CONVERSATIONS WITH THOUGHT LEADERS: INTERVIEW WITH DR. LACHANCE
Welcome to INSIGHT, a series of conversations to bring new information and compelling perspectives on issues of critical importance to people with autoimmune diseases and stakeholders. Through interviews hosted by AARDA President & CEO Randall Rutta, INSIGHT contributes to our understanding of issues and ideas, best practices, and strategies for change in support of the autoimmune community and society.
Meet dermatologist, Dr. Avery LaChance. She is an attending physician at Brigham and Women's Hospital in Boston, Massachusetts. Learn about Dr. LaChance, her practice, and the frequent frustrations with access restrictions that undermine her medical recommendations and put her patients’ health at risk, particularly during the COVID-19 pandemic.
Randy:
Q. Welcome, Dr. LaChance. Tell us about your specialty, your patients, and involvement beyond your practice on behalf of the autoimmune community.
Dr. LaChance:
A. Thank you, Randy. Clinically, I focus on patients with autoimmune skin disease including those with connective tissue disease, as well as patients with psoriasis and psoriatic arthritis. In my nonclinical time, I serve as our department’s Director of Health Policy and Advocacy. In this role, I help physicians in our dermatology department engage with policy and advocacy efforts that have an impact on our patients and practice of medicine and lead our health policy curriculum for our dermatology residency program.
Randy:
Q. What a unique opportunity to be able to bring your medical expertise into the policy environment, whether it's a private practice policy on how to improve the care or in the policy arena, where AARDA spends a significant amount of its advocacy time, helping the systems improve and better respond to what you're seeing – in the trenches—with patients.
Dr. LaChance:
A. Absolutely. The goal is to help clinicians provide care at the bedside, and also be aware of all the other factors that come into play that affect whether or not patients are able to get the care that they need.
Randy:
Q. That's wonderful. Can you share some of what your typical patients are experiencing as they go about their lives, whether they're going to school, going to work, just leading their lives? How is their autoimmune disease manifesting itself? What kind of challenges are they facing in managing their health?
Dr. LaChance:
A. One thing that’s really unique thing about the skin in terms of both autoimmune disease and other skin conditions, is that skin disease is something that we all can see. Each patient can see their own skin disease themselves, but also skin disease is visible to everyone else in the world around you. There is no other organ whose health—or lack thereof—is broadcasted so widely to the external world. Because of this, for starters, the appearance of someone’s skin can play a major role in shaping his or her identity in terms of how patient’s view themselves, but also how they are viewed by others. For instance, my patients with alopecia areata, a type of autoimmune hair loss in which you can lose all of the hair on your scalp—and/or all over your body—share that they are often mistaken for someone battling cancer and having lost their hair from chemotherapy. Patients share that this can have a very real impact both in terms of overall confidence as well as how other people treat and view them.
On top of this, skin findings that we see in our patients with autoimmune disease can cause a wide range of symptoms. Some of the diseases I treat can result in an incredible degree of itch, pain, or overall discomfort. This can have a big impact on an individual’s ability to sleep, work, and go about their daily lives.
Finally, many of the skin findings that we see in autoimmunity can be a window into someone’s overall health and what we see on someone’s skin can just be a small glimpse into how their disease is impacting their life and health overall. For instance, for many of my patients with psoriasis—although we can see their skin disease in the clinic—what we might not be able to see is the fact that psoriasis is associated with any number of associated underlying co-morbid diseases such as psoriatic arthritis that can make it such that a patient might not be able to move, work, or live without pain in their joints.
So, for all patients with skin disease, and certainly for all of my patients with autoimmune skin disease, their skin can have such a profound impact on all aspects of their life.
Randy:
Q. What's the age range of your patients, and do you treat more women than men?
Dr. LaChance:
A. In general, autoimmune disease tends to effect more women than men, so I certainly see more women than men in many of my autoimmune clinics. A lot of autoimmune skin diseases in women show up in the childbearing years, so I do see a number of women in this age range. However, overall I focus on adults with autoimmune skin disease and certainly see both women and men of all ages. Although I do not see children, some of my colleagues in my practice see pediatric patients with autoimmune skin disease, so the age range of autoimmune skin disease can start from young children all the way up to elderly individuals.
