Director's Council of Public Representatives (COPR)

COPR Alumni

Class of 2003

• Luz Claudio
  New York
• Vicki Kalabokes
  California
• Barbara B. Lackritz
  Missouri
• Debra R. Lappin
  Colorado
• Robert Martin
  Arizona
• Isaac Montoya
  Texas
• Rosemary B. Quigley
  Texas
• Bob Roehr
  Washington, DC
• Douglas Q.L. Yee
  Hawaii

Luz Claudio
Term: 1999–2003

Dr. Claudio balances a research focus on neurobiology and environmental medicine with leadership in community outreach, education, and health policy development in New York City and her native Puerto Rico. As Assistant Professor of Neuroscience at the Mount Sinai School of Medicine, she works closely with local hospitals that serve Harlem and the Bronx and directs a community outreach and education program that connects community organizations with medical researchers to combat local health problems. She recently engaged graduate and postgraduate students in a project to document and map the incidence of asthma in New York City, which has one of the highest asthma rates in the country. She serves as Director of the Community Outreach and Education Program at Mt. Sinai's Center for Children's Health in the Environment, and she regularly speaks to community groups about the effects of environmental pollution on health, providing the scientific information communities need to protect themselves against toxic chemicals. Claudio is a graduate of the University of Puerto Rico and holds a Ph.D. from the Albert Einstein School of Medicine. Her laboratory investigations focus on the study of cellular and molecular aspects of the blood-brain barrier in the attempt to determine its role in immunologic conditions, such as multiple sclerosis, and in environmental exposure, such as lead poisoning. Still in the early years of her own career, Claudio devotes her personal time and resources to providing fellowships for scientifically gifted youngsters from inner-city and disadvantaged neighborhoods to work under her tutelage at Mt. Sinai. Her dedication to underserved populations extends to designing community-based environmental health education programs, one of which recently won an award from the U.S. Environmental Protection Agency. On the basis of her work with communities, Claudio was invited by the U.S. Agency for Toxic Substances and Disease Registry to join its Board of Scientific Counselors and co-chair the Community/Tribal Subcommittee that addresses health issues of African Americans and Native Americans.

Vicki Kalabokes
Term: 1999–2003

Ms. Kalabokes, a health educator, coalition builder, and advocate for medical research, is Chief Executive Officer of the National Alopecia Areata Foundation, a nonprofit agency that promotes research on and raises public awareness of a disease characterized by sudden unexplained hair loss. Believed to be an autoimmune disease, researchers are finding that results from research on alopecia areata can carry implications for a host of other diseases. Kalabokes is past co-chair of the Coalition of Patient Advocates for Skin Disease Research and a member of key standing committees of the American Academy of Dermatology and the Society for Investigative Dermatology, and she contributes to a newly formed Coalition of Autoimmune Patient Groups. Her coalition-building efforts are geared to increasing understanding and strengthening ties among diverse patients, medical professionals, researchers, and legislators. She and the skin diseases coalition are credited with spurring interest in creating the six skin disease core centers under the purview of NIH's National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). She also managed her Foundation's collaboration with NIAMS in jointly sponsoring the first three international research workshops on alopecia areata, at which scientists and medical professionals developed universal criteria and guidelines for future clinical and laboratory studies on this disease. Ms. Kalabokes is active at the community level?recently directing a public education campaign for increased funding in three California school districts?and she has served as a state legislative chair covering women's health, among other issues, for the American Association of University Women in California. She brings to her work as a health advocate an array of talents developed in earlier careers as a teacher, a community college public information officer, and a writer of screenplays. She has used her knowledge and skills to help family members and friends deal with heart disease; high blood pressure; fibromyalgia; lung, bladder, and ovarian cancer; Crohn's disease; multiple sclerosis; depression; and alcoholism.

Barbara B. Lackritz
Term: 1999–2003

Deceased

Ms. Lackritz was a speech/language pathologist for a suburban St. Louis public school district. When she retired, she had been working in the field for 40 years. She was diagnosed with chronic lymphocytic leukemia in 1989 and underwent treatment that included chemotherapy, radiation, and a bone marrow transplant. She passed away in 2003 soon after the completion of her term on the COPR. She provided others with information on hematological malignancies and the illnesses associated with them through her work with the American Cancer Society's Cancer Survivor's Network and as a director of the Association of Cancer Online Resources (ACOR) and the Chronic Lymphocytic Leukemia Foundation. Lackritz was the author of Adult Leukemia: A Comprehensive Guide for Patients and Families (O'Reilly and Associates, March 2001). Lackritz created and managed e-mail cancer support lists that include 45,500 members from 36 countries. These include all hematological cancer lists, cancer support lists, and some solid tumor lists. ACOR hosts over 130 patient lists serving thousands of patients, caregivers, and health professionals. Lackritz ensured that NIH information was disseminated to ACOR's entire online cancer community as well as to local and national health organizations. She also managed Leukemia Links, a Web site that has won awards for its effectiveness in providing information to help patients research their own cancer. Lackritz received a Master's degree in special education from the Columbia University Teacher's College. She was a former member of the City Council of Town and Country, Missouri, and was named Missouri Woman of Achievement in 1986 and Teacher of the Year in 1997. She worked professionally with children who had cerebral palsy, verbal apraxia, hearing and vision impairment, and other neurological and psychological disorders. Because of her husband's illness, she also followed research advances in Parkinson's disease and heart disease.

