MINUTES OF THE
SENATE COMMITTEE ON HUMAN RESOURCES AND FACILITIES
Sixty-seventh Session
March 24, 1993
The Senate Committee on Human Resources and Facilities was called to order by Chairman Raymond D. Rawson, at 3:30 p.m., on Wednesday, March 24, 1993, in Room 226 of the Legislative Building, Carson City, Nevada. Chairman Rawson opened the hearing as a subcommittee as a quorum was not present. Exhibit A is the Meeting Agenda. Exhibit B is the Attendance Roster.
COMMITTEE MEMBERS PRESENT:
Senator Raymond D. Rawson, Chairman
Senator William R. O'Donnell, Vice Chairman
Senator Randolph J. Townsend
Senator Joseph M. Neal, Jr.
Senator Bob Coffin
Senator Diana M. Glomb
Senator Lori L. Brown
GUEST LEGISLATORS PRESENT:
Assemblyman, David E. Humke, District No. 26, Washoe County
Senator, Dean A. Rhoads, Northern Nevada Senatorial District
STAFF MEMBERS PRESENT:
Pepper Sturm, Research Analyst
Susan Henson, Committee Secretary
Judy Alexander, Committee Secretary
OTHERS PRESENT:
Debbie Cahill, Nevada State Education Association (NSEA)
Peggy Lear Bowen, Member, Washoe County Teachers' Association, NSEA and State Board of Education,
Yvonne Sylva, Acting Administrator, State Health Division
Roberta (Bobbie) Gang, Nevada Women's Lobby
Lawrence P. Matheis, Executive Director, Nevada State Medical Association
Mary Ann Wells, Person With Chronic (PWC)
Sandra Daugherty, M.D., Professor, University of Nevada School of Medicine
Daniel L. Peterson, M.D.
Gerald Crum, Co-Chairman, Public Policy Advisory Committee, CFIDS Association of America
Joyce Magnuson, Concerned Citizen
Kelley Elizabeth Jeffery, Person With Chronic (PWC)
Bette McLean, Person With Chronic (PWC), Group Leader, Las Vegas Chronic Fatigue Support Group
Billie Morris, Person With Chronic (PWC)
Lea Rhodes, Person With Chronic (PWC), Co-Leader Reno, Northern Nevada/Sierra Support Group
Chairman Rawson noted for the record Senators Coffin, Glomb, Brown and Rawson were present, constituting a quorum. The first order of business was introduction of bill draft request (BDR).
BDR R-1866: Urges selection of Nevada as state for testing evolving National Health Program.
SENATOR GLOMB MOVED TO INTRODUCE BDR R-1866.
SENATOR BROWN SECONDED THE MOTION.
THE MOTION CARRIED. (SENATORS O'DONNELL, NEAL AND TOWNSEND WERE ABSENT FOR THE VOTE.)
* * * * *
Chairman Rawson opened the hearing on Assembly Concurrent Resolution (A.C.R.) 10.
A.C.R. 10: Designates October as Nevada Child Health Care Month. (BDR R-771)
Debbie Cahill, Nevada State Education Association (NSEA), testified that NSEA sponsored A.C.R. 10 at the request of the delegate assembly. The delegate assembly is the governing body for NSEA. Ms. Cahill introduced Peggy Lear Bowen.
Peggy Lear Bowen, Member, Washoe County Teachers' Association (NSEA), and State Board of Education, discussed the background for the concept of A.C.R. 10 (Exhibit C. Original is on file in the Research Library.). Ms. Bowen testified she taught school for 5 years in McDermott, Nevada, and, with the help of Johnson O'Malley funds, the school was able to test and screen for learning disabilities in the early years of education. She emphasized early detection of learning disabilities gives the young student a better chance in life. Ms. Bowen cited an example of a young student who had been in special education classes in the eighth grade, when it was discovered in actuality he had a 75 to 80 percent hearing loss and a 65 percent vision loss. It was determined the young boy made it to the eighth grade because he tested at the genius level. Ms. Bowen spoke about her own experience with a 9 year old student who contemplated suicide due to his frustrations with learning.
