Dr Keegan, what are some patient-specific characteristics that you consider when you’re choosing an agent or a regimen for atopic dermatitis?

One of the first criteria one would want to think about is what’s the age of the patient? How severe is their condition? What have they tried before, etc.? Things like that are all important criteria, and they can range from it’s the first time a patient’s ever come in and they just need some education about what things can be helpful, and what things they should be staying away from to here are topical medicines to try, if this is just going to be intermittent, and let me know how things go to I’ve already failed this and I failed that before to the I come with a grocery bag full of tubes and creams that have a variety of prescriptions that are inside of them and a whole litany of over-the-counter medicines. Then putting the bottles in my face, “Is this one OK? Is this one OK?” Me just trying to be able to move through the conversation with them in order to get down to the nuts and bolts of what’s going on. There’s definitely a range of patients and a range of patient ages.

Then you just mentioned, we were just discussing the concept of killing 2 birds with 1 stone. So what other concurrent medical conditions do they have that they might potentially benefit from? They make a decision, back again, Dupixent [dupilumab], and someone who has asthma and atopic dermatitis, can they benefit from 1 medicine that will treat both things? Both from the simplicity for the patient, cost for the insurance company, and the mitigation of risk from the perspective of prescribing the medicines vs maybe 2 medicines where we don’t always know what the risk is when we’re combining those 2 medicines together. We just have theoretical concepts of how it might work, so that may be criteria. And then, as I mentioned before, sometimes one of the biggest challenges that patients have is they say they want something, but they really want to get better, and they may sidestep us and say that they want something else or, “I’d like just this type of a medicine because my friend told me this cream is really great.” You look at it and you’re like, “But you’ve got 3 tubes of it already in that grocery bag there that you’ve given me, and that’s really not going to make a lot of progress for you.” So sometimes what buy-in can you get from patients?

I don’t want to say that I always let them make the decision about what they’re going to give, but I’ve had plenty of patients that come in and say, “My sister takes this and she’s doing great. My aunt is on this medicine and doing great,” and if I have 3 or 4 medicines in my mind that are potentials, and they lock in on 1 of them and have a positive experience before they’ve even come in the door to me, that might be enough to try, for me to help them get over the hump of getting started on a medicine, whether it’s topic or systemic. Whatever it can take to help them get onto that next step and get better would be something that I would latch on to and use to my advantage as well too. So those are a couple of them. I’m sure Dr Cameron has a few more strategies or thoughts.

I thought that was really well said. I think that clearly a patient’s perception before they come in the office is huge. There’s a reason why…

What commercial did you see on TV last night?

There’s a reason why direct-to-consumer advertising plays such an important role still. And so clearly, if there are a couple of good options, patient satisfaction is always a priority for me as well as building trust. If they come in and they want to try therapy, if I let them try that therapy, if it doesn’t work, they trust me even more, and so it’s all about just building that physician-patient relationship. In terms of your thinking about which treatments, I completely agree. I think that a lot of times we have several good options now, which is great.

Jumping back on that direct-to-consumer advertising, I think one of the things that we should all recognize is that all these medicines that we’ve talked about today are made-up words. Opzelura [ruxolitinib], Dupixent, dupilumab, these are all made-up words, and we in healthcare are really used to using those made-up words and they make up our own language. We use a lot of made-up words all day long, and patients, when they hear those made-up words in the commercials, they can’t always differentiate them, so they may come to me sometimes with concern. 

“I want to put you on Dupixent,” and they’ll say, “I don’t want to go on that. I heard that I’m going to have a heart attack and get cancer.” And I love it when they tell me what they’re thinking because then I’m thinking, “Oh my gosh, that’s not actually anywhere in the package insert and nothing that we have to be concerned about.” But when they voice their concerns for maybe another commercial that they’ve heard and aren’t really sure of what that medicine is, we can help them to navigate that foreign language that is medicine.

Drs Keegan and Cameron discuss patient-specific considerations for selecting optimal atopic dermatitis treatment strategies.

