The Senate Committee on Human Resources and Facilities was called to order by Chairman Raymond D. Rawson, at 12:40 p.m., on Friday, April 23, 1999, in Room 2135 of the Legislative Building, Carson City, Nevada. Exhibit A is the Agenda. Exhibit B is the Attendance Roster. All exhibits are available and on file at the Research Library of the Legislative Counsel Bureau.

COMMITTEE MEMBERS PRESENT:

Senator Raymond D. Rawson, Chairman

Senator Maurice Washington, Vice Chairman

Senator Randolph J. Townsend

Senator Mark Amodei

Senator Bernice Mathews

Senator Michael Schneider

Senator Valerie Wiener

GUEST LEGISLATORS PRESENT:

Assemblywoman Dawn Gibbons, Washoe County Assembly District No. 25

STAFF MEMBERS PRESENT:

Cynthia Cook, Committee Secretary

OTHERS PRESENT:

Assemblywoman Jan Evans, Washoe County Assembly District No. 30, testified birth defects often carry life-altering outcomes to a youngster, and early intervention can make a great difference. Nevada has no early referral database and many studies show records obtained from birth certificates often are not accurate. Assemblywoman Freeman asserted other states have established a special registry such as A.B. 238 would set in motion. She averred although the bill indicates a fiscal note, the Health Division, Department of Human Resources, has obtained a grant for $100,000 per year for 3 years from the Centers for Disease Control and Prevention, and no appropriation would be necessary. Existing law and A.B. 238 have privacy safeguards in place to prohibit insurance companies from obtaining genetic information.

Mary E. Guinan, Ph.D., M.D., State Health Officer, Health Division, Department of Human Resources, told the committee A.B. 238 will require the Health Division and the University of Nevada School of Medicine to establish a statewide collection system for birth defects and stillbirths. Follow up, intervention, and treatment would be readily available as a result, Dr. Guinan continued. The right to use the information would be strictly limited, and only members of the University of Nevada School of Medicine would have access to names. Dr. Guinan said information released would have no reference to identity and the data would strictly be used for statistical purposes.

Chairman Rawson repeated concerns expressed that A.B. 238 goes further than other studies. He used, as an example, the cancer abstract study, stating no identifier could get out, because they are not recorded. Chairman Rawson averred the requirement for a name to be entered is cause for objection to A.B. 238. Chairman Rawson asked Dr. Guinan if she is comfortable the safeguards mentioned are enough. Dr. Guinan responded the State of Nevada has kept statistics on tuberculosis, aids, and human immunodeficiency virus (HIV) for a number of years and there has never been a break in confidentiality to her knowledge. Many communicable diseases, which are a threat to the community, require names in order to trace possible sources, and privacy has not been compromised.

Senator Wiener requested clarification from Dr. Guinan on a section of the bill reading "maintain and make available to the state health officer or his representative a list of …" and a further portion reading "make available to the state health officer or his representative the records of the hospital or obstetric center regarding … ." Senator Wiener asked why, if a list were available, would the records be necessary? Dr. Guinan responded the list is provided for the purpose of identifying those infants who have birth defects, and the records need to be available so the data can be abstracted. The abstracted data would aid the department in understanding the circumstances of the mothers and prenatal care could be reviewed to understand cause and prevention.

Chairman Rawson conveyed the Christian Scientist belief A.B. 238 is a significant infringement on their rights of privacy. He inquired if there is a way to accommodate their concerns. Dr. Guinan suggested there could be a requirement to not make contact with families who do not wish to be consulted. In other instances the division has informed individuals of certain results with no further follow up.

Senator Washington asked if an individual could be accommodated who did not wish to be a part of the registry. Chairman Rawson responded the overall statistics are important, and that would be a policy decision. Assemblywoman Evans added many of these things are already occurring as a matter of course, through vital statistic records on birth certificates. A.B. 238 is not adding anything new, just improving on a system already in place. Studies completed from this database will establish baselines and families can be referred to treatment.

Chairman Rawson closed the hearing on A.B. 238 opened the hearing on Assembly Concurrent Resolution (ACR) 19.

