COBRA AGENCY INVOLVEMENT WITH SICKLE CELL THROUGH THE YEARS
Trident United Way and Its Component/Charleston County Comprehensive Health Planning Board 1970
Mr. William “Bill” Saunders learned of Sickle Cell Disease while attending a Civil and Human Rights Conference in Atlanta, Georgia. His concern was: What has happened in Charleston in regard to this disorder? In checking Medical University of South Carolina, he found that some physicians had done a level of research because of their own interest but nothing done to improve the care of patients living with Sickle Cell Disease.
Mr. William “Bill” Saunders brought the concerns for community education, testing, counseling and treatment to The Charleston County Comprehensive Health Planning Board of Trident United Way and to the community through his WPAL Radio Talk Show.
A Coalition of health, community business and religious representatives formed a Sickle Cell Coalition to support a collaborative community Sickle Cell Program. The Charleston Area Red Cross gave a small funding to the COBRA Agency to promote a level of public education.
A State Health Agency Program Request Initiated 1971-72
The Charleston County Comprehensive Health Planning Board and COBRA initiated a legislative request to the South Carolina General Assembly to start a Sickle Cell Anemia Program within the South Carolina Department of Health and Environmental Control. Funding for Community-Based entities in South Carolina was not a part of this request as there was not a state public program level at this point. The State Legislature approved and funded the first DHEC Sickle Cell Component. It was essential that the state health department should have a Sickle Cell Component since COBRA was applying for a federally funded Community-Based Sickle Cell Services.
Department of Health Education and Welfare Funded The COBRA Community-Based Sickle Cell Program as One of Twenty-Four Demonstration Projects 1972-82
Initially COBRA had sub-contracts with the Local Charleston Health Department for testing. The State Health Department Bureau of Laboratory for analysis and MUSC Pediatrics Department Chair, Dr Charles Darby and Dr. W. Wertelecki of the Genetics Division for counseling. The next year COBRA found it more efficient to provide its own testing and counseling of clients because of expansion of the target area served. Albertha H. Cook assumed the programmatic and administrative leadership in the services expansion beyond the tri-counties area: Charleston, Dorchester and Berkeley. Albertha H. Cook encouraged William Saunders that we keep adding counties to to Orangeburg area as well as Southward to the Beaufort area.
Locations of Committee on Better Racial Assurance (COBRA) and The Sickle Cell Services 1972 to Present
The first four (4) office locations of the Sickle Cell Services of COBRA were provided by MUSC from 1972 to 1986. They included: (1) MUSC Family Health Center on Calhoun Steet across from the old Roper Hospital; (2) A former closed Hotel on Spring Street; (3) Harborview Tower at 19 Hagood Avenue; (4) The Johnson Insurance Building on Morrison Drive. After the first year on Morrison Drive, the COBRA Agency took over the lease until 2000 and was located at (5) The COBRA Agency Building at 3962 Rivers Avenue, North Charleston, SC 29405. The building was bought on June 19, 2000, and moved into in 2001. This continues to be our location from then on.
Patient Assistance 1972 to Present
The Sickle Cell Services were supported initially by Federal Contract until Block Grant began in 1985. At that time the State Contract drastically reduced us. So, contributions were sought to cover assistance to patients not covered by state contract. Assisting patients and families to the level allowable is continued based on contributions received for helping with housing, utilities, oxygen, medication, emergencies, holiday gifts inclusive of clothing, electronics, toys, food, Mental Health Talk Therapy Counseling by Talk Therapist Cynthia Washington Williams and Talk Therapist including Inner-Healing by Deloris Belin-Burns.
The Need For a Pediatric Sickle Cell Disease Clinic 1975-82
The Founder of the COBRA Agency, Mr. William Saunders, kept emphasizing to MUSC’s Pediatric Chair, Dr. Charles Darby, the need for attracting Physicians with an interest in forming a Pediatric Sickle Cell Disease Clinic.
Emergency Room Treatment 1978 to Present
The COBRA Agency has served as advocates for patients who have experienced problems with some physicians in this setting. Negative attitudes on both the patients and/or physicians contribute to some of the problem(s). Also, inconsistency in checking treatment modalities when a patient transfers from pediatrics to adult medicine was problematic.
Block Grant Funding Came to The States 1985
COBRA’s Federal Funds became the Block Grant Dollars given to South Carolina Department of Health Environmental Control. Three (3) small subcontracts were funded by DHEC: the COBRA Sickle Cell Program, the Clark Sickle Cell Foundation, and the Barksdale Sickle Cell Foundation. These entities were already providing a full scope of services at some level so these three programs were supported. The COBRA Program continued to partner with the Orangeburg Sickle Cell Foundation in providing education, testing, and counseling services. They were providing patients with Sickle Cell Treatment support as needed in the area as well as in Georgia. When the state start providing more financial support, the Orangeburg Foundation will be helped by COBRA to become independent. COBRA offered to share a portion of its sixteen counties covered with them.