Patient-Specific Characteristics Driving AD Treatment Regimen

Amy Brennan

Andrew Blauvelt, MD, discusses switching therapies for atopic dermatitis (AD) treatment. 

Switching Therapies in AD

Andrew Blauvelt, MD 

Carolyn Goh, MD is a clinical associate professor of Dermatology at the UCLA David Geffen School of Medicine.

During a presentation on alopecia management, which was held at the 

American Academy of Dermatology (AAD) Annual Meeting

, Carolyn Goh, MD, spoke in a section of the talk titled ‘Approaching the hair loss patient. ’

Goh, who serves as clinical associate professor of Dermatology at the UCLA David Geffen School of Medicine, spoke in an interview with HCPLive regarding takeaways from her talk on addressing patients with alopecia as well as common misconceptions with 

Addressing Misconceptions in Hair Loss Disorders, with Carolyn Goh, MD

“I think one of the biggest things is that sometimes the hair loss patient is a big challenge for us as clinicians because there's so many questions,” Goh explained. “There are so many myths out there about hair, and it's a very personal issue for people. When their hair is falling out or they're losing it, they feel a loss of control. The whole takeaway is really to try to hone in on that part of it by giving them some component of the shared decision-making process that really puts control back into their hands.”

Goh highlighted examples such as putting in effort to establish rapport with patients suffering from alopecia, as well as defining goals of treatment more clearly with them. Goh also highlighted the importance of the exam and focusing on observations, as well as providing resources for patients.

“The there's some patient advocacy groups specifically for hair loss,” Goh said. “The 2 main ones are the National Alopecia Areata Foundation and the Scarring Alopecia Foundation. Those both have really strong patient education pieces. The National Alopecia Areata Foundation does a lot of fundraising as well and supports research, which has been pivotal in getting the drugs approved that we have now for alopecia areata.”

Goh was also asked about misconceptions she has observed in the field regarding alopecia, both in terms of patients and providers. She touched on the fact that many patients do not realize that alopecia refers to any kind of hair loss, though alopecia areata does not.

“That word, by itself, really does mean just hair loss of any kind,” Goh said. “So yes, when a patient shows up and then they say that they have hair loss, then they say and they're like ‘Do I have alopecia?’ Well, yes, you have a form of alopecia. But [also] a lot of people have taken that term alopecia to mean alopecia areata.”

For additional information on this topic, view the above video interview. To find out more from interviews at AAD, view our 

The quotes in this summary of Goh’s interview were edited for clarity. Goh has reported personal fees from Pfizer and author fees from BMJ BestPractices.

Carolyn Goh, MD, spoke in this AAD 2025 interview about her talk on guidance in addressing patients with hair disorders.

Carolyn Goh, MD

On February 10, 2022, the US Centers for Disease Control and Prevention (CDC) 

 of their revised guideline for prescribing opioids for chronic pain. While the 

 is more than 200 pages, the most important part is the actual guideline itself, which is 12 statements that take the place of the 12 statements that comprised the 2016 version that this draft is intended to replace.

Because it is likely that the primary intended audience of clinicians will not read the full document but will focus on the 12 statements, it’s key to examine what has changed, what has not, and the potential impact of this new guideline on the lives of millions of patients with chronic pain whose lives have been 

The biggest change is the removal of specific dosage cautions and limits in statement 4 and 5 and specific days duration of opioid therapy for acute pain in statement 6.These dosage and duration limits were arbitrary and unsupported by clinical evidence yet widely implemented across the country and even codified in law in at least 33 states. Prescribers, insurers, and even pharmacies, implemented them as strict limits. They have caused the most egregious harms over the past six years including forced tapering, hundreds of documented suicides, sudden loss of access to medication triggering withdrawal, dismissal from physician practices, inability to find medical care, and loss of function and quality of life.

In an acknowledgement of these harms to patients with chronic pain from abrupt discontinuation of opioid therapy, statement 5 now includes repeated cautions to “exercise care”, “gradually taper” and “not discontinue abruptly or rapidly” when reducing dosage.

