We Did Not Get Here Over Night.
As one of the first federally funded community-based agencies in America, the Sickle Cell Society, Inc. (Society) has a story that tells of a journey spanning over four decades.
In terms of its origins, the Society began in the mid-1960s, as a grass-roots effort among a small group of parents with children who suffered from sickle cell disease (SCD). These parents’ major concern was the severe lack of proper medical care for their children, and the cost of such care.
Nathanial Murray, an adult with SCD, began encouraging individuals in the community to mobilize their efforts toward creating a program that would challenge the established medical community to address the medical issues of children and adults with SCD.
As a result of their efforts this small collection of individuals in 1971 became a 501(c)(3) non profit organization, the Sickle Cell Society, Inc.
From 1972 through 1977 in support of the Society’s demands to receive medical care for SCD children and adults, the Society became part of a Comprehensive Sickle Cell Disease Center, headed by Dane R. Boggs, M.D. of the University of Pittsburgh Medical Center and funded by the Department of Health and Human Services and National Heart, Lung & Blood Institute.
Also in 1972 the Society hired its first Executive Director, Ruth G. White, MSW to direct its activities, which included SCD psychosocial services, advocacy for personalized SCD medical care, genetic counseling, SCD health education, and SCD screenings and laboratory analyzations.
In 1977 the comprehensive federal SCD grant was not renewed for funding. However, supported by the President of the Society’s Board of Directors, Neddie C. Hollis, MSW, LCSW, Mrs. White with determination, fortitude, and undiminished faith in 1977 secured a transitional grant from Federal Government’s Health Education and Welfare Division- Health Services Administration (HSA) and in 1979 a long term Patient Care grant from the Commonwealth of Pennsylvania.
In 1981 Augustus C. Brown, Jr., Ph.D. joined the Society’s staff. In 1983 Dr. Brown and Mrs. White, supported by the Society’s Board of Directors, began plans for the creation of a hallmark of the Society’s journey, the creation of the Murray–Irvis Genetic Disease Center (MIGDC).
In 1987 the Society completed the construction of MIGDC, which was a community- based SCD outpatient medical treatment facility with psychosocial services. As such, MIGDC was in many ways the first of its kind in the United States. From 1988 through 2003, although it was a community-based outpatient medical care center, MIGDC provided outpatient medical care to more SCD patients than any medical facility in Western Pennsylvania.
In 1990, Neddie C. Hollis, MSW, LCSW, resigned, as President of the Society’s Board of Directors, and was unanimously selected by the Society, as the new Executive Director, replacing Mrs. White.
In the 1990s under the leadership of Mr. Hollis, the Society focused on eliminating all debt associated with the construction of the Murray-Irvis Genetic Disease Center.
Additionally, with the assistance of Dr. Brown, Mr. Hollis sought to strengthen the depth and sophistication of the Society’s Medical Treatment Program. A Clinical Social Work Program was then established to compliment the Medical Treatment Program.
During this time, the Society’s programs were expanded to include research on newborn screening, such as the use of isoelectric focusing.
However, in 2010 the Society’s capacity as a medical SCD outpatient treatment facility came to an unexpected abrupt end. Its Medical Director quit and moved out of the Commonwealth of Pennsylvania.
With no physician to see our patients, they were all immediately referred to the University of Pittsburgh Medical Center, which fortunately received them and thus prevented any interruption in their medical care. This was very important for those patients who were in need of pain medication and who were being discharged from hospitals.
With the absence of a medical treatment program those patients who now received medical care at UPMC also received psychosocial services at UPMC, which led to a deterioration of the Society’s need for full time psychosocial staff.
Nevertheless, in spite of this situation, SCD patients, their families, and medical providers have over the past four years shown a need for Society’s : 1.) wealth of information and resources regarding SCD and 2.) use of psychosocial services, which has included a team of medical, legal, and cleric providers.
Consequently, today the Society finds itself: 1.) communicating with SCD patients and their families in places such as Alabama, 2.) resolving serious legal issues for a Pittsburgh SCD patient who was incarcerated in Florida, 3.) Obtaining reinstatement of SSI benefits for a SCD patient who has catastrophic medical issues, secondary to their SCD, and 4) visiting SCD patients in hospitals.
Additionally, the Society’s entry into the world of information communication technology (ICT) has begun to expand. This is exemplified by Society’s ability to play major roles in the use of mobile Health, as exemplified through the guidance and assistance from an individual, who is with Intel Corporation and the Society’s support of Intel’s Healthcare Transformation.
A New Day in the Neighborhood
Whereas in the past where the Society found itself dependent on the financial support of the federal government and the Commonwealth of Pennsylvania, the Society has now morphed into an agency which receives its greatest contributions from the ecumenical African American Christian churches in Allegheny County and the public.
As a result, in continuing with the determination, fortitude, and undiminished faith, established by the Society’s first Executive Director, Mrs. Ruth White, the Society looks towards a very promising future, where it can truly be said that:
I can do all things through Christ which strengtheneth me.
Also it is a future wherein the Society will not be limited by geographical distances as a determinant with whom it can share its wealth of information. Today with access to the state of the art in ICT systems, the Society can assist and has assisted SCD patients and their families not only in Allegheny County, Pennsylvania, but throughout the United States, by providing in “real time” necessary information, regarding their immediate need for medical and psychosocial services. Therefore, and most importantly, this will enable SCD patients and their families to make informed decisions, regarding their individual care.
As a result, the Society now stands in place far from its origins in 1971, where it can clearly hear and continues to follow the words that:
…Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.