Ms. Bowen stressed the importance of creating a time to focus on children within the communities, and suggested the month of October be set aside, rather than 1 day in October. She pointed out the teachers could work with the health care professionals to set up children's health care fairs. A child could voluntarily go to a health care fair where the medical professionals and paraprofessionals would screen and test for problems. This could be done through community efforts and would have no fiscal impact. Ms. Bowen pointed out undetected disabilities affect classrooms and learning within the classroom. She spoke of the testing recently done in her own fifth grade classroom where it was determined 9 out of 33 children needed to go for further visual testing. Ms. Bowen said the students had not been tested since the third grade and drew attention to the potential impact this could have on learning. Ms. Bowen urged support of A.C.R. 10.
A discussion ensued between Senator Rawson and Ms. Bowen. He questioned if she was suggesting the health care fairs be for the entire month of October. Ms. Bowen clarified the month would be for the communities to focus the children's issues and perhaps choose 1 day during October to do a health care fair. She pointed out a lot of the communities already have adult health care fairs. Ms. Bowen felt information could also be provided by health care systems through the department of education. She stressed the communities, local doctors, and teachers could advise children of the services available through the health care fairs. Children are the least covered by insurance and the most needy.
Ms. Cahill explained the health care fairs would take place within the communities, not on the school grounds, and would be held during the weekend.
Senator Glomb recognized the importance of preventative health care for children.
Yvonne Sylva, Acting Administrator, State Health Division, spoke in support of A.C.R. 10, as referenced in her summary (Exhibit D).
Roberta (Bobbie) Gang, Nevada Women's Lobby, spoke in support of A.C.R. 10. She referred the committee to the booklet distributed to all legislators on March 8th, The Nevada Women's Agenda, which discussed children's health. She read, "Investing in the health of children is an investment in the future. Infants grow and develop in predictable ways. Problems with growth may be due to a medical problem or simply inadequate nutrition. Periodic visits can identify these problems early and permit intervention in a timely manner. This is particularly important since the majority of brain growth occurs in the first 2 years of life. Developmental delays may be due to many causes, including drug and alcohol exposure during pregnancy, birth defects, neglect, prematurity and illness. Many of these conditions may leave permanent delays, however, early recognition can lead to early intervention with improvement in outcome." Ms. Gang urged early diagnosis and treatment of health problems in children. She provided the committee with a handout emphasizing health care for pregnant women, children and adolescents (Exhibit E). She encouraged passage of A.C.R. 10.
Lawrence P. Matheis, Executive Director, Nevada State Medical Association, spoke in support of A.C.R. 10.
Chairman Rawson closed the hearing on A.C.R. 10.
Chairman Rawson opened the hearing on Senate Joint Resolution (S.J.R.) 10.
S.J.R. 10: Urges President and Congress to increase amount of financial assistance allotted to research chronic fatigue syndrome. (BDR R-1314)
David E. Humke, Assemblyman, District No. 26, Washoe County, spoke in support of S.J.R. 10. He introduced one of his constituents and next-door-neighbor, Mary Ann Wells.
Mary Ann Wells, Person With Chronic (PWC), spoke in support of S.J.R. 10, as referenced in her summary (Exhibit F).
Chairman Rawson called for questions and pointed out to the committee he had received 97 telephone calls in support of S.J.R. 10, and 25 of those calls were received from chronic fatigue immune dysfunction syndrome (CFIDS) sufferers.
Senator O'Donnell asked Ms. Wells about the progression of her illness during the past 8 years. Ms. Wells explained it started with flu like symptoms and after 6 months she was not able to get out of bed. Ms. Wells said she was bedridden for 2 years, and since that time has stabilized somewhat with swings in symptoms, depending on the time of the year and high and low pressures in the weather. Ms. Wells stated she is not able to take any medications for relief.