The other less significant changes in the guideline itself are slightly easing the directives on patient surveillance and softening the absolute restriction on concurrent prescribing of benzodiazepines. Statement 9 changed checking the prescription drug monitoring program (PDMP) “ranging from every prescription to every 3 months” to when starting opioid therapy and periodically thereafter.Statement 10 changed the recommendation to use urine drug testing when starting opioid therapy and annually to “consider toxicology testing”.Statement 11 changed “avoid” concurrent prescribing of benzodiazepines and opioids to “use extreme caution” if doing so.

What has not changed in the revised guideline is the lack of balance in the discussion of whether to initiate, continue or discontinue opioid therapy.As in the 2016 version there is a focus on the risks and harms of opioids without any mention of the benefits of opioids for pain control when medically supervised or the risks and harms of inadequately managed pain, especially when other therapies have proven inadequate or contraindicated.

With their focus on patient surveillance through regularly checking the PDMP and using toxicology, the risk the guideline is most concerned about is the risk of addiction.Yet, repeated research has shown the risk of addiction in medically supervised pain patients on opioid therapy to be very small – between less than 1% to 8%. Stated another way, between 99% and 92% of chronic pain patients on opioid therapy do not become addicted to their medication.

However, millions of patients on stable doses of their medication have been forced to taper off their medication since 2016 due in large part to the widespread adoption of the CDC Guideline and the consequent fear of scrutiny and loss of licensure they have created in the minds of U.S. physicians. In 2015, the National Institutes of Health (NIH) reported that there were between 5 and 8 million Americans on opioid therapy for chronic pain.

Further, what has also not changed is the weak body of evidence most of the 12 statements are based on, as in the 2016 version.Using the Group Reading Assessment and Diagnostic Evaluation (GRADE) system which rates the strength of the evidence underlying each guideline statement, 7 out of 12 statements have a rating of 4 on a 1 – 4 scale, where 4 is the weakest level of evidence considered “very weak”. Three additional statements have an evidence rating of 3 or “weak”. Yet, 4 out of the 7 statements with very weak evidence were given the strongest “A” level recommendation rating by the CDC Guideline authors. That is, simply put, intellectual dishonesty.

This revised guideline again excludes certain pain conditions (cancer, sickle cell disease, palliative care, and end-of-life care) as more worthy of pain control where the stated risks and harms don’t apply. Pain is pain, and chronic pain is fundamentally a disease of the nervous system and brain regardless of the etiology. Due to great variation in individual differences regarding disease progression, severity of condition, sensitivity to pain, metabolic variables and more, benefits and risks must be considered on an individual basis. A person with any given pain condition could be in much worse pain for longer duration than a person with one of the excluded conditions.

Will the Revised Guideline Change Practice?

I think it’s unlikely that there will be a renewed willingness on the part of physicians to prescribe opioids again to chronic pain patients who were removed from opioid treatment against their will. According to a report from the US Department of Health and Human Services (HSS) to Congress in April 2020, at least 33 states have adopted statutory limits on opioid analgesic prescriptions. It’s doubtful that any of these codified restrictions will be repealed anytime soon. Once laws are on the books it’s very hard to change them. And, as long as the intense scrutiny of opioid prescribing continues as a result of these laws, regulations and US Drug Enforcement Administration (DEA) investigations of prescribers, I don’t anticipate that access will improve for chronic pain sufferers.

Of course, nothing will bring back all the pain sufferers who committed suicide as a result of being forced off their medication. And nothing can give back all the years lost to relentless pain and suffering of the innocent people living with debilitating chronic pain who were forced off their medication since 2016.

What is more likely to improve in the short term is payer coverage of non-opioid restorative, behavioral and complementary treatments, and medical devices for those with chronic pain, and perhaps with increased recognition of the harms caused by the guideline, a lessening of the punishing stigma associated with being a person in pain in the US. In the long term, I remain hopeful that the current trend of significant increases in public and private investments in neuroscience pain research will lead to novel therapeutics to more effectively treat chronic pain.

