HCR 6 - ALCOHOL-RELATED BIRTH DEFECTS AWARENESS Number 035 CHAIRMAN IVAN indicated that the committee would consider HCR 6, "Relating to Alcohol-Related Birth Defects Awareness Week." Number 065 KATTARYNA BENNETT, Researcher for Representative Irene Nicholia, came forward to testify on HCR 6. This resolution requests that the governor proclaim both the weeks of Mother's Day and Father's Day as Alcohol Related Birth Defects Awareness Week. Alaska ranks number one for babies born each year with alcohol related birth defects. Leaders of the state should be deeply troubled with this tragic problem, which has reached a crisis level in Alaska, as well as across the nation. Alcohol can interfere with normal development of the fetus. Aside from obvious physical deformities such as facial abnormalities and small body size, alcohol can also damage a baby's brain causing mental and psychological problems that last a life time. The affects of alcohol on the baby's nervous system may include brain damage, mental retardation, poor coordination and severe learning disabilities. MS. BENNETT stated that fetal alcohol syndrome is the number one cause of mental retardation in the Western world and is one of the three leading causes of birth defects. A child who is born with alcohol related birth defects will have this disability throughout their entire life. These disabilities are 100 percent preventable. Sadly, in Alaska, up to 10 percent of all pregnant women still consume alcohol through the third trimester of their pregnancy. MS. BENNETT noted that Alaska has come a long way in the last few years to bring about public awareness of alcohol related birth defects but still many women don't understand that there's no safe amount of alcohol consumption at any time during their pregnancy. When a woman who is pregnant drinks alcohol it goes directly from the stomach into the blood stream. The alcohol crosses the blood stream through the placenta and enters directly into the baby's blood stream. This problem does not just pertain to the frequent or heavy drinker. A woman who drinks occasionally can also produce a baby with alcohol related birth defects. MS. BENNETT continued that education and public awareness about Fetal Alcohol Syndrome (FAS), Fetal Alcohol Effects (FAE) and other alcohol related birth defects is critical because these syndromes are 100 percent preventable. A woman who abstains from drinking alcohol during her pregnancy has no risk of having an FAS or FAE baby. Every year that Alaska fails to prevent Fetal Alcohol Syndrome in the state they produce approximately 30 more babies who will grow up disabled for life. In 1988, it was estimated that the life time cost per Alaska FAS births was $1.4 million per baby not including the cost of welfare, the justice system or other miscellaneous social costs. Education and awareness are key to preventing FAS and FAE. She urged the committee's support. Number 345 CHAIRMAN IVAN asked about the figures which the department may have gathered in relation to this problem. Number 390 LOREN JONES, Director, Division of Alcoholism and Drug Abuse, Department of Health and Social Services, came forward to testify on HCR 6. Several years ago the Center for Disease Control, the Indian Health Service and Department of Health and Social Services conducted a joint surveillance project to try and identify, as best as possible, what the prevalence rate for Alaska was. The published reports reflect a rate of 2.5 FAS births per 1,000 live births over a 10 year period. Due to constraints on data, what was marked in medical records and a few other variables, this rate was reflected in the Native Alaskan community only. The project could not establish scientifically a rate for non-Natives due to the lack of date kept in private pediatric offices and hospitals. CHAIRMAN IVAN assumed that for this type of awareness program they work with the Native Corporations and their respective clinics. Number 499 MR. JONES responded that the activities their division tries to engage is two fold. One, through the Alaska Council and other prevention grantees, they try to get quality public information disseminated through radio, television and print ads. Secondly, in connection with RuRal Cap and their Head Start program, they work with all of the Head Start programs throughout rural and urban Alaska. RuRal Cap has taken on the role of providing the public information to the Regional Health Corporations and their Fetal Alcohol Syndrome coordinators. In light of "compacting" within the Native Indian Health Service, the staff at this organization responsible for FAS tasks are no longer at the Native Indian Health Service. This function has been designated back to the twelve corporations. RuRal Cap has taken on this role and the division