Assemblywoman Dawn Gibbons, Washoe County Assembly District No. 25, introduced Valerie J. Cooney, Lobbyist, Nevada Trial Lawyers Association. Ms. Cooney reported she is appearing before the committee today on a personal level because she suffers from a liver disease. A.C.R. 19 would address individual needs for many Nevadans by recognizing a procedure known as directed donations. The policy, which will increase consciousness and give voice to both donors and recipients, is a vehicle to express Nevada’s awareness of transplant. Ms. Cooney said the bill seeks to establish a state policy to recognize individuals from Nevada above recipients from other states. Since Nevada has no transplant center, all donated organs are shipped out of state, and northern Nevadans must travel to northern California for a transplant, or be put on a waiting list.

Debbie Pinjuv, Concerned Citizen, related she has been on the national transplant waiting list for over 2 years, in anticipation of a liver. Suffering from end-stage liver disease, her liver is now failing. Ms. Pinjuv, who leads a transplant support group in Reno, stated A.C.R. 19 is a strong recommendation for all Nevadans to become organ donors, and direct their donations to Nevada residents. Answering an inquiry from Chairman Rawson, Ms. Pinjuv said A.C.R. 19 does not violate any acts or compacts Nevada is signatory to, and follows existing laws that allow directed donation. She claimed northern Nevada donors supply one-fourth to one-third of the donations to the California Transplant Donor Network. Chairman Rawson instructed staff to investigate the concept of changing the burden to state everyone who dies in Nevada would be subject to transplant unless they indicate otherwise.

Frank Murphy, Respect Life Ministry, Diocese of Reno, testified organ donation is within the precepts and beliefs of most religions. Reverend Murphy spoke to the educational component of the plan. As a religious educator, he has found many people have the view they should put up with sacrifices in this world. Reverend Murphy teaches a continuum of life from birth to death and has been instrumental in the establishment of the Nevada Center for Ethics and Health. He explained the work of the center will focus on the education of Nevadans about end-of-life issues and an increase in donations through education would go a long way in helping this program.

Nyla Emerson, Community Relations Representative, United Blood Services, supports A.C.R. 19. As an example of community commitment, Ms. Emerson professed on a national level, 5 percent of the population donate blood, whereas in northern Nevada 13 percent of the population are donors.

Lawrence P. Matheis, Lobbyist, Nevada State Medical Association, stated the association supports A.C.R. 19. The problem of low donations in small states is very critical and a program the association endorses encourages physicians to become donors. Mr. Matheis suggested a review of the mechanisms for donation and an examination of the programs of other states be studied by the Legislative Committee on Health Care.

Patty Lee, Concerned Citizen, spoke in favor of A.C.R. 19. She related her husband has an inherited kidney disease, and Ms. Lee was able to be the donor. Her brother-in-law has the same disease and chooses to live in Utah in order to be assured of a kidney.

Donald H. Haight, Director, Contract Management, University Medical Center, informed the committee the transplant services department at UMC is temporarily shut down until the position of director is filled.

Lucille Lusk, Lobbyist, Nevada Concerned Citizens, said although she supports A.C.R. 19, taking organs without consent would be a violation of personal rights. Ms. Lusk requested the committee to consider a bill declaring the decision to donate organs on drivers’ licenses is definitive, and an active request be made for donation when applying for drivers’ licenses, health care, and other services.

Jan Gilbert, Lobbyist, League of Women Voters, said the league supports A.B. 238, because the data will be helpful for early intervention.

Marlene Chatterton, Lobbyist, First Church of Christ Scientist, suggested an amendment to address concerns of The Christian Science Church. The amendment would state:

Ms. Chatterton responded to Chairman Rawson the exact concern of the church is the inclusion of names. Ms. Chatterton said she would not object to a suggestion made by Senator Wiener to use the information statistically, but with no way to trace the child.

Janine Hansen, Lobbyist, Nevada Eagle Forum, cautioned the committee A.B. 238 seriously jeopardizes individual privacy for medical and genetic tests and records. The impetus of the bill was a federal grant to set up the information system and federal legislation provides Nevada make the data available. As proposed, A.B. 238 requires the state health office to abstract from the system such information as required for inclusion in the system. Ms. Hansen continued this consists of individually identifiable information, and the information might be used to assist in the early detection of birth defects. Ms. Hansen asserted people need to be aware genetic testing without the hope of a cure will be used for the purpose of recommending abortion and those on public assistance might experience pressure to terminate their pregnancy. Nevada has a law to prohibit insurance companies from discriminating because of genetic testing. Ms. Hansen said the forum supports an amendment to state clearly an exemption is available, if A.B. 238 is passed.

