Sickle Cell Center’s Medicaid Population Over 80 Percent
By Fallon Davis
The Center of Excellence in Sickle Cell Disease has treated patients from around the country for decades. It is one of the only sickle cell centers with a Medicaid population of over 80 percent. The Center of Excellence isn’t just a facility to improve the health of sickle cell patients, but also promotes interactive activities for patients and conducts extensive clinical research and education on the disease.
Located in the Boston Medical Center, the Center of Excellence in Sickle Cell Disease is carried by Elizabeth S. Klings M.D. The director of the facility for the last two years, Doctor Klings ensures the Center remains one of the leading medical facilities in the country.
Klings is a professor at the Boston University School of Medicine, in charge of all programs at Boston Medical and the director of the pulmonary hypertension Inpatient Education Program, Pulmonary Rehabilitation Program. She’s the director of the clinic in the Pulmonary Hypertension Center at Boston Medical. Her specialty is in the diagnosis, evaluation and treatment of patients with pulmonary hypertension.
With Klings’ speciality in Pulmonary Hypertension, she expanded her research over the years into how hypertension affects sickle cell patients. We spoke with Klings on her experience at Boston Medical and her current projects.
How long have you been director of the Center For Sickle Cell?
I became director of the center about a year and a half ago. The center has been in Boston for about the last 12–13 years.
With a pulmonary background, how did you get into treating sickle cell as well?
I am an adult pulmonologist / lung specialist and I got involved with sickle cell disease during my training. Initially, I was doing research on sickle cell and how it affects the lungs. I started seeing patients since the late 90s. I have been studying sickle cell from a research standpoint since 1997. Since the early 2000s, I have seen patients in my outpatient clinic for sickle cell and am seeing them on a long-term basis.
Why take an interest in sickle cell research?
I am really interested in how diseases happen in the blood vessels between the heart and the lungs also known as the pulmonary artery. People with sickle cell disease have a disease in their pulmonary artery which is called pulmonary hypertension. They get this to a greater frequency than people without sickle cell disease. I’ve been interested in why people without sickle cell disease develop pulmonary hypertension. This is really what sparks my interest in sickle cell. So, I am a non-hematologist interested sickle cell disease.
What are some gray areas about sickle cell disease that you feel your patients do not understand or grasp about their health?
There are plenty, but people with sickle cell disease really need to be followed by both a hematologist that has expertise in taking care of patients with sickle cell. Also, a primary care physician particularly as the patient gets older and into adulthood. What we know about people with sickle cell is as they get older they can develop more complications. Some of these complications are directly related to having sickle cell disease and some of them are actually not. Having a primary care doctor can be really helpful in managing all the medical problems a person might have.
I think it is really important for people with sickle cell to take control of their health by keeping up with all of their vaccines. For example, it is important to get a flu shot every year, it is also important to get a shot for ammonia and meningitis. It’s also very important to have certain screening test to look for complications of the disease. For example, we recommend all our patients be seen by an ophthalmologist every year to take a look at their retina. We want to see if there is any disease in the blood vessels going to the back of their eyes. Our patients in receive these vaccines at our center on a regular basis.
I recommend to people at my center to get an ultrasound of the heart every couple of years as an adult to keep an eye on whether or not they may be developing a problem with pulmonary hypertension. We also do urine tests to see if protein is in the urine and if there is any kidney disease.
Why is having an outpatient provider essential for sickle cell patients?
I think it is important to follow-up with an outpatient provider and obtain long-term to get treatment and medication. Hydroxyurea is the medication we use right now to treat sickle cell disease. There are many patients that do not take Hydroxyurea. We want to get out to the community the importance to really try to prevent some of the complications of this disease. We also try to encourage patients to keep up with some of the general health practices in their everyday life to control your symptoms. For example, people with sickle cell can develop more issues if they get too dehydrated. It is important that they keep enough fluids to keep themselves hydrated when exercising or out on a hot day.
How expensive is the medication Hydroxyurea? The treatment seems pricey?
I am not sure on how much Hydroxyurea is, but it has been around for years and I know it is not that expensive. The medication is also covered by all forms of insurance including Medicaid and Medicare.
Having done so much extensive research over the years, are there any projects that you would have liked to get funding but it didn’t happen like you hoped?
There is a constant battle to get more money for research funding. Ideally, we need to understand better the natural history of the complications of sickle cell disease. Meaning, how do these diseases develop over the lifespan and those are the types of projects that I am more interested in terms of figuring out how certain diseases occur.
Is your research more focused on preventive practices?
Yes, but, also identifying new things to target treatment. If you can understand how the disease happens you can obviously treat it better.
From the average amount of Medicaid and Medicare patients that come through your center, is getting treatment a hassle? How severe is it?
The average patient with sickle cell dies in their 40s or 50s. Right now, we don’t have great ways of preventing death because we don’t understand enough about this disease. There needs to be a good treatment center developed and how we can use treatments like bone marrow transplant to actually cure sickle cell disease by replacing the sickle cell disease bone marrow with bone marrow by someone who is not sick.
How has the healthcare entitlements (Medicaid, Medicare) affected your center?
I work in an institution that is 80 percent funded by Medicaid and Medicare and makes up most of our patient population. I feel we are considered a safety net hospital in the state of Massachusetts. That basically defines who we are as an institution. Patients are not denied care at our institution and will never be denied care. We would never turn anyone away whether they have insurance or not.
How do you pay for your uninsured patients?
We get subsidies from the state to pay for our uninsured patients. Everyone in the state of Massachusetts is required to have medical insurance for a while now. We draw funds from the free care pool which allows us to do that.