Debra R. Lappin
Term: 1999–2003

Ms. Lappin has brought a public voice to national health and science policy issues for two decades. Appointed to the NIH Council of Public Representatives at the time of its formation in 1999, Ms. Lappin chaired the Council's first working group on Human Research Protections, which presented a comprehensive report to the NIH Director in April 2001. Ms. Lappin has served as a member of ad hoc advisory committees to the NIH Director addressing NIH Oversight of Human Gene Transfer Research and Trans-NIH Pediatric Research and as an invited public guest at the NIH Budget Retreat. From 1991 to 1995, Ms. Lappin served as a member of the Advisory Committee for the National Institute of Arthritis and Musculoskeletal and Skin Diseases.

In other areas of government, Ms. Lappin currently serves as a member of the Institute of Medicine's (IOM's) Committee on NIH Organizational Structure. She has participated in the IOM's public forum, Clinical Research in the Public Interest, and served as a member of the IOM Committee, Changing Health Care Systems and Rheumatic Diseases. At the Agency for Healthcare Research and Quality, she has served as a member of an advisory committee to examine future directions for the Center for Outcomes and Effectiveness Research.

Ms. Lappin presented the opening address in May at the American Psychiatric Association's annual meeting in a symposium addressing informed consent in global psychiatry. She lectures regularly at the University of Colorado Health Science's Center in the Graduate Program for Clinical Sciences on informed consent, a public perspective.

From 1996 to 1998, Ms. Lappin was the chair of the Arthritis Foundation. During this time, she was instrumental in creating the National Arthritis Action Plan, through a cooperative agreement with the Centers for Disease Control and Prevention, and in founding the Alliance for Lupus Research, through a partnership with Robert Wood Johnson IV. Subsequently, she served as the Arthritis Foundation's senior chair for Health Policy, and in this capacity, organized a public/private think tank to examine cost and access to medications, and served as a founding member of both the Board of the Canadian Arthritis Network and the Board of the Musculoskeletal Research and Education Institute. Today she remains active as an Emeritus Trustee of the Arthritis Foundation.

Robert Martin
Term: 2001–2003

Dr. Martin is a member of the Cherokee Nation of Oklahoma. He became President of Tohono O'odham Community College, located in Sells, Arizona, in 2001. He received his Doctorate from the University of Kansas and served on the faculty of the American Indian Studies program at the University of Arizona. Prior to his appointment at the University of Arizona, he served for ten years as the President of Haskell Indian Nations University. Under his guidance, Haskell made the transition from junior college to a university offering baccalaureate programs.

Dr. Martin has extensive experience in higher education both as an instructor and as an administrator. He served as President of Southwestern Indian Polytechnic Institute in Albuquerque, New Mexico, for eight years before assuming the presidency at Haskell. Dr. Martin served as a member of the Indian Nations at Risk Task Force and on the Advisory Board to the White House Conference on Indian Education. He also served on the Commission on Minorities in Higher Education for the American Council on Education. He is a graduate of the Department of Interior's Senior Executive Development Program, the John Heinz II School of Public Policy and Management, Carnegie-Mellon University, and the Center for Creative Leadership's Development Program.

Dr. Martin was awarded the Liberty Bell Award by the Douglas County (Kansas) Bar Association. The award is bestowed on Law Day USA to recognize individual contributions to human rights. He was also awarded an honorary doctorate from Baker University.