works with them to coordinate this effort. He outlined what some of these efforts were. REPRESENTATIVE DYSON understood there were no good protocols for diagnosing Alcohol Related Neurological Defects (ARND) or what used to be called FAE. Number 627 MR. JONES responded that they've been struggling with this problem as the research gets better. The diagnostic schemes they had before just weren't as good. Just recently, the Institute of Medicine, published a book which addresses the difficulty of diagnosing what they used to call Fetal Alcohol Effects. This field has been divided into two areas. One is alcohol related neuro-developmental disabilities which is a behavioral diagnosis. Secondly, there are birth defects when a child may have one or more of the symptoms of FAS but not the whole configuration. If there are physical abnormalities this is called something else. He noted on-going efforts to help with better means of diagnosis. REPRESENTATIVE REGGIE JOULE asked if it took a doctor with a special background to diagnose these syndromes. He also noted a hesitancy to diagnose such problems in order to avoid "labeling." Number 750 MR. JONES responded that significant training is needed to diagnose these conditions. In the Public Heath and Indian Health Service clinic they brought a pediatric dysmorphologist from Seattle and this person did train some people in the clinic, but not many pediatricians in private practice in urban Alaska have had this training. He believed that some people were afraid to label as Representative Joule noted. Doctors don't often ask about the alcohol behavior of a pregnant woman, which isn't reflected in the clinical records. One of the disadvantages found during the Center for Disease Control project was that the Indian Health Service had taken this issue very seriously and as such their medical documentation was much better. Once they saw a child or teenager it was easier for them to go back into the medical records and produce enough of a history to get a better diagnosis. Once a child is past the age of seven or eight it is very hard to make this diagnosis. REPRESENTATIVE JOULE mentioned his past experience on a board and at that time there was a study done in the Northwest Arctic area. It was thought that potentially as many as 25 percent of the children observed might fall into one of these two categories and asked if Mr. Jones was still hearing this type of percentage. Number 897 MR. JONES responded that they were still hearing this. It is hard for them to agree or disagree with a number based on their inability to get good and timely diagnoses. There are children who are having significant problems whose parental history would lead someone to believe that alcohol was consumed during pregnancy, but whether the behaviors observed and the inability of a child to respond to normal types of discipline or behavior relate back to this original possibility are difficult to determine. REPRESENTATIVE JOULE said it was interesting to hear, that in addition to a female contributing to this problem through consumption, a father at the time of conception might also contribute to this problem. Number 996 CHAIRMAN IVAN noted that no reference was made in this resolution to other drugs contributing to FAE. MS. BENNETT responded that in this resolution, they wished to specifically address alcohol related birth defects. There are many birth defects that can be attributed to other drug usage during pregnancy, but they wished to focus on alcohol related birth defects. Number 1055 ANNE SCHULTZ, Research Analyst, Advisory Board on Alcoholism and Drug Abuse, came forward to testify on HCR 6. She read a portion of a letter addressed to the state Advisory Board on Alcoholism and Drug Abuse. This letter applauded their efforts to address the problem of alcohol related birth defects. HCR 6 reminds all of them that this problem is greater in our state than any other and Alaska must redouble their efforts to ensure that their newest citizens are not starting their lives looking forward to poor mental and physical health with little opportunity. REPRESENTATIVE OGAN stated that he had some dear friends who adopted two children, a brother and a sister, who suffer from Fetal Alcohol Syndrome. He's a first hand witness to the affects of this problem and offered if there was anything they could do to help they would. He added that this resolution was an applaudable goal. He summed up that this was a senseless way to impair young people's lives. He certainly supported this resolution. Number 1163 REPRESENTATIVE DYSON moved and asked unanimous consent to move HCR 6 from committee with individual recommendations and accompanying zero fiscal notes. Hearing no objection, HCR 6 was moved of the House Community and Regional Affairs Committee.