The Committee on Health and Human Services was called to order at 1:45 p.m., on Monday, May 17, 1999. Chairman Vivian Freeman presided in Room 3138 of the Legislative Building, Carson City, Nevada. Exhibit A is the Agenda. Exhibit B is the Guest List. All Exhibits are available and on file at the Research Library of the Legislative Counsel Bureau.

COMMITTEE MEMBERS PRESENT:

Mrs. Vivian Freeman, Chairman

Mrs. Ellen Koivisto, Vice Chairman

Ms. Sharron Angle

Ms. Sheila Leslie

Mr. Mark Manendo

Ms. Kathy McClain

Mr. Kelly Thomas

Ms. Kathy Von Tobel

Mr. Wendell Williams

COMMITTEE MEMBERS ABSENT:

Ms. Merle Berman

Ms. Barbara Buckley

Ms. Dawn Gibbons

GUEST LEGISLATORS PRESENT:

Assemblywoman Genie Ohrenschall, District 12

Assemblywoman Marcia de Braga, District 35

STAFF MEMBERS PRESENT:

OTHERS PRESENT:

A simultaneous videoconference was held in Room 4412 of the Grant Sawyer State Office Building, 555 East Washington Avenue, Las Vegas, Nevada.

Following roll call, Chairman Freeman announced it would be the committee's final meeting of the session. She then opened the hearing on A.J.R. 24 and asked Assemblywoman Ohrenschall to present her resolution.

Assemblywoman Genie Ohrenschall, representing District 12, explained she introduced A.J.R. 24 at the request of her constituent, Leslie Ortega, who had suffered serious side effects from prolonged steroid use. As a result, Ms. Ortega founded the Steroid Warning Network, a nonprofit organization devoted to providing information and emotional support for those who suffered from steroid related medical problems. Medications containing steroids could be extremely effective; but when safeguards were ignored there could be devastating side effects. People were often unaware of the potential dangers, or might not even be aware the product they were taking contained steroids. Doctors and pharmacists did not always give adequate warnings; sometimes even they were unaware of the product ingredients.

Ms. Ohrenschall cited an incident in Carson City, where her staff called a local pharmacist to ask about over-the-counter steroids. The pharmacist assured her he carried no steroid products in the pharmacy. However, further investigation revealed products such as Cortaid available over-the-counter. Perhaps the pharmacist was simply ill-informed. There were countless drugs being introduced and even doctors could not keep up.

The danger existed with over-the-counter and prescription drugs, not only for people who had latent allergies to steroids, but for individuals who were unaware a steroid could have a harmful affect, or who believed "if one dose was good, two doses was twice as good."

Ms. Ohrenschall presented the committee with a letter from Consumer Healthcare Products Association, in Washington, D.C., (Exhibit C), urging support of A.J.R. 24.

For all those and other reasons, Ms. Ohrenschall urged the committee to pass the resolution because the proponents believed it merited national action.

Leslie Ortega, founder and CEO of the Steroid Warning Network, spoke next from the Las Vegas videoconference site. She stated approximately 250,000 people in 1996 developed Cushing's Syndrome from taking prednisone or other steroids, according to Dr. Orth, head of the endocrinology unit at Vanderbilt University.

A letter from Dr. Ronald Hedger, Medical Director, Health Quest Medical Services, Henderson, Nevada (Exhibit D) stated steroid products were very good if used appropriately. However, most people, including physicians, tended to overuse steroids, particularly topical products. Conditions such as diabetes, Cushing's Syndrome, hypothyroidism, and severe skin eruptions were side effects of chronic steroid use.

Dr. Hedger's letter went on to state he supported labeling of products containing steroids that warned of potential side effects if used inappropriately. In over 13 years of practice he had seen hundreds of patients with steroid related problems after lengthy use of over-the-counter steroid cream.

Chairman Freeman asked if Ms. Ortega was a health care professional. Ms. Ortega said she was not; however she had suffered from the side effects of steroid use and founded the Steroid Warning Network to provide emotional support and information to others.

Ms. Ortega noted surfaces of the skin had different absorption rates. For instance, the forearm absorbed 1 percent, the armpit 4 percent, face 7 percent, eyelids and genitals 30 percent. Products were purchased and applied without supervision or instruction. A label warning of the steroid ingredient and the potential side effects was essential to protecting the unaware consumer.