Listen to Cindy Steinberg discuss the implications of these changes in an 

interview featured on our DocTalk podcast.

Cindy Steinberg is the Director of Policy and Advocacy for the 

and Policy Council Chair for the Massachusetts Pain Initiative. She is a nationally prominent and articulate spokesperson for the needs of people living with pain and has won numerous awards for her pain policy accomplishments. In 2018, she was appointed by HHS Secretary Alex Azar to serve on the 

HHS Pain Management Best Practices Task Force 

and in 2019 she was invited to testify before the US Senate HELP Committee.

The Director of Policy and Advocacy for the US Pain Foundation addresses the important changes made to the updated draft of the CDC Clinical Practical Guideline for Prescribing Opioids 2022.

Assessing the Draft Revised CDC Clinical Practice Guideline for Prescribing Opioids 2022

Cindy Steinberg

Deepak L. Bhatt, MD, MPH, FACC, FAHA, FSCAI, FESC

Denise Kent, PhD, APRN, is an assistant professor for the department of biobehavioral nursing science at the University of Illinois Chicago.

Enhancing Standards for Ethical Responsibilities within Clinical Research

A set of challenges have been identified in clinical research within the United States given inefficiencies in different processes, slow participant enrollment, and high costs. In an interview featured in the second issue of 

, the quarterly pulmonology research newsletter powered by the American Lung Association Research Foundation, Denise Kent, PhD, APRN, discussed her team’s research in this area.

Kent serves as an assistant professor for the department of biobehavioral nursing science at the University of Illinois at Chicago. Kent spoke in the latest issue of The Respiratory Report about the Returning Computed tomography rEsults to actIVE Lung Health Cohort participants (RECEIVE) study and its aims.

“The received study is an ancillary study embedded within the Lung Health Cohort study, also referred to as the LHC,” Kent said. “The LHC is funded by the National Heart, Lung, and Blood Institute, and is a study of 4000 healthy individuals between the ages of 25 and 35 years. It is the first ever study to focus on millennials. The overarching objective of the LHC is to establish a cohort of young adults for the purpose of defining lung health and developing targets to intercept chronic lung disease at its earliest stages.”

Kent went on to describe additional details regarding the RECEIVE study’s objectives and the implications of her team’s work.

“The overall objective of the received study is to develop a tool to support the return of chest CT results within the LHC,” Kent said. “The long term goal is to establish a process by which the return of individual research results is standardized for participants. Hopefully, our approach will inform how other studies return individual research results across a range of diseases and conditions across multiple studies.”

To learn more about Kent's research, view the interview above or read her contribution to the second issue of The Respiratory Report here:

Ethical Excellence: Returning Computed tomography rEsults to actIVE Lung Health Cohort participants (RECEIVE)

This summarizes the latest in our pulmonology research quarterly newsletter powered by the American Lung Association Research Institute.

Denise Kent, PhD, APRN

, associate professor of medicine (infectious diseases), was inspired to work in HIV research because of what he was seeing across his community.

“I was bothered by seeing so many new infections and wanted to find solutions that were effective and that the community felt they had ownership of as well—that they had a stake in, that they had a role in designing and choosing,” said Wickersham.

So when he was offered the serendipitous opportunity to work as a postdoctoral fellow in the Yale School of Medicine (YSM) lab of 

, he took it. Wickersham arrived at YSM in 2009 and began to work with Malaysia’s incarcerated population and HIV prevention.

“The first case of HIV in Malaysia was detected in 1986, five or so years after the first cases emerged in the United States. It was almost entirely an injection drug use-driven epidemic for the first 10-15 years. When methadone became more accessible in Malaysia, those cases started to account for a smaller share of new diagnoses. And sexually-driven transmission of HIV exploded. Now nine out of 10 new cases are sexually transmitted, and just over half of those cases are occurring among gay and bisexual men or other men who have sex with men,” explained Wickersham.