Sheila M. Ward, Lobbyist, Nevada Christian Coalition, testified the coalition opposes A.B. 238.

Senator Washington requested clarification regarding a section of the bill stating, "does not prohibit the publishing of statistical information that does not identify individual patients or confidential sources of information." Dr. Guinan addressed Senator Washington’s concern by stating it is required the data be published, but never with identifiers. Dr. Guinan stressed A.B. 238 does not allow genetic testing and most birth defects are not genetic but related to the environment. Dr. Guinan repeated Assemblywoman Evans’ point that A.B. 238 is an expansion of data currently available.

Dr. Guinan informed Chairman Rawson there would be no objection to an amendment declaring nothing in A.B. 238 authorizes prenatal testing. She added approximately one-third of children with fetal alcohol syndrome can be detected at birth and this system would allow for early treatment.

Barbara Jones, Concerned Citizen, supported testimony heard opposing A.B. 238. She added it is her belief many birth defects are genetic. Ms. Lusk thinks A.B. 238 lacks safeguards for privacy, and does not inform parents of their rights to not be included. Ms. Hansen said she believes A.B. 238 could be interpreted to allow for genetic testing, but if line 39 and line 40, on page 9 of the bill were deleted, it would eliminate the concern.

Chairman Rawson closed the hearing on A.B. 238 and opened the hearing on A.B. 251.

Donald H. Haight, Director, Contract Management, University Medical Center (UMC), testified in favor of A.B. 251. He said there is no known opposition to the bill and could save UMC between $3 million and $6 million a year in pharmaceutical supplies. Roy E. Barraclough, Lobbyist, Administrator, Pahrump Medical Center, stated this bill will allow the rural facilities to save funds.

Chairman Rawson closed the hearing on A.B. 251.

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Janice A. Wright, Acting Director, Division of Health Care Financing and Policy, Department of Human Resources, reported the bill deletes the sunset provision in S.B. 427 of the Sixty-Ninth Session.

S.B. 427 of the Sixty-Ninth Session bill moved the Medicaid program from the Welfare Division to the Division of Health Care Financing and Policy (DHCF&P), and combined it with the Health Care Financial Analysis Unit from the director’s office of the Department of Human Resources. Ms. Wright summarized the activities of the division as outlined on Exhibit C. The charge master program is a uniform list of billed charges for units of service or goods provided by major hospitals and A.B. 429 proposes to end the program, because a very low percentage of hospital patients pay billed charges and the program has served its usefulness.

John Sasser, Lobbyist, Washoe Legal Services, stated support for A.B. 429.

Bill M. Welch, Lobbyist, Nevada Association of Hospitals and Health Systems, said the association supports A.B. 429 , with one modification. The bill proposes to eliminate the sunset provision regarding DHCF&P and thereby establish it as a permanent division of the Department of Human Resources (DHR). The Nevada Association of Hospitals and Health Systems suggests the extension of the sunset for DHCF&P until June 30, 2001, in order to give the Governor’s Office the opportunity to conduct a review of DHR in its entirety and make recommendations regarding its functions, resources and structure.

Charlotte Crawford, Director, Department of Human Resources, explained Nevada is the only state without a Medicaid Management Information System (MMIS). Ms. Crawford said if the Nevada Association of Hospitals and Health Systems has concerns about the system, which is described in Exhibit C , the Governor’s Office is aware of the progress of the business process reengineering. Mr. Welch said the position of the association is to express concern, and support the aspect of health planning prompted through the development of collaborative initiatives.

Chairman Rawson said the bill would be scheduled for a future work session. The meeting was adjourned at 2:42 p.m.

RESPECTFULLY SUBMITTED:

Cynthia Cook,

Committee Secretary

APPROVED BY:

Senator Raymond D. Rawson, Chairman

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