Ms. Ortega urged the committee to support A.J.R. 24. She said the health and safety of Nevadans and others depended upon the support of their elected representatives to recognize the need for proper warning labels on potentially harmful drugs. The public had a right to know when shots, prescriptions, and over-the-counter products contained steroids and the possible side effects. She said to keep in mind the resolution was for the future as well. While there were mainly skin creams containing steroids sold over-the-counter now, every day there were prescription drugs that were deregulated and sold-over-the counter.

Chairman Freeman asked Ms. Ohrenschall if she had information on what the Federal Drug Administration (FDA) had done in regard to the subject of steroid labeling. Ms. Ohrenschall did not have the answer, however, believed the next speaker would have that information.

Jon Rappoport, a freelance investigative journalist, explained some steroid drugs now deregulated were formerly available only by prescription. The FDA now felt those drugs were safe to be sold over-the-counter. The FDA was not always right nor cognizant of what would happen in the real world when those drugs went over-the-counter.

As an investigative reporter writing articles and books for the last 15 years, one of the main areas of inquiry had been toxic pharmaceuticals.

Mrs. Freeman asked if he was a medical doctor. He said he was not. He had written articles for L. A. Weekly, Spin, Sturn (Germany), and also books on medical research. Mrs. Freeman then asked him to answer the question she asked regarding the FDA's rationale in not requiring labels and allowing them to be sold over-the-counter. Mr. Rappoport stated the FDA felt a 1 percent solution of hydrocortisone used as a skin preparation would not be harmful, if the precise labeling directions were followed. In the spirit of an era of deregulation and under medical advice they went forward. The FDA had been wrong before about other matters, but that was the rationale for their decision. Mr. Rappoport said he would show serious problems could result because of the FDA's decision.

The warning label on most of the products stated: "Do not use this product for more than 7 days. If the symptoms after a few days of having disappeared come back, don't use it again. Go to your doctor and tell him what is happening." The warning on the label sounded good; however, the reality was something else. He said what was needed was to look at the strategy of the companies who manufactured those drugs. The strategy was to get it into the medicine cabinet, next to the aspirin, calamine lotion, and so on, so families used them over time. It obviously increased business. However, the problem was that people would not be using those drugs in the manner as prescribed on the label. When they had symptoms they believed should be treated by those drugs they would use them for a few days and the symptoms disappeared. The scenario then would be the child would come to mother with a complaint, she would say "Let's get out the Cortaid." Ultimately, whenever the child came with a problem his mother would put on more cream, and eventually the child would see the process as an attention-getting measure and would invent reasons for getting the cream. By the time the child reached adulthood he had grown up in an environment in which those drugs were used in very different ways; the on-again, off-again pattern, not the strict warning of 7 days and no more. That child-turned-adult could have some adrenal insufficiency or immune suppression that was beginning to take over, of which he was not aware. Those drugs substituted for the steroid hormone called cortisal which fights inflammation in the body, and the steroid drugs intervened causing the shut down of the adrenal system. When a drug was taken for a natural function, over time an atrophy of the natural function occurred.

Mr. Rappoport then explained what the drug companies had in mind for expanding their market. He showed the committee an advertisement that read "Cortisone for Kids," with "kids" written in a "cutesy-tootsie" style like the Flintstone vitamins or other kid-oriented marketing concepts. He said it was no accident that the pharmaceutical companies like Pfizer adopted that printing style. It was "kid-friendly." Continuing in that vein, he referred to the Pfizer home page on the internet which carried more propaganda about their product Cortisone 10 in the same "kid-friendly" style, and stated the product was "unsurpassed for relieving rashes and itches." It further stated, "Cortisone 10 offers relief from itching caused by a variety of skin irritations. During the summer Cortisone 10 stops the itch and helps heal insect bites. In the winter can be used for itchy patches of dry winter skin." He continued to read the second internet page which contained questions by consumers and answers by Pfizer; one of which stated soap and water could irritate skin. To which Mr. Rappoport retorted, "soap and water should not interfere with the action of doing business on a gigantic global scale by Pfizer."