Chairman Rawson asked Ms. Wells if she had gone through any trauma which would have made her more susceptible to CFIDS. Ms. Wells replied, "No."
Chairman Rawson commented he felt S.J.R. 10 would process well today, but wished to point out that although it would go to the U.S. Congress, a lot of time could go by before this is resolved.
Chairman Rawson introduced Sandra Daugherty, M.D., Professor, University of Nevada School of Medicine, and pointed out to the committee she managed one of the first grants to study CFIDS.
Dr. Daugherty testified she directs the Division of Community Medicine in the Department of Family and Community Medicine. She stated her medical specialties are epidemiology and preventive medicine.
Dr. Daugherty explained $50,000 was appropriated by the Nevada legislature to the state health division to do a study of chronic fatigue syndrome (CFS). The state health division subcontracted with Dr. Daugherty for the study. She received $30,000 from the Bently Corporation of Nevada and a $19,000 grant from the William H. and Mattie Wattis Harris Foundation, for a total of $100,000. The purpose of the study was threefold: (1) to determine the prevalence of chronic fatigue syndrome in the population of Incline Village/ Crystal Bay area; (2) to document the natural history of the disease in this population; and (3) to identify risk factors associated with its occurrence. She explained risk factors as attempts to discover why certain individuals develop the disease, whereas others do not, and stated she would not be discussing the risk factors today as the analysis of the data has not been completed.
Dr. Daugherty testified CFS was not invented in Nevada, has been around for many years and has been called a number of names. The study was focused in Nevada as it appeared to be in epidemic proportion in that community, during 1983 to 1987, as compared to other parts of the country. In other parts of the country, as well as other parts of Nevada, this disease is called endemic and not epidemic. The study began in 1989 and was retrospective, as most of the cases had already occurred.
Dr. Daugherty explained the study, table 1 (Exhibit G), began with a survey of the households of the two communities in November of 1989, and continued for 6 months. The study identified individuals in the households who felt they had the illness. The study was able to get 60 percent of the total households to complete the household survey, and 300 individuals reported they had the illness. Some of individuals claimed they had the illness, but did not wish to be interviewed further, leaving 225 individuals to be interviewed. The design of the study was a case control study. For every case interviewed with the illness, there was a control individual who was healthy, for comparison purposes.
The study found 11 individuals under the age of 16 who were not interviewed. The study confined the interviews to individuals 20 years of age, and older. Dr. Daugherty referred the committee to table 2 (Exhibit G), which showed one-third of the 300 reported cases were men, and two-thirds were women. Most of the cases occurred in 30- and 40-year-olds, however, cases are reported from childhood up through the age of 80 years.
Dr. Daugherty explained the study applied the Centers for Disease Control (CDC) diagnostic criteria to the 300 cases. The study identified a number of individuals who met the CDC criteria for diagnosis. She said the study then identified and interviewed approximately 135 confirmed cases that met the criteria.
Dr. Daugherty directed the committee to table 4 (Exhibit G), wherein the study identified the attack rate for that population. Out of the 135 confirmed cases, of which the ratio of women to men was about 2.5 to 1, most of them were between the ages of 20 to 59 years, and the total attack rate was 4.1 percent, in the population of Incline Village/Crystal Bay, which is extremely high. In other words, 4.1 percent of this population was identified by the CDC criteria as having this illness. Dr. Daugherty wished to point out the interviews were done 4 to 5 years after the onset of the illness, and many individuals left the community, or did not participate in the survey.
Dr. Daugherty read her summary (Exhibit G). She pointed out chronic fatigue syndrome is reported 2.5 to 3 times more frequently in women than men. She stressed the effect this statistic has on families, especially single parent families with the woman as sole provider. Dr. Daugherty remarked the illness does not kill, except for suicide, which has a high incidence.
Dr. Daugherty urged passage of S.J.R. 10.
