Selected Podcast
How Community Health Workers Can Improve the Health of Adults With Sickle Cell Disease
Community health workers have something in common with the patients they assist, bridging the distance between patients and the healthcare system. Dr. Wally Smith, Florence Neal Cooper Smith Professor of Sickle Cell Disease Vice Chair for Research, discusses how community health workers are helping those with sickle cell anemia.
Featured Speaker:
Dr. Smith is an experienced implementation scientist and an expert in clinical and health services research in sickle cell disease. He has authored over 100 publications, and served as an investigator on over 50 externally funded grants and contracts. Dr. Smith has been associated with the development of two potential lead compounds for sickle cell disease at VCU.
Wally Smith, MD
Wally R. Smith, MD is the Florence Neal Cooper Smith Professor of Sickle Cell Disease at Virginia Commonwealth University (VCU). He also serves as the Vice-Chairman for Research of the Division of General Internal Medicine and is the former Scientific Director of the Center on Health Disparities at VCU.Dr. Smith is an experienced implementation scientist and an expert in clinical and health services research in sickle cell disease. He has authored over 100 publications, and served as an investigator on over 50 externally funded grants and contracts. Dr. Smith has been associated with the development of two potential lead compounds for sickle cell disease at VCU.
Transcription:
How Community Health Workers Can Improve the Health of Adults With Sickle Cell Disease
Scott Webb (Host): Dr. Wally Smith is nearing the end of a five year $3.1 million grant from the National Heart, Lung, and Blood institute for sickle cell research. I can't wait for him to share the details of his study and how he’s helping the VCU community. So let’s talk to Dr. Wally Smith, a Florence Neil Cooper Smith professor of sickle cell disease and vice chair for research in the division of general internal medicine. This is Healthy with VCU Health. I'm Scott Webb. Dr. Smith, thanks for joining me today. What is a community health worker?
Wally Smith, MD (Guest): A community health worker is someone who shares either the same disease as their patient or similar socioeconomic or cultural background as their patient who can be a bridge between that patient and the healthcare system.
Host: That’s really interesting. I like that. The bridge metaphor. What is sickle cell disease and how does it effect one’s health?
Dr. Smith: Sickle cell disease is an inherited blood disease, the most common inherited blood disease in the United States effecting about 100,000 people. It has come a long way in terms of what the medical establishment is able to do to keep patients alive. It used to be that patients died in childhood from strokes and from infection due to weakened immune systems, low anemia, and severe infections of the brain, of the bloodstream and of the lung. Now patients live until adulthood. It still causes anemia. It still causes pain. The pain gets worse and worse as the patients become adults. So the way you think of sickle cell disease now for adults is a painful disease causing organ failure, anemia and early death.
Host: I honestly had no idea that it effected so many people. What are some of the ways that a community health worker can help? Let’s go through all those ways.
Dr. Smith: The U.S. medical home for adults with sickle cell disease is pretty much in disrepair. Because it was a childhood disease, patients are living longer. Two-thirds of patients are adults, and now there are not enough willing adult providers. Even the providers who are adult doctors are either distracted by taking care of cancer and other blood diseases, undertrained or unprepared to care for sickle cell disease adults. Patients in adolescents and young adulthoods are leaving what I call the feathered nest of the pediatric healthcare system and coming into what I call the abyss of the adult healthcare system for chronically ill patients with childhood diseases, especially sickle cell disease. Now they need somebody to hold their hand and give them a home. One of the first people to do that can be a community health worker. They need a bridge that we talked about a few minutes ago because the community health worker understands how to navigate this healthcare system for adults and understands what the patient may be going through. They can interpret for the patient what they need from their doctor and interpret to the doctor what the patient needs from them.
Host: So the health workers really are that bridge. Do you think that sickle cell is really understood nationwide or internationally? Are there things you wish people knew more, had more information that really understood sickle cell disease?