Assemblywoman Von Tobel commented she had been a Pfizer stockholder at one time. She believed it was a serious issue under discussion; however, she felt Mr. Rappoport was editorializing against drug companies and products that did have FDA approval and were on the store shelves. "You are not a physician and I am somewhat concerned about your editorial perspective. You are a journalist, and I really don't appreciate it. I think if you were going to make fun of drug companies perhaps we should have them here representing themselves. If you could just keep your remarks more to the resolution, I would appreciate it. Thank you."

Mr. Rappoport said they obviously disagreed but her point was well taken. He went on to discuss the Upjohn website, from which one could click on to a much larger pharmaceutical website called "Planet X." Upjohn was the manufacturer of many cortisone products.

Mrs. Freeman asked Ms. Ohrenschall what she believed was the role of the committee in the issue. She replied, because over-the-counter drugs traveled through interstate commerce to have something effective achieved it must be done federally, which was the reason for the resolution.

Mrs. Freeman noted the issue had been heard by the standing health care committee and asked Marla Williams to explain what had happened.

Marla Williams, committee policy analyst, said when the Legislative Committee on Health Care adopted its recommendations, members had asked her to send a letter to the Board of Medical Examiners as well as the State Board of Pharmacy identifying the concerns brought forward in testimony. That was followed up with a letter to members of Congress indicating there was concern in the State of Nevada for the issue, based on Ms. Ortega's previous testimony to the committee.

Next to speak was Larry Matheis, executive director, Nevada State Medical Association, who voiced support for A.J.R. 24. He explained the legislature was being requested to ask Congress to make sure they looked at the sunshine issue. There were people who needed to know that element was in products and with that information they would act differently. For some people there were serious health consequences. The resolution assured that information about steroids appeared on the label and encouraged Congress to have the FDA mandate that. It seemed a perfectly reasonable resolution and a good action on the part of the legislature. It was something that affected Nevadans every day.

Mrs. Freeman noted that Mr. Matheis kept abreast of what was happening in Washington, D.C., and wondered if he was aware of any Congressional proposals. Mr. Matheis said there had been talk about a range of issues regarding the FDA and information that needed to be redone. He did not feel action would be taken in 1999, and for that reason a resolution such as A.J.R. 24 was useful for Nevada's Congressional delegation to ensure when the issues came up they acted on them. He did not know where the issue stood from a priority perspective, but felt Washington had its collective mind on more weighty matters.

Ms. Ortega, again from Las Vegas, made additional comments and presented statistics from the Kaleidoscope Interactive News Features Personal M.D.

• Each year Americans purchased 5 billion over-the-counter drug products.

• Consumers were required to use their own judgment when choosing from approximately 100,000 over-the-counter drugs which treated ailments ranging from cold and cough to severe heartburn.

• Although generally safe, misuse of over-the-counter medications resulted in more than 170,000 hospitalizations each year at a total cost of $750 million.

• Studies showed that better consumer education and information would reduce the figure by half.

She quoted a letter from Assemblywoman Barbara Buckley that stated, "Careful warning of possible side effects seems only to make complete sense. It seems to me that federal regulation may be required with regard to labeling as products containing steroid ingredients cross state lines."

Ms. Ortega then read from a letter written by Doris Skewes, whose husband died as a result of steroid side effects. The letter was written to a pharmacy by Mr. Skewes and Mrs. Skewes just recently found it: "My letter is in reference to medications that contain steroids, proper labeling and apparently incompetent employees. During the time between 10/14/96 and 3/10/97 I received prescriptions of prednisone 20 milligrams with directions to take 3 tablets by mouth every day for a total of 60 milligrams. On 11/6/96 I received a prescription for 5 milligrams of prednisone with directions to be used as directed for taper down. I told them that I did not have any info from my doctor to taper down. I was told that I had to call my doctor about it. I called my doctor but as usual his assistant answered my call. I told him what happened and he stated there were not any prescriptions for 5 milligram steroids and that the pharmacy must have made the mistake. On several occasions I asked about 60 milligrams being a lot to take each day. The answer was always follow your doctor's directions. My condition kept worsening so I went to the doctor on April 5, 1997. He put me in the hospital that day. I had diabetes with a glucose reading of over 500, which was caused by overdoses of prednisone steroids. It took me 5 months before I rid myself of the steroids. I had nurses coming to the house for about 4 months. I now have an Invacare 5 oxygen machine and Pulmamate Nuvalizer along with portable oxygen that I use every day. I blame the doctor for all my troubles, my condition today, and all the worry that my wife has gone through and ended up in the hospital with a stroke. I do believe that your pharmacy also was negligent and should have warned me about the medication. If they had I'm sure I would have long before April 5, 1997, gone to another doctor. It could have saved me two hospital stays, saved my dollars on prescriptions, and I would be in much better condition." Ms. Ortega added they now realized it could have saved his life.