Isaac Montoya
Term: 1999–2003

Dr. Montoya is the Chief Executive Officer at Affiliated Systems Corporation, a Houston 500 company that is the region's leading think tank and research organization. Dr. Montoya earned his Ph.D. at New Mexico State University and is a behavioral scientist with experience in health services administration and in health services research. He has been principal investigator on several federally funded studies of HIV/AIDS prevention and risk behavior change and on NIH-funded grants that examine the motivational behaviors of drug users and the resulting impact on their health and daily lives. He has served as Director of the Department of Laboratory Medicine for several major teaching hospitals, has been a consultant to health sciences centers at Stanford and Vanderbilt Universities, and has been an advisor on Federal projects for community and migrant health centers, family planning clinics, and black lung clinics. Dr. Montoya has studied Hispanic cultures in the southwestern United States and has worked extensively with migrant workers, economically disadvantaged women living on public assistance, and indigent drug users. Currently, he is also a professor at the University of Houston College of Pharmacy, where he is responsible for research and health services courses. Dr. Montoya previously coordinated the health care management MBA program at the Houston campus of Our Lady of the Lake University.

Rosemary B. Quigley
Term: 1999–2003

Deceased

Ms. Quigley was most recently a law clerk to Judge Kermit Lipez on the United States Court of Appeals for the First Circuit. She received her J.D. and M.P.H. (health management and policy) from the University of Michigan in 2000. Quigley embarked on this academic challenge after graduating from Harvard College and working as a senior research associate with the American Medical Association (AMA) Division of Ethics Standards on policy issues affecting medical research and health care delivery. Her experiences in health care ranged from interviewing transplant recipients in Northern Europe to holding the hand of a comatose boy with a brain tumor while on hospice duty, and from counseling people with disabilities about Medicare coverage for experimental therapies to authoring policy on genetic testing of children for the AMA Council on Ethical and Judicial Affairs. She also drafted a report on subject selection criteria in clinical research protocols for the Association. Ms. Quigley, who was diagnosed with cystic fibrosis at the age of six months, had personal experience with clinical research as a participant in a double-blind, placebo-controlled clinical trial. She also provided staff support for the Michigan Governor's Commission on Genetic Privacy and served on the Human Research Subjects Committee at the Veterans Administration Hospital in Ann Arbor. Previously, Ms. Quigley worked as a summer law intern with the U.S. Department of Justice and conducted research for an NIH-funded project on genome technology and reproduction. In 2002, she served on the Advisory Committee to the Director Working Group on Oversight of Clinical Gene Transfer Research. She also was part of the COPR working group on protection of human research subjects.

Bob Roehr
Term: 1999–2003

Mr. Roehr is a freelance journalist and medical reporter who has written extensively on the matrix of medical research, drug approval, and the government's role in setting health policy and paying for medical services. He has written in depth on HIV/AIDS, hepatitis, tuberculosis, vaccine development, and genetics. He regularly reports on meetings of the National Institutes of Health, the Centers for Disease Control and Prevention, and the Food and Drug Administration. Mr. Roehr has written for both medical providers in publications such as those of the International Association of Physicians in AIDS Care (IAPAC) and for consumers in magazines such as POZ. He is the Washington correspondent for the Bay Area Reporter (San Francisco) and a dozen other gay and lesbian newspapers, as well as producing radio and television programming.

Mr. Roehr received an M.S. degree in Foreign Service from Georgetown University and was the only member of his class invited to join the State Department. He served as vice consul and commercial attaché in Porto Alegre, Brazil, and later as press officer and acting spokesman for the Department under Secretary Henry Kissinger. He has received two study fellowships at the Knight Center for Specialized Journalism at the University of Maryland. As a member of the COPR, Roehr's focus of interest has been to better integrate patients and the public as full partners in all aspects of biomedical research. He sees openness of information as crucial to informed consent, and he is working to create mechanisms to facilitate communication between public members serving on the various NIH advisory bodies. At the request of former NIH Director Harold Varmus, Mr. Roehr served on a working group that reviewed NIH policy on gene transfer research.

Douglas Q.L. Yee
Term: 1999–2003

Mr. Yee is a First Vice President of Morgan Stanley Dean Witter in Honolulu, Hawaii, and has earned a solid reputation in his community for his work as a financial advisor and his service in civic organizations. He has earned a B.S. and a M.B.A. from the Wharton School of Finance and Commerce at the University of Pennsylvania, and he applies his business background to helping reduce health disparities, particularly in the alleviation of respiratory diseases, among Hawaii's varied racial and ethnic population. Mr. Yee has been on the Board of Directors of the American Lung Association of Hawaii for 15 years, and he helped to form its Research Committee, on which he served as Chair for three years. He has been particularly effective in building a research program for this organization, which has successfully completed studies of Legionnaire's disease, asthma, and tuberculosis. On the national level, Mr. Yee is a member of the Council of the American Lung Association, where he has served two terms on the Board of Directors, and he currently serves on the organization's Finance and Audit Committee. Mr. Yee is President of the Hawaii Chinese Civic Association, President of the University of Pennsylvania Alumni Club of Hawaii, and an active member and past president of the Rotary Club of West Honolulu. He and his wife, Caroline, have one daughter.