Randy:
Q. As you interact with patients, you certainly get to know them, their story, their journey. One of the challenges that AARDA attempts to address is the path to diagnosis. How long does it take a patient when they start to experience early symptoms to recognize that there might be a problem and then potentially recognize the issue could involve the immune system? Do you see that path to a diagnosis being particularly long for dermatology patients?
Dr. LaChance:
A. Quite often, patients' journey to diagnosis can be long for any autoimmune disease, and certainly for dermatology. Especially because a lot of the diseases we treat are rather rare, and many times, patients can either be misdiagnosed initially or can start out with very subtle findings that can be missed during a routine skin exam. And it's not to say that their initial provider has missed something. Rather, some of the diseases that we treat can take time to diagnose or requires familiarity with some of the more subtle clues we look for to help with diagnosis in our autoimmune patient population.
Some of these conditions are very rare, and can also start with mild or easily misdiagnosed symptoms. One of the diseases I treat, for example, called eosinophilic fasciitis, which can ultimately cause severe tightening of the skin on a patients arms and legs, can start with what looks like swelling of the arms, hands, and/or lower legs. Because of this, often times patients might present first to their primary care doctor and be started on treatment for leg swelling or even a leg infection when actually this is an early finding of their autoimmune skin disease.
Additionally, sometimes patients with diseases like lupus can initially start to notice some very mild symptoms in the form of fatigue or difficulty sleeping or very minor joint pain. Then, slowly, their skin findings may start to show up to provide us with clues to help a patient reach a diagnosis. But, not until the healthcare professional has more information about the disease can we really put some of those pieces together.
A lot of times, it takes someone who really gets to know their body over time and advocate for themselves as a patient to say, "These are all the things I'm experiencing," to allow that patient and provider to reach a diagnosis. It can often take time.
Randy:
Q. I would also think many of these conditions are complex and some patients have more than one condition. In a metropolitan area like Boston, there are many excellent providers that are working closely together. But for some people who live out in communities where they don't have access to an array of providers near each other, is it challenging to facilitate a coordinated care approach—to have the specialists themselves talk to each other and to guide that patient?
Dr. LaChance:
A. Integrated care is one of the biggest struggles for some patients. At some of the larger academic medical centers, when we do get patients plugged into providers all in one setting, it can really make their care much more coordinated and help all of their providers communicate and talk under one EMR or electronic health medical record system. However, in the community still, a lot of providers are on different health record systems, whether it be paper charts or discreet electronic medical record systems that aren't integrated. This can make communication between specialists and coordination of care extremely complex.
For instance, my mom, a retired dermatologist, ran her own private practice clinic in Connecticut for over 30 years. She would often say one of her biggest struggles was trying to find out what happened with a patient after that patient left her clinic. If she referred a patient to a rheumatologist or an endocrinologist, it would take a long time to get notes back from that provider because each office would have to take the time to fax them or mail them to her. Often times, these notes would never make their way back to her. The fact that the entire US healthcare system is not on one medical record system, as is the case in other countries, such as the NHS in the UK is one of the biggest hurdles, I think, in ensuring coordinated care for our complex patients. And so actually having care happen in real time, particularly when someone is critically ill, can be supremely difficult either in the community setting or when a patient does not get all of their care in one hospital system. Patients with autoimmune disease, in particular, often require a whole team-based approach. This is really essential for providing the best care we can for our patients.
Randy:
Q. Many of your patients are self-advocates, which is so critical. Their conditions can be complex and difficult to diagnose, and some patients go into remission, and then they have a flare up. Their condition from day to day varies. What are some of the barriers that you see them confront within the system?
Do insurance plans generally support them in getting the care that they need? Do you see them struggling with policies and rules that don’t necessarily challenge other patients, but for those with chronic conditions and autoimmune disease, are significant barriers? We often hear about access restrictions like step therapy that can get in the way of that treatment plan that a patient and a physician puts in place. Do you see those kinds of systemic barriers affecting your patients?
Dr. LaChance:
A. Absolutely, all the time. We're fortunate in Massachusetts that we have a very low uninsured rate, yet we still have a number of patients who are underinsured. For all our patients, even those with comprehensive insurance plans, there are many barriers in place that come between a provider and a patient being able to have a conversation, choose a treatment plan, get to that treatment plan without jumping through a fair number of hoops and hurdles to actually begin that treatment plan. As you mentioned, fail first or step therapy is one obstacle put in place by insurance companies that we see all of the time in our care settings. It is a significant barrier that we have to try to tackle in terms of trying to get the right medication for the right patient at the right time, which can be extremely difficult. Unfortunately, these battles are far too frequent, and most of the time, I am having to work to fight against many of these policies on a day to day basis.