Senator O'Donnell asked Dr. Daugherty if she had done any studies outside the Incline Village/Crystal Bay area? She replied she had done another case control study conducted through extensive, 1-1/2 to 2 hour, interviews with approximately 100 patients who claimed to be ill with CFIDS. She explained she had not been able to analyze the data due to lack of funds.
Senator O'Donnell questioned if the illness appears to be isolated to the one area. Dr. Daugherty asserted the illness is found nationwide and worldwide. She stated the illness has a broad spectrum of effect on its patients. The senator asked if the illness was difficult to detect. Dr. Daugherty stated the biological markers are not certain and currently there is no biological test to identify chronic fatigue. She pointed out to the committee that as she interviews those who are ill, the story is exactly the same from patient to patient, and thus it becomes easy to apply the CDC criteria for diagnosis. However, doctors must be willing to wade through a long list of patient complaints as the symptoms affect every system in the body. She explained there are series of test which point to, in all probability, the patient having chronic fatigue syndrome.
Chairman Rawson asked if the patients were generally depressed due to the longevity of the illness. Dr. Daugherty replied the patients are clinically and psychologically depressed. The chairman asked Dr. Daugherty if there was any predisposition to depression, a reaction to depression. She answered that almost all of the patients are depressed, but very few had a history of depression before the illness began.
Senator Coffin asked if the patients were administered and showed any improvement on antidepressants, such as prozac. Dr. Daugherty said there is some relief, but it varies from patient to patient. The senator asked about studies through autopsies. Dr. Daugherty commented there is some information of individuals who have died and had chronic fatigue syndrome. Some changes were found in their central nervous system.
Senator Glomb drew attention to the number of telephone calls she had received, at the office and at home, remarking on the number of people afflicted with CFS. She asked if there was any evidence as to why the illness affects more women than men. Dr. Daugherty said there is no information currently, but may become more apparent after completion of the data analysis, in terms of risk factors. She pointed out 50 percent of the individuals show a history of having had infectious mononucleosis earlier in their lives. Infectious mononucleosis is caused by a herpes virus, which is the Epstein Barr virus. In the beginning, it was thought this illness, CFS, might have been related to the Epstein Barr virus, but the individuals are probably susceptible to all the herpes virus, be it herpes simplex, shingles, fever blisters, aphtha, dermatitis or cold sores in the mouth. This appears to reflect a decrease in immune function. The herpes infections are opportunistic infections in these individuals and they do not have the immune structure to fight these simple herpes virus'.
Senator Glomb asked if parents are found to have the virus, is there a correlation in terms of children having a susceptibility to the illness? Dr. Daugherty pointed out in the series she studied, there may be a mother-daughter relationship. Generally, the study shows if a patient has CFS, no one else in the family has had the illness. Dr. Daugherty emphasized this is the only community-based study that has been done in the country.
Senator Neal asked what had been done with regard to studying the history of the individual and the environmental condition of the area. Dr. Daugherty explained the cases were identified in 1991 to 1992 and the study has not had the opportunity to follow up on these cases. Senator Neal discussed his diagnosis of histoplasmosis, which is common in the Mississippi River Valley and Ohio River Valley. The doctor was able to diagnose this condition after questioning the senator extensively about his boyhood history. Dr. Daugherty emphasized the study has extensive medical histories on all the individuals, and to date they have not sifted through all the data, which they hope to do within the next 6 months.
Daniel L. Peterson, M.D., testified and urged support of S.J.R. 10, as referenced in his summary (Exhibit H). He stated he was involved in the initial outbreak of CFS which occurred in Incline Village in 1984 to 1985, and has continued to devote the majority of his career to the evaluation and management of the chronic fatigue patients. He pointed out since the legislature last addressed this issue, a tremendous amount of information has been compiled from the funds appropriated to Dr. Daugherty and her associates. The work has been published and presented at national meetings and has spurred a great deal of interest in the syndrome nationally, and has attracted the attention of the National Institutes of Health and their epidemiological branches. He reiterated it was money well spent.
