New York State Sickle Cell Advisory Committee (SCAC)
Officers / Standing Committees / 1998 Calendar / 4th Annual Symposium / SUNY
OVERVIEW
GENES, the Genetic Network for New York State, Puerto Rico, and the Virgin Islands is a federally designated region which is funded by the federal government to coordinate genetic services and provide education about genetic disorders to medical professionals and the lay population. This informal body includes individuals in the region with professional or personal interest in clinical genetics services and genetic disorders and birth defects. GENES is one of ten regions represented by CORN (the Council of Regional Networks for Genetics Services).
The Sickle Cell Advisory Committee, a standing committee of GENES (see its Bylaws), is composed of health care providers; community organizations and consumers from all regions of New York State, Puerto Rico and the Virgin Islands; and representatives from the Departments of Health (New York State's, and others) and other governmental agencies concerned about sickle cell hemoglobinopathies.
Members include physicians, nurses, genetic counselors, social workers, health educators, health administrators and others. Consumers reflect self-help and support groups, individuals who have sickle cell disease, their family members, other interested persons and representatives from community organizations.
SCAC's mission is to discuss matters pertaining to sickle cell and other hemoglobinopathies for the purpose of policy making, problem sharing and solving, voicing of concerns and providing educational forums. SCAC holds triannual Clinical Conferences. Topics have included pain management, patient advocacy and alternate therapies. These conferences serve as forums for presenting accomplishments with the knowledge that effective communication can be mutually beneficial and may result in legislative, professional, systemic, programmatic and societal changes. SCAC's meetings are usually held in New York City.
Chairperson: Rita Bellvue MD, New York Methodist Hospital, 718-857-5643, 718-857-6798 (Fax)
Co-Chairperson: Kusum Viswanathan MD, Brookdale Hospital Medical Center, 718-240-5904, 718-922-4197 (Fax)
STANDING COMMITTEES (listed in alphabetical order)
DATA COMMITTEE
This committee is responsible for collecting, cataloguing and analyzing data of all types, and for determining additional data that is needed.
FAMILY/CONSUMER COMMITTEE
This committee is composed of patients, their families and caregivers. It represents the interests of patients to other agencies through the medium of SCAC, thus serving as a patient advocate. The committee members promote patient education and counseling on academic and health concerns by providing speakers and referring to appropriate counselors. This committee is a strong link between SCAC and support groups throughout the GENES region, nationally and internationally. The committee promotes and encourages membership in SCAC.
GENETIC COUNSELING/EDUCATION COMMITTEE (William A. Mollette, Theresa Dugger, Co-Chairs)
This committee is responsible for issues related to genetic counseling for sickle hemoglobinopathies for trait and disease. It is pivotal in suggesting, producing and critiquing polices and educational material utilized by genetic and sickle cell counselors, as well as collecting and reviewing print and audio/video literature for lay persons and medical professionals.
LABORATORY COMMITTEE (Jeanne Smith, Maud Bertoni, Co-Chairs)
This committee considers matters pertaining to type and timing of testing for sickle cell and sickle-related conditions. Discussions encompass matters related to quality assurance, accessibility and confidentiality of results.
LEGISLATIVE COMMITTEE (Gloria Rochester, Chair)
This committee serves as an information source to state and territorial legislators regarding sickle cell concerns, and to SCAC regarding legislative initiatives and proposals of relevance to the sickle cell community. It collects and reviews pending legislation for submission to SCAC as a whole and serves as liaison to legislators for the purpose of recommending and educating for desired legislation.
PATIENT CARE COMMITTEE (Doris Wethers, Kusum Viswanathan, Rangeet Grover, Scott Miller, Co-Chairs)
This committee is responsible for reviewing and advising on clinical matters and recommendations pertaining to individuals with sickle cell disease of all ages, but is especially concerned with affected infants and newborn screening issues. It is also concerned about methods for developing effective interdisciplinary advocacy networks for children and adults.
PSYCHOSOCIAL COMMITTEE (Howard Forbes, Chair)
This committee discusses and reviews all issues pertaining to the quality of life for sickle cell patients and proposes positive actions to remedy existing problems. Some of the areas of emphasis are education, career development and recreation, including summer camp. The committee addresses staff attitudes, and the emotional and social development of the patient, including behavioral research concerns.
General Meetings
July 29, 1998
December 16, 1998
Executive Committee Meetings
June 24, 1998
September 22, 1998
November 24,1998
Fourth Annual SCAC Sickle Cell Symposium
The New York State Sickle Cell Advisory Committee (SCAC) is holding its Fourth Annual Sickle Cell Symposium, SICKLE CELL DISEASE INTO THE NEXT CENTURY: DO WE MEET PATIENT NEEDS? on Wednesday, September 23, 1998 from 8:30 am - 5:00 pm at Montefiore Hospital and Medical Center in Bronx, NY (see directions). Tentative topics include transfusion risks and benefits, sickle cell disease in Puerto Rico, management of avascular necrosis of the hip, pain management, umbilical cord blood as a source of stem cells for transplantation, ethnocultural barriers to physician-patient communication, and an overview of basic research in sickle cell disease. Breakout sessions will invite further discussion of several of these topics by interested physicians, patients, nurses, counselors, social workers, families.
Tuition is $15 in advance, $20 at the door. For further information, contact Kusum Viswanathan, M.D. (718) 240-5904, Rita Bellevue, M.D. (718) 857-5643, Lennette Benjamin M.D. (718) 920-7373, William Molette (718) 298-8536, or Katharine Harris, M.B.A. (518) 474-7148; or e-mail Ms. Harris at kbh02@health.state.ny.us
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This page was last updated 6/22/98. Please send comments or questions to Scott Miller MD at stmseelig@aol.com