Randy:
Q. I would imagine that that can be fairly labor intensive, both in terms of your time and impact on office systems.
Dr. LaChance:
A. Yes, labor intensive and time intensive, for us and the patients! These policies result in a significant amount of work that has to be done by both our amazing office staff, our physicians, and our prior authorization team. Additionally, this entire process can take an incredible amount of time to put the required information together, submit this to insurance companies, and then have a long back and forth appeals process where necessary. There’s also often a significant lapse between the amount of time when an insurance company receives all of the information and when they process it. We give them all the information they need and sometimes, they respond 30 days later with an answer. And so, it's a lot of front-end work, but then there's a lot of waiting around as well for medications that our patients really need.
Randy:
Q. Have you experienced situations where certain medicines are available to one particular patient, but not another? They're on a formulary, maybe at a certain tier that could affect affordability. Have you seen that play a role as you and your patient determine what course of care is available and best for them? Or perhaps there's a new medicine that you're excited about because you think that could really meet a patient's needs. Have you seen that those formularies, tiers and specialty formularies, and requirements to use certain pharmacies end up complicating both decisions and that path of treatment?
Dr. LaChance:
A. Yes, and it’s incredibly difficult. For example, in my psoriasis clinic, every time I try to treat a patient, I think about all of their ongoing comorbidities and how we can best treat a patient by tackling all of their ongoing manifestations of their disease. Do they have skin disease and are joints issues involved? Do they have inflammation of the eyes? Do they also have inflammation of their belly and intestines? A number of our drugs for psoriasis can either help or hurt another condition the patient may be battling, and as doctors, we are always trying to put the full patient together when we try to choose the best medication for our patients.
Despite all the thought that goes into picking a medication, we're often left discussing with a patient, "Okay, this is the drug that I would choose next for you because of the following reasons…. But in the end we might not get that drug." Because very often we'll come up with a plan and say, "I really want to prescribe this one medication, medication B, but it might be that insurance companies make us first choose medication A or medication C."
So, we can have a theoretical conversation in the office, but it's not really until we submit that information to the insurance company, and then get information back that we can actually find out what drugs we actually have available to us. More bedside transparency would be so amazing and key in the office setting to really expedite and help improve patient care. If I know what's on formulary for a patient, I could probably work within that formulary to try to pick the right medication for them. Or, if there's a medication that's not on formulary, then we know that and we can reach out directly to the insurance company right from the get-go to say why none of the formulary medications will work and why we need a different drug that's off formulary for a patient without all the back and forth. While I understand that step therapy processes have been put in place in an attempt to help bend the cost curve, we have a long way to go to improve this process. There’s so much that can and needs to be done to make this process both efficient, effective, and most importantly, transparent for both patient and provider.
Randy:
Q. I would have to think that some of these delays or even denials and the kind of roadblocks to accessing medicines for your patients could result in some real damage to them -- to their quality of life—experiencing symptoms that might otherwise not be so dramatic. Or potentially, for some patients, they risk lifelong damage by not being able to be on a medicine that really is best suited for them.
Dr. LaChance:
A. Absolutely. Again, using my patients with psoriasis and psoriatic arthritis as examples, some of the arthritis associated with psoriasis can result in permanent damage to patients' joints when not treated appropriately. So, whenever you're not on a medication that is fully treating your joints, there is the potential for more damage to some of those joints that you're just not going to be able to repair, even if you eventually get on the right medication down the line. Additionally, for patients with severe joint disease, every day that their disease is not well controlled can mean another day of intense pain affecting their quality of life.
For instance, I have a patient who has a rare form of blood cancer. So, because of that, we have to be really careful about what we use to target her immune system, and the treatment options for her are very limited. For her, and for many of my patients, we started with a pill that could work for both her skin and her joints and is one of our least expensive psoriasis medications. Unfortunately, this medication did not work for her—despite being on this for a number of months—she still had severe skin disease with significant itch and severe joint disease causing her to have significant pain and stiffness in her joints. Because the first medication we used did not work for her, we then changed to a higher cost medication that was also very targeted—meaning it did not significantly lower her immune system. This medication didn't put her at increased risk for her cancer worsening, and she did fantastically on this new medication. But then she switched her insurance plan, and she was forced to go back to the original medication and “fail” this less expensive medication again.
