Dr. Ponni V. Perumalswami is an Associate Professor of Internal Medicine in the Division of Gastroenterology and Hepatology at the University of Michigan; Ann Arbor VA Healthcare System. Dr. Perumalswami's areas of clinical interest include cirrhosis, acute/chronic liver diseases and liver transplantation. Her research program focuses on community outreach for hepatitis B and C screening and linking patients to care.
Q: For patients with liver disease who live in underserved and vulnerable communities, what barriers to that care are more prominent or at the primary systemic-level?
Dr. Perumalswami: I think a major barrier has been our approach to thinking about these barriers, so I'm glad you are asking this question in terms of what the systemic-level barriers are rather than, for example, patient-level barriers. I'll use viral hepatitis as an example in terms of liver-disease care. I think for a very long time we've placed an unfair, onus on patients, leaving them to find their own care and to navigate existing system-level barriers such as language proficiency, health literacy, lack of insurance, and long distances to access specialists by themselves. This “do-it-yourself” approach has created a systemic-level barrier to finding specialists, and it remains a major problem. We would do a better job of improving access to care by re-thinking all barriers to care as system-and provider-level barriers rather than patient-level barriers because it is often the case that solutions that address systems barriers can address these issues.
Many specialists, like myself, are often geographically clustered at tertiary care and urban academic centers but the reality is that patients who are at risk for living with liver disease live all over, including rural areas, where fewer specialists practice. But advancements in treatments of certain liver diseases, such as hepatitis C virus (HCV), have made it possible for frontline community providers to treat patients. Expanding these patients' treatment options, in large part, is dependent on payer policy changes to allow treatment by non-specialists, reducing the cost of treatment and giving frontline workers the support they need so that they are more confident to offer treatment while differentiating the occasional patient who may need referral to a specialist.
Cost is also a systemic-level barrier for our underserved patients with liver disease and comes in many forms. Barriers related to cost include lack or type of insurance, traveling distances which also entails a cost for time (i.e. loss of wages, caregiver support), and cost of treatments. There are certain restrictions on HCV treatments that designate who can administer them and at what point in disease progression the therapy be introduced. These restrictions have been arbitrarily set by payers for treatments like direct-acting antivirals (DAA) and unfortunately dictate "when they can be obtained" and "who can prescribe them." Instead, we should spend time and effort to determine how we can have more providers practicing in different spaces, who might be equipped and motivated to provide treatment, and do it safely and easily.
Another barrier I will mention is the lack of integrated care for patients with certain liver diseases within healthcare systems. Notable examples include integrated care for those with alcohol-associated liver disease and viral hepatitis, who often have co-occurring mental health issues and substance use, addiction, or opioid use disorders. We need to think through how we can get integrated treatment and care to these patients, instead of making them come to us as individual specialists. By integrating medical care into behavioral health practices or other treatment settings, and perhaps by considering nontraditional treatment modalities, we can overcome barriers to care that are all too often siloed.
The last thing that I will mention with regards to patient-level barriers is that liver diseases and their care by providers has been very stigmatized, particularly for patients with underlying mental health and/or addiction disorders. These patients do not always feel comfortable coming to see clinicians in their practices so we must recognize that our offices may be stigmatized places for some patients with liver disease. Because of this, it is vital to think about how we can integrate care into trusted spaces for patient populations who might be at risk or are living with liver disease.
Q: What aspects of these barriers have you focused on to improve screening and links to care in communities at risk?
Dr. Perumalswami: A lot of my work is focused on patients in populations who are at risk for viral hepatitis and on screening them, educating them, and linking them to care in their communities. The challenge in successfully treating patients with a liver disease is that most liver diseases remain silent until they've progressed to a very advanced stage. Certain populations are at a higher risk for contracting these diseases compared to others. For example, with hepatitis B virus, we know that foreign-born populations have a higher infection rate, and how and when they seek care might be very different in terms of being symptom-driven versus preventive care as a result of cultural factors around health seeking behaviors. Our team has attempted to take a more proactive approach; first, to understand who might be at risk, and second, to try to bring screening to trusted places where patients can easily access care. We have found this proactive approach to be very successful in terms of identifying people who are not yet diagnosed with liver disease and then linking them into care.