He started making connections with the Universiti Malaya and the LGBTQ NGOs in the country. He saw a need for public health prevention research. He started his work to lower HIV transmission among gay and bisexual men in Southeast Asia. This focused on sexualized drug use, known as chemsex.

Previous research demonstrates that the use of drugs like methamphetamine, ecstasy, and GHB can lead to risk-taking behavior like multiple sexual partners, reduced condom use, and poor adherence to pre-exposure prophylaxis (PrEP) or medications that can prevent HIV infection.

Wickersham and his co-principal investigator 

, assistant professor at the University of Connecticut, designed a micro-randomized trial using a just-in-time adaptive intervention to determine whether using an app could reduce HIV-uninfected gay or bisexual men from engaging in high-risk behavior that would put them at risk for HIV transmission. They recently received an R01 grant from the National Institute of Drug Abuse for this work.

The app, called JomCare, will ask study participants twice a day about their substance cravings and their intention to engage in drug use. The researchers will randomize the participants to receive one of three types of interventions. Within 12 hours, the men will be assessed to see if they engaged in any kind of sexualized drug use activity and will undergo urine testing for stimulant drugs as an objective measure. Participants are followed for 90 days.

“Sexualized drug use is hard to intervene on. Unfortunately, there are no medication-based therapies like those that are available for opioid dependence, such as buprenorphine or naltrexone. There are no approved therapies for people experiencing dependence on these drugs,” explained Wickersham.

Through this study, the research team is trying to refine which prompts at which time and under which conditions are the most impactful in reducing risk-taking behaviors. The team will use that data with machine learning to predict under which conditions, which answers at which times of day, and which intervention prompts yield the greatest reduction in those risk behaviors.

, associate professor in the Department of Electrical Engineering at UT Tyler, will lead the machine learning component of the study.

, professor of emergency medicine, of biostatistics, and of medicine (endocrinology) and 

, professor of emergency medicine at The Ohio State University, and 

, associate professor of medicine at the Universiti Malaya in Kuala Lumpur, Malaysia, are also part of the research team.

Wickersham and team plan to continue these efforts in the future to focus specifically on HIV prevention.

Yale School of Medicine’s Department of Internal Medicine Section of Infectious Diseases engages in comprehensive and innovative patient care, research, and educational activities for a broad range of infectious diseases. Learn more at

A new app being developed, JomCare, will ask study participants twice a day about their substance cravings and their intention to engage in drug use.

Reducing High-risk Behaviors for HIV Prevention

Julie Parry

Kimberly A. Davidow, MD, pediatric hematology/oncology, Nemours Children’s Health

Davidow discussed how a new cohort study has helped support findings of an older European study and the need for a prospective trial to confirm the increased risk.

Kimberly A. Davidow, MD: Elucidating Risk of Autoimmune Disease in Childhood Cancer Survivors

A new, real-world cohort study has further identified an increased risk of autoimmune disease in childhood cancer survivors after an initial Scandinavian cohort study suggested this increased risk.

Findings from the study were presented at the

 66th American Society of Hematology (ASH) Annual Meeting and Exposition

, held December 7-10, 2024, in San Diego, California, by Kimberly A. Davidow, MD, pediatric hematology/oncology, Nemours Children’s Health.

“With the increased availability of these different kinds of large data platforms, Jefferson [Health] had access to Trinetics, which pulls in a large amount of healthcare data, and [they] wanted to use that to try to look at autoimmune diseases and try to cancer survivors,” Davidow told 

Although limited by constraints inherent to many electronic healthcare records, Davidow and colleagues found that childhood cancer survivors had an increased risk of rheumatoid arthritis, Sjogren disease, ulcerative colitis, and Crohn disease. Davidow shared that these associations should be looked further into in prospective trials, and primary care providers should keep in mind these increased risks when treating adult childhood cancer survivors.

“If you are a primary care provider who's taking care of someone who's a childhood cancer survivor, there's a lot of things you need to know, but this is also important to know. If they're starting to have complaints about joint pains or unusual rashes that, in another patient who didn't have this history, you might not think much of it yet, you need to think more about it for them, because there is this increased risk, and so you should screen sooner than you might for someone else,” Davidow stressed.A new, real-world cohort study has further identified an increased risk of autoimmune disease in childhood cancer survivors after an initial Scandinavian cohort study suggested this increased risk.

