As of 11 June 2020, there have been over two million confirmed cases of COVID-19 in the US and over 115,000 deaths, with the US having occupied the leading spot globally in terms of confirmed cases since late-March. While the pandemic has wreaked havoc across the entire country, advocates of a particularly vulnerable group are trying to find ways to mitigate the negative impact as much as possible.
Peter L Saltonstall has been president and CEO of the National Organization for Rare Disorders (NORD) for the past 12 years, overseeing the organization’s advocacy efforts on behalf of patients with rare diseases. As he introduced, “we are unique in being the only major umbrella [patient advocacy] organization that has no industry presence on our board. Over the 37 years of our existence and progress, NORD has truly become a trusted voice of patients in the US.” At the moment, he revealed, “the COVID-19 situation has completely overtaken our operations. Through our Patient Assistance Network, we work with manufacturers and patients to provide assistance so that [patients] can access medications they otherwise would not be able to afford. Since the pandemic started, we have been inundated with calls – our call volume is up over 200 percent! People are calling because they are worried about keeping their jobs and medical insurance and being able to afford their medications.”
We currently have an administration that talks a lot about caring about patients but really has not put their money where their mouth is
To gain a clearer picture of the challenges faced by patients with rare diseases during this pandemic, NORD conducted the COVID-19 Community Survey Report in April, polling nearly 800 individuals, nearly three-quarters of which live with a rare disease, with the remaining quarter responding as a caregiver or family member. In our interview with him, Saltonstall contextualized, “over the past couple of years, we have really advocated strongly for the use of empirical data surrounding different topics, especially efficacy-related issues. Data is a powerful tool that allows us to tell the stories of patients with rare diseases better. It is about more than the emotional conversation; empirical data really helps change the conversation and makes you more relevant.”
Rather dismayingly, NORD found that 95 percent of rare diseases patients have been affected to some degree at a cost to their immediate and long-term health and well-being. For instance, 74 percent have had a medical appointment cancelled due to COVID-19. As NORD explained in their report, “this is significant, as many people with rare diseases spend months and even years trying to pinpoint a diagnosis or find therapeutic relief, via long-awaited visits with specialists, advance scheduling for testing procedures, travel to meet with medical experts, and participation in research and clinical trials.” Only two-thirds of those whose medical appointments had been cancelled were offered an alternative via telephone or video.
Globally, pharmaceutical supply chains have been strained by border closures and quarantine measures. This complicates the R&D and supply of any potential COVID-19 therapeutics or vaccines but it also affects the existing medicines taken by billions of people around the world. Little wonder that 69 percent of patients surveyed were concerned about medication and medical supply shortages. 18 percent have been unable to access medication for their rare diseases and 17 percent have had trouble procuring medical supplies and devices.
Exacerbating these treatment-related issues is the economic cost of the pandemic and its containment measures. As unemployment rises due to the impact of COVID-19, 29 percent of respondents have lost jobs, 11 percent of whom also lost access to health insurance with the change in job status. In addition, 40 percent of households are experiencing a loss of income.
As part of their response to the situation, NORD has developed the NORD COVID-19 Resource Center (www.rarediseases.org/covid-19/), offering resources to address concerns raised by survey respondents and to share real-time updates on actions NORD has taken in response to the pandemic.
With NORD’s tireless efforts to address and remedy the situation for the tens of millions patients with rare diseases across the country, Saltonstall is disappointed in the lacklustre performance of the US government in terms of resolving this health crisis – and others. He admonished, “in my personal opinion, we currently have an administration that talks a lot about caring about patients but really has not put their money where their mouth is. Hopefully, the US will wake up. We really have to become much more patient-focused and pay more attention to the burden of healthcare expenses on patients. The only way to address issues like drug prices and insurance is through a meaningful dialogue that brings all stakeholders within the ecosystem together.”
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