In conclusion, Ms. Ortega said the proponents of A.J.R. 24 were not opposed to steroids, they knew they could be beneficial when used properly. However, because of the accessibility of over-the-counter products, as well as prescribed products, labeling the product contained steroids was essential.

Mrs. Freeman asked if the committee was ready to make a motion.

ASSEMBLYMAN THOMAS MOVED TO DO PASS A.J.R. 24.

SECONDED BY ASSEMBLYMAN MANENDO.

THE MOTION CARRIED.

Mrs. Freeman moved on to the presentation by the Nevada Indian Commission.

Richard Harjo, chairman of the Nevada State Indian Commission, stated he and his group had come to answer the committee's questions, as contained in a letter he had received from the director of the Department of Human Resources.

The first question, "Where is the biennial report for the last two bienniums?" Mr. Harjo digressed briefly to explain he had been chairman since 1994, which was the beginning of the legislative session. At that time he was scheduled to meet with then Governor Miller. He submitted a report to his assistant, Mr. Crowley. He did not hear what happened to it, nor had he heard anything from the Governor. As far as he knew, it was still in the Governor's Office. Mr. Harjo had not submitted a report for the current legislative session.

Mr. Harjo explained the membership of the Indian Commission was comprised of five members under the statutory authority under Nevada Revised Statutes (NRS) 233A.020. Those members were: Mr. Harjo, on the commission since 1994 and appointed through 2001; Peggy Lear Bowen, a member since 1985, whose commission will expire in 2001; Dr. Louis Bertsch, appointed in 1991 to 2001; Patricia Hicks, appointed in 1998, whose commission will expire on October 30, 2000, and there was one position which had been vacant for about 6 months.

Mrs. Freeman asked why the vacancy existed for so long. Mr. Harjo said there had been vacancies long beyond that, even though they were appointed positions. There were two tribal chairmen appointed for 4 years and he never saw them once. He saw them on the periphery, walking the halls of the legislature, but they were not physically present on the commission. He added he had been operating with only three people, until Patricia Hicks came on in 1998. There were 26 independent tribal entities in the state as well as two large urban groups. It was like dealing with 28 legislatures. It was complex, and then there was also the Bureau of Indian Affairs and all the subgroups that had anything to do with Indian country.

As to the vacancy, in his opinion the tribal chairmen were not good choices. It was not that they were not capable, they just did not have the time. If there was a provision where they could send an appointee, that would be fine, and would allow the commission to operate with a full complement. The members were paid $80 a day plus expenses. However, Mr. Harjo and Patricia Hicks were state employees so they did not receive that. They performed their duties for free because they believed they had a civic obligation to their culture to do something.

Another question concerned the ongoing activities of the commission. Mr. Harjo provided copies of agendas for 1998. Beginning March 21, 1998, they did the introduction for the Indian education consultant position. Mr. Harjo explained the commission asked for that in the last biennium because the State Board of Education had been unsuccessful for four legislative sessions to procure that position. It was not until the Department of Administration felt that it was an inappropriate placement within that position, so the bill was rewritten and resubmitted, and ultimately funded on a contingency basis. He hoped it was funded under the base budget so it would not be necessary to come back year after year to plead for the valuable position.

Mr. Harjo explained what it did for minority leadership was to furnish the tools to actually look at what was happening to Indian children from a longitudinal standpoint from the time they started kindergarten until they finished college. It was not a very bright picture. The minorities, specifically Indians, had always been at the bottom rung of the ladder when it came to academic performance. Education was the shortest route to success, and it promoted positive, responsible citizenship for people who were gainfully employed law abiding, tax paying citizens. Mr. Harjo stated it was his goal to see that happened for the children. Moreover, as one of the Indian leaders in the State of Nevada it was his job to see that it got funded.

Mr. Harjo continued to relate the events discussed at the quarterly meetings. One subject was the Spirit Caveman. The remnants of an elderly gentleman, approximately 9,500 years old, were found in Fallon and the tribe believed it was part of their lineage. They had been trying to obtain the remains for some time.

