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The Sickle Cell Disease Association of America (SCDAA) is extending efforts to increase and diversify participation rates of underrepresented demographics in clinical trials through their C.A.R.E.S. Consortium initiative.
The association’s C.A.R.E.S. Consortium, a collaboration of pharmaceutical companies uniting to educate, and promote clinical trial participation, has created a free sickle cell disease clinical trial finder, providing easier accessibility for qualifying individuals, furthering confirmation of potential drugs and therapies, and how certain parameters may be helpful or require change.
“Our sickle cell disease clinical trial finder, which is on our website, is just clinical trials for sickle cell, whereas many of the other clinical trial finders that are very helpful, cover several different types of diseases. If you are living with sickle cell disease, or a caregiver for someone with [the disease], you can come right to the website. We also have a mobile app that people can download [for] free,” shared SCDAA President and CEO Regina Hartfield.
According to a report published by the Association of American Medical Colleges, Black Americans account for roughly 5% of clinical trial participants across the United States. The participation rates rank well beneath the mark to ensure significant representation in research on Black American people facing various diseases, including sickle cell disease. Reportedly, one out of 365 Black or African Americans is born with sickle cell disease, compared to one out of every 16,300 Hispanic-American births. Likewise, roughly one in 12 Black or African-Americans are born with the sickle cell trait.
Historically, large proportions of Black Americans remain skeptical of clinical trials and medical campaigns targeting minority populations. Hartfield recognizes the prevalent distrust when we observe the lack of diversity in clinical studies examining Sickle Cell Disease, while additionally emphasizing the association’s focus to help address the barriers and concerns that people are expected to have when considering participation.
“The sickle cell disease community is very knowledgable, and well informed about the disease, but they will also have the opportunity of understanding who this pharmaceutical company is in their space, and is running this particular clinical trial,” Hartfield explained. “Not only are they going to have access to all of the information about the clinical trial, the criteria, process, level of commitment, and all of those things, but they want to understand what this particular pharmaceutical company focuses on, and more about the study itself and their history of working with the Sickle Cell Disease community.”
While Black communities remain skeptical of becoming the subject to a potentially disastrous medical trial, brave survivors similar to Dr. Patrise Holden, founder of The Language Key, has taken the leap of faith to participate in a few clinical trials, as she has faced a lifelong battle of Type SS Sickle Cell Disease — the most aggressive form of the illness.
“Quite frankly, it wasn’t comfort that caused the urge to participate — it was gross discomfort. Sickle Cell is a terrifyingly painful illness. It is hallmarked by paralyzing fatigue because of the inherent incapability of the red blood cells to trade oxygen, so your hemoglobin is always low, which is the blood count. So due to that paralyzing fatigue and debilitating pain, for me it wasn’t [so much], ‘Hey, I should trust these people and do these clinical trials.’ It was, ‘What could be worse than this,’” Dr. Holden explained, adding that she held optimism that the trials could actually be beneficial.
Holden has had her share of successes with sickle cell clinical trials, as one of her most successful introduced her to the drug Procrit (that goes by the generic name Epogen), an extremely expensive injection accidentally found to help encourage the birth of normal birth cells for sickle cell patients, while initially used for cancer patients to help increase available red blood cells. The renewed energy birthed from the injections in cancer patients was later used to help manage the pain endured by sickle cell patients. Holden’s care team played a major part in encouraging her participation that led to her discovery of the medication.
“The relationship that I had with whoever was presenting this to me, that went a long way. So sometimes if a trusted source like a doctor that is beloved to you, brings it to you, then you already know this person is invested in you. If it is a beloved caregiver that brings it to you then you feel a little more comfortable because you feel this person has done some level of due diligence,” Holden said.
Holden also explained that participating in trials, for some, is due to dire straits, after years of debilitating pain.
“If the oxygen is not being carried by the red blood cells, that means your critical systems and organs, over the years, are being starved of critical oxygen. So systems are breaking down at a very young age with us, so we get desperate quickly. Sometimes it’s that combination of desperation for a lot of us, and the right person at the right time with the message, that can break through that wall and get us to agree,” she said.
The SCDAA continues to remain hopeful of increasing participation from minority demographics by creating sincere, and verifiably safe environments for clinical testing.
“[Within] the C.A.R.E.S. Consortium, we feel that we have an opportunity and a responsibility to change the perception of clinical trials — to reach people to understand what their concerns are, what some of the barriers are to participating in clinical trials, and to address those so that people may feel more comfortable,” Hartfield said.
We are very glad for such a chance to the sicklers because they go through a lot and although we can’t access most of these chances in Africa – East Africa – Uganda . Thanks so much for the clinical trials and may God bless you for this act of kindness because you have really helped us . Thank you again.
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