“If you are a primary care provider who's taking care of someone who's a childhood cancer survivor, there's a lot of things you need to know, but this is also important to know. If they're starting to have complaints about joint pains or unusual rashes that, in another patient who didn't have this history, you might not think much of it yet, you need to think more about it for them, because there is this increased risk, and so you should screen sooner than you might for someone else,” Davidow stressed.

Davidow KA, Rohan TZ, Roslund CR, et al. Real-World Data Shows Increased Incidence of Autoimmune Disease in Survivors of Childhood Lymphoid Malignancies. Presented at: ASH Annual meeting; December 7-10; San Diego, California. Abstract 5094

Kimberly A. Davidow, MD

Margaret Bobonich, DNP, FNP-C, DCNP, FAANP: 

What do we do? How can we assist our colleagues in helping them look at one, how do we choose therapies, and when do we collaborate and refer these patients, and what kind of patient education can we provide for these patients?

Well, I think just to kind of bring this all the way back around, first off an accurate diagnosis always leads to successful treatments. So, make the diagnosis. Familiarize yourself with the different presentations of atopic dermatitis and the neonate versus the toddler versus the teen versus the elderly. And I think have a high clinical index of suspicion. If it is coming back, if it is very pruritic, if it’s life-altering, even if it doesn’t look like classic atopic dermatitis, it likely is a phenotypic presentation of that even if it’s not what’s inside your dermatology textbook. So, get the right diagnosis because the right diagnosis will then lead you to begin to move into the more, what I call the empathic side of treating this How is this impacting your life? How would your life change, how are the treatments that you’ve been using working? And so, begin that dialogue with patients and just kind of let them open up a little bit. It doesn’t have to be two-hour long visits for them to really feel like why this is different than other people have seen. Just asking a few questions lets them know that you're into the diagnosis, that you're not just going to run for a cream and send them out the door, and that you can make a difference. And if you don’t have that time to really tell them everything; you're not going to unload everything on the first visit. Tell them about comorbidities, tell them about every single systemic option, you're going to get their acute flare under control with topicals. And then you're going to bring them back in, you're going to earn their trust, you're going to continue to talk to them about it, and then you're going to begin – I’m always introducing non-steroidal options to patients right up front. If I feel like I have to use a topical steroid to calm it down – I may not need to once we get this new topical JAK out but I’m always introducing the idea of us moving off the topical steroids. I don’t use them much but systemics onto these new treatments. So it’s kind of a progressive revelation of talking to them about the disease, what you believe it is, how you want to open up the box and let them know that you know how this impacts you and the family, that we’ve got good treatments out there, we’re going to start off with this, but it’s important for me to see you back because we want to look into other treatments that are on the horizon that can control this for long periods of time without having to lead the anxiety about when am I going to break out next time. 

You know I think you summarized it very well Doug. I think it’s exciting where we’ve been and where we’re going. We don’t have to use systemic agents with these high toxicities that are really rescue agents, like the cyclosporine. We have choices now. And letting the patients know that and one of the interesting things is I’ve heard people say well that’s an injection. But guess what, let’s let our patients make that choice. Let’s give a fair representation of all the treatment options that we have and the ones that are coming because the truth is that an injection may be nothing compared to the quality of life that atopic dermatitis is having on these patients. A lot more to come for us especially our adult, some of the newer agents will be anticipated FDA-approved for adults. Some of the resources you like to give your patients Doug, what are they? 

Well certainly the National Eczema Association, the NEA, I think is an excellent resource with information about clinical trials that we may have mentioned in this presentation, great patient support, practical data that’s there, practical recommendations on bathing and moisturizing. I really, really like the NEA as a great resource. Do you have others? 