The Need For an Adult Sickle Cell Disease Clinic 1985-87
The Founder of the COBRA Agency, Mr. William Saunders, kept emphasizing to MUSC’s President and Leadership the need for an Adult Sickle Cell Clinic. There is a great contrast between the level of interest and commitment of the Adult Services in comparison to the interest found in the Pediatrics Services.
Special Programs of Regional And National Significance (SPRANS) 1985-88
COBRA Sickle Cell Program represented South Carolina as it participated in the SPRANS Couples-at-Risk Program with MeHarry Medical School which encompassed six states.
Newborn Screening Pilot Project With MUSC Pediatrics Department, DHEC Bureau of Laboratories and COBRA 1985-87
The Newborn Screening Pilot concept was brought by Reverend Albertha H. Cook, Associate Director to Founder, William “Bill” Saunders. COBRA took the initiative in getting partners and legislative funding. Dr. Charles Darby, MUSC Pediatrics Department Chair got Dr. Shashidhar Pai in Pediatrics and Genetics to lead MUSC’s involvement.
Dr. Shashidhar Pai expanded the Pilot with SPRANS Funding the second year to include other hospitals in the area.
Near the conclusion of the Newborn Pilot, Rev. Albertha Cook of COBRA suggested and Dr. Shashidhar Pai agreed to have Dr. James Eckman from Emory, Director of the Comprehensive Sickle Cell Center at Grady Health System in Atlanta, brought in through the SPRANS funding to convince DHEC on the feasibility of Statewide Newborn Screening. Statewide Newborn Screening was implemented in July of 1987.
Statewide Newborn Screening by DHEC Bega July 1987
Diseased babies are referred to physicians or treatment facilities. Positive trait babies began to be referred to Community Sickle Cell based organizations in three (3) Regions of the state.
SC Department of Health and Human Services Begin Funding Case Management 1994
The State Agency asked three (3) Sickle Cell organizations (Clark Sickle Cell Foundation, Barksdale Sickle Cell Foundation and COBRA Sickle Cell Services) under SC DHEC Contracts to case manage patients. COBRA argued for MUSC to begin in order to serve their patients. COBRA would begin case Management later on - but was not worked with appreciatively by MUSC Adult Sickle Clinic Nurse, who referred their worst non-compliant patients.
The First Statewide Sickle Cell Plan 1995
In 1995, the first statewide Sickle Cell Disease plan was initiated by DHEC and Community-Based Organization representatives. The goal of this plan was to increase sustainable funding to support SCD related services and hire a statewide director of SCD within DHEC.
Case-Management Services Supported for MUSC 1995
COBRA began in 1996
COBRA opted and impressed upon the South Carolina Health and Human Services Finance Commission to fund the MUSC Pediatric and Adult Clinic prior to us because of the greater number of patients that could be served (even though the Commission wanted to fund COBRA first).
In August 1996, COBRA contracted with South Carolina’s Health and Human Services Finance Commission to provide Case-Management Services to Sickle Cell patients to improve the quality of life and reduce unnecessary hospitalizations. This was done on a pilot basis from COBRA’s standpoint.
When COBRA opted to begin Case Management, MUSC Adult Sickle Cell Clinic key staffers referred their worse patients, ignoring COBRA’s prior consideration to them by allowing them to be funded before COBRA in order to benefit their patients.
Statewide Plan Implementation July 2002
2002 is when funding for Sickle Cell Services was significantly increased, as previously scheduled, in the Statewide Sickle Cell Plan (prepared by DHEC and Sickle Cell Services Representatives). COBRA offered and gave up six (6) counties for Orangeburg Area Foundation to serve independently while COBRA served the remaining ten (10) counties of the Lowcountry and Piedmont Regions.
COBRA Sickle Cell Services Patient Assistance 2004 to Present
COBRA Sickle Cell Services helped provide emergency assistance to patients requiring help with utility bills, funeral expenses, hearing aid repair, housing mold removal, mattresses, academic books, college tuition assistance, rental assistance, Talk Therapy for patients needing mental health assistance, Emotional, Mental and Inner-Healing for Traumatic Life Traumas, Medical Advocacy for patients receiving negative interactions in Medical Facilities, Emergency Rooms, and Hospitals, etc.
COBRA Sickle Cell Services Provided Patient Transportation Cost 2007–2009
Covered cost of transportation for MUSC Pediatric Sickle Cell Sisters in need of help to get to their meeting events several times a year.
