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'To fight for not just longer life, but better care': Doctor shares sickle cell patients' struggles

dr. wanda whitten-shurney
photo courtesy
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Wanda Whitten-Shurney
Dr. Wanda Whitten-Shurney.

Approximately 2,800 adults in Michigan have sickle cell disease according to the state health department.

The life-long condition predominantly affects the Black community.

Typically, when a patient in Michigan with the disease turns 21 years old, the state stops paying for supplemental insurance, also known as Children’s Special Health Care Services.

But under the fiscal year 2022 budget, the supplemental insurance has expanded to include lifetime coverage for all sickle cell disease patients 21 and older, including an estimated 400 uninsured patients.

WKAR’s Megan Schellong spoke with Dr. Wanda Whitten-Shurney, a general pediatrician who specializes in outpatient care for sickle cell patients. She's also the CEO and medical director of the Michigan chapter of the Sickle Cell Disease Association of America.

Interview Highlights

On what sickle cell disease does to the body

It's a disease where the red blood cells take on an unusual shape. They're shaped like a farmer's sickle. And so, in addition to having this unusual shape, they are sticky and fragile, so they break down early. So, the stickiness causes blocked blood vessels, and blocked blood vessels, of course, cause pain, and because it's the red blood cells that deliver oxygen to all the different parts of the body, blocked blood vessels also cause organ damage. And then the breakdown of the red blood cells causes anemia, or low blood.

On why she’s been invested in sickle cell patients for three decades

My dad, Dr. Charles Whitten, who founded the National Association for Sickle Cell Disease ... And another is the fact that I have literally been involved in five homegoing services in the past six weeks. So, our patients are dying; they’re dying early. And even the ones that are living longer, their quality of life is so negatively impacted. So that's another motivation for me is to fight for not just longer life, but better care, so that the quality of life can be improved for our patients.

On the push to get more African Americans to donate blood, especially during the pandemic

Not having enough blood sometimes causes these visits for their transfusions to have to be extended, until we can find the right donor ... If you're going to get blood from someone, that blood has to match you, and it's more likely that someone with a similar ancestry will have blood that matches you. So, we really have a big push toward getting African Americans to donate blood, and one of the big myths about blood transfusion is that people with sickle cell trait feel like they can't donate blood, but they absolutely can donate blood.

Interview Transcript

Megan Schellong: This is Morning Edition on WKAR. I’m Megan Schellong.

Approximately 2,800 adults in Michigan have sickle cell disease according to the state health department.

The life-long condition predominantly affects the Black community.

Typically, when a patient in Michigan with the disease turns 21 years old, the state stops paying for supplemental insurance.

But under the fiscal year 2022 budget, those benefits have expanded to include lifetime coverage for an estimated 400 uninsured sickle cell patients.

Doctor Wanda Whitten-Shurney is the medical director of the Michigan chapter of the Sickle Cell Disease Association of America and she joins me now to discuss what changes the expansion has introduced.

Thanks for being here.

Dr. Wanda Whitten-Shurney: Oh, thanks for having me. It's my pleasure.

Schellong: So, Doctor Whitten-Shurney, can you tell us a little bit about what sickle cell disease is and a typical day for these patients?

Whitten-Shurney: You know, it's a disease where the red blood cells take on an unusual shape. They're shaped like a farmer's sickle. And so, in addition to having this unusual shape, they are sticky and fragile, so they break down early, so the stickiness causes blocked blood vessels, and blocked blood vessels, of course, cause pain, and because it's the red blood cells that deliver oxygen to all the different parts of the body, blocked blood vessels also cause organ damage. And then the breakdown of the red blood cells causes anemia or low blood, and that's why patients with sickle cell disease are sometimes tired, they get tired more easily; but in addition to that, I'm going to use this word hemoglobin. Hemoglobin is the red stuff that's inside the red blood cells, the protein, and that's what carries the oxygen, and the body likes to see hemoglobin inside the red blood cell, and when it is free in the circulation, that's when you can get organ damage really just caused by the hemoglobin.

So it's really a complex illness because every part of the body, of course, needs oxygen, right? So you know, I can't really describe a typical day of an individual living with sickle cell disease. They frequently refer to themselves as warriors, which I think is a very appropriate term, right.

I think one of the most important things about sickle cell disease is that it interrupts every aspect of your life, you know, and unpredictably, you know, so it can cause a lot of stress.

Schellong: You've been working with sickle cell patients for about two decades.

Whitten-Shurney: Let’s make that three decades.

Schellong: Three decades, for three decades now. And it sounds like this condition, you know, it's lifelong. It affects their everyday life. They're in a constant shortage of blood. Do you have a personal connection for what keeps you motivated to stay in this field? It sounds very, you know, emotionally exhausting.

Whitten-Shurney: I always have to start with when you talk about motivation, my dad, Dr. Charles Whitten, who founded the National Association for Sickle Cell Disease, which is now the Sickle Cell Disease Association, the National.

He also started the comprehensive sickle cell clinic at Children's Hospital where I spent 30 years taking care of children there, and he also started the Sickle Cell Disease Association of America, Michigan Chapter where I'm the CEO and medical director now.

