HB 407 - INSURING PERSONS WITH GENETIC DEFECTS Number 049 CHAIRMAN PETE KOTT announced the committee would address HB 407, "An Act relating to discrimination by certain insurers against a person with a genetic defect." REPRESENTATIVE JOHN DAVIES, prime sponsor of HB 407, explained he has prepared a proposed committee substitute (CS) for HB 407, work draft C. He informed the committee the main change is on page 2, lines 5 through 10, subsection (b). Number 114 REPRESENTATIVE NORMAN ROKEBERG moved to adopt the proposed CSHB 407, 9-LS1209\C, Ford, 4/16/96. CHAIRMAN KOTT asked if there was an objection. Hearing none, CSHB 407, 4/16/96, Ford, Version C, was before the House Labor and Commerce Committee. Number 197 REPRESENTATIVE DAVIES explained the purpose of the addition in the CS is to try to respond to some of the concerns that were addressed at the last hearing. There may be situations where having some sort of genetic marker in concert with a probability of the development of a disease or actually having some other medical condition that would presuppose the symptoms would develop soon. He said he tried to say that you wouldn't apply this bill in the case where a person had asymptomatic genetic characteristic and some other indicator that there was a probability of developing some disease where there was a probability of substantial increase in claims. The bottom line is if the circumstances that are present would indicate, to a reasonable person with the history, that there would be a substantial increase in claims then this bill wouldn't apply. He said what he is trying to get at is a situation where the only piece of information is an asymptomatic genetic characteristic. There are many circumstances where just that alone has absolutely no probability that attaches to that, but you would have a particularly significant disease develop - it's indistinguishable from the rest of the population in the insurance pool. Number 326 REPRESENTATIVE BRIAN PORTER said, "I would assume then that the term `actuarial projection' in this context means that a person that is found to have this genetic characteristic, that that genetic characteristic has had in the past enough experience that sans symptoms, that's known, it's extremely likely that `X' is going to happen and that `X' is going to be more (indisc.-- coughing)." Number 391 REPRESENTATIVE DAVIES pointed out he has submitted the CS to a couple of insurance organizations to see what their view is. He said his understanding is that their response is that this significantly improves the bill from their point of view, but it might not quite get it over the hurdle. He referred to a response from the Health Insurance Association of America (HIAA) which says that they don't support policies or practices by which any person who has a health insurance plan is singled out for termination of coverage or premium increase because of claims history results of any medical test, including genetic tests. He said their testimony has been that they are unaware of any current use or plans by their member companies that require applications for private health insurance to undertake any type of genetic tests for the purpose of obtaining major medical coverage. Representative Davies said it would be his understanding that there isn't any widespread or prevailing practice in the insurance industry to do this right now. What he is concerned about are those small number of instances where individuals for pathological reasons are getting singled out for discrimination in particular cases. Since it doesn't appear to be the policy of the insurance industry to do this, he would like to just put an additional barrier to prevent that from happening. As you get more and more information there will be a tendency for this type of situation to happen more often. He said he doesn't want people to feel that they shouldn't get genetic tests for fear of their insurance policies will go up. Representative Davies said he wants this information in a positive sense in that people can get tests where it is appropriate and use that in preventative maintenance. REPRESENTATIVE DAVIES referred to a publication entitled, "Science and Engineering Ethics" and explained they sent out 917 questionnaires to people who may be at risk. They had 455 respondents who asserted that they had experienced genetic discrimination and 437 said they had not. If you looked at those further, it may be that some of those would not be legitimate claims, but there were 455 respondents who felt they had been discriminated against solely on the basis of asymptomatic genetic disorder. Representative Davies pointed out there was an article recently in the Juneau newspaper that indicated that there are 11 states that have some sort of law that relates to this topic. REPRESENTATIVE DAVIES referred to a speech by Harold Varmus (Sp.?) given at Kansas State University on February 5, 1996, and said Mr. Varmus indicates that he gave the speech as director of the National Institute of Health. Representative Davies read, "To make any further progress, we have an immediate political issue to resolve. We must insist that all states and the federal government pass laws to protect our citizens from abuses of genetic information. Recently, the Equal Employment Opportunity Commission ruled that the Americans for Disability Act prevents job discrimination based on genetic information. This will help, but strong laws that guarantee the privacy of genetic information, the protection from reprisals by insurance companies will be essential. And currently only a few states, Kansas not among them, have such laws. Provisions in Senator Castlebaum's proposed health insurance (indisc.) are enlightening in this respect." Representative Davies said he would answer questions. CHAIRMAN KOTT asked if there were questions of Representative Davies. Hearing none, he asked if there were further witnesses. There being none, Chairman Kott closed public testimony. Number 828 REPRESENTATIVE KIM ELTON moved to pass HB 407, Version C, dated 4/16/96, out of committee with individual recommendations and the attached zero fiscal note. CHAIRMAN KOTT asked if there was an objection. Hearing none, CSHB 407(L&C) was moved out of the House Labor and Commerce Committee.