Gerald Allen, executive director, Indian Commission, provided background on the Spirit Caveman. The remains were discovered in 1945 and placed in the Nevada State Museum where they remained. In the interim it had been determined the age of the mummified remains were over 9,000 years old. The Bureau of Land Management (BLM) contended since the remains were that old and because they were discovered on BLM land they should not have to turn them over. Mr. Allen stated he did not believe the BLM was in existence in 1945. Nevertheless, the BLM wanted further testing of the remains. The Native American-Fallon tribe did not want that to happen. The struggle was ongoing with neither side willing to give up its position. In fact, Mr. Allen said in talking with the chairman of the Fallon tribe he learned either the Fallon tribe or the Pyramid Lake tribe would file a lawsuit.

Mr. Harjo then provided details of the June 25, 1998, quarterly meeting. They had discussed the Rio Tinto and Leviathan Mines. They also visited the Rio Tinto Mine, located about 100 miles north of Elko. Even though the mine had been shut down for 40 or 50 years, certain chemicals that had been used within the mining area were still seeping from the ground. The smell was very strong, and when the ground got wet the chemicals cascaded down the hill into the Owyhee River that ran through the middle of the Duckwater Indian Reservation. The river was the primary water source for the livestock; ranching was the chief livelihood of people on the reservation.

Chairman Freeman remarked it seemed like a good candidate for a superfund project. Mr. Harjo said they had actually looked into that and it had qualified on a limited basis. A portion of the embankment was shored up and built up higher, but was only a temporary measure. He did not know what else would be done to reclamate the area. Mrs. Freeman asked if someone owned it in Nevada. Mr. Harjo believed it was owned by an elderly lady in the midwest who had no interest in the mine. Someone had apparently tried to make contact with her, but she wanted nothing to do with it. He added they would keep pressing the issue in the hope that someday someone would say, "It's time." Perhaps when the population increased in that area. He also noted there had been testimony from the members of the Indian tribe up there who said that periodically they had wildlife killed because of the chemical waste that percolated during the snow melt.

At the August 29, 1998, meeting, Mr. Harjo said there were chairman elections that had been deferred for many months because a full membership had not been present. They also discussed the executive budget for fiscal year 1999-2001, the Spirit Caveman and Rio Tinto and Leviathan Mines issues, and emergency awareness. He explained that most people easily forgot the smaller reservations that were tucked away in remote areas. There had been no collaboration with regional or state agencies following the flood that devastated downtown Reno, the Carson area, and Yerington a few years ago. The Indian population in those isolated areas endured the same kind of destruction as others had with their main roads destroyed and homes washed away. Finally, after many calls by the commission and demands for action, they got some help. However, because the population was not identified in statute as a governmental entity, they were not included in the infrastructure discussions that took place in each county. Mr. Harjo said that should be borne in mind by the committee.

Also discussed at that meeting had been the Carson Indian Defense Committee, and two speakers talked about what was happening in connection with a beating that occurred in Carson City. That incident had the Indian and the Hispanic community up in arms. Mr. Harjo said the commission finally intervened with the Hispanic leadership to ensure there was not a serious cultural breach. Another topic was the Native American religion prison sweatlodges. Regarding legislative concerns from Indian country, he had advised the chairmen there were deadlines that needed to be met but said he received no response from any of the tribal entities. He also called Inter-Tribal Council to remind them in case they had simply overlooked the matter, or if they needed a sponsor for specific concerns, but nothing was forthcoming.

Chairman Freeman introduced a letter received from Cassidy Williams, tribal chairman, of the Walker River Paiute Tribe (Exhibit F). He regretted being unable to attend the hearing and asked his letter be entered into the record. Some of the concerns expressed were as follows:

• The Nevada Indian Commission served a very important role for Nevada tribes; however, Mr. Williams believed the commission had not been fulfilling its responsibilities to the tribes.

• No one from the commission attended the May 5, 1999, hearing on S.B. 10, nor had anyone attempted to follow-up with Mr. Williams.

• Mr. Williams believed an essential commission function was to communicate to the tribes about the issues introduced during each legislative session. In the current session there were five bills that impacted Native Americans, of which the tribes had not been aware nor been able to testify.

