SB 267-DOCUMENT PRENATAL ALCOHOL EXPOSURE  CHAIR DAVIS announced consideration of SB 267. JANA KREOFSKY, Intern, Senator Davis, presented an overview of SB 267. She said it mandates that health care professionals record an infant's exposure to prenatal alcohol in the infant's medical file with the mother's consent. This information is designed to assist with early diagnosis of Fetal Alcohol Spectrum Disorders (FASD) when applicable. Early diagnosis and intervention have been shown to reduce the risk of developing secondary disabilities such as difficulty in school, trouble maintaining employment, mental health problems, and drug and alcohol addiction. Due to the ambiguous nature of many of the symptoms of FASD, misdiagnosis is common. Documentation of prenatal alcohol exposure in the infant's file could aid medical professionals in making more accurate diagnoses. The bill would limit use of information pertaining to prenatal alcohol use by the mother to purposes of diagnosis, treatment, and care. It comports with the FAS surveillance project recommendations found in "Fetal Alcohol Syndrome Prevalence in Alaska." Health care providers should be encouraged to document the details of maternal alcohol use during pregnancy in the child's medical chart. THOMAS OBERMEYER, Staff, Senator Davis, drew the committee's attention to the zero fiscal note. 1:40:51 PM SENATOR DYSON asked if Diane Casto intended to testify and lauded her for her hard work to create the state's current program for FASD. 1:41:58 PM DIANE CASTO, Manager, Prevention and Early Intervention Services, Division of Behavioral Health (DBH), Department of Health and Social Services, said she was a former Director of the Office of Fetal Alcohol Syndrome. At that time, Alaska was one of the only states that had an office dedicated to FAS. The Department of Health and Social Services (DHSS) supported the concept of this bill, but recognized that the Department of Law had concerns. MS. CASTO said Alaska was using a "Gold Standard" diagnostic process called the four digit diagnostic code developed by Doctors Susan J. Astley, [Ph.D., Professor of Epidemiology] and Sterling K. Clarren of the University of Washington. It looks at four specific areas of concern and rates them to come up with a diagnosis. ° Facial features - There are specific facial dismorphologies in someone with the full FAS diagnosis. ° Growth deficiency ° Central nervous system ° Known maternal alcohol use - This is the most difficult to assess. MS. CASTO said diagnostic teams have access only to a child's medical records, not the mother's, which is appropriate. They did not want to create a system that would be perceived as targeting women, but felt there should be some way to document known maternal alcohol use in the child's record, in order to get appropriate services to the child. MS. CASTO said that, as a strong proponent of civil rights, she felt a mother should have to give her consent to document that information, but was afraid that many women would choose not to allow it for fear of retribution. She suggested that line 13 [12 and 13] of the bill, which read "(b) Information received under this section may not be used except for the purposes of providing medical diagnosis, treatment, or care" Should be amended to read: 12 (b) Information received under this section may not be used except for the 13 purposes of providing medical diagnosis, treatment, or care of the child. MS. CASTO digressed to point out that the 12 month age limit is not enforced with regard to reporting FAS to the Birth Defects Registry. The State of Alaska mandates that, if a medical provider knows a child has been prenatally exposed to alcohol, the provider must report it to the Birth Defects Registry. Unlike all other types of birth defects, prenatal exposure to alcohol can be reported up to the age of six because the information is not often discovered within the first year. However, that information cannot be accessed to help in an FASD diagnosis. She added that, at least 20 percent of the time, diagnostic teams were unable to document maternal drinking during pregnancy, which led to a lesser diagnosis or a diagnosis that did not get the child the needed services. 1:49:28 PM SENATOR DYSON said the last time he discussed this with Ms. Casto, Alaska led the nation in prenatal alcohol poisoning of children. He asked if she could tell the committee where she sensed Alaska was in the ranking at the time of this meeting. MS. CASTO agreed that the State of Alaska did lead the nation in prenatal alcohol exposure. One reason was that the state in general and the Alaska native health organizations specifically, did an excellent job of tracking this disability. Another reason was that many states do not keep this data. Of the states that do keep the data however, we continued to be at the top of the list, although she said they were starting to see a small downward trend. SENATOR DYSON asked if it was true that there was no sure way to diagnose fetal alcohol effects unless they could document that the mother drank during pregnancy. MS. CASTO replied that was mostly true. In the diagnostic process you could see static encephalopathy, which means permanent damage to the brain, so you could document the disability without knowing the cause. SENATOR DYSON asked if it would be found in a brain scan of some kind. MS. CASTO responded that brain scans were coming, but currently it was found most often through psychological testing, speech and language, physical therapy etc. SENATOR DYSON clarified that he meant in infants. He asked if Ms. Casto would get together with legal to draft an amendment regarding permissions. CHAIR DAVIS advised the Senator that they had already worked with legal on this issue. 