Dr. Smith: I wish that people knew that it was a primarily an adult disease. The language that is out there is that you die before the age of 20. That’s no longer true. Two-thirds of patients are adults. I wish that patients were not viewed as drug addicts. They are because they use opioids. In the middle of the opioid epidemic, they are unwitting recipients of stigma, under treatment and false accusations. They need pain control just like a cancer patient would, just like a patient coming out of surgery would. But they don’t get it. I wish that everyone understood that they are in legitimate need. You can't see sickle cells when you see the patient come in the emergency room the way you can see a tumor if a cancer patient had one. So people don’t believe that the patient’s really ill and people don’t trust that they're using their pain medicines correctly. I wish we could stop these patients from having to clog up urgent care centers and emergency departments and treat their pain at home and stay out of the hospital.
Host: That’s a lot to absorb there and I think it’s a good time to talk about your grant because I can hear the passion. Tell us about your grant, the work you're doing and how it effects people with sickle cell.
Dr. Smith: What our grant did was give a group of patients this community healthcare worker — we call them a patient navigator — to stay with them for a year. They contact them at their home, meet with them in libraries, accompany them to medical visits, call them on their telephone, stay close to them, and teach them about how to take the one preventive medication for sickle cell disease called hydroxyurea. They teach them how to take their medications properly and how to manage their disease properly.
Then, there was a group that got regular routine care and we compared outcomes. I will tell you upfront that we did not allow the doctors to know that the patients were getting a navigator the way that we would in routine care. What we did do was we took a small group of really high utilizing patients apart from this study and we let the navigators talk to the doctors about them. Those small group of patients saved $330,000 for the hospital. It was an amazing thing and that led to a huge program called the Adult Sickle Cell Medical Home. Now that the grant is over, that’s where our community health workers are paid out of — last year we saved $1.3 million.
Host: That’s amazing. Really inspiring work Dr. Smith. Is there anything more that you want to share with listeners about the work you're doing, about community health workers, about sickle cell. What else do they need to know?
Dr. Smith: I would love for patients to feel like they really had a home. I would love for them to come out of hiding. We couldn’t get the patients to come out of hiding in our federal study. They don’t trust anybody except each other. I would love for patients to feel safe. That it’s alright to come to the doctor. That you won't be mistreated. I would love for people to determine whether or not they have sickle cell disease. There’s a bunch of people running around with sickle cell disease that don’t even know it. You need a test called a hemoglobin electrophoresis to figure that out. So if you were born before 1989 and you’ve never been tested, you need to be tested.
Host: Dr. Smith, thanks so much for your time today. That’s Dr. Wally Smith, a Florence Neil Cooper Smith Professor of sickle cell disease and Vice Chair for Research in the Division of General Internal Medicine at VCU Health. For a new appointment, call 1-800-762-6161 weekdays from 8 a.m. to 5 p.m. and select option seven. You can also visit vcuhealth.org/sicklecell.
To hear more about how you can take control of your health, listen to the other episodes of Healthy with VCU Health at vcuhealth.org/podcast. This is Healthy with VCU Health. I'm Scott Webb. Thanks for listening.
How Community Health Workers Can Improve the Health of Adults With Sickle Cell Disease
Scott Webb (Host): Dr. Wally Smith is nearing the end of a five year $3.1 million grant from the National Heart, Lung, and Blood institute for sickle cell research. I can't wait for him to share the details of his study and how he’s helping the VCU community. So let’s talk to Dr. Wally Smith, a Florence Neil Cooper Smith professor of sickle cell disease and vice chair for research in the division of general internal medicine. This is Healthy with VCU Health. I'm Scott Webb. Dr. Smith, thanks for joining me today. What is a community health worker?
Wally Smith, MD (Guest): A community health worker is someone who shares either the same disease as their patient or similar socioeconomic or cultural background as their patient who can be a bridge between that patient and the healthcare system.
Host: That’s really interesting. I like that. The bridge metaphor. What is sickle cell disease and how does it effect one’s health?
Dr. Smith: Sickle cell disease is an inherited blood disease, the most common inherited blood disease in the United States effecting about 100,000 people. It has come a long way in terms of what the medical establishment is able to do to keep patients alive. It used to be that patients died in childhood from strokes and from infection due to weakened immune systems, low anemia, and severe infections of the brain, of the bloodstream and of the lung. Now patients live until adulthood. It still causes anemia. It still causes pain. The pain gets worse and worse as the patients become adults. So the way you think of sickle cell disease now for adults is a painful disease causing organ failure, anemia and early death.