• He recommended a change in the commission membership. Members needed to have more awareness of the operations of the tribes. The commission needed to communicate directly with the tribes and not expect the Inter-Tribal Council to be the only forum where they could be reached.

• Finally, they would be better able to resolve problems when they were allowed to participate in their solutions.

Assemblywoman Leslie referred to the handouts from Mr. Harjo (Exhibit E) and noted Peggy Lear Bowen had been on the commission since 1985, which she believed was a very long time. She asked if there were no restrictions on number of terms. Mr. Harjo advised the appointments were made by the governor. Ms. Leslie asked if they were simply reappointed many times. Mr. Harjo said "Yes." He noted, however, if the tribes were dissatisfied with the performance of any member, all they had to do was send a letter to the Governor's Office identifying the problem so they could look into it.

Ms. Leslie then asked when Mr. Harjo last submitted a report. He said it was in 1994, just prior to a scheduled appointment with the governor that the governor then cancelled. Ms. Leslie noted the commission was 5 years behind. Mr. Harjo said it was 10 years, because for that period the Indians had just not been noticed. He had tried repeatedly to converse and meet with then-Governor Miller, but letter after letter met with no response. He was hopeful of being able to increase the dialog with Governor Guinn.

Ms. Leslie said she grew concerned when something like the requirement for an annual report was in statute but was not followed.

Mr. Allen interjected one of the reasons was the commission had tried to get a meeting with Governor Guinn, and they wanted to establish a good rapport with him, which they had not succeeded in doing with Governor Miller.

Ms. Leslie asked if the objectives, shown on page 12 of Exhibit E were current. Mr. Allen said they had established some other priorities, one had been to improve the cultural differences with the Hispanic community.

Assemblyman Williams wanted further clarification regarding the required reports. Mr. Harjo said he submitted one report in 1994 when he had joined the commission to fill a vacancy. He was later appointed to his present position. The 1994 report had not been a full-fledged report.

Chairman Freeman asked Charlotte Crawford to comment on the report issue from her perspective.

Mr. Williams interjected reiterating his question about the missing reports. He asked also why the commission was aggressively seeking a meeting with the governor when no reports had been submitted for so many years; what would they have to discuss. Moreover, there had been five bills before the legislature in the current session that impacted Native Americans and the commission had not appeared at any of the hearings to at least inform the various committees what their interests were and what action should be taken. He added there were some crucial issues facing the Native American population in the state and the commission seemed to be dropping the ball when it came to promoting those issues. Finally, Mr. Williams noted there had been many Native American issues introduced in the 14 years he had been in the legislature, and he emphasized he wanted to be supportive of those issues. However, it would behoove the commission to step up their pace and start to adhere to the statute. If the members on the commission were not going to do what the statute mandated, they should remove themselves and new members should be appointed who would be about the business of finding out what was going on with families, health care, education, and so on. That kind of active interest would certainly make the governor want to meet with them.

Charlotte Crawford, director, Department of Human Resources, said she had listened to testimony heard a week earlier regarding S.B. 10 and the Nevada Check-up. At that meeting an advisory committee had been proposed and some of the tribes indicated a concern that by forming an advisory committee through the Indian Commission it might not be the best vehicle. She wanted to get the best input possible regarding the Check-up program. She asked Janice Wright, administrator of the Division of Health Care Financing and Policy, to meet with the tribes and was pleased to learn the relationship with the Indian community was very good and their response to the Check-up program had also been very good. They did express concerns regarding their recognition on the Native Americans in statute and asked for continued support of S.B. 10, because it embodied for the first time an advisory board for Native Americans.

Ms. Crawford added she agreed and understood their concerns that the role and vision for the Indian Commission probably not been considered in quite awhile. She did not have a long history with the Indian Commission since it was incorporated in the Department of Human Resources during the reorganization. The agency was a small office; one person and a support person, and admittedly they had not put any resources into it, nor spent a lot of time considering the vision for the commission or what role it might play relative to all state government in representing the tribes. She added she would support any effort and looked forward to working with the interim health care committee to have further discussions and think through more carefully what could be done to help the Indian Commission be more responsive in the future.

Chairman Freeman said something the committee could do now would be to send a letter to the governor, explain their concerns, and express hope of being able to work on those issues in the interim.