1:53:59 PM SENATOR ELTON and SENATOR THOMAS joined meeting. SENATOR DYSON said it was his understanding that this was first documented at the University of Washington Hospital, when a doctor noticed that many children with similar symptoms also displayed similar facial features. SENATOR ELTON returned to line 13 and asked if this type of information would be available to an insurance agent or company that might not be willing to pay for the care. MS. CASTO admitted that she did not know; it was something she had not thought of. SENATOR THOMAS expressed concern about the issue of maternal permission to document the information. MS. CASTO assured Senator Thomas that this is a critical issue and one they have grappled with for some time. FASD is one disability that is clearly caused by the mother, which makes it different from other disabilities in that there is tremendous guilt, and placing this in the child's record documents the fact that mom caused the child's disability. 1:58:43 PM MS. CASTO stressed that somehow we need to get away from blame and work with the mothers. We need to do a better job of educating mothers before they get pregnant; to make sure we have treatment and services available for those who get pregnant and are still drinking; to make sure we have services available for the children who are disabled as a result of drinking during pregnancy. This bill could lead to earlier identification and screening and an earlier diagnosis so children could get treatment early enough to eliminate the secondary diagnoses Senator Davis' aid referred to earlier. SENATOR THOMAS asked Ms. Casto to speak to other things that should be done to reduce this expensive and unfortunate situation. 2:02:11 PM MS. CASTO assured Senator Thomas that there are things to be done. She referred to a knowledge, attitude, beliefs and behavior survey done in 1996 and repeated about five years later. The category with the worst response was "Is it OK to drink occasionally during pregnancy?" That questions was answered wrong most often by OBGYN doctors. We could definitely do a better job of education. She was not entirely opposed to drinking alcohol, but felt that there were three areas of intolerance where it was concerned: Children and teens should not drink alcohol; people should not drink and drive; women should not drink during pregnancy. SENATOR THOMAS asked if they should be sure the curriculum for health professionals at the University of Alaska is clear on the dangers of alcohol during pregnancy to better inform the new generation of doctors. MS. CASTO answered "Absolutely!" SENATOR DYSON commented to Senator Thomas that every bar has to have a label on the bar and on the table; also package stores that sell alcohol have to put a caution on their bags along with their logo. 2:04:41 PM PEGGY METCALF, mother and grandmother, supported SB 267, and felt that children should be given every opportunity to be their very best. KJ METCALF supported SB 267 and expressed appreciation to Senators Dyson and Elton for moving the bill forward. He said he and his wife lived in Angoon for 18 years and saw generations of women drink during pregnancy. FASD can be devastating to a small community where there are no services; one of the best things they can do to prevent FASD is to provide services to young ladies of child bearing age, to help them through that period without drinking so their children will be healthy. RIC IANNALINO, Coordinator, FASD Diagnostic Clinic, Central Council of the Tlingit Haida Indian Tribes, Tribal Family Youth Services, said they had been in existence for a little over three years and had seen about 120 individuals and their families so far. He said this issue was very personal to him because he had dealt with many people whose children could not get into the clinic because they could not confirm a diagnosis of FASD; they could not say with certainty that the children had been exposed prenatally to alcohol. He explained that medical personnel could be sued for making a diagnosis of FASD if exposure could not be proven, but he and his team feel awful when they cannot help these families. He felt it would be much easier to get this information from a mother when the baby is born birth, before it became evident the child was disabled, and that would allow the child to get the early diagnosis and treatment needed. 