The Initiation as Cooperative-Arrangement for The COBRA Sponsored Professional Education 2013 to 2022
Dr. Sabra Slaughter, Vice President to Dr. Raymond S. Greenberg got him to approve Sickle Cell Services of COBRA funded through SC DHEC and supported by Sickle Cell Clinics of MUSC, assisted by MUSC Continuing Medical Education Division (providing CME Credits) and the Audio-Visual Division. The Professional Education Events were held at MUSC. Dr. Slaughter scheduled the telephone meetings between the Chief Planner, Reverend Albertha H. Cook, and Cooperative Planners, Dr. Julie Kanter, Dr. Sherron M. Jackson of the Pediatric Department, Dr. Temeia D. Martin of the Adult Medicine Department and Mrs. Odessa Ussery of the Continuing Medical Education Division. He also shepherded the cooperative arrangement of what MUSC would provide and costs to be born by the COBRA Agency. South Carolina Representative David J. Mack, III, an Assistant Director of COBRA, assisted the actual day of the Event. When Dr. David Cole took over as President, Representative Mack arranged the meeting between himself, Rev. Cook and Dr. Cole to get his continued support of MUSC as previously arranged by former Vice President Slaughter with Dr. Greenberg. Dr. Kanter tried without success to get us not to meet with Dr. Cole without her as she was out of town. COBRA’s working relationship with MUSC began in 1969 when COBRA’s Founder represented the Black Striking Nurses and played a major role in negotiating the strike. The Black Nurses were returned to their jobs and began to get increased salaries. Statewide minimum wage was established following this strike. For a period of time MUSC had their staffer confer with Mr. Saunders to meet with complainant so as to call to their attention unresolved problems between Black employees and Supervisors at MUSC.
Case Management Reinstituted 2014 - 2017
With funding provided by S.C. Department of \Health and Human Services, some Patients were followed in Case Management Program who independently signed-up, but happened to be patients of Dr. Temia Martin, Dr. Sherron Jackson and Dr. Julie Kanter.
Case Management Services / Empowerment Program 2014 to Present
The outcomes are to improve the health of a person with sickle cell disease by reducing or avoiding sickle cell disease related complications, crises and decreased hospitalizations.
Develop and implement a plan of care to improve or maintain the health of the individual; identify activities to address the assessed needs; address self-management needs through patient education and instruction; indicate minimal monitoring needed to reinforce what the patient care provider wants reinforced regarding treatments and instructions.
Partnered and provided case management for patients referred by Dr. Julie Kanter in 2015-2016. While Reverend Cook and Representative Mack met with MUSC President Cole, Dr. Kanter was on his phone. Reverend Cook asked her if there was any reason why she was not referring patients to COBRA’s Case Management Program? She said she would be referring and subsequently began. COBRA’s Nurse was asked to attend Clinics approximately one day a week to meet with her referred patients.
Sickle Cell Walk National Sickle Cell Anemia Month 2014 - 2018
During National Sickle Cell Awareness Month Sickle Cell Services of COBRA reinstituted a Walk in September. Mrs. Novella Larkins as Chair of the Social Action Committee presented the idea to the Charleston District United Methodist Women to select Sickle Cell Disease of COBRA as a charity. Each church’s unit was asked to contribute $50.00. A few churches sent in offerings as will. Rev. Albertha H. Cook, Executive Director was asked to speak at the Annual Meeting in September of 2015 just prior to the National September Awareness Walk held by the COBRA Agency at Park Circle, North Charleston SC. Mrs. Larkins publicized pictures and narrative in the Charleston District Newsletter demonstrating this great support by the Charleston District Units.
Mrs. Martha Sass became Chair of the Social Action Committee and continued leading the Charleston District UM Women’s Church Units in supporting the Walk. Mrs. Larkins and she honored those Living with Sickle Cell Disease and those who were already demised. Mrs. Sass also set up Displays at Bosch Industries for years 2018 and 2019. She was able to get Bosch to contribute $1,000 for the years 2018 and 2019. She was able to get additional participants in the Walk representing Zeta Sorority and the Sigma Fraternity.
September 27, 2014 Sickle Cell Awareness Month Walk, Park Circle, North Charleston, SC 29405
September 26, 2015 Sickle Cell Awareness Month Walk, Park Circle, North Charleston, SC 29405
September 24 ,2016 Sickle Cell Awareness Month Walk, Park Circle, North Charleston, SC 29405
September 23 ,2017 Sickle Cell Awareness Month Walk, Park Circle, North Charleston, SC 29405
September 22, 2018 Sickle Cell Awareness Month Walk, Park Circle, North Charleston, SC 29405
September 28, 2019 Sickle Cell Awareness Month Walk, Park Circle, North Charleston, SC 29405
September 2020 There was no In-Person Event due to Corona Virus Pandemic.
