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Jonathan Alicea is an assistant editor for HCPLive. He graduated from Princeton University with a degree with English and minors in Linguistics and Theater. He spends his free time writing plays, playing PlayStation, enjoying the company of his 2 pugs, and navigating a right-handed world as a lefty. You can email him at firstname.lastname@example.org.
This past year has brought unique challenges for sickle cell disease patients and communities of color. The ongoing vaccination campaign is yet another challenge that healthcare communities must find ways to overcome.
As the United States begins to emerge from the pandemic, healthcare providers continue to reflect on the impacts of the virus and lockdowns on patient with chronic, debilitating conditions.
In part 2 her interview witih HCPLive®, Kim Smith-Whitley, MD, discussed how sickle cell communities have fared during the pandemic and the challenge of building up trust during the ongoing national and global vaccination campaigns in these patients. She spoke to the importance and role of communities and local clinics in overcoming such deep-rooted hurdles.
HCPLive: Now we are starting to see the US and other countries with higher vaccination rates beginning to slowly open up and resume normal life. Looking back, what do you think this pandemic has revealed about sickle cell care? What are the lessons that have been learned?
Smith-Whitley: As an important issue for sickle cell disease communities, the pandemic cannot be reiterated enough. Individuals with sickle cell disease primarily come from communities of color, right? As a community that has already been impacted by lack of of adequate health care, those issues compound the impact of the pandemic.
One of the things that we learned from our experience in the pandemic as healthcare providers—and this is me speaking anecdotally—is the importance of communication. When you have a team that you trust, to take care of your health, then you build a relationship with them over time.
I think that one of the most important lessons learned for me was the importance of staying connected with my patients during the pandemic. I needed to be able to give them high quality information about when to seek medical care and about how to continue to take their medications.
I needed to give them important information about what the signs were of COVID-19 infection, particularly in individuals with sickle cell who have acute chest syndrome. Imagine the potential for COVID-19 exacerbating that problem, right?
I had to tell them that although there was a message out in the community—that people who had symptoms of COVID-19 should stay at home—that may not be the case for individuals with sickle cell disease.
We had a big communication barrier. In certain cases, the messaging that was going out to the general population was probably not the message that many of us as healthcare providers wanted our patients living with sickle cell disease to hear. We have to really address those compounded barriers and try to make a way for individuals with sickle cell disease to get the care that th ey need.
Those things included telehealth to make sure that they could still get medical care without needing to come physically to the hospital.
Again, I mention that communication effort—which was primarily through town halls, social media, awareness campaigns—so that they understood what signs of COVID-19 they should be watching out for. Then, that transitioned to messaging about the importance of getting the vaccine.
And then I think that the other piece of what I thought was so important was the impact of George Floyd's death, which put stress on our communities. Because even at that, it meant that the local healthcare were impacted in black communities.
Pharmacies were closed due to concerns about safety in their communities, often the same thing with local labs. So that meant that we had to rely on these other patterns of communication to make sure that individuals with sickle cell got what they need.
And then finally, I think the other thing that is striking to me is that individuals with sickle cell disease are already compromised day to day, and they don't necessarily feel or experience some of the things that are causing problems in them.
Typically, sickle cell disease is characterized as a disease of recurrent acute pain episodes. They're unpredictable. But those are also just a small fraction of what physicians are concerned about in sickle cell disease. The premature breakdown of red cells and chronic organ damage that can lead to premature death is a major issue too.
So, getting individuals on therapies like Oxbryta that address the underlying condition and can modify those problems is really important.
I would rather them go through a pandemic as healthy as possible and as protected as possible. So, it's very concerning to me that many individuals with sickle cell disease were not on disease modifying therapies before we went into pandemic. And I think now we have to change that and make sure that we're protecting them in the best way possible.
You mentioned the importance of messaging, particularly about vaccinations. Of course, this national and global campaign has been a massive logistical undertaking, especially for communities of color. What has that messaging and conversation looked like for these communities and for patients living with sickle cell disease? How do you work to build trust and confidence in them?