So that's one motivation, but I'm starting to say that even a bigger motivation for me now is the resilience of these families that have this such challenging illness, you know, that's one thing, and another is the fact that I have literally been involved in five homegoing services in the past six weeks.

So, our patients are dying; they’re dying early, and even the ones that are living longer, their quality of life is so negatively impacted.

So that's another motivation for me is to fight for not just longer life, but better care, so that the quality of life can be improved for our patients.

Schellong: Your patients got this news that supplemental insurance was getting expanded, what was their reaction to finding out?

Whitten-Shurney: You know, I think there are a lot of patients that are very happy about that. I think that this patient population has been really neglected.

You know, and we haven't gotten the kind of care that we need, particularly for adult patients, and I think that they're happy to see that the governor is paying attention to this patient population. I think that the COVID pandemic kind of called greater attention to healthcare disparity, and this was one of the things that Governor Whitmer did in order to try to correct some of that healthcare disparity. So I think they're very happy about that.

Schellong: We're talking about the pandemic right now, and I know that it's caused hospitals to delay many procedures for people who are living with chronic conditions like sickle cell disease, in what ways have your sickle cell disease patients been affected by these delays in procedures?

Whitten-Shurney: Well, you know, I think they've been affected the same way other communities have been affected because you need a procedure, and you can't necessarily get it, you know, but I think that the bigger concern with the pandemic and our patients and families is that warriors are very hesitant to go to the emergency room, you know, because they know that they're going to have long wait times, and a lot of times they're disrespected.

Even though the hallmark of sickle cell disease is excruciating, unpredictable pain, they're frequently treated as quote, unquote: “Drug-seeking, they just came to get narcotics, they aren't really in pain.” They’re not believed, right, and so I think that now with the pandemic, they're even more resistant to going to the emergency room to get care, right, because they're afraid of contracting COVID in the emergency room.

So, what's happening is that our patients are suffering even more in the face of the pandemic, and, you know, I talk about the resilience of the sickle cell community.

I also want to talk about the skepticism, right?

Because they've been mistreated for so long, and so that has to do with getting vaccinated, you know, because they're very nervous about, you know, they use the term guinea pig a lot when new treatments become available, and so when we had such a fast turnaround for the immunizations, then patients are very concerned, you know, I have a hard time sometimes getting my families to get the flu vaccine, much less the COVID vaccine. So that's another impact that I think kind of stands out in the sickle cell community.

Schellong: So you've shared with us some of the problems that sickle cell patients, warriors, have encountered. Like, just with the hesitation of going to the emergency room, but specifically during the pandemic, there's been a blood donor shortage.

People aren't donating. Since treatment for sickle cell often involves stem cell transplants and blood transfusions, how have these blood shortages impacted these warriors?

Whitten-Shurney: Particularly the group of patients who are on what we call a chronic transfusion program, they go to the clinic, you know, once a month, once every three weeks to get a transfusion because they have a complication like stroke, and we know that chronic transfusions can prevent a second stroke once you've had a first stroke, or even can prevent the first stroke, if we know ahead of time that you're at high risk for having a stroke.

So not having enough blood sometimes causes these visits for their transfusions to have to be extended, you know, have to wait a little bit longer until we can find the right donor, and that's one of the reasons that we really advocate particularly for African Americans to donate blood, because of course, blood has to match, right?

If you're going to get blood from someone, that blood has to match you, and it's more likely that someone with a similar ancestry will have blood that matches you.

So, we really have a big push toward getting African Americans to donate blood, and one of the big myths about blood transfusion is that people with sickle cell trait feel like they can't donate blood, but they absolutely can donate blood, and it's just that the blood from an individual with sickle cell trait would not be used for a patient with sickle cell disease, and that's kind of a complicated reason that it can't be used. So I'm not going to go into that in a short period of time, but you know, that's one of the myths.

Schellong: What are some of the longer-term approaches the health industry overall can do to better serve sickle cell patients, these warriors?

Whitten-Shurney: You know, in my 30-year experience in the sickle cell community, the biggest challenge has been the transition from pediatric to adult care, and I think the major problem there is that there are not enough primary care providers or hematologists that are number one, capable of and number two, willing to take care of adult warriors, and I think the reasons are twofold. I think part of it is because how complicated they are, you know, they're complicated, both medically and psychosocially.

So, they've had this lifelong treatment with narcotics that's come from the pediatricians, right. And you know, that it takes a higher dose of narcotic if you're on it for a long period of time.

So, a lot of our adults are on high doses of narcotics, right. And so, and then the other the psychosocial part has to do with the fact that because their lives have been so interrupted, you know, by all of these complications, that they're stressed, and they need a lot of support, you know, rightfully so.

Schellong: Doctor Wanda Whitten-Shurney is the medical director of the Michigan chapter of the Sickle Cell Disease Association of America. Thanks so much for being here.

Whitten-Shurney: Hey, thank you for having me.

This conversation has been edited for clarity and conciseness.

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