How Can Sickle Cell Providers Advocate for Equitable Diagnostics?
More Programs and Publications Featuring Maya Bloomberg, MSN, APRN
In this program:
Sickle cell patients need more equitable diagnostics, but how can healthcare providers help advocate for solutions? Hematology nurse practitioner Maya Bloomberg from Sylvester Comprehensive Cancer Center shares how providers can assist with raising sickle cell education and awareness, screening recommendations, and increasing patient self-advocacy.
Transcript
Interviewer:
How can healthcare providers advocate for changes at the systemic level to ensure more equitable diagnostic practices for sickle cell patients and their families?
Maya Bloomberg, MSN, APRN:
We just need to continue to educate and raise awareness and encourage more comprehensive education on sickle cell, specifically for screening, but also just education on the complex psychosocial needs of this population. A survey found that less than 20 percent of primary care providers felt comfortable managing sickle cell disease, and in reality, a good PCP can accomplish a lot, they do a lot of the annual exams that if we target our PCPs, those are a good gatekeeper to help make sure that at least they're getting basic comprehensive screening tests done.
We need to just educate on the fact that guidelines exist and outline how to manage patients with sickle cell and what screening is included. Because the fact that people don't know that there are guidelines and a really well-outlined resource on how to care for sickle cell patients is a little discouraging. And then I also like to empower my patients, because at the end of the day, you are your biggest advocate. You can have an amazing provider, but things happen. We care for hundreds and hundreds of patients. If we're getting pulled in different directions...nobody is ever perfect, but I think at the end of the day, if a patient can do their best to take charge of their health and just educate yourself on your disorder and what are subtle signs that you should be aware of and what your screening tests are, you can really ensure to have checked what's necessary, and again, that knowledge is going to allow you to have more meaningful dialogue and make sure you're really able to get what you need to prevent those complications.
They had mentioned just now that it can be sometimes an issue with your PCP or the specialist that you see, to where it can be hard for patients to be able to have the right diagnostic practices and have the right practices in general for their sickle cell care specifically, but going off of that, with a shortage of specialists and a growing shortage of specialists, many adults receive care from oncologists without adequate sickle cell expertise or interest for that matter. So what questions should patients be asking to ensure that the screening tests and assessments that they need are actually done?
Yeah, I think that's a great question and it's a problem we're seeing, especially on the adult side, and unfortunately, when somebody gets connected with an oncologist, they likely are just focusing on sickle cell as a disorder of pain and anemia. Now, this is generalizations, there are some wonderful oncologists who really do understand the comprehensive nature of the screening tests involved, but for individuals who might not be as lucky, you can ask what screening tests are being done to make sure my organs are healthy? And again, this is where you can become your biggest advocate and really educate yourself on what screenings should be done, so knowing that every year you should get your eyes checked.
And if you have any sudden vision change, that could be a medical emergency, and you should go get that checked out. If you had never given a urine sample at all for your labs, next time be like, oh shouldn't you check my urine and make sure that there's no protein? So you can have more dialogue with your providers, the more information and things that you understand yourself. And then not to self-promote, but you can always follow me on Instagram because I do provide a lot of information to really empower you to be able to care for yourself with sickle cell, because we can only cover so much information during the clinic visit, and this really just helps touch on a lot of different topics and conversations and complications that you can save and bring to your provider and just say, hey, are we doing X, Y and Z to again lead to that more meaningful conversation.
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