Assemblywoman Leslie then asked Ms. Crawford about the goals and objectives of the Indian Commission as stated on page 12 of Exhibit E. Ms. Crawford believed the statement referred to part of the biennial report from the Department of Human Resources and not something separate from the commission. Ms. Leslie asked to have more current information. Ms. Crawford said she would work with the commission on their current objectives. She further suggested the Department of Human Resources was one of the first departments Governor Guinn had scheduled for the fundamental review. The committee might want to encourage the Governor to look at the role of the Indian Commission and from the department's perspective they would certainly encourage a review of that.

Chairman Freeman said the budget should be examined as well. Everything she had heard so far said they did not have the money to do the job. Ms. Crawford said the budget was $110,000 for the first year and $111,000 for the second year.

Assemblyman Williams said the Chair's suggestion regarding the letter was good. The dilemma the commission members faced was in not being able to get a meeting with the governor. By virtue of the fact statute mandated an annual report be sent to the governor and to the legislature gave certain appropriateness to the committee's letter. It should be clear that the committee did expect to receive a copy of the report and was writing the letter to the governor to be of assistance to the Indian Commission. Mr. Williams asked if the Chair wanted him make a motion on that. She did.

ASSEMBLYMAN WILLIAMS MOVED TO SEND A LETTER TO GOVERNOR

GUINN REGARDING THE INDIAN COMMISSION.

ASSEMBLYWOMAN LESLIE SECONDED THE MOTION.

THE MOTION CARRIED.

Gerald Allen said he had sent the budget to the Legislative Counsel Bureau for a hearing. He called several times to find out when that would be and was finally told the budget was so small, and nothing had changed, so it would simply be passed.

Assemblywoman Leslie acknowledged the budget might seem small in relation to the much larger budgets the legislature considered; however, as a nonprofit person she felt $200,000 over the biennium was sufficient to warrant the annual report being submitted.

Mrs. Freeman suggested Mr. Harjo might discuss the commission's issues with people he knew in the Senate where he might get some additional help as well. Mr. Harjo responded with a final note that the commission had been struggling for some time and would return in 2 years and hold Mr. Williams to his promise of support. One of the things he had wanted to do when he became chairman was to reorganize and get "contemporary" but said he did not have the support of the other members then.

Assemblywoman Von Tobel related what she had learned about budgets from her experience on the Committee on Ways and Means. If they were base budgets with minor or no enhancements then sometimes they were not heard. She noted also in 1997 the commission had received some enhancement; an additional phone line that enabled them to have a fax machine. Mr. Harjo appreciated those enhancements and remarked now for the first time they had a full-fledged computer and fax line, and while they were about 5 years behind the modern office they did have more than before.

Mrs. Freeman remarked with Ms. Leslie's comments in mind they had a challenge for the next session in regard to the budget.

The final item on the agenda was the presentation concerning metabolic disorders and access to services. Mrs. Freeman noted Assemblywoman de Braga had a bill earlier in the session to raise the insurance coverage for phenylketonuria (PKU). The reason behind the bill was to raise access to services for people with PKU. Ms. de Braga was concerned how people found services in Nevada when they did not have health insurance.

Yvonne Sylva, administrator, State Health Division explained Ms. de Braga had a constituent who adopted a baby from another state who suffered from phenylketonuria, most commonly known as PKU. It was a disorder that occurred when the amino acid phenylalanine was not properly absorbed into the body and pooled itself. If the newborn did not receive timely medicated formula the child could go on to be profoundly retarded as an adult. The earlier the formula was administered the better chances for the newborn to live a productive life. The phenyl-free formula cost between $4,000 and $8,000 a year for a newborn, and when the child required food subsidies later in life the cost was about $150 a month. Those were the costs passed on to the family if they were able to pay; if not able to pay the Health Division picked up the cost for that formula.