Host: I honestly had no idea that it effected so many people. What are some of the ways that a community health worker can help? Let’s go through all those ways.
Dr. Smith: The U.S. medical home for adults with sickle cell disease is pretty much in disrepair. Because it was a childhood disease, patients are living longer. Two-thirds of patients are adults, and now there are not enough willing adult providers. Even the providers who are adult doctors are either distracted by taking care of cancer and other blood diseases, undertrained or unprepared to care for sickle cell disease adults. Patients in adolescents and young adulthoods are leaving what I call the feathered nest of the pediatric healthcare system and coming into what I call the abyss of the adult healthcare system for chronically ill patients with childhood diseases, especially sickle cell disease. Now they need somebody to hold their hand and give them a home. One of the first people to do that can be a community health worker. They need a bridge that we talked about a few minutes ago because the community health worker understands how to navigate this healthcare system for adults and understands what the patient may be going through. They can interpret for the patient what they need from their doctor and interpret to the doctor what the patient needs from them.
Host: So the health workers really are that bridge. Do you think that sickle cell is really understood nationwide or internationally? Are there things you wish people knew more, had more information that really understood sickle cell disease?
Dr. Smith: I wish that people knew that it was a primarily an adult disease. The language that is out there is that you die before the age of 20. That’s no longer true. Two-thirds of patients are adults. I wish that patients were not viewed as drug addicts. They are because they use opioids. In the middle of the opioid epidemic, they are unwitting recipients of stigma, under treatment and false accusations. They need pain control just like a cancer patient would, just like a patient coming out of surgery would. But they don’t get it. I wish that everyone understood that they are in legitimate need. You can't see sickle cells when you see the patient come in the emergency room the way you can see a tumor if a cancer patient had one. So people don’t believe that the patient’s really ill and people don’t trust that they're using their pain medicines correctly. I wish we could stop these patients from having to clog up urgent care centers and emergency departments and treat their pain at home and stay out of the hospital.
Host: That’s a lot to absorb there and I think it’s a good time to talk about your grant because I can hear the passion. Tell us about your grant, the work you're doing and how it effects people with sickle cell.
Dr. Smith: What our grant did was give a group of patients this community healthcare worker — we call them a patient navigator — to stay with them for a year. They contact them at their home, meet with them in libraries, accompany them to medical visits, call them on their telephone, stay close to them, and teach them about how to take the one preventive medication for sickle cell disease called hydroxyurea. They teach them how to take their medications properly and how to manage their disease properly.
Then, there was a group that got regular routine care and we compared outcomes. I will tell you upfront that we did not allow the doctors to know that the patients were getting a navigator the way that we would in routine care. What we did do was we took a small group of really high utilizing patients apart from this study and we let the navigators talk to the doctors about them. Those small group of patients saved $330,000 for the hospital. It was an amazing thing and that led to a huge program called the Adult Sickle Cell Medical Home. Now that the grant is over, that’s where our community health workers are paid out of — last year we saved $1.3 million.
Host: That’s amazing. Really inspiring work Dr. Smith. Is there anything more that you want to share with listeners about the work you're doing, about community health workers, about sickle cell. What else do they need to know?
Dr. Smith: I would love for patients to feel like they really had a home. I would love for them to come out of hiding. We couldn’t get the patients to come out of hiding in our federal study. They don’t trust anybody except each other. I would love for patients to feel safe. That it’s alright to come to the doctor. That you won't be mistreated. I would love for people to determine whether or not they have sickle cell disease. There’s a bunch of people running around with sickle cell disease that don’t even know it. You need a test called a hemoglobin electrophoresis to figure that out. So if you were born before 1989 and you’ve never been tested, you need to be tested.
Host: Dr. Smith, thanks so much for your time today. That’s Dr. Wally Smith, a Florence Neil Cooper Smith Professor of sickle cell disease and Vice Chair for Research in the Division of General Internal Medicine at VCU Health. For a new appointment, call 1-800-762-6161 weekdays from 8 a.m. to 5 p.m. and select option seven. You can also visit vcuhealth.org/sicklecell.
To hear more about how you can take control of your health, listen to the other episodes of Healthy with VCU Health at vcuhealth.org/podcast. This is Healthy with VCU Health. I'm Scott Webb. Thanks for listening.