Opioids to Treat the Pain Resulting from Sickle Cell Disease

Peter Salgo, MD: Let’s address the 800-pound gorilla involved, opioids. Many, many patients with sickle disease have chronic pain. Many of them are on opioids. My sense is they are not being treated well in terms of the perception of what they’re doing with these drugs, by the medical community and by the population at large. Is that fair?

Biree Andemariam, MD: I think that’s fair.

Jane Hankins, MD, MS: Yeah, absolutely.

Biree Andemariam, MD: The opioid crisis just made it worse. The bias that patients face when they go to the emergency department (ED), you’re a drug taker? Oh, here it is again. It just made it 100,000 times worse.

Elliot Vichinsky, MD: When I had a panel of young adults, I had patients moved to the communities out, and they go to where they live now for cure. I took out a panel of young adults to meet with the community, and they were really articulate. I mean they were asking, “What is the thing you want most?” And this young lady said, “I just don’t want to be treated as when I get into the ED that I’m a narcotic addict.”

Biree Andemariam, MD: Yes.

Jane Hankins, MD, MS: Exactly.

Sophie Lanzkron, MD, MHS: Yes.

Elliot Vichinsky, MD: And that’s what she said was the most important thing to her.

Peter Salgo, MD: I can’t tell you the number of times that I, as a house officer, being called out to the ED, saw this. This is a patient I knew. This is a patient that knew me. And what I heard from the folks seeing her at the front door was, “Oh, she’s here again.”

Biree Andemariam, MD: There she is again.

Jane Hankins, MD, MS: It’s stigma, right. It’s stigma. It’s awful.

Peter Salgo, MD: She’s in pain, darn it.

Jane Hankins, MD, MS: Yeah.

Peter Salgo, MD: She has a painful disease, what’s wrong with treating her?

Jane Hankins, MD, MS: You’re right.

Sophie Lanzkron, MD, MHS: Yes.

Biree Andemariam, MD: There’s absolutely nothing wrong with it, and we have to get over that. And if you ask patients, they’ll say to you, “You doctors are the ones that gave us opioids. Now you want us to take them?” When they were children they did not ask for opioids. But over time, because of their tolerance levels, they needed more and more opioids to get the same affect. We have done that as a medical community. And so now in the face of opioid crises and enhanced biases for whatever reason, to think that the right answer is to just simply take them away is wrong.

Jane Hankins, MD, MS: Right.

Biree Andemariam, MD: It’s wrong.

Peter Salgo, MD: It’s cruel.

Biree Andemariam, MD: It’s not fair.

Jane Hankins, MD, MS: It is cruel.

Peter Salgo, MD: It is inhuman.

Biree Andemariam, MD: Another thing patients will tell you is, “Yeah, when I go to the emergency department I am seeking drugs, I’m seeking help. I’m seeking pain treatment. But I’m not addicted to drugs, I just need help.

Peter Salgo, MD Are there options for these folks, other than chronic opioids?

Elliot Vichinsky, MD: Most patients are not getting daily chronic opioids. The disease has a variability, and there is a small subgroup of patients who go to the emergency department that make up the majority of emergency department visits.

Jane Hankins, MD, MS: Exactly.

Elliot Vichinsky, MD: And there is a much larger group that rarely go into the emergency department, but the emergency department employees see these few all the time.

Jane Hankins, MD, MS: Right, yeah.

Elliot Vichinsky, MD: And a subgroup of patients in practices are on chronic pain medicine.

Jane Hankins, MD, MS: Right.

Elliot Vichinsky, MD: I would not underscore, even in the older population, that everyone is on chronic methadone and opioids. There are a lot of people that are not, most in my opinion, but there is a subgroup that’s similar to other chronic illnesses. So, what I’m really concerned about is the inappropriate withdrawal, you know, saying we’re not going to treat you basically, we’re not going to give you this, but we have nothing else to do for you.

Jane Hankins, MD, MS: Exactly.

Sophie Lanzkron, MD, MHS: And our ED colleagues, right, are really stuck because they’re not the ones who know these patients. They’re not the ones who can design what their treatment plan should be. And so, the reality is getting these patients plugged into high-quality care so that someone can manage their opioid therapy appropriately and develop appropriate treatment plans. When they go to the ED, it makes life easier for everyone.

Peter Salgo, MD: I mean let’s look at opioids and their risk profile, other than dependency. If you want to substitute, for example, an NSAID [nonsteroidal anti-inflammatory drug]—good luck, with their renal toxicity and other toxicity. I’m going to vent for just one more moment. I hate that. I hate the fact that these folks who have a real disease, are in pain, get treated that way. I’ve hated it for 30 years, and I hate it the same now as I did then.

Elliot Vichinsky, MD: It’s really much worse now because it’s validated doctors that don’t want to see the patients.

Jane Hankins, MD, MS: That’s right, gives them a reason, yes.

Elliot Vichinsky, MD: They say, now I don’t treat these patients, I don’t give narcotics. And you don’t come to my ED, and so on. There are EDs I’m very familiar with that make the decision: we’re not giving it to anybody there with sickle cell. And so, the track where the patients are going, you can actually indicate where to go. It’s actually enabled people who didn’t want to see them to get to have a reason not to have to see them.

Biree Andemariam, MD: I absolutely agree with you and it’s not just healthcare providers. It’s also on the pharmacy side. Patients can go to a pharmacy with a a verifiably legitimate prescription, and they can be refused.

Peter Salgo, MD: Yeah. All I know is when I graduated medical school, I took an oath to help people.

Jane Hankins, MD, MS: Right, that’s it.

Peter Salgo, MD: And not helping these folks is criminal. And not in a medical legal sense, but in the ethical sense, it’s just wrong.

Elliot Vichinsky, MD: Well the healthcare system sets up these doctors in part so that they are not enforcing or providing infrastructural programs to take care of them, and they’re shifted into this unorganized, undertrained ED places where people who are burdened see a few and they’re not gone through. And the whole systems; you know if this was cancer or hemophilia, or cystic fibrosis or another disease that has similar or even less morbidity, this issue wouldn’t exist.

Jane Hankins, MD, MS: Exactly.

Peter Salgo, MD: The doctor is sitting there, and I can put myself in their position. “Oh my gosh if I start giving out all these narcotics, somebody is going to look at my prescribing habits, come after me, and I’m going to be on “60 Minutes.”

Biree Andemariam, MD: I probably prescribe the most opioids in the state of Connecticut. Nobody’s looked at me, so I don’t buy that, I don’t. You can set up legitimate practices with good contracts in place, screening measures to look for unexpected other substances in the urine. But I will tell you, even in our own practice that is very rare.

Elliot Vichinsky, MD: But they do use that.

Sophie Lanzkron, MD, MHS: Well, and the other piece though is that if you’re a community hematologist, oncologist out there, it takes a lot of resources to take care of these patients. In the pediatric world, there’s child life, and social workers and that, but that doesn’t exist beyond the infrastructures of adults, even beyond the opioids. But it makes the prescription of opioids more difficult when it’s just you and the patient.

Transcript edited for clarity.