Pandemic-related unemployment impacts transplant in the US

Abstract

This month’s installment of “The AJT Report” discusses how COVID-19 pandemic-related unemployment is having a uniquely adverse impact on the transplant community in the US. We also report on England’s new—and game-changing—organ donation law.

Rising joblessness, an employment-linked healthcare system is a dangerous combination for the transplant community

At this moment, the COVID-19 pandemic is leaving crashed economies and record amounts of unemployment in its wake. It is likely that individuals who have lost their jobs will remain unemployed for the foreseeable future, especially those whose livelihood lies in tourism, recreation and retail clothing. In many countries around the world, however, the unemployed continue to receive necessary medical care, unrelated to the pandemic, but this is not necessarily the case in the US, where healthcare is inextricably tied to employment. This makes for a dangerous set of circumstances for transplant in the US.

In Italy, public funds have paid for the country’s healthcare system, regardless of employment status, since 1978. “The Italian healthcare system is based on universal coverage and is provided to all citizens and residents in the national territory,” says Giuseppe Remuzzi, MD, director of the Mario Negri Institute for Pharmacological Research in Milan. “Hospitalization and surgery interventions, such as transplant, are completely free of charge for everyone regardless of their income.”

Nicholas Torpey, MBBS, PhD, clinical director of transplant services at Cambridge University Hospitals in the UK, once lived and worked in the US. Asked to compare the two healthcare systems, he calls them “radically different.” The UK has the government-funded National Health Service (NHS), a universal system that covers the population’s healthcare, including all organ transplantation. The question of affordability for the patient is never a factor because wealth or income do not influence organ allocation in the UK, so all patients who qualify for care in the NHS are eligible for transplant.

Employment-Based Health Insurance

In the US, not only is transplant care not free, it can be virtually unreachable for patients who lose their jobs and thus, their healthcare. Rachel E. Patzer, PhD, MPH, director of the Transplant Health Services and Outcomes Research Program at Emory University School of Medicine in Atlanta, estimates that approximately half of transplant patients have employment-based health insurance. It is true that many individuals in the US who lose employment and health insurance will take advantage of the Consolidated Omnibus Budget Reconciliation Act (COBRA) health insurance program that allows them and their dependents to continue receiving the benefits of health insurance coverage after they have lost their job. However, because the newly unemployed individual must now pay the entire cost of the insurance—including the portion that had previously been paid for by the employer—the monthly COBRA payment is often prohibitively high. Moreover, COBRA is a temporary option, usually available for 18 months, but also for up to 36 months, depending on certain qualifying events.

Key Points.

• •The COVID-19 pandemic has left many people unemployed and, in the US, that means many are without health insurance.
• •Lack of insurance may affect the ability of organs to be equitably distributed in the US.
• •Lack of insurance and income may mean that patients cannot progress through the pretransplant visits or pay for critical immunosuppressive medication posttransplant.
• •The US healthcare system relies on nonprofits to compensate for inequities.

Currently, individuals who have lost health insurance due to job loss during the pandemic may qualify for a "special enrollment" period on the US federal exchange and in some cases, the exchange will offer a less expensive health insurance option. However, the process of transitioning off employer-based insurance can be complicated.

In the US, patients with renal disease do qualify for financial support from the federal government in the form of the Medicare End-Stage Renal Disease Program, and this coverage will pay for a kidney transplant. Under Medicare, however, patients are still responsible for copays, which could comprise as much as 20% of the entire cost. Patients who lack a financial safety net may not be able to pay for their Medicare premiums, let alone their transplant and medication copays. They may also face challenges when the program’s coverage ends at 3 years posttransplant.

The Challenge of Equitability

The US Department of Health and Human Services Organ Procurement and Transplantation Network Final Rule has established policies for the equitable allocation of deceased donor organs. However, the negative effects of the pandemic may challenge that equitable distribution.

Although the impact of pandemic-related unemployment on transplant in the US has not yet been studied, Dr. Patzer suspects that many patients in need of a transplant are being challenged in two key areas. First, unemployment may halt the patient’s progress through pretransplant visits because such individuals have difficulty paying costs related to traveling to appointments, or the dental care that may be needed to get on the list. “On the pre-side, I think those patients, from our perspective, get lost,” says Celena O’Connell, LMSW, manager of transplant social services at Emory.

On the posttransplant side, these patients may have difficulty paying for costly immunosuppressive medications. If transplant recipients lose their insurance coverage and cannot afford medication even for a few months, they can experience graft failure. Thus, patients who lose their jobs and also lose their insurance may also lose their grafts. Even prior to the pandemic, cost-related nonadherence was shown to be a significant source of graft loss and patient death.^1,2 “You have to have money to buy those expensive drugs,” confirms Dr. Patzer.

For patients younger than 65, Medicare coverage for transplant stops after 3 years. Patients of lower socioeconomic status thus have poorer access to posttransplant care and immunosuppressive drugs after this period, and the result has been drastically worse outcomes.³ “This is not an issue that we haven’t thought about. It is just that there are so many more who are going to fall into this hole of unemployment,” explains Dr. Patzer. As other countries weather the storm of unemployment, it will be interesting to compare health systems and health outcomes between vastly different systems.

Nonprofits Fill the Gap

The US system’s healthcare provision relies on financial incentive, adding layers of complexity to transplantation and transplantation outcomes. An editorial in the American Journal of Transplantation notes that “… the lack of a constant health insurance standard makes copay costs prohibitive for most patients with kidney disease and straps hospitals with a growing burden of self-pay and charity care that forces decisions to be made based upon payor mix rather than disease burden or case mix.”⁴

Which policies can best address this growing burden? For now, solutions are regional, as transplant centers and states vary in their ability to meet the needs of communities. Georgia, for example, has a medication access program for its residents that generates a list of medications required by patients and connects patients to pharmaceutical companies and patient assistance programs.

Beyond that, the US system relies on nonprofits to compensate for increasing inequities. Ms. O’Connell explains that patients in Georgia are fortunate to have the Georgia Transplant Foundation (GTF), an organization that she sees as unique for its power and comprehensive approach. The GTF pays most patient expenses, from premiums and copays to housing and emergency assistance. In a sense, the GTF plays the role currently performed by the governments of Italy, the UK, and elsewhere. Money for the organization is raised via large-scale galas, a major golf tournament and other vigorous fundraising efforts.

The growing problem of lack of access to affordable health insurance in the US certainly predates the pandemic, and the current crisis seems to be fueling it. As more individuals in the US enter the ranks of the uninsured and/or lower socioeconomic status, some in the transplant community feel that transplantation will be compromised.

England Passes Opt-Out Law

As the world focused on the COVID-19 pandemic, something amazing happened in England: The country changed its organ donation law to an “opt-out” system. Now, all adults in England are considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate or are in an excluded group. Such groups include people who lack the mental capacity to understand the new arrangements and take the necessary action, and visitors to England. Organ procurement professionals will continue to approach families for discussion and continue to respect individual faith, beliefs and culture.

The change in England has received little media coverage, despite its considerable public as well as cross-parliamentary support. Many European countries, such as Italy, Germany and Poland, have enacted opt-out laws. Wales implemented its opt-out system for organ donation in 2015, and an opt-out system will go into effect in Scotland in 2021. Nicholas Torpey, MBBS, PhD, Clinical Director of Transplant Services at Cambridge University Hospitals in the UK, estimates that the change in law could lead to an additional 100 donors each year in England for the next four years, up from the current 1,600 deceased donors per year. The anticipated increase in donors has heightened the interest of the National Health Service in organ preservation and assessment.