Sickle Cell Society Inc/Murray – Irvis Genetic Disease Center: A History of Care

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 RUTH GOODE-WHITE

The Sickle Cell Society Inc. offers adults with sickle cell disease and their families the following:

1. sickle cell disease educational resources

2. psychosocial services

3. comprehensive referral medical treatment

The organization is available for people with sickle cell disease in every way possible. Its holistic approach to early diagnosis and ongoing treatment improves a patient’s ability to understand, fight and manage the effects of sickle cell disease.

For more information, or to learn more about these resources, call 412-371-0628 or email ­sicklepgh@juno.com.

History

As one of the first community-funded sickle cell disease (SCD) centers in America, the Sickle Society, Inc. provides more services to more adult patients with SCD than any other hospital or agency in Western Pennsylvania. Where other sickle cell centers are part of multi-million dollar National Institutes of Health projects, our center remains a private, community-funded organization.

We did not get here overnight.

Our journey spans four decades, and is a story of perseverance and cooperation that resulted in the creation of the Murray – Irvis Genetic Disease Center, a one-of-a-kind treatment center that is fully supported by the community. To this day, the Society remains a national model of comprehensive, community-based care that is unlike any other center in the nation.

Our three-pronged, multi-discipline approach combines educational, psychosocial and medical services to create a truly comprehensive and holistic care experience.

In the mid-1960’s, a true grass-roots effort began among a small group of parents with children who suffered from sickle cell disease (SCD). They united to share their concerns about the availability of proper care for their children, and the cost of such care.

Nathanial Murray, a sickle cell patient himself, began encouraging individuals in the community to mobilize their efforts toward creating a program that would challenge this deadly disease, head on.

And though they did not know it then, these people were part of a homegrown effort that would result in the creation of the Sickle Cell Society, Inc.

On behalf of this group of pioneers, William R. Montgomery of the Urban League of Pittsburgh drafted a letter directed to prominent political and medical leaders at the local, state and federal level; a letter that established the Society’s purpose, goals and direction as well as its need for support.
In this letter, he established a purpose that would form a foundation on which to build the Society.
1. To collect, collate and disseminate information concerning the problems of sickle cell anemia
2. To promote research into the treatment and control of sickle cell anemia
3. To promote the general welfare of personal afflicted with this disease
4. To promote the cooperation and coordination of public and voluntary agencies in the health and welfare field who might provide services to persons with sickle cell anemia.

In the early 1970’s, President Richard M. Nixon’s health message to Congress cited sickle cell disease as a national health problem. The federal government acknowledged the need for a national sickle cell disease program.
The Sickle Cell Society, Inc. was officially established in 1971 to initially function as the social service arm of the University of Pittsburgh’s medical/research program. A volunteer Board of Directors was created and a non-profit 501 c (3) status was established.

The group founded by Nathanial Murray convinced the University of Pittsburgh’s School of Medicine to write for a federal research grant. This grant was funded by Department of Health and Human Services and National Heart, Lung & Blood Institute from 1972 through 1977.

With the invaluable assistance of Dr. Dane R. Boggs from the University, they were able to collectively plan the beginning of Pittsburgh’s first comprehensive sickle cell program. The proposal for a Comprehensive Sickle Cell Center, with Dr. Boggs as the Center Director, was approved in 1972.

And though he was able to fund a staff and location at 4521 Center Avenue, Dr. Boggs faced difficulty in defining the Society as a professional organization. It would take serious, experienced, professional leadership to help the Society make the advances necessary to place it among the major community-supported health care organizations.

Dr. Boggs answered that need with the hiring of the Society’s first Executive Director in 1972—Mrs. Ruth G. White, MSW. It was a decision that was worth its weight in gold.

Armed with a Masters Degree in Social Work and 13 hard-won years of experience, Mrs. White passed a grueling interview process, and challenged the Board with questions that they themselves could not answer! Ruth White was responsible for finding a more suitable location for the Center, and for providing a much-needed upgrade in physical appearance, capable recordkeeping, and qualified staff that enhanced the Center’s comprehensive ability to help the sickle cell community.

However, the University of Pittsburgh grant was not renewed in 1977, and the Society was told to seek funds from another source. Mrs. White teamed with Board President Neddie Hollis to seek out funding at a national meeting for sickle cell clinics in Jackson, Mississippi. This meeting was sponsored by the Federal Government’s Health Education and Welfare Division-Health Services Administration (HSA).

The HSA provided a transition grant in 1977, but for Mrs. White, this was only the beginning. She was determined to never again be without funds. She began a series of fund-raising events that would extend well into the future, and form the foundation for the Society’s ability to attract celebrities and people of influence to their cause for years to come.