I think you mentioned a very key word when you talk about vaccine confidence: And that's trust. Trust in the scientific community, trust in the medical community, and trust in your health care providers to give you the information that you need to make a good decision about whether or not the vaccine is the right choice for you.
Universally and unconditionally, I believe that the vaccine is the right choice for patients living with sickle cell. One of the things that we needed to do was to provide information to those living with sickle cell disease about the vaccine so that they could make an informed decision.
This meant addressing some of the myths that were out there in the community about the vaccine, such as that it was rushed and that it could actually lead to problems related to fertility. All of these myths we had to address in the sickle cell community, just like we had to address in the general population.
And then we had to give this message in a way that didn't judge. We had to acknowledge the fact that every individual has the right to make their own decision, including individuals living with sickle cell disease. Giving them the tools, the information that they needed to make these decisions was first and foremost.
I think the pattern that we saw was very similar to the general African American community. We had a portion of individuals that were ready to get the vaccine right away. And definitely, I had that.
We had to make sure that when they were ready for the vaccine that we could actually provide it. So, finding places where they could get the vaccine in their community, providing a place for them to get it in the hospital, or even in the clinic, where they routinely go was first and foremost.
Then you have a population of individuals who want more information. They want to see how individuals in their own geographic and disease communities are doing with the vaccine. They needed more time to get educated.
Then there's just a small portion of individuals that were very reluctant to get the vaccine. But I honestly believe that those individuals are also individuals that over time will reconsider.
At first, we had very slow vaccine uptake in the sickle cell community at my institution, and so we had to do awareness campaigns, town halls, find ways of communicating, find ways to get individuals access to the vaccine.
Then we had to find a way for people who took the vaccine to share their experience with individuals with sickle cell disease. They would talk about how safe it was, and how, in their experience, it didn't exacerbate problems associated with sickle cell.
You can imagine there were challenges with making sure that the vaccine producers were including people in trials from communities of color. But I imagine there were a few people with sickle cell disease who were probably available to actually participate in these clinical trials.
So, we had to gather that information on the safety of the vaccine. Our patients at Children's Hospital went through the process and we found it very safe. Very few of them had major complications, and they now are fully vaccinated and hopefully going through the normal routine of getting back into a clinic community that is not as concerned about COVID-19 exposure.
I think we have a long way to go, though. And I think that we need to continue to spread this message about the vaccine to make sure that individuals with sickle cell have access to the vaccine and then to continue to provide information so that people can make good decisions.
Finally, it is important not to judge, or what I call vaccine shame. We need to understand that a lot of the times that the reason that individuals are less confident about the vaccine is that they may not have a trusting relationship with their healthcare team.
That means we have to go in and develop a community of trust, with shared experiences from other individuals with sickle cell disease, so that they can make an informed decision.
It really speaks to the power of community with individuals of shared and similar experiences. Like you said, that healthcare provider or care team is one piece of it, but it seems that those with shared conditions or experiences can also be an integral part of building this key trust and ensuring one another can get the best possible, high quality care.
And I think that that aspect of access to high quality care is the core of what we at GBT are really trying to emphasize.
I think that the other aspect of that is when you think about the communities where there are few sickle cell experts available to provide high quality care. This is a challenge of manpower that we are facing.
When we first launched the vaccine at our hospital locally, we were trying to do it on weekends, and in a group setting where individuals no matter their condition could come and get vaccinated. What we found is that when we made the vaccine available in our clinic—where individuals with sickle cell go to get care by their team—that's when we had the highest show rates.
One of the things that I would like to see with vaccine access over time is being able to get the COVID-19 vaccine from your routine health care provider. I think that that is going to be a challenge with all of the ways that the vaccine needs to be stored and trying to track the log of the vaccines to make sure that they're not wasted.
But I think that that is really going to be ideal for most individuals, which is to provide it at a time that is convenient for them by a team that they know.
In part I of the Q&A, Smith-Whitley discussed World Sickle Cell Day and the value it has for raising awareness of sickle cell disease communities and their challenges. Read the full interview here.