2:12:02 PM GLADYS EVE RECKLEY, served on the council at Northern Lights Church with KJ Metcalf during the past year. Mr. Metcalf put together a conference that was endorsed by Northern Lights Church, which brought together a number of professionals on FASD. She supported SB 267 and felt strongly that educating the public on the long-term effects of FASD was very important. She provided a letter of support addressed to Chair Davis and Representative Doll from Joy Lion, also from Northern Lights Church. JAN RUTHERDALE, Senior Assistant Attorney General, Civil Division, Child Protective Section, Department of Law, worked in the civil division of the child protection section for 20 years, working primarily with children in need of aid. She was very much aware of the devastating effects of FASD because many of the children in state custody and their parents suffer from it. She did not doubt the importance of getting the documentation in order to make an accurate FASD diagnosis, but feared the bill might actually hamper documentation because it would allow a mother to veto inclusion of that information in her child's record. She agreed with Ms. Casto's remarks that a mother might feel very guilty about what she had done to her child, but since drinking is not illegal, she would have no liability. MS. RUTHERDALE pointed out that a new reporting statute was passed two years ago, AS 47.17.024, which requires health care practitioners to make a report to the Office of Children's Services (OCS) if a practitioner determined an infant was adversely affected by alcohol. It made sense to her that, since doctors know they are required to make that report when dealing with a mother and child under the age of 12, he or she would note that in the record. This bill might create the false impression that the doctor did not have to comply with the reporting statute if the mother did not authorize it. MS. RUTHERDALE mentioned parenthetically that she was passing the following concern on for the assistant attorney general who does licensing. AS 08.64 established licensure requirements for doctors in Alaska; it did not set out how specific medical conditions should be diagnosed or recorded. The medical board adopted a regulation regarding general record keeping and adopted ethical standards for doctors, but telling a doctor how to document a specific potential medical issue is a departure from the purpose of AS 08.64. She suggested that, if this bill went forward it should be in title 18, which deals with DHSS matters. 2:20:22 PM MS. RUTHERDALE agreed with Ms. Casto that they should clarify on line 13 that reporting was for treatment and diagnosis of the child, and further suggested drafting something that would allow the notation to be made at a later date. She recommended removing the phrase on lines 9 and 10 of the bill "if the mother provides her consent to the inclusion of the information in the infant's medical file." She speculated that an educational component might offer an alternative to legislation, but wondered whether documentation was actually still a problem. Now that doctors have been mandated to report under AS 47.17.024 and OCS keeps all of their records, there would be a historical record going forward for any child in the OCS system. MS. RUTHERDALE asserted that most mothers, when asked whether their child might have been exposed to prenatal alcohol, say they did not drink from the time they knew they were pregnant, but they might have been pregnant for several months by the time they found out, so doctors would need to know how to ask the question. 2:23:30 PM SENATOR ELTON said, regarding line 13, he did not want this to become a rationale for insurance companies to deny coverage and was concerned the language "treatment or care" might give an insurance company access to the report. MS. RUTHERDALE did not know, but said she could get back to him on it. SENATOR ELTON went back to her point that the bill might create confusion for doctors reporting to OCS under AS 47.17.024; he understood the point but, given the testimony that OBGYNs were not giving correct information to pregnant women, he did not see it as a problem to include a provision under the licensing law. 2:26:54 PM MS. RUTHERDALE said if he was truly concerned that doctors were advising pregnant women it's OK to have a couple of glasses of wine, this bill would not accomplish what he wanted because it does not contain an educational requirement. She also reminded him that the report Ms. Casto referred to was about 12 years old and there might no longer be a problem. SENATOR ELTON commented that tying good advice to licensing would get doctors' attention. SENATOR DYSON asked if Ms. Rutherdale meant to imply that the current mandatory reporting law covered much of what they were trying to accomplish and might be more efficacious because it lacked the disclaimer about requiring maternal consent. MS. RUTHERDALE answered that yes, but she recognized that the existing reporting statute placed the report into a central registry that is confidential; state police reports are confidential; doctors' reports are confidential; ideally it would appear in all these places, but this bill might result in less documentation because a mother could refuse to allow it. SENATOR DYSON asked if she meant they needed to do something more to ensure the information would show up in the relevant files. 