Sickle Cell Disease Association of America/Philadelphia/Delaware Valley Chapter Improves the patient journey for individuals with sickle cell disease

Sickle Cell Disease Association of America/Philadelphia/Delaware Valley Chapter (SCDAA/PDVC) is a non-profit psychosocial, social service and advocacy agency that provides resources and assistance to children, adolescents and families affected by sickle cell disease (SCD) who live in Philadelphia, Bucks, Chester, Delaware and Montgomery counties.

Their mission is to serve as a vehicle and resource center and develop, manage and allocate resources in partnership with hospitals/private practices, charitable organizations, community-based organizations and social service agencies.

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“Sickle cell anemia is one of a group of inherited disorders known as sickle cell disease. It affects the shape of red blood cells, which carry oxygen to all parts of the body.

Red blood cells are usually round and flexible, so they move easily through blood vessels. In sickle cell anemia, some red blood cells are shaped like sickles or crescent moons. These sickle cells also become rigid and sticky, which can slow or block blood flow.

There's no universal cure for most people with sickle cell anemia, however, treatments and medical therapies can relieve pain and help prevent complications associated with the disease.”

Source: https://www.mayoclinic.org/diseases-conditions/sickle-cell-anemia/symptoms-causes/syc-20355876

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Stanley A. Simpkins, BS, executive director, SCDAA/PDVC, says, “We communicate and work with medical providers, primary care physicians, hospitals, pharmaceutical companies and researchers and anyone seeking to improve the lives of clients with SCD, a global affliction that impacts almost 100,000 people in the United States, with those of African descent being affected in the greatest numbers.”

A Commitment to Serve

Among its many services, the agency offers case management to ensure that individuals with SCD have access to a full array of medical, social, educational and community services and resources to assist them in having a meaningful quality of life.

They also offer certified single-gene genetic counselors and educators to provide counseling for clients affected by SCD and sickle cell trait, as well as advocacy to support, promote and encourage self-sufficiency.

Other services include career/vocational counseling, resources for food, clothing, housing and utility assistance, free round-trip transportation for medical appointments, community outreach and education. These programs are designed to raise awareness about SCD and sickle cell trait through educational seminars/webinars, health fairs, workshops, in-service support group trainings, meetings and interactive presentations.

Simpkins adds, “We make sure that our clients receive comprehensive care at all levels, whether it be with primary care or in hospital care. Whenever a client asks for us to intercede on their behalf, we are there. We also support medical plans and make sure they are working for the good of the client and understood by the client. Our advocacy efforts focus on helping to shine the light on the needs and appreciation of sickle cell disease and access the right care and attention to attain the highest possible quality of life and eliminate any possible barriers that might exist.”

Value of Early Diagnosis

When a child is born with SCD, the diagnosis must be made as soon as possible. Once this is confirmed, it’s important for the family to understand the role of proper medical care and treatment. Children suspected of having SCD go to a comprehensive center in Philadelphia, like Children's Hospital of Philadelphia or St. Christopher's Hospital for Children, where they are given a confirmatory test.

At that point, SCDAA/PDVC** ensures that all the services given to the child are necessary for their treatment. From the time they're born until it's time for them to transition to an adult facility when they turn 18 years of age, SCDAA/PDVC advocacy follows them at every step in their patient journey by assigning a case manager and social worker or community health worker.

As Simpkins notes, “It’s also important to make sure they are being treated well in school because clients often miss a lot of school because of their illness. Newborn screening is critical, as are peer support groups, so that the children with SCD know they are not alone.”

Challenges for Clients

Rare Disease

A major challenge in the management of sickle cell anemia is that it is rare, and few clinicians have experience with the disease. While pediatric patients can often seek care in a sickle cell center, adults have more difficulty accessing compassionate medical care for their disease. The majority of adults with SCD are treated in the emergency department, further complicating care and getting proper treatment.

Complications

SCD is associated with a significant number of complications, including organ damage, pulmonary hypertension and cervical vascular disease. One of the biggest misconceptions with SCD is a lack of appreciation for the intense pain experienced by patients.

This often prompts physicians to treat them long-term with opioid medications. This has led to a misconception about the incidence of narcotic addiction. The relative incidence for true addiction is actually lower than most people believe because patients with this disease have severe pain and a legitimate need for narcotics.

COVID-19

People with SCD are at greater risk of severe illness and death from respiratory infections, including COVID-19, than people without SCD. It is critical for eligible people with SCD to receive the COVID-19 vaccines. Also, early recognition of COVID-19 symptoms and appropriate testing is particularly important for people with SCD so that treatment can start immediately.

Simpkins says, “We identify barriers to care, address clients’ unmet needs, ensure they can travel to doctor appointments to maintain continuity of care, help them obtain affordable housing, if necessary, and ensure they receive the proper attention. We also address family issues that stem from a member having the disease.”

He concludes that people can help the SCD community by donating blood or organizing blood drives or, in celebration of the agency’s 40th year anniversary in service, donating to the Sickle Cell Disease Association of America/Philadelphia/Delaware Valley Chapter here.

About Stanley Simpkins

Stanley A. Simpkins is executive director of the Sickle Cell Disease Association of America Philadelphia/Delaware Valley Chapter (SCDAA.PDVC). He is an expert in corporate management, marketing, public relations, and communications. Stan's decisions not only have major impact SCDAA.PDVC's over one thousand client base but the sickle cell community. His responsibility is to ensure that the health care industry and the community have a clear understanding of SCDAA.PDVC's goals and its commitment to children, teens, and adults with sickle cell disease. In 1998 Stan began his role at SCDAA/PDVC working with local and regional hospitals, Pennsylvania Health Department, Philadelphia Department's of Health and Human Services and other health agencies, on matters germane to sickle cell disease.

Mr. Simpkins has 29 years of experience in corporate management. He began his professional career as an administrator in major corporations throughout the country. In 1973 Stan worked as a marketing specialist in New York for the DuPont Company. In 1984 he joined Gen Mar Associates, Inc. as Senior Vice President of Marketing. In 1990, Stan became President of Gen Mar Associates, Inc.

Mr. Simpkins grew up in West Philadelphia. He is one of seven children. Stan received a Bachelor of Science degree in social science and economics from Cheyney University of Pennsylvania.

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Sickle Cell Disease Association of America, Philadelphia/Delaware Valley Chapter