Margaret Bobonich, DNP, FNP-C, DCNP, FAANP:

 The National Eczema Foundation is my choice. But I think as far as resources for you as clinicians, I think one of the best ammunitions I would have for you is if you're in primary care or if you're in derm and you're not comfortable with prescribing some of these agents that are here now or the newer ones that we anticipate that will be FDA-approved in the near future, if you're not comfortable, reach out to a local dermatologist or dermatology NPPA and let us help you. One, we’ll help you with that patient and supporting them and getting them the best treatment and optimal outcomes, but also to help you learn about it. We really, really want to support you as colleagues and that’s my suggestion. Any last words Doug? 

 I just want to echo that. You know the study is a few years old, but it showed that only 19 percent of patients with severe atopic dermatitis got referred from primary care to dermatology. I think that’s improved, especially with some of the commercials that have been out about eczema and dupilumab’s campaigns. But we just want to say that this is – our medicine is a collaborative effort. We’re not living in silos here. We want to – we in dermatology want to partner with our primary care providers, we want to partner with our allergy specialists, we want to partner with the folks that are going to help us out too. I want to tell Margaret, you're helping your patients and you're helping yourself because these folks are living with infections, they’re living with scratching, they’re living with anxiety and depression. And we now have treatments out there that can radically change and improve that. So that’s the biggest message of today’s time together is that there is help out there, that we can get these medicines covered by most insurances, and that they can really change patients’ lives. 

 Thank you so much Professor Doug. This is why we call him Professor Doug. And thank you so much. Thank you for watching 

. If you’ve enjoyed this content, please subscribe to our newsletters to receive the upcoming programs and great content right in your inbox. So thank you everyone. Be safe and live well.

Experts in dermatology discuss patient education and clinical pearls to assist colleagues in the management of atopic dermatitis.  

Care Collaboration in Atopic Dermatitis 

Margaret Bobonich, DNP, FNP-C, DCNP, FAANP

 I want to give us all an opportunity to give some advice or practice pearls to all of our viewers including other hematologists, maybe focusing a bit on red blood cell health or other areas that you think are important including decreasing long term organ damage. I’ll start with you Elna. What advice or practice pearls do you have for our audience?

 I think it is the shifting paradigm that yes sickle cell is an anemia and it causes pain, but the thing that reduces survival and still has maintained the early mortality in sickle cell disease patients compared to the general population is not necessarily the pain or the pain episodes. It is the progressive organ dysfunction and so we should slowly move away from the deception of sickle cell being a mild disease. We should consider it like diabetes or hypertension and that the organ damage is also a silent killer. If we shift that paradigm the way we approach them and how we approach our practice even towards them, we will shift an emphasis in embracing and offering disease-modifying agents to almost all of our patients and having the discussion of the impact of end organ dysfunction and damage in overall longevity and mortality.

 Thank you so much, Elna. Nirmish, you’re next.

 I would just extend the conversation in the sense that educate and be real, continue to educate. I love the descriptions that came up in our conversation today. As I told Matt, I’m going to use some of those. I’m very graphic about drawing pictures and being in the room and getting them to really understand and see what’s happening inside of them because that gives them a little bit of control of knowing what’s happening to themselves. Otherwise, it’s a chronic disease that they have no control of. What control can you give them? It’s educating them about the disease and being able to tell others about what’s happening to them. I think the pearl for me is to educate them and that includes education about these new therapies, and the new drugs that are available now. I even actually started to talk to them about the new drugs that potentially could come.

When we talk about gene therapy, I still kind of give a teaser about it. We’re not there yet. It’s all about being real with them. We don’t have the data. I’m trying to get them to understand that’s why research studies are occurring; this is what we hope that patients can be involved enough with. The patients, I can’t say this enough, they’re really smart. They’re really savvy about connecting to others and they want the information. They just take it up and soak up this information and I think it’s good for the community. Those are some of the pearls. And I mentioned it before, talk about these new medicines when they don’t need it. Talk about everything but pain until you have to talk about pain. Elna brought this up, that there might be the pediatrician inside of us trying to think about the whole world and not the adult side, but I think that our adult colleagues, and I know Biree you do this as well, I think we’re understanding that the quality of life is a big deal. Thus, I think those are some things to consider as we have our colleagues continue to see patients with these new drugs.

