By Danielle Buchanan and Katherine McVay
This year marks an unprecedented era in healthcare accessibility and availability that is currently affecting the lives of HD patients and families. As a result of the coronavirus disease 19 epidemic and the social isolation that has followed, HD patients are faced with new barriers to care. While there had been a trend towards telemedicine and other technologically savvy forms of healthcare delivery prior to the pandemic, COVID-19 has made remote medicine a necessary recourse for care, as opposed to a luxury.
The clinical research team at Vanderbilt’s HDSA Center of Excellence recently conducted a study during the “stay-at-home” orders between April and May 2020. The team contacted HD patients and either spoke with the patient or their caregiver over the phone to answer open-ended questions about the ways in which the pandemic has affected them. The questions addressed issues such as economic hardship, their current access to medication, and their current utilization of remote healthcare such as telemedicine appointments and online support groups.
The results from this study reveal some of the specific weaknesses within the current healthcare infrastructure. These can be addressed to create improvements in HD clinical care from the start of diagnosis to the continued management of symptoms and monitoring of both mental and physical health as the disease progresses.
Self-isolation during the pandemic can create new anxieties for the families of HD patients. In our study, 20 percent of the caregivers were parents of the HD patient while around 10 percent were offspring. For HD caregivers, the issues that they face during this time are multifaceted. Family units in self-isolation nationally are dealing with the stress of a global pandemic, the economic and mental burden of Unemployment, and the loss of a daily routine. All of these affect mental health and wellbeing. Family members with HD are dealing with all these issues while also managing care, with less access to important healthcare services.
In the wake of these new issues, it is important for individuals in the caregiving role to have access to helpful resources. It is essential for providers during a pandemic to be consistent and thorough in providing information for families dealing with HD during this time. Clinical teams should be addressing the well-being of the entire family unit. As an example, one family followed at the Vanderbilt’s HDSA Center of Excellence has their own small business screen printing t-shirts, and relied on orders for large group events and family gatherings. With the pandemic, this patient and their entire family lost the majority of their business and continue to suffer from the loss of income. This lost income results in increased stress for the patient and caregiver, and may even impair their ability to receive valuable resources needed for their care.
Around 50 percent of the respondents in this study indicated an interest in a virtual support group, which would be a very productive way to engage with these problems and build a strong sense of togetherness. Some families could potentially benefit from the Family and Medical Leave Act, which provides unpaid leave to provide care for their ailing family member. HD families could also benefit from support groups in which they can connect with other families regarding problems they face caring for a loved one with HD, dealing with a recent diagnosis or the genetic status of an at-risk family member during the global pandemic.
While telehealth offers a quick solution to the lack of face-to-face clinical care during the pandemic, around 25 percent of respondents indicated that they were unable to participate in regular telemedicine appointments. The survey did not reveal the reasons for this unwillingness, but anecdotally, we gleaned that they feel unable to access telehealth calls for either technological of financial reasons, or are generally disinterested in virtual engagement. This reveals that a healthcare system based entirely on telehealth could neglect one fourth of our HD patient population.
Telemedicine requires technology such as smart phones and computers that not every family can access. For those that are not as tech savvy, it can be difficult to navigate the telehealth platforms that are currently used. Last, many patients and families might not consider communication via the internet a viable alternative to in-person communication and care.
All of these reasons and more must be addressed with the patient and their family in order to provide proper clinical care to the HD population. It is important for clinical teams to work with families that are not interested in traditional telehealth platforms to ensure no serious decline in care during the pandemic.
Financial barriers affect more than just accessibility to telemedicine calls and appointments. Of the total survey respondents, 25 percent were either uninsured or on Medicaid. Beyond the lower likelihood of these patients utilizing telemedicine portals, this population is at an even greater risk of not obtaining treatment for any worsening HD symptoms during this pandemic. This risk is the result of delay in care, inability to pay for visits or medications, and a general lack of resources, all of which are further exacerbated by the pandemic.
The delay of care for the uninsured and Medicaid-covered HD population is also worsened by the Medicaid waiting period between diagnosis and coverage — currently, 24 months. The Huntington’s Disease Parity Act of 2019 is a bill that would waive this waiting period for HD patients. If passed, HD patients could receive coverage earlier in their diagnosis, which is critical in managing early symptoms and the progression of Huntington’s disease.
During this time, HD families with adequate resources still struggle to manage care. While virtual solutions like telemedicine can help alleviate many barriers, HD families with greater hardship and financial strain from the pandemic are not as likely to benefit from these short-term solutions. It is vital that clinical teams address these populations and determine the best ways to overcome the barriers the pandemic has created. We need to acknowledge the weaknesses in our healthcare system and advocate for the HDPA bill and others that would help level the playing field for HD families. Our study underlines the need for clinical teams to be particularly flexible, resourceful and, as always, empathetic in addressing the wellbeing of the entire HD family units as they navigate the difficulties of HD in a global pandemic.