As the United States begins to break out of the pandemic, healthcare providers continue to ponder the effects of the virus and blockade on patients in chronic and debilitating conditions.
Part 2 is her interview HCPLive®, Kim Smith-Doctor of Medicine Whitley Sickle cell Communities have struggled between the pandemic and the challenge of building trust during ongoing national and global immunization campaigns for these patients. She talked about the importance and role of the community and local clinics in overcoming such deep-seated hurdles.
HCPLive: Currently, the highly vaccinated United States and other countries are slowly opening up and beginning to resume normal life. In retrospect, what do you think this pandemic revealed about sickle cell disease? What are the lessons learned?
Smith-Whitley: An important issue for the sickle cell community is that the pandemic cannot be repeated enough. People with sickle cell disease come mainly from the color community, right? As a community already affected by the lack of proper medical care, these issues exacerbate the effects of the pandemic.
One of the things we have learned from our experience as a healthcare provider is the importance of communication, which I am anecdotally speaking. When you have a team you trust to take care of your health, you take the time to build relationships with them.
I think one of the most important lessons for me was the importance of staying connected with the patient during the pandemic. I needed to be able to give them quality information about when to seek medical care and how to continue taking their medication.
Especially in people with sickle cell disease with acute thoracic syndrome, it was necessary to provide important information about the signs of COVID-19 infection. Imagine that COVID-19 could exacerbate the problem.
There was a message in the community that people with COVID-19 symptoms should stay home, but I had to tell them that this might not be the case for people with sickle cell disease.
We had a big communication barrier. In some cases, the message to the general public would not have been the message that many of us as healthcare providers want patients with sickle cell disease to hear. We need to actually tackle these complex barriers and find ways for individuals with sickle cell disease to receive the care they need.
They included telemedicine to ensure that they could still get medical care without having to physically come to the hospital.
Again, I understand that communication efforts are primarily through the city hall, social media and awareness campaigns, and that we need to be aware of the signs of COVID-19. Then we moved on to a message about the importance of getting the vaccine.
And I think another part that I found very important was the impact of George Floyd’s death, which stressed our community. Still, it meant that local health care had an impact on the black community.
The pharmacy was closed due to concerns about local safety. The same is often the case at local laboratories. This means that people with sickle cell disease had to rely on these other communication patterns to make sure they got what they needed.
And finally, another thing that impresses me is that people with sickle cell disease are already at risk every day and don’t necessarily feel or experience some of the things that are causing the problem. That is not the case.
Sickle cell disease is usually characterized as a disease of recurrent acute pain episodes. They are unpredictable. But these are also just a few of the concerns doctors have about sickle cell disease. Chronic organ damage, which can lead to premature destruction of red blood cells and premature death, is also a major problem.
Therefore, it is really important to put an individual on a treatment like Oxbryta that can address the underlying condition and fix those problems.
I would rather want them to experience a pandemic that is as healthy and protected as possible. So it is very worrisome to me that many people with sickle cell disease did not receive disease-modifying therapy before we entered the pandemic. And now I think we need to change that and make sure we are protecting them in the best possible way.
You mentioned the importance of the message, especially with regard to vaccination. Of course, this national and global campaign was a large logistical project, especially for the color community. What did the message or conversation look like to these communities and patients with sickle cell disease? How are you working to build trust and confidence in them?
When talking about vaccine reliability, I think you mentioned a lot of keywords. It’s trust. Trust in the scientific community, trust in the medical community, and trust in the healthcare provider provide the information you need to make the right decisions about whether a vaccine is the right choice for you.
Universally and unconditionally, I believe this vaccine is the right choice for patients with sickle cell disease. One of the things we had to do was to provide people with sickle cell disease with information about the vaccine so that they could make informed decisions.
This meant addressing some of the myths that exist in the community about vaccines, such as the rush of vaccines and the fact that they can lead to problems related to childbirth. All of these myths had to be dealt with in the sickle cell community, just as they had to be dealt with in the general public.
And we had to convey this message in a way we didn’t judge. We had to acknowledge the fact that every individual, including individuals with sickle cell disease, has the right to make their own decisions. By providing them with tools, the information they needed to make these decisions was of utmost importance.
I think the pattern we saw was very similar to the general African-American community. Some were ready to get the vaccine right away. And no doubt I had it.
Once they were ready for the vaccine, they had to make sure they could actually deliver the vaccine. So it was of utmost importance to find a place in the community where they could get the vaccine, and to provide a place to get it in the hospital, or even in the clinics they go to on a daily basis.
Then there are groups of individuals who need more information. They want to see how individuals in their geographic and illness communities use vaccines. They needed more time to get an education.
Then there are only a few individuals who were very reluctant to get vaccinated. But I honestly believe that those individuals are also individuals who rethink over time.
Initially, the vaccine intake in my facility’s sickle cell community was so slow that I needed to find a way to raise awareness, the city hall, how to communicate, and how to make the vaccine accessible to individuals.
Next, vaccinated people had to find a way to share their experiences with patients with sickle cell disease. They talked about how safe it was and, in their experience, how it did not exacerbate the problems associated with sickle cells.
You can imagine that there was a challenge in ensuring that vaccine producers included people in trials from the color community. However, I think there were a few people with sickle cell disease who seemed to have actually been able to participate in these clinical trials.
Therefore, it was necessary to collect information on the safety of the vaccine. Patients in a children’s hospital went through this process and found to be very safe. Most of them had no serious complications, and they now have the usual routine of returning to the clinic community, which is fully vaccinated and hopefully less concerned about COVID-19 exposure. I’m passing through.
But I think we still have a long way to go. And in order for people with sickle cell disease to have access to the vaccine, I think we need to keep spreading this message about the vaccine and providing information so that people can make the right decisions.
Finally, it’s important not to judge, or what I call the vaccine shame. It is important to understand that many of the reasons individuals are not confident in vaccines may not have a relationship of trust with the medical team.
This means that you need to share experiences from other individuals with sickle cell disease to participate in, develop, and make informed decisions in a community of trust.
It really speaks to the power of the community with individuals with similar shared experiences. As you said, that care provider or care team is part of it, but those who share the terms and experience also build this important trust and each other is of the highest quality possible. It can be an integral part of getting care.
And I think that aspect of access to quality care is at the heart of what we really want to emphasize at GBT.
Another aspect is when you think of a community where there are few sickle cell specialists who can provide quality care. This is the talent challenge we face.
When we first launched the vaccine at a local hospital, we were trying to do it on weekends and in a group setting where individuals could come and be vaccinated regardless of their condition. We found that when people with sickle cell disease made the vaccine available at the team-care clinic, it was when we showed the highest show rates.
One of the things we want to have access to the vaccine over time is to get the COVID-19 vaccine from our daily health care providers. I think this will be a challenge for all the ways vaccines need to be stored and for tracking vaccine logs so they are not wasted.
But I think it’s really ideal for most individuals. It is to provide it at a time that is convenient for them by the teams they know.
In Part I of the Q & A, Smith-Whitley discussed World Sickle Cell Day and its value in raising awareness of the sickle cell community and its challenges. Read the full interview here.
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