establish explicit civil immunity for providers who comply with requirements to report health care data and assure access by DHSS to health records needed to carry out its mandates and to conduct research for the purposes of protecting and promoting public health. These provisions are required to maintain eligibility for the $420,000 per year federal grant which supports operation of a registry of cancer occurrences within the state. The bill will also make the needed changes which will allow full implementation of the Electronic Birth Certificate system, clarifying the rules for filing and registering births occurring en route to Alaska. Number 0238 MS. WOLF said HB 114 will: Allow certification of births to occur by an electronic process rather than only allowing certification by a signature on a paper certificate and will shift the place of filing to recognize electronic filing, reducing filing time from seven to five days to comply with requirements of the National Center for Health Statistics; it will clarify rules for filing and registering births occurring on moving conveyances in international waters, air space, foreign waters or air space en route to Alaska to comply with the model Vital Statistics Act. She said HB 114 contains two zero fiscal notes. Number 0322 JOHN MIDDAUGH, MD; Chief, Epidemiology Section, Division of Public Health, Department of Health and Social Services, testified next via teleconference from Anchorage. He commended Ms. Wolf's presentation of HB 114, as it covered everything that the bill is designed to do. He said this bill is important because it allows DHSS to be in compliance with the federal grant which fully funds the state's cancer registry. The registry is within a month or two of providing its first data analysis. Number 0421 MICHAEL H. MILLER was next to testify. He said he has a vested interest in HB 114 as he has metastatic prostate cancer which has spread to bone cancer. He said, like anything else, you don't understand it until you are there and he is there. He said one in five men will come down with prostate cancer, four out of ten Americans will come down with cancer in general. He referred to folders, located in the committee file, to show the committee what California has done. The statistics list the California cancer data from 1996 and 1997. MR. MILLER said, in 1996, 10 million Californians had cancer which is about one in three, whereas in 1997 there were 14 million which is about two in five. He said, in 1996, 822,000 and, in 1997, one million people had cancer and survived. He said 350,600 were diagnosed with a five or more year survival rate in 1996 and in 1997 they project 425,000. He said, in 1996, 135,950 Californians were diagnosed as having cancer which is almost 16 new cases every hour of every day and added that California has a lower number than the national average. In 1997, California projects that number will go down to 131,920. Number 0628 MR. MILLER said, in 1996, about 54,400 of the Californians who came down with cancer will remain alive five years after diagnosis. In 1997, 74,000 will be alive five years after diagnosis. He said this represents a change from 53 percent to 56 percent and said this is significant to him because this figure is very motivating for people who have cancer. He said, in 1996, 52,685 people died of cancer which equals 144 a day. One out of every five deaths in California is the result of cancer. In 1997, this number will increase to 53,610 which is about 147 people a day. Number 0693 MR. MILLER said a greater amount of people can be saved with educating the public on the different types of cancers. The more education that we can provide to men about prostate cancer, the lower the risk there will be. Cancer is the second leading cause of death, it accounted for 23 percent of deaths in 1996. Heart disease accounted for 31 percent. He said the statistics don't change that much for 1997. In 1996, for all stages, there was a 77 percent for a five or more year survival rate and, in 1997, that increased by 7 percent to 84 percent. Localized cancer, which is just in the prostate area, increased 5 percent between 1996 and 1997. Regionalized cancer, which means that it can go a little bit beyond the prostate area, increased 11 percent from 81 percent to 92 percent. For distant cancer, it increased 4 percent. MR. MILLER said he would look at the 84 percent number and see it as a motivation that life can be prolonged. He commented that where there is hope, there is life. CHAIRMAN BUNDE thanked him for sharing his personal experience with the committee. He said he appreciated it and wished him all the best. MR. MILLER said both his bone cancer and prostate cancer are in a stable position. Number 0907 REPRESENTATIVE BRIAN PORTER made a motion to move HB 114 with individual recommendations and zero fiscal notes. Hearing no objection HB 114 was moved from the House Health, Education and Social Services Committee.