Ms. Sylva continued to explain the constituent adopted a child in Idaho and brought the child back to Nevada 2 weeks after birth. Because it was a private adoption, the newborn was not tied in with a normal network one would associate with services. The nurse in Idaho told the mother when she returned to Nevada she needed to see a public health nurse who would link the family with newborn screening, which was the vehicle in Nevada and every other state for access to services. Ms. Sylva spoke to the mother as soon as she learned of the problem. The mother had apparently contacted a community health nurse and asked where to get formula for the baby; apparently not asking for the phenyl-free formula that would have been a significant clue. The nurse took an income level statement and found the parents not eligible for subsidized services from the Health Division. The mother was at a loss, and Ms. Sylva felt the Health Division was remiss in not following up. The mother, however, contacted the public health nurse in Idaho who tied her in with the newborn screening program in Nevada, and she was then set up with the physician at special children's clinic and linked with services. The mother and child participated in quarterly clinics conducted through a contractual agreement with a physician in Oregon, because there were no metabolic physicians in the State of Nevada, who visited quarterly.

Children with PKU were tested as often as twice a week as newborns, blood samples were taken and sent to Oregon for assessment to see if the formula required adjustment. The testing and monitoring was ongoing and paid by the Health Division regardless of the parents' ability to pay.

Ms. Sylva added the most essential person in the treatment of a child with PKU

was the nutritionist. If the child never saw a doctor and only saw a nutritionist, and the formula was adjusted, the child could do well.

She was pleased to see that during the current session the Health Division received the services of three full-time nutritionists; two provided services to children with inborn errors in metabolism.

The incidences of PKU were not great, occurring about 1 in every 10,000 to 15,000 births in the state; however, it was serious. There were networks in northern and southern Nevada, and through the community health nurses in rural Nevada. The Health Division contracted with pharmacists, Medicaid would also pay for formula and treatment, and arrangements had been made with United Parcel Service (UPS) for drop-shipment at the family location so the newborn would receive the formula in a timely fashion.

Assemblywoman Marcia de Braga, District 35, touched on many of the points made by Ms. Sylva. She explained she had wanted to introduce a bill to facilitate access to services for people in remote areas. However, she discovered an order could be placed and delivery made in a very short time, so there was no need for a bill.

Nevertheless, Ms. de Braga believed the present committee or interim health care committee would be interested in reviewing statistics on children who either because their parents did not have insurance or did not know about the disorder, were not getting the formula and food needed, and as a result suffered brain damage.

Ms. Sylva noted the children's special health care program had a program that would provide the formula for all children identified with an inborn error. Based upon 200 percent of poverty level or below, the Health Division would provide the formula at no charge. Also Medicaid picked up the cost if the child was Medicaid-eligible, and now Nevada Check-Up would pick up the cost if eligible for that program. She added she was not aware of any child in the State of Nevada with an inborn error of metabolism who failed to receive proper treatment. She knew of one case where there was noncompliance on the part of the family and the Health Division legally intervened to end the withholding of medical treatment from that child. Another area for concern was when young people chose to become parents it was essential they have genetic counseling so they understood the risks of passing the disorder on to their offspring. There were currently 5,400 children in the PKU registry.

Mrs. Freeman asked for clarification on the adoption of the child in Idaho; did the parents know the child had PKU. Ms. de Braga said the parents did know, the baby was tested shortly after birth; however they had not been provided with the information on how to get needed formula until later.

Mrs. Freeman said it appeared the state agencies were responding to the needs of those parents and children; however, a consideration might be giving to putting it in statute.

Ms. de Braga thought a resolution might be considered to encourage Congress to pursue the research more rapidly, including treatment and a gene-altering surgery that had shown great promise, and she would provide the committee with the research material she had obtained. Mrs. Freeman asked if she wanted a resolution in the current session. Ms. de Braga said she would. Mrs. Freeman then suggested, because there were not enough committee members then present for a vote, for Ms. de Braga to get back in touch with her in a few days when a vote could be taken on the Assembly Floor and get approval for a resolution.

Ms. Sylva asked Ms. de Braga to fax her copies of the research material so she could review it with Dr. Colleen Morris from the school of medicine, as well as the contract physician in Oregon. They could put something together for Ms. de Braga in the way of a resolution, or provide information for the interim health care committee to consider.

Mrs. Freeman said the committee would await Ms. de Braga's decision.

Vice-Chairman Koivisto announced a three-committee end-of-session party on Monday, May 24, 1999, at Bodine's.

With no further business before the committee, Mrs. Freeman note it had been a good session in many ways. She thanked her committee members for their attention and insight, and then adjourned the meeting at 3:30 p.m.

RESPECTFULLY SUBMITTED:

Darlene Rubin,

Committee Secretary

APPROVED BY:

Assemblywoman Vivian Freeman, Chairman

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