In 1979, Mrs. White authored a proposal that earned the Society a Pennsylvania Grant for patient care. In three short years, she had been able to spearhead the drive to financial solvency by acquiring both state and federal support, while making significant gains through fundraising events and activities.

In the 1980’s, with the financial struggle under control, the Society began to make a concerted effort to shape and sharpen the Society’s public image. Because as far as the public was concerned, the Sickle Cell Society was merely an extension of the Willie Stargell Foundation—a separate Pittsburgh sickle cell disease organization helmed by the Hall of Fame baseball player.

In 1981, Mrs. White brought August C. Brown, Jr., Ph.D to the Society to lead an effort to:
promote public awareness of the Society’s work
eliminate the confusion between the Society and the Willie Stargell Foundation
spur peak performance in the Society’s offices and laboratory through state-of-the-art equipment
create a major sickle cell disease center, one which housed its own adult treatment clinic

A full scale public relations and television initiative was launched by Mrs. White and Dr. Brown, one which helped clarify and establish the distinct purposes and programs of the Society.

One of the signature events resulting from this endeavor was an annual charity golf event featuring celebrity Bill Madlock, the popular infielder for the Pittsburgh Pirates. It was the kind of event that attracted business luminaries and political interest, an event that brought significant corporate awareness—and dollars—to the Society.

The success of this event led to another like-styled fundraiser; a Sports Celebrity Auction led by defensive lineman Keith Willis of the Pittsburgh Steelers. With these efforts raising local awareness to new heights, and the dissolution of the Stargell Foundation, the Society assumed sole regional leadership in the movement to diagnose, treat, fight and eventually cure SCD.

By 1984, the Society had achieved a large measure of financial stability and regional notoriety. But there was a final piece of the puzzle left missing from Mrs. White’s dream: A location.

With the help of a slightly lucky “find” and a loan from the Industrial Development Authority, the Society acquired a building and adjacent lot at 7647 Frankstown Avenue.

Mrs. White entrusted the building of the new center to Dr. Brown, allowing her to focus completely on the growth and development of the Society’s programs. Building fundraisers were organized and launched, architectural drawings were commissioned, and plans were set in motion to begin the building project in 1985.

But development suffered through bureaucratic and idealistic snags that changed the building plans; snags that forced the Society to turn to the John Galbreath Company for end-to-end service on the construction of the project. With a stalwart construction partner in place and financing secured, the project broke ground.
With the new developer and new plans, came new, unforeseen costs—charges that threatened the completion of the project. But staff, board members, government and community individuals just would not give up, and eventually unearthed completion funds that were paid to the contractors in January of 1987.

The Sickle Cell Society had a permanent home.

It was one of the first community-based centers of its kind in the United States—providing education, screening, counseling, medical care, laboratory analysis and research all under one roof.

With the momentum gained by this initiative, the Society was able to earn a valuable advocate in Pennsylvania Government. The Honorable K. Leroy Irvis—at that time, the Speaker of the Pennsylvania House of Representatives—championed the cause of augmenting the Society’s funding to assist in the beginning of its treatment program.

It is no wonder the center was (and is) named the Murray-Irvis Genetic Disease Center, in honor of Irvis and the initial founder of the community group that looked to make a difference in the fight against SCD, Nathanial Murray.

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 1990’s, 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 Standard of Care at the Society was expanded to meet the following needs:
Research and newborn screening for SCD
Screening for SCD in children, young adults and adults
Counseling and health education
Administrative and management of psychosocial services for SCD patients and families
Just as importantly during this period, the Society survived all attempts to transplant its treatment program into a hospital setting;
and was able to maintain its unique status as the community-centered and community-driven model that exists to this day.

From 2000, up until this very day, it has been—and currently is—abundantly clear that program diversity is paramount for the survival of the Society.

In the new millennium, we have undertaken a number laboratory contract ventures, implemented an HIV/AIDS program for people of color, and acquired a renewable planning grant from the Department of Health and Human Services.
Today, these and other initiatives, help to continue the tradition of comprehensive care and diverse work of the Sickle Cell Society, Inc.—work which began almost 40 years ago, when Nathaniel Murray brought people of influence together with a vision to do good, to do better, for those people suffering from SCD.

And as extensive as this brief history has been, it cannot begin to adequately name all of the vital and noteworthy individual contributors that have helped to make the Society what it is today.

Each person who has had a hand in the success of the Society has our eternal gratitude. They also have the thanks and well wishes of a legion of SCD patients and families who have seen, firsthand, the indomitable power of caring in a community.

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