BDO: Can you tell us just some of the things that you’ve found in the past and what are you looking forward to in sickle cell research?
LD: So, when I was in, in practice, I was seeing sickle cell disease patients. There wasn’t a lot out there in terms of therapies and it’s really exciting now there are a lot of companies who are doing research in sickle cell disease and so the potential treatments that could come out to treat sickle cell disease in the future, the field is very active and so that’s very exciting.
BDO: So as a patient, where can a patient go to find the best quality research once they found out that their child has sickle cell?
LD: So really in terms of where patients and families can go there, the first resource really should be their physician. You know, a patient with sickle cell disease should have a hematologist that’s experienced in sickle cell disease. So that’s really their first resource I would say, but if they’re interested in learning about clinical trials, like I said, there are a lot of companies who are doing clinical trials right now. Um, you could go to the company website, um, and you know, you can probably click clinical trials and they’ll probably take you to clinical trials. I know for our company, in particular, we have a call center, so, you can call the companies, call center and the call center should be able to tell you about clinical trials, how to access the websites that are specific to clinical trials for sickle cell disease. I’m glad you brought that up. There’s a lot of misconceptions about clinical trials that are out there.
BDO: Can you speak about just to the everyday person, like what are clinical trials? Just dispel all the myths surrounding clinical trials.
LD: Well, in terms of clinical trials, I mean there has been a lot of history that people can look at clinical trials negatively. And certainly in our community there have been some injustices and clinical trials done quite a long, long time ago. Clinical trials have really evolved in that they have to follow certain criteria, they’re many, many monitoring committees that monitor the patients in the clinical trials. Patients have to sign an informed consent so they have to understand why they’re being asked to participate in this trial, what’s expected of them. And so the process has changed in terms of, you know, the patient is really at the wheel making the decision making a very informed decision, the patient or the parents if it’s a child. And so there, there are a lot of guidelines in place so that trials are conducted ethically and the patients are kept safe, um, when, when they’re participating in.
BDO: So, why is it important that our community, the African American community being involved in more clinical trials?
LD: Well, it’s a great question. And you know, for years I’ve heard, you know, African Americans are underrepresented in clinical trials and I think some of that may come from some mistrust for, again, for things that had previously happened. But I think especially in sickle cell disease,…
… it’s a wonderful opportunity because it affects primarily the African American community for patients to be involved in clinical trials because they get to be part of the research that’s done to bring these therapies to them. They get to have the experience with the therapies early on, um, and they really get to just be a lot more educated about the potential therapies that are being researched and once they are approved and come on the market, they would have been involved in that process.
BDO: So,you’re telling me, so some of the drugs that are actually helping sickle cell patients are a result of a clinical trial where the participants are African Americans?
LD: Yes. And really any drug that is FDA approved, FDA is the approving body for all drugs has to go through a rigorous clinical trial.
BDO: So, what are we looking forward to, within the next five years?
LD: So there are quite a few companies, as I said, doing clinical trials and they’re looking at different mechanisms of the disease that, that, that they can potentially impact with a certain compound. Um, and so there are trials looking at, um, helping with the sickling, helping to stop some of the sickling in sickle cell disease. There are trials that look at what’s called adhesion molecules, which makes red cells and white cells and platelets more sticky and allow them to clot or causing occlusion. There are trials looking at that mechanism of action. There are a lot of trials going on looking at it, you know, a lot of different novel mechanisms of sickle cell disease and how we can target those different mechanisms.
BDO: So, as a parent, let’s say I have a child that has sickle cell and I’m currently possibly looking at a clinical trial, what should I be looking for as a parent for that clinical trial?
LD: As a parent, you know, what parents should look for if they’re considering a clinical trial for them, for their child is to look at the age range. Most trials, you know, have a particular age range in the patient population, so looking at the age range to see if their child fits the criteria from that standpoint to determine if they’re looking at a particular sickle cell genotype, you know, there, there are different genotypes in sickle cell so you know, does the child have this particular genotype or they’re qualified for the trial. Many trials look at the number of pain crisis or visa occlusive crises that they’ve had in the past and so looking at those criteria, so really talking to their physician, looking at all of what’s called the inclusion-exclusion criteria to see if their child is a potential candidate for that trial.
BDO: So, they don’t have to be afraid, right?
LD: They don’t have to be afraid. And again, I think that, you know, if you’ve, if you see a hematologist did, you know, especially as a pediatric patient, but also as an adult patient, you know, you know your physician, you have a good relationship. Hopefully, with your physician, you can really ask open-ended questions. There’s no stupid question. If you have a question about something, ask the question. It’s a good question to ask because patients and parents need to be as informed as possible before they make the decision to participate in a clinical trial where your organization is doing incredible work and I’ll just look forward to the future. Thank you. Thank you so much for joining me. Thank you.