 I’ll leave you with 2 more images or analogies that I use because I think that there’s nothing sexy about having a chronic disease and a lot of it is just persistence of the patients, families, and providers in meeting the treatment goals and treatment plan. As I tell families when they’re going for their annual ophthalmology visit or their annual TCD [Trans Cranial Doppler], there’s nothing sexy about this. It’s like changing the oil in your car. It’s a pain. It’s annoying. It costs a little money. But if you don’t do it, what happens to the car? All the kids know the answer to that. It breaks down. Thus, that’s why [there is] this constant persistent pressure to keep on the plan is really very important.

The other one that I find useful to try and sometimes improve adherence to the treatment plan is the idea that organs are like a rock on the beach and the waves every day hit the beach, and they hit that rock and every day you don’t see anything. It’s just like the damage which is done every day with sickling even though you have no symptoms. There’s some clinical inexorable accrual of organ damage is what my mentor used to call it. There’s a little bit of damage every day that’s imperceptible. When you come back to that beach at the end of high school and you see the rock there, it’s still getting pounded by the wave and then you go away to college and then you have kids and you come back and all of a sudden there’s no rock on the beach. It’s just sand. It’s that daily pounding of that rock by a wave that you don’t notice the rock changes, but it’s becoming sand slowly and that’s what we’re trying to prevent with the daily damage of sickle cell disease on your organs.

Hydroxyurea and other disease-modifying agents are trying to prevent that from the daily point of view so that, as Nirmish pointed out or Elna pointed out, we’re trying to improve the overall health and organs of our patients who we present to our adult colleagues so that they can ultimately hopefully have a prolonged life and that sickle will no longer be an either immediately life-threatening or life-limiting disease, but hopefully have normal lifespan and quality of life. That’s really the goal. It’s hard. It’s hard to do that as a child, as a teen, and as an adult with so many other pressures on us but to encourage them to continue to follow the treatment plan with what we have while also being cognizant of what’s coming and what might be until something better comes along, as I say. Let’s follow this plan now. My promise is to keep them informed of what’s potentially available, both experimental and approved, and then they can choose collaboratively with us to potentially take on some of those new therapies.

Thank you, Matt. I really love the imagery in those analogies. I think we’ll all start to use them. I just wanted to add that I think when I speak to colleagues, clinicians of any specialty, patients, the community, family members who help to support their loves ones living with sickle cell disease; I really tell them that the tide is changing in sickle cell disease and it’s changing pretty quickly. Not only do we have more therapies available now, but our understanding of new potential targets is also growing exponentially and we’re seeing that playing out in the clinical trials that are available and that will be emerging in the near future. I think that sickle cell disease as we know it is changing. It is changing. Our patients may not feel that way today, but I do talk to my pediatric colleagues including some of you on the webinar today and I’m always heart-warmed when I hear the hydroxyurea story, for example. My colleagues say that ever since we’ve been giving it to babies starting at 9 months of age, we have such a healthier kindergarten class when we see those 5-year-old’s go off. That just warms my heart.

I think as an adult practitioner I’ve not yet begun fully to that extent to see the effects of novel agents or disease-modifying therapies or even transplant for that matter because we don’t do enough of it in the adult world. But I think that that tide is really changing. Just like hemophilia, for example, where we’ve come a long way, the expectation in hemophilia management is no leads. When we think about HIV care and we were making people toxic, sick with therapy as we knew it a few decades ago, and now people can be on 1 pill once a day. I think that there’s the potential in the very near future, hopefully in all of our lifetimes, to see that amazing impact on those affected by sickle cell disease. I’d say the future is definitely bright. I want to thank Elna, Nirmish, and Matt. And I want to thank you all for watching this 

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A panel of experts in hematology discuss the future directions for sickle cell disease and share practice pearls for disease management. 

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