Dr. Peterson wanted to stress that Dr. Berch Henry, University of Nevada, Reno, has been very active in the herpes laboratory in identifying a novel herpes virus in CFS patients, which has subsequently been identified as human herpes virus number six (HHV6). Dr. Henry's observation that reactivation of this virus is an unusual finding, and is present in a vast majority of these patients, has stood the test of time, and has been duplicated in the National Institutes of Health laboratories of Dr. Ablashi. Dr. Ablashi feels this is one of the most characteristic markers of the syndrome.
Dr. Peterson discussed involvement in four autopsies of his patients who had committed suicide, and pointed out one of the striking findings has been lymphocytic infiltrates in the brain tissue in the presence of HHV6 virus. Dr. Peterson did not mean to imply this is the cause of the illness, but merely an indicator of reactivation and some immune derangement in CFIDS patients. He pointed out these major developments took place because of the legislative action which drew attention to the problem in northern Nevada.
Dr. Peterson testified he has also been involved in the treatment of the CFIDS disorder, and has proceeded with double volume placebo control trials, or phase three clinical trials, as the Food and Drug Administration (FDA) refers to them. His office is one of the sites for this therapeutic trial in northern Nevada. CFIDS is a complex disorder, characterized by incapacitating fatigue, neurological problems, muscle aches and pains, swollen lymph nodes, sleep disorders, personality changes, etc. A number of laboratories have found CFIDS to have distinct differences from primary depression. He explained he can now do spec scans, which are also very useful in diagnosing primary depression. The spec scans taken on CFIDS patients are very different than those for primary depression and in fact, the spec scans for CFIDS match other organic brain syndromes more closely, such as alzheimer disease, multiple sclerosis, etc. Additionally, the Minnesota multi-phasic personality inventory (MMPI) profiles of CFIDS patients are not indicative of primary depression. The vast majority of the patients do have secondary depression, as do most patients who have chronic illnesses.
Dr. Peterson commented in the long term follow up, he did not necessarily agree with statistics that the vast majority of the patients recover in a 2-year period, as that has not been his experience. He felt those patients who are going to spontaneously improve, do improve, and the others remain very disabled. In the drug trials, Dr. Peterson uses karnossky scores of 20 to 60. The disability cannot be exaggerated enough in terms of loss of family relationships, loss of jobs, and true economic disaster. The economic disaster has been felt to be greater than that of AIDS in that the patients do not die, but persist in being disabled for prolonged periods of time. Dr. Peterson stated he had a number of young patients under State Industrial Insurance System (SIIS) awards claiming a relationship between their work environment and contracting CFIDS. Patient suicide numbers are striking, compared to the suicide rate in Nevada.
Dr. Peterson made mention of a study done in Australia with regard to incidence figures. The study showed the incidence in Australian communities to be approximately 40 per 100,000. The CDC Centennial Physician's Study, which was done in northern Nevada, excluding Incline Village, utilized reports from individual physicians, and determined an incidence of approximately 4 per 100,000. In the CDC study, they excluded anyone who had any prior psychiatric history, so the study was very pure. Dr. Peterson stated the disease is not unique to Nevada. What is unique is Nevada has taken a leadership role in the research and treatment of the disease. He pointed out the devastating effect the illness has on children due to learning disabilities, and consequently frequent school failure.
Dr. Peterson mentioned new research published by the National Institutes of Health revealing immunological abnormalities that may eventually be diagnostic of the disorder. He told of a panel of immunological studies, which are quite sophisticated, that are almost always abnormal in these patients, including natural killer cell function, alt
ered T4/T8 ratios, and a variety of sophisticated anti-viral enzyme pathways that are perturbated in the disorder. However, the cause of the disorder is not known. The studies in terms of treatment modalities have been primitive. There have only been three published studies showing benefits of agents in well conducted double-blind-placebo controlled trials. There has been a national movement to increase and unify the research on this disorder, and there is a granting process at the National Institutes of Health (NIH), especially for CFIDS, however, they do not have a study section yet, specifically for this disorder.
