Steps To Improve A Patient's Quality of Life

Peter Salgo, MD: What are the organized steps to address the quality of life of patients with sickle cell disease across the board, or is this catch as catch can? Anybody know of anybody? I’m sure you have some. In this country as a large group of practitioners, do we have an integration for these patients lead to the system that works for their quality of life?

Sophie Lanzkron, MD, MHS: Well we can measure their quality of life.

Jane Hankins, MD, MS: There is that.

Peter Salgo, MD: Yeah.

Elliot Vichinsky, MD: I think in the state of California, historically, I think it’s been a moral outrage that the adult universities and other major centers have not felt the need to organize and provide the standards necessary for their population. And I think it’s a major issue. Now I think it could change, and I think maybe medications will. But it’s shocking, someone who runs an adult and pediatric facility, the difference in access to specialty care, once you’re leaving a pediatric program. You may have some outstanding adult hematologist taking care of who built programs, but if you go outside and you’re in the world, most adult patients don’t have that kind of access anymore.

Peter Salgo, MD: This is shocking, with 300,000 or more patients with sickle cell disease in the United States, it’s shocking.

Jane Hankins, MD, MS: 100,000 in the United States.

Peter Salgo, MD: It’s 100,000. You know what? It’s still shocking.

Jane Hankins, MD, MS: It’s still shocking.

Sophie Lanzkron, MD, MHS: People are thinking about how we develop comprehensive sickle cell programs so that patients have access, and so there’s finally some movement in that direction, but we’ve still got a long way to go.

Elliot Vichinsky, MD: I’m excited that there’s significant talk that would change this.

Sophie Lanzkron, MD, MHS: Yes.

Elliot Vichinsky, MD: So, there is a community awareness. I’m anxiously waiting to see how it’s implemented.

Peter Salgo, MD: I thought we’d leave it for now: We can do a lot better.

Biree Andemariam, MD: We are better.

Jane Hankins, MD, MS: We can always do better.

Peter Salgo, MD: You know we’ve come to the end of our time. And before we all go, I want to give each of you an opportunity to give 1 last thought to our viewers. We’ll start at this end.

Biree Andemariam, MD: As Sophie said, we’re in an exciting time in terms of sickle cell disease and novel therapies in the pipeline. In order for us to continue to develop that pipeline, we need patients to participate in clinical trials. And I know this audience is primarily clinicians. And I think clinicians need to be mindful of this. And if they’re taking care of adults with sickle cell disease or kids with sickle cell disease and they don’t have clinical trials open in their own center, to please refer them to centers so that we can get these studies done.

Peter Salgo, MD: Gotcha. You’re up.

Jane Hankins, MD, MS: I would say to patients: be hopeful. This is an exciting time and for providers I would say there is a human being behind this request for opioids that you’re seeing. So, try to see behind the curtain there’s a human being there.

Sophie Lanzkron, MD, MHS: Yeah. I mean I do think it’s an exciting time and we have all these therapies. But if patients don’t have access to care, they’re not going to have to access to those therapies.

Peter Salgo, MD: You’ve got the last word.

Elliot Vichinsky, MD: I think sickle cell disease is a unique public health problem. It represents the best of medicine and technology, and the worst of the public health system. And I’m hopeful that those 2 can come together in the near future.

Peter Salgo, MD: Every time I see a patient with sickle cell, I hope it’s the last patient that will have to suffer with this disease. And what is intriguing and exciting for me is what I heard here today is we’re approaching that. And that’s really nice. And don’t take your word lightly. We are not doing a good job in integrating folks, from what I’ve seen, and we can do an awful lot better in the healthcare industry.

But I want to thank all of you for being here for today’s discussion. On behalf of our panel I want to thank you out there for joining us as well. We hope you found this peer exchange discussion to be useful and informative. I’m Dr Peter Salgo, and I’ll see you next time.

Transcript edited for clarity.