Despite the fact that I went back to the insurance company to say—"Well, we've already done that for this patient, and it did not work for her.” And they said, "Well, not with us. We haven't seen her fail it yet on our insurance plan." This meant putting her back on a medication we knew would not work for her. This is just terrible medicine. During this time her skin was uncontrolled, she had terrible itch and trouble sleeping, and her joints flared all over again. Because of her type of joint disease, during this time, each day of uncontrolled disease meant irreversible damage was being done that could not be undone. Because of this, when we can’t get patients on medications they need, it can have a profound impact, both in real time, but also in the long term as well.
Randy:
Q. That's got to be heartbreaking to the clinician and to the patient and their families. It’s one thing if you know that you have exhausted all options or that new medication or treatment hasn't quite come yet for that particular condition. But when you know there are treatments that could be better for someone and they're just out of reach by virtue of these “one size fits all” rules and practices, that's got to be challenging.
Dr. LaChance:
A. Yes, it is.
Randy:
Q. It sounds like this requires on the job training. In medical school, I expect that you were primarily focused on the pathology of a patient, their symptoms, and how conditions present themselves and what you can do to intervene. So, when it comes to navigating the healthcare system and the many rules that may or may not actually help you do your job with your patients, is that just something that you learn on the job?
Dr. LaChance:
A. It's absolutely on the job training. Even sometimes in your residency program, you are a little bit blind to it because you might be rotating from one area to the next and not know what happened down the line when the medication eventually gets approved or not for a patient. And so, when you come on staff and you are the primary attending and you're seeing a patient in a longitudinal setting over time, you really understand how much this impacts each individual patient. It becomes part of your life as a physician in terms of trying to fight for different therapeutics for patients that are needed, as well as imaging that's needed for patients, and the ability to see us in the clinical setting for certain patients with narrow provider networks. There’s so many different ways as physicians that we have to communicate with insurance companies that you're just kind of blinded to until you take on that role as an attending.
Randy:
Q. Complicating things further, because there's a lot of stress involved in trying to navigate that system when you're not feeling well or when a particular regimen is not necessarily getting the results that you need, the COVID-19 pandemic has resulted in more healthcare challenges, worries, and anxieties. How do you take precautions if you are part of that at-risk group with underlying conditions like autoimmune disease? And how disruptive is it? What are you seeing in your practice? And how do you see that affecting you and your colleagues as clinicians, but then also your patients themselves?
Dr. LaChance:
A. I don't think anyone can underscore enough how profound of an impact this disease is having on all humanity, not only providers and patients, but really all people and our world as a whole. I think throughout our entire community—everyone's lives are feeling turned upside down. So naturally, this is having a major impact on each and every one of my patients and the overall patient-provider relationship. We’re really having to re-evaluate how we provide care and what defines the “best care” for our patients in these uncertain times. We’re having to keep patients out of the hospital setting as much as possible to adhere to social distancing guidelines. This means minimizing tests, work up, and in-person care as much as possible. Additionally, there are so many access issues concerning whether or not patients are keeping their job and are able to retain insurance coverage and whether patients are getting paid enough to afford their medications and their copays in the face of salary cuts or if they're furloughed or laid off and going unpaid.
Patients are also experiencing changes to their disease status and flares of their underlying disease. Autoimmune diseases can certainly flare during times of stress. I think everyone is feeling a rise in their stress levels, even if they're otherwise healthy and able to stay home, there's a lot of stress associated with this disease. That’s having a major impact on patients—ranging from flaring autoimmune disease to how people are feeling they are able to cope with disease flares—particularly when they are not able to see their providers in the way they are normally able to.
Finally, there's a profound sense of fear and concern particularly with our autoimmune patients about how their disease or their treatment regimen may have an impact on their risk of developing COVID-19, and what that means in terms of their day to day life, their ability to see their loved ones, whether or not they should or can even go to the grocery store. Should they continue medication? Should they stop taking their current medication? Should we try that new medication because their disease is flaring, but they don't know how they feel about starting a new medication in this environment. So, I think really for every person, the pandemic is having a profound impact on their life. And for our patients with chronic disease, and particularly who are immunosuppressed, even more so.
