Navigating a Rare Disease in a Pandemic
The COVID-19 pandemic has affected everyone, but those already living with a rare disease have unique challenges. With a compromised immune system, they face not only additional stress from catching the virus, but other struggles revolving around their own care as well.
Issues of adherence, isolation, reduced care, decreased quality of life, and more have made this time especially hard. Rare disease patients require the same level of care that they did before the pandemic, they now simply have a harder time achieving it. With reduced hours, closed offices, and increased restrictions, just scheduling appointments can be difficult.
Another huge issue for patients and researchers alike is recruitment for clinical trials.
Clinical Trials
Patient enrollment in clinical trials has significantly decreased during this time. Many drug developers have looked for ways to utilize technology to ease the burden of participation.
While COVID-19 trials have soared, recruitment for all other investigations has waned drastically. In response, the FDA in March published guidance on how to manage clinical trials during this time.
When thinking about these investigations, it is important to consider the patient’s needs first. Tools may include-
- Home-based clinical services
- Remote monitoring
- Direct-to-patient support
- Assessments via phone
- Virtual visits
- Additional safety monitoring for participants who can no longer attend a trial site or access a product
Financial solutions must also be considered as clinical trials are expensive. Solutions include-
- Flat fee for services
- Single source distribution
- National access
- Quick and accurate reimbursement
This pandemic won’t last forever, but it’s important for us to not pause rare disease research in the meantime. Additionally, it is essential that we consider new patient needs and challenges and navigate ways to ease their burdens in this new world.
You can read more about this issue and ways to improve care during COVID-19 here.