2:30:39 PM MS. RUTHERDALE did not know. SENATOR THOMAS questioned whether existing statute required doctors to obtain permission to document other forms of abuse. MS. RUTHERDALE responded that they never have to get permission. SENATOR THOMAS asked what she believed the outcome would be if someone sued based on an accurate report that was included in the file without her permission. MS. RUTHERDALE did not believe she would get very far in such a suit. GEORGE BROWN MD drew an analogy between this and other public health problems. He pointed to laws that require children to be immunized and tested for tuberculosis; laws that require reporting of certain illnesses such as sexually transmitted diseases. He admitted that this issue became difficult with regard to whether the intent was to catch someone and place blame, or to stem the tide of an epidemic. DR. BROWN opined that the beauty of the bill is it allows the possibility of cooperation between clinical medicine and public health. He was pretty sure that if they did another survey the OBGYNs would score much higher than they did before and, although he could not tell the committee what the Alaska State Medical Association or his colleagues would say about the bill, he was quite sure most physicians would want to do whatever would provide better case-finding and allow early identification and intervention. As far as AS 18 and the requirement that doctors report harm, most of the time they would not make a report of FASD unless it was pretty obvious, which could be long after damage had been done. Speaking to Senator Elton's concern about insurance companies using it to deny coverage, if a doctor recorded the possibility of FASD and there was an ICD9 code, the insurance company would know about it. He contended however, that the money FASD cost society made that a minor consideration. He agreed with Ms. Casto that it would be good to add to section (b) that it is for the good of the child. 2:37:15 PM SENATOR ELTON asked Dr. Brown if he understood him to say a doctor might not report to OCS that a mother was drinking while pregnant, because the harm had already occurred and there was not an instance of harm for the doctor to report. DR. BROWN responded that the OCS requirement had to do with a doctor having evidence that there really was abuse and in many cases reporting occurs occur long after the opportunity for early intervention has passed. It would not promote the early case finding, the early delivery of services and the cost savings that go with it. 2:39:03 PM ALPHEUS BULLARD, Attorney, Legislative Legal and Research Services Division, Legislative Affairs Agency, read from existing statute AS 47.17.024, which already provides for mandatory reporting. "(a) A practitioner of the healing arts involved in the delivery or care of an infant who the practitioner determines has been adversely affected by, or is withdrawing from exposure to, a controlled substance or alcohol shall immediately notify the nearest office of the department of the infant's condition." He explained that the reason that, in this particular bill, the mother must provide her consent is because of privilege. When a mother shares information with a doctor or other medical personnel, there is the expectation that the information is privileged. If it is placed in the child's file, that privilege is challenged. CHAIR DAVIS asked if they could remove the consent requirement from line 10 the bill and still move forward. MR. BULLARD stated that in his legal opinion they could run into constitutional issues in terms of the confidentiality of the information about the mother's behavior. If it is going to be recorded anywhere other than in her own file, she needs to provide her consent. SENATOR ELTON proposed a hypothetical situation in which a child arrives at the emergency room with a broken arm that medical personnel suspect was inflicted intentionally, and wondered why reporting a mother's alcohol consumption would be a constitutional issue while the reporting of other forms of potential abuse were not. MR.BULLARD said that in the scenario he described, the need to report is clear. Here there is no real consensus about how much alcohol leads to adverse effects on a child, so if a mother provided information about her consumption of alcohol during pregnancy, the question of whether the machinery of the state should go into gear in terms of mandatory reporting is very different. 2:44:17 PM SENATOR ELTON questioned whether Mr. Bullard was saying that the issue of what causes FASD was still unsettled science. He said he believed it was demonstrable that drinking while pregnant was harmful, so he was struggling with the issue of harm and why one type could be reported and one could not. MR. BULLARD advised the difference is that drinking while pregnant is not currently illegal. CHAIR DAVIS asked for his opinion on moving age of the child for reporting purposes to more than 12 months. BULLARD SECTION responded that section (c), referencing (a) as a postnatal mother and infant, could be removed; but the bill was just meant to govern medical personnel attending after the birth. CHAIR DAVIS mused that they could consider an additional section to cover reporting for children over 12 months, or leave it as it is and focus on the earliest possible identification. She asked whether the committee wanted to change the verbiage in section (b) to specify that the treatment and care are only for the child. SENATOR DYSON was struggling with Ms. Rutherdale's testimony that this bill would weaken existing reporting law. CHAIR DAVIS did not feel there would be a conflict. 2:49:11 PM SENATOR THOMAS saw the distinction between them in this bill's attempt to get the mother's cooperation. CHAIR DAVIS suggested they contact the medical board for comment before proceeding, and asked the committee if they intended to propose any additional amendments. SENATOR ELTON said he did not have an amendment but wanted to hear from the Department of Law regarding insurance company access to this information. He did not want to create a system that would allow an insurance company access to the medical files for the purpose of deciding whether to pay for care. CHAIR DAVIS held SB 267 in committee.