Despite this, although COVID has placed an incredible strain on our patients and on the healthcare system as a whole, we've also seen an incredible sense of community come out of this. In connecting with patients and other providers—everyone is feeling that we are in this fight together, and we are all committed to doing the best we can to move forward, protect one another, and come together, in these difficult times. For example, right now I am mostly seeing my patients virtually and even though this is not the same as in person, my patients have all be so incredibly grateful and gracious for this new form of care. In seeing patients in this way—being able to reach out to patients in their homes—providing care for them remotely and occasionally meeting their pets and having them meet mine—there is a sense of humanism and beauty in being able to provide care in this way during an otherwise incredibly difficulty time for all.
Randy:
Q. Your words are really helpful, informative, and also comforting. Obviously for clinicians, you're in environments where people are coming for treatment and testing. There's risk associated with that. Hopefully, the measures that we can put in place to protect people from contagion are effective and universally available. But in some ways, we're scrambling right now as a country. I think we're certainly learning some things. I know, even in the case of hydroxychloroquine and other kinds of medicines that have been traditionally available to people with autoimmune disease, there's concerns about shortages.
Dr. LaChance:
A. Absolutely. The drug shortages are a big issue and considerable concern, both in the chloroquine and hydroxychloroquine space, as well as some of our other autoimmune medications. And we may start to see that creep into other therapeutics as well, both in terms of medications that are used as either experimental treatments for coronavirus or medications that require importation of certain active ingredients.
I think as this disease continues to have a major impact on the economy and importation, we may see more of this. Certainly, particularly at certain points over the past few months, for our autoimmune patients, the chloroquine and hydroxychloroquine concerns about drug shortages have been a major source of stress for some of our patients.
Randy:
Q. You've shared so many impressive strategies for navigating the utilization management barriers that you see every day that affect your patients, for being alert to ways in which the system can be better even when challenged by the pandemic. What can AARDA and a program like Let My Doctors Decide do to try to get in front of some of these challenges that would help you and your patients?
Dr. LaChance:
A. Right now, certainly all of us are really focused on the COVID-19 pandemic. And so, I think all advocacy efforts are targeted towards how do we advocate for the health and safety of patients, our providers, and our population while this pandemic is going on. Several issues that I see as major advocacy priorities to rally around at this point include:
Increased capacity for testing and increased data around testing. The more we understand about disease numbers and transmission, including what patient populations and demographic groups are most impacted by this disease, the more we will be able to devise strategies to mitigate spread.
Increased access to PPE for our healthcare workers and all front-line workers. As the country begins to open up more and we start seeing more patients in person, ongoing access to PPE will be crucial for the health and safety of our patients and providers both.
Ensuring increased access to telehealth services while the US continues to battle COVID in the weeks, months, and years ahead. While we’ve seen a sudden expansion of coverage for telehealth services during local and national states of emergency, greater adoption of telehealth pre- COVID was really held up by a lack of telehealth coverage by insurers. While our country continues to battle COVID and come up with strategies for safe re-openings, continuing to demand telehealth coverage for our autoimmune patient population will be imperative to ensure appropriate and safe continued access to care. Now, tomorrow, next week, next month, and next year. This is crucial.
Increased transparency about pharmaceutical pipelines and potential for drug shortages. The HCQ/CQ pipeline seems to be holding steady for now. However, we will need to keep a finger on the pulse surrounding what is happening with pharmaceutical availability for our patients and be ready to act to find strategies to ensure continued access for patients should shortages occur.
Increased need to focus on health equity and addressing health disparities that are arising and becoming exacerbated as a result of this disease.
And as always, we need to continue to push to find ways to make step therapy more streamlined, transparent, and efficient. We need to decrease prior authorization burdens for providers so we can be sure to get patients the medications and care they need. We need to continue to fight against surprise billing, now more than ever, so patients are not left with bills they cannot afford during such difficult and tumultuous times. The list goes on but now more than ever, we need to band together to ensure our patients and providers have a voice in advocacy to help shape policies to come—both throughout the COVID crisis and as we rebuild afterwards.
Randy:
That's a great call to action for all of us. Your last point really resonates with AARDA and Let My Doctors Decide, and that is to always start with the patient, in consultation with their physician, to chart a smarter way for patients to navigate their health and to achieve the best possible outcomes. That way, they are empowered to fully participate in society, in work, in raising a family, and being active in the community—a very worthwhile investment.
Thank you so much for everything that you are doing on behalf of your patients and within the system to raise awareness and offer solutions that we can all promote for better health care and outcomes.