The first step is knowing which populations you want to target with respect to individual types of liver disease, then working with community partners to bring screening out into the community. Obviously, the challenging part is getting people linked into care. As stated previously, many liver diseases in their earlier stages stay silent and manifest without symptoms, thus why it is vital to offer at-risk patients testing or screening.
The next step is to raise patient awareness and provide education as to why it is important to seek care; to get a thorough evaluation in terms of the extent of the liver disease and how to best manage and treat it, long term. For example, we have found that care coordination works very well with patients living with HCV. For patients with hepatitis B, we have found that culturally informed patient navigation services are very helpful, so we work with peers in the community who speak the same language and who come from the same communities as the patients identified as at-risk. This combined strategy of testing and then linking to care has been very successful.
I will say an important part of the care-coordination piece is addressing the competing priorities that patients have in their lives. For example, if they need housing, we refer them to housing services; if they have food insecurities, we try to address the need. Once you address their basic determinants of health, you have established a basis for trust while helping patients contend with important competing priorities. This way, your team has enabled potential patients to prioritize and engage in health care.
Q: How have you integrated HCV treatment into harm reduction and opioid use disorder settings?
Dr. Perumalswami: I am fortunate to be involved with a program here in Michigan whose goal is to increase HCV treatment through an open access, HCV consultation program through the Michigan Opioid Collaborative. The premise is to find motivated, interested providers who want to learn how to offer HCV treatment to patients in their communities; the majority of these providers are in rural parts of Michigan. In this setting, we are working with frontline medical personnel in the community, many of whom are either addiction providers or are offering opioid use disorder treatment, and who are also seeing HCV patients. We have set up an open-case consulting program where providers can submit cases for review with guidance from hepatologists. Attendance is optional and we meet for an hour, every other week and we talk through cases in more detail as a group. The result is that the providers have reported that they feel less isolated doing this as a team, having a place to discuss cases and work through practical challenges that can arise with this patient base. While HCV treatment advances have made great strides, many providers want reassurance or guidance in terms how to implement these programs so as a group, we walk through a few cases, demonstrate how to check for drug-drug interactions and how to perform fibrosis assessments. After these providers go through this training, they become more comfortable giving treatment on their own.
The second project, which I have also been fortunate to be involved in, is led by my colleague Dr. Jeffrey Weiss at Mount Sinai Hospital and is located at a syringe exchange program in a Brooklyn, New York. Here, patients attend receive in-person and/or telemedicine-based HCV treatment, which is a new model of care for us. While it has produced a different set of challenges in terms of engaging and bringing treatment to patients in a new space, it has been a great way to meet our objectives of helping patients to be treated where they are comfortable accessing care and services.
Q: Has the pandemic created any new challenges in treating at risk or special populations?
Dr. Perumalswami: The pandemic presented many new challenges. The primary impact that COVID-19 has had on our patients has been with the disruption in care; particularly for those patients who already found it challenging to seek and receive care. For patients who benefitted from following a routine, other pandemic-related challenges were the restrictions placed on our practices, and the reduced hours patients had to contend with access services and treatments at places such as syringe exchange programs or methadone programs.
Many of our patients have expressed feeling isolated as they are not able to get the same type of support that they were previously receiving. The decreases in viral hepatitis outreach, in screening in the community, and in practices resulted in a decrease in diagnosis and treatment.
We have also heard numerous discussions with regards to better reimbursements for phone call and telehealth sessions, but we must recognize that those things are not accessible to all patients. Many of our most vulnerable populations, do not have working phones, stable housing, or smart devices to access telehealth, so while there have been technological advances that can provide access to care and better reimbursement procedures, there are still many limitations that our patients are facing.
(AGA applauds researchers who are working to raise our awareness of health disparities in digestive diseases. AGA is committed to addressing this important societal issue head on. Learn more about AGA’s commitment through the AGA Equity Project).