Dr. Peterson strongly urged passage of S.J.R. 10.
Senator Glomb asked Dr. Peterson how CFIDS is work-related, for those patients receiving SIIS. Chairman Rawson stressed the relationship cannot be shown, which is the point.
Senator Glomb asked how many people nationally are affected with the illness. Dr. Peterson replied it would be at least 100,000, using CDC's conservative definition. However, taking the Australian estimate, it is closer to 1 to 2 million people.
Chairman Rawson pointed out the reason more money is available for AIDS research is because AIDS kills. He stated if CFIDS were a more fatal disease, more money would be going into research. Dr. Peterson stressed they are having trouble getting licensing for those agents shown to effectively treat CFIDS because those agents do not fit under the Compassionate Care Act because CFIDS is not a fatal disease.
A discussion ensued between Senator Brown and Dr. Peterson. The Senator asked if the incidence numbers for CFIDS were higher in Incline Village. Dr. Peterson stated CFIDS is not unique to Nevada.
Senator Brown asked Dr. Peterson if there was any research regarding potential environmental causes. Dr. Peterson said he has questioned the water, the altitude, the ultra violet (UV) light, etc., as clearly there is an epidemic. He stated this is an opportune time to look at the environment, however, there are no funds available for research. A question was raised as to whether CFIDS is a communicable illness. Dr. Peterson's only response was it is a public health concern.
Dr. Peterson stated he has been able to continue working with CFIDS patients as he received some private grants in 1984 to 1985 which allowed him to hire research assistants to do some drug studies.
Senator Neal asked if the doctors are close to determining the cause of the illness. Dr. Peterson remarked it has been determined the patients have immunological deficits, but what causes that problem is unclear.
Gerald Crum, Co-Chairman, Public Policy Advisory Committee, CFIDS Association of America, spoke in support of S.J.R. 10, as referenced in his summary (Exhibit I). Mr. Crum introduced a report to the committee (Exhibit J. Original is on file in the Research Library.) which advises doctors how to diagnose CFIDS, and presents the known methods for treating symptoms of the illness.
Mr. Crum noted for the committee he has been working with Dr. Peterson and is a recipient of ampligen, an experimental drug, which he has been taking for the past 3 years, and although not a cure, it has improved the quality of his life. Mr. Crum pointed out he has not been able to return to work, but because of the drug was able to do volunteer work with the Independent Living Center. Through this involvement, he eventually became a lobbyist for the Northern Nevada Center for Independent Living, as well as the CFIDS Association of America.
Senator Dean A. Rhoads told of his personal involvement with CFIDS as his daughter, at age 16, contracted the illness. Today, at age 22, although still under Dr. Peterson's care, she is able to maintain a fairly normal life. Senator Rhoads urged passage of S.J.R. 10.
SENATOR COFFIN MOVED A.C.R. 10 BE ADOPTED.
SENATOR GLOMB SECONDED THE MOTION.
THE MOTION CARRIED. (SENATOR TOWNSEND WAS ABSENT FOR THE VOTE.)
* * * * *
Joyce Magnuson, Concerned Citizen, discussed with the committee her 12 year old son Shaun, who has been diagnosed with CFIDS. She pointed out it took 3 years to come up with a diagnosis, which finally was accomplished through the University of California at Davis (UCD) and a local pediatric diagnostician. Ms. Magnuson said the diagnosis is often done through the process of elimination, which they did with her son. She said her son, Shaun, suffers with extreme fatigue, impaired memory, mental overload, joint pain, intolerance of temperature extremes, vision problems and a myriad of other symptoms due to the illness. Shaun is only able to tolerate school 1 hour per day through a home study teacher. Ms. Magnuson stressed funding is needed to educate physicians as to the existence of this illness and further research to find a cure. She urged passage of S.J.R. 10.
Senator O'Donnell questioned Ms. Magnuson and stressed the importance of establishing markers and looking at the epidemiology of the illness for causes and cures. He noted passage of S.J.R. 10 is the first step on the national level in setting those markers and identifying the illness.