September 2021 Contribution Campaign (Without the Walk) Various personal contributions were given.
Two (2) businesses solicited by Mr. Clifford June as well as some churches and interested persons by Patient Advocate, Mrs. Novella S. Larkins, continued to contribute.
September 2022 Contribution Campaign (Without the Walk) Various personal contributions were given.
Two (2) businesses solicited by Mr. Clifford June as well as some churches and interested persons by Patient Advocate, Mrs. Novella S. Larkins, continued to contribute.
September 2023 Contribution Campaign and Partners can schedule a Walk-On-Your Own date in Honor of Deceased Patients or Patients Warriors Living with Sickle Cell Disease. And Medical Advocacy for Patients in Medical Facilities, Emergency Rooms and Hospitals will be implemented.
Sickle Cell Disease Symposia as Professional Education 2014 to 2019
Sickle Cell Disease Symposia were given in consecutive years to improve the knowledge and care for patients treated by physicians and their support staff. The services are provided by the COBRA Sickle Cell Anemia Services in partnership with the Medical University of South Carolina Sickle Cell Disease Program funded by the South Carolina Department of Health and Environmental Control. COBRA received a state contract to provide professional education to increase knowledge and understanding of hospital personnel to improve treatment for Sickle Cell patients. Because of our prior working relationship with MUSC, we approached Dr. Raymond S. Greenberg, MUSC President to work with us rather than another hospital. We received the support of Dr. Julie Kanter, Dr. Sherron Jackson, and Dr. Temeia Martin to join us in planning with Rev. Albertha H. Cook, as Chief Planner, assisted by State Representative David J. Mack, III of COBRA.
2014 Sickle Cell Disease Symposium entitled “Treatment of Adults with Sickle Cell Disease While in the Hospital.” Presented at MUSC Bioengineering Auditorium, Saturday, March 22, 2014.
2015 Sickle Cell Disease Symposium entitled “Acute Care Management in Sickle Cell Disease,” Presented at MUSC Drug Discovery Building Auditorium on Saturday, April 18, 2015. A special presentation, “Adapting the NHLBI Guidelines for Emergency Department Treatment of Adults Patients with Sickle cell Disease” was made in the ER on Friday, April 17, 2015, in order to garner greater participation. Unfortunately, only a few ER Professionals participated and/or attended.
2016 Sickle Cell Disease Symposium entitled “Partnering for More Effective Health Care Outcomes” Presented at MUSC Drug Discovery Building Auditorium on Saturday, April 23, 2016.
2017 Sickle Cell Disease Symposium entitled “Preserving Health and Wellness in Individuals with Sickle Cell Disease” Presented at MUSC Drug Discovery Building Auditorium on Saturday, April 22, 2017.
Dr. David Cole, the new MUSC President continued the support of the Sickle Cell Symposia.
2018 Sickle Cell Disease Symposium: “Therapeutic Options in Sickle Cell Disease.” Presented at MUSC Drug Discovery Building Auditorium on Saturday, April 28, 2018.
2019 Sickle Cell Disease Symposium: “The Longitudinal Course of Sickle Cell Disease.” Presented at MUSC Drug Discovery Building Auditorium on Saturday, April 27, 2019.
2020 Symposium Cancelled due to Corona Virus Pandemic.
Professional Sickle Cell Disease Education 2021 to Present
2021 Professional Education Video Presentations and Patient Panel entitled “Sickle Cell Disease: Current Medical and Mental Treatments.” Grand Rounds with Pediatric Treatments were recorded on May 21, 2021, at MUSC. The Presentations are viewed on COBRA Agency’s YouTube Channel (https://www.youtube.com/user/cobraagency). In person event omitted.
2022 Professional Education Video Presentations and Patient Panel entitled “Exploring Sickle Disease Transition Models”. They were recorded on June 4, 2022, at MUSC Drug Discovery Building Auditorium. The Presentations viewed on COBRA Agency’s YouTube Channel (https://www.youtube.com/user/cobraagency). In person event omitted.
2023 Proposed Professional Video Presentations for 2023 will focus on extending “Mental Health Talk Therapy” to address Inner Healing Due to Specific Life Traumas Experienced by Patients Living with Sickle Cell Disease, i.e., Loss, Shame, Anxiety, Anger, Guilt, Unforgiveness, Fear and Depression. The presentations will be recorded by COBRA Sickle Cell Services, a local media service, and Inner Healing Therapist. It will be available for more viewers from a variety of venues on COBRA Agency YouTube and Facebook page.