Can the USA’s Fragmented Healthcare System Become More Patient-Centric?


US healthcare is often seen as a fragmented system of contrasts. The country has the highest healthcare expenditures as a percentage of GDP and the highest drug prices in the OECD, supporting the largest and most innovative healthcare market globally. However, it also has shockingly subpar healthcare outcomes compared to other developed markets in terms of highest rates of avoidable deaths and lowest life expectancy. While pharmaceutical drug pricing has typically been the preferred scapegoat for political actors and other stakeholders, the bigger picture is far more nuanced.


Dan Leonard, president & CEO of the National Pharmaceutical Council (NPC), underlines, “there are large gaps between data, public discourse and government reactions. Looking at data on drug spending, in 2019 the growth was two percent; in 2018 it was 2.5 percent; in 2017 it was less than 1.5 percent. This makes 2020 the fourth year in a row where drug spending is below both healthcare and general inflation.” He elaborates, “this is significantly less and growing at a slower rate than what we spend in other health sectors, like hospital care and providers. Yet when you listen to political arguments, some view skyrocketing drug prices as the sole reason for all of our healthcare cost concerns.”



A lot of different levers need to be pulled to effect change

Dan Leonard, National Pharmaceutical Council


The US healthcare system, unlike the common model in Europe, is not a universally accessible single-payer system but rather a patchwork of publicly and privately funded programs catering to different populations with a multitude of payers, intermediaries and access points for patients. Only 30 percent of the population is covered by the three publicly funded insurance programs: Medicare, Medicaid, and the Children’s Health Insurance. The majority of the remaining 70 percent are covered by private insurance plans sponsored by companies and employers, with around 10-15 percent of Americans – between 30 to 45 million people – remaining uninsured. The situation is further complicated by the many insurance providers restricting how and from which healthcare institutions patients can access care and be reimbursed, along with other additional details like co-payments and complicated primary care physician referral processes. This is part of the reason Leonard indicates, “there is no question that we have a unique healthcare system in the United States.”


As a result of the multitude of actors and players, he explains, “a lot of different levers need to be pulled to effect change. We need to work together with payers and industry while keeping patients at the centre of the conversation.” At NPC, he asserts, “we’re proud of our efforts to spark a broader, national dialogue on healthcare spending issues. The focus is on digging deeper to understand what is driving health spending and finding solutions, without finger-pointing at one healthcare sector over another.”


For this reason, Leonard adds, “last year we created the ‘Going Below The Surface’ (GBTS) Forum, a coalition of more than 20 stakeholders from across the healthcare sector, to evaluate, through honest conversations, the underlying factors driving healthcare spending and how we can address those challenges.” He expands, “we are working on a roadmap to help healthcare decision-makers develop programs to reduce low-value care – treatments or services that don’t provide value to patients and could even harm them – within their organizations.”


Marc Boutin, JD, CEO of the National Health Council (NHC), concurs on the critical importance of multi-stakeholder collaboration. He introduces, the NHC was created 100 years ago by patient organizations for patient organizations. The NHC focuses on systemic issues such as access to care and driving patient-centred innovation. To truly have an impact on these issues, we need to understand the different perspectives of all stakeholders.” For this reason, the NHC is composed of large and small patient associations as well as representatives across the entire health spectrum, including biopharma and generic companies, medical devices and diagnostics players, payers, academics as well as caregiver communities.


He stresses, “both patient groups and industry share a common interest in driving high-quality innovation and ensuring meaningful access to care. While all members may not always align on all topics, like drug pricing, for example, we must be able to openly disagree in the same way that we cooperate on mutual issues of interest without inappropriate influence.” At the same time, he cautions, “in the 1980s, there were examples of industry creating organizations that looked like patient groups. While this is not nearly as prevalent today, it still occasionally happens. This is a major issue as it undermines the credibility of legitimate patient organizations and ultimately their ability to serve patients. It is critical that we distinguish between genuine patient organizations and what are called ‘astroturf’ [as opposed to genuine grassroots] groups.”



Both patient groups and industry share a common interest in driving high-quality innovation and ensuring meaningful access to care

Marc Boutin, National Health Council


With the cacophony of voices clamouring for attention in the US healthcare sector, all of which represent different stakeholder interests that typically have to be accommodated by the overall system to some extent, it can often be difficult to see the forest for the trees. But as Boutin reiterates, at the end of the day “patients will have to drive this transformation,” adding that it is precisely “the complexity of the US health ecosystem [that] led the patient community to push for the creation of the Patient-Focused Drug Development initiative (PFDD).” Established by the FDA in 2012, the intention of PFDD was to obtain the patient perspective on specific diseases and available treatments in a more systematic way. Boutin shares, “this prompted a cultural shift and got stakeholders thinking about what it means to customize health and understand outcomes that matter to patients. Now we are supporting multi-stakeholder development of core outcome sets to identify the most important outcomes that should be included in the development of all new medicines. [This has] the potential to create efficiency in medical product R&D, improve our comparative effectiveness data, and support a more nuanced value-based pricing system.”


The clear takeaway, in Boutin’s words, is: “there are a lot of moving parts when it comes to identifying who the right players are to make this change, but it started with shifting the culture to engage patients.” It is undeniable that the political landscape in the US has become more and more profoundly bifurcated the past decade, with nearly 90 percent of Americans describing conflicts between Democrats and Republicans as “strong” or “very strong”, according to the Pew Research Centre. While healthcare is often a hot-button political issue, there is no place for partisanship in the critical discussions surrounding healthcare. The drive for transformative change in the US healthcare landscape must be a collaborative one founded on putting patients at the centre of all efforts.

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