Monica Rockwell, a patient advocate with SWGA Sickle Cell Awareness, provides valuable information concerning the breadth of Sickle Cell diagnoses and shares her own story of using telemedicine to provide treatment for Sickle Cell patients.
Sickle cell disease (SCD) is an inherited blood disorder. It is detected when healthy round shaped blood cells change into the form of a sickle or a crescent moon shape due to the lack of oxygen flowing through the body. Sickle shaped cells become sticky and do not travel through the body as easily, causing the patient to experience excruciating pain. SCD is a debilitating disease and chronic illness with long lasting effects such as organ damage or massive bone loss. There are several variations of SCD, namely, sickle cell disease, SS, SC, sickle cell anemia, sickle cell alpha thalassaemia, sickle cell beta thalassaemia and sickle cell trait.
According to the World Health Organization, over 300,000 babies with SCD are born annually. The majority of these are in sub-Saharan Africa, where access to medical care and public health strategies to decrease mortality and morbidity are not uniformly available. This number is expected to increase to up to 400,000 individuals by 2050. SCD affects millions of people throughout the world and has become a global issue. It has been diagnosed in patients whose ancestors are from sub-Saharan Africa, South America, the Caribbeans, Central America, Saudi Arabia, India, Turkey, Greece, Italy and Asia. There are treatments for patients to manage it.
Most patients pass away from the complications of SCD and not due to the disease itself. The host of complications that come with SCD can include pain crisis, anemia, acute chest syndrome, strokes, diabetes, splenic sequestration, deep vein thrombosis or pulmonary embolism, vision loss, leg ulcers, organ damage, tissue damage, massive bone loss, malnutrition, growth retardation, gallstones, priapism and renal medullary carcinoma.
There is an estimated cost of $2.4 billion per year in the U.S for frequent emergency department visits and hospitalization due to pain crisis. To better understand opioid prescribing among patients with Medicare coverage who live with SCD, the CMS Office of Minority Health analyzed data from 2016 Medicare Part D prescription drug event records. Compared to the overall Medicare Fee-for-Service (FFS) population, beneficiaries with SCD tend to be non-elderly (average age 43 years) and mainly live in non-rural communities (87%). Compared to beneficiaries without SCD, beneficiaries with SCD have greater health care utilization across inpatient (55% vs. 12%), emergency departments (74% vs. 25%), and outpatient settings (96% vs. 91%). Among beneficiaries who had inpatient stays, the readmission rate was 2.5 times greater ( 38% vs. 15%) for those with SCD compared to beneficiaries without SCD.
Collectively, the higher prevalence of outpatient visits, emergency department visits, inpatient hospitalizations, and readmissions suggest that there are added challenges in caring for Medicare beneficiaries with SCD (CMS Office of Minority Health Data Highlight, September 2018).
U.S. Representative Sanford Bishop approved the $368,501 Grant for Distance Learning and Telemedicine to take place at Augusta University Research Institute for implementation of the Emergency Telehealth network serving rural Georgia. Sanford stated “The field of telehealth has the potential to revolutionize our rural health care system. The emergency health network will connect emergency rooms, allowing for increased coordination, cooperation, and efficiency. This will improve patient outcomes, as well as lower health care cost” (Albany Herald Jan. 23, 2018).
As of April 22, 2016, Georgia Department of Community Health (DCH) Medicaid Division notified the provider communities of a recent State Plan Amendment approval from CMS. Emergency Ambulances may serve as a telemedicine origination site and the ambulance may bill a separate origination site fee. Emergency Ambulances may not serve as a distant site.
I was diagnosed with Sickle Cell Beta Thalassaemia with Congestive Heart Failure at the age of 38. I was released from the hospital continuing to experience pain crisis daily. I began looking for local resources to only find resources whose mission serves patients under 21, and it left me devastated. I was given the office phone number to Dr. Kutlar at the Augusta Adult Sickle Cell Clinic to schedule an appointment. Dr. Kutlar and NP Nadine Barrett serve as the Outreach Team that travels throughout the state of Georgia treating patients on the fourth week of each month. Phoebe Sickle Cell Clinic in Albany day is Thursday then it changed to every other month at Phoebe Worth Cancer Center in Sylvester. Prior to the Phoebe Sickle Cell Clinic closing, I asked Dr. Kutlar what I could do to make sure this clinic become fully functional. He said as a physician I can do so much, but the patients have to advocate for the needs of this clinic. I began researching Sickle Cell Beta Thalassaemia and Congestive Heart Failure, which led me to join the Sickle Cell Disease Association of America and connected me my local chapter, which is the Sickle Cell Foundation of Georgia in Atlanta. I became a Patient Advocate through those organizations and the Sickle Cell Community Consortium with continuing education.
When I attended the first SCDAA Conference in Atlanta, Georgia, a sickle cell specialist talked about the benefits of telemedicine and the role it will have on healthcare treatment options. The testimonials he shared from his patients gave me the desire to research it so those services could be accessible in the territories I serve and beyond. As a patient living with sickle cell and congestive heart failure, you do not want a physician to tell you to go to Augusta or Atlanta because the pain is too great or the travel is too taxing on the body. After a lot of researching and networking, I met an Account Manager with Global Partnership for Telehealth at the 2018 Hope Run in Albany. After the event, we scheduled a follow-up meeting to discuss the need for Telehealth in this area. The telemedicine program at Phoebe Worth Medical Center has brought valuable care to many patients living with SCD in Southwest Georgia.