SENATOR GLOMB MOVED TO DO PASS S.J.R. 10.
SENATOR O'DONNELL SECONDED THE MOTION.
THE MOTION CARRIED. (SENATOR TOWNSEND WAS ABSENT FOR VOTE.)
* * * * *
Kelley Elizabeth Jeffery, Person With Chronic (PWC), discussed her experience with CFIDS. She went away to college at 17 years, having been an honor student from Bishop Manogue High School in Reno. She studied ballet for 10 years, sang, played piano and classical guitar. Ms. Jeffery testified she came down with mononucleosis during her first semester and did not recover. She left college, went home to live with her parents and has been bedridden for 6 years with CFIDS. Ms. Jeffery stated she is currently in bed 20 to 22 hours daily. She urged passage of S.J.R. 10.
Bette McLean, Person With Chronic (PWC), Group Leader for Las Vegas Chronic Fatigue System (CFS) Support Group. She stated the CFS group has documented 125 people with the illness in the Las Vegas area. The majority of the people were diagnosed with the illness outside the area and have moved to Las Vegas after their diagnosis. She stressed the CFS patients do not get much help from the medical population in Las Vegas. Ms. McLean noted for the committee that she was an educated professional prior to her 1979 diagnosis of CFS, had to quit work in 1983 because of the illness, has not worked since that time, and began disability 1 year ago. She requested acknowledgment of the disease and urged passage of S.J.R. 10.
Billie Morris, Person With Chronic (PWC), testified she had been taking ampligen, the experimental drug, since August of 1990. Prior to that time she was housebound due to the illness. She discussed the need for development of markers for the illness and pointed out to the committee the numerous tests she has personally participated in, such as lab tests, spinal tap, psychometric, treadmill, Magnetic Resonance Imaging (MRI), and pellet test.
Senator O'Donnell discussed with Ms. Morris the development of markers in order to understand the characteristics of the virus, and if it is a virus, then hopefully funding for further research to find a vaccine. Ms. Morris pointed out the doctors have not proven CFIDS to be a virus.
Chairman Rawson asked Ms. Morris what is known about ampligen? Ms. Morris indicated the Federal Drug Administration (FDA) has not cleared the drug for anything except phase three trials and it has not been cleared as an investigational drug. The chairman asked if there were side effects from the drug. Ms. Morris stated her side effects are severe photophobia, headaches, and burning sensation from toes up to head. She does not feel suicide or depression are side effects of the drug, although associated with the illness.
Senator Coffin asked how much ampligen costs and how is it administered. Ms. Morris testified she receives 400 milligrams of ampligen, which is administered through an IV, twice a week, taking approximately 30 minutes per session. Ms. Morris stated although she does not pay for ampligen itself, as it is an experimental drug, she does have to pay infusion costs, lab work fees, medical tests and doctor bills related to taking ampligen. She stated Jerry Crum, also in the program, receives ampligen three times per week. It is hoped the funding will enable the doctors to catch CFIDS cases earlier and control the illness with regular medication.
Senator Neal asked if there is a higher incidence of the illness in Incline Village than other places within the states. Ms. Morris felt there is a predisposition for the illness in an individual which is triggered by something that has not been identified.
Lea Rhodes, Person With Chronic (PWC), Co-Leader Reno, Northern Nevada/Sierra Support Group, spoke in support of S.J.R. 10 and wished to respond to Senator Neal's question. She testified her support group covers northeastern California, as well the Reno, northern Nevada area, and of the 300 contact names, three are from Incline Village. She emphasized the epidemic is nationwide and worldwide.
There being no further business, Chairman Rawson adjourned the
meeting at 5:21 p.m.
RESPECTFULLY SUBMITTED:
Susan Henson,
Committee Secretary
APPROVED BY:
Senator Raymond D. Rawson, Chairman
DATE:
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Senate Committee on Human Resources and Facilities
March 24, 1993
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