How QALYs Fuel Health Disparities

The utilization of Quality-Adjusted Life Years (QALYs) metrics to determine the cost-effectiveness of the development, delivery, and detriment of medications, operations, and other health interventions may result in unacceptable long-term impacts on people living with disabilities or chronic illnesses, including HIV, Rheumatoid Arthritis, and other long-term illnesses that are expensive to treat. QALYS are very likely fueling health disparities.

The QALY was developed in the 1970s as a way to measure “…the state of health of a person or a group of people in which the benefits, in terms of length of life, are adjusted to reflect a quality of life” (MacKillop & Sheard, 2018). One QALY equals one year in “perfect” health, and QALY scores range from 0.0 (dead) to 1.0 (perfect health), where the value of an intervention versus no intervention is evaluated and used to determine whether or not a treatment is cost-effective or “worth the money” in exchange for extended “perfect” life (Figure 1).

To boil this down to an easier explanation, “the QALY is the academic standard for measuring how well all different kinds of medical treatments lengthen and/or improve patients’ lives” (Institute for Clinical and Economic Review (ICER), 2025). QALYs have frequently been used by insurers, public payors, and governments around the world to determine whether or not medical treatments are cost-effective to cover for patients—often without any input from or consideration of the patients whose lives are impacted.

If the math behind QALYs seems obtuse, you’re not alone—one of the primary criticisms of the QALY is that the methodology behind determining how a QALY is measured is predicated upon a lot of assumptions that may or may not hold true across every community. Some recognized experts who have studied QALYs have expressed concern over their impact on health equity.

Matt Toresco, CEO of Archo Advocacy LLC and ELAVAY—two patient advocacy organizations—conducted research through ELEVAY of over 120 patient advocacy organizations on the effectiveness of QALYs, including knowledge of QALYs and their impacts. Their research found that just 22% of respondents considered themselves to be knowledgeable or well-versed on the subject, compared to 57% who responded having just a cursory understanding of QALYs or their impacts. Over a third of respondents (35%) had little to no knowledge of QALYs (Archo Advocacy, 2024).

According to Toresco: "QALYs, while intended to provide a standardized measure of health outcomes, often fall short in capturing the nuanced realities of diverse patient populations. The assumptions underlying QALYs can inadvertently perpetuate health inequities, particularly for marginalized communities. Our research at Archo Advocacy and ELAVAY highlights a significant gap in understanding and awareness of QALYs among patient advocacy groups, underscoring the need for more inclusive and equitable health assessment tools. Quite frankly, current tools leave the individual, the patient, out of the equation and can do more harm than good."

The primary issue is how we define “Perfect Health.” This requires developing a shared definition of “perfect health”—something that each country and set of researchers can define differently.

If we use the questions asked by the EuroQol’s EQ-5D-5L QOL system, a person is in perfect health if they report that, as of today, they:

• have no problems walking about;

• have no problems washing or dressing themselves;

• have no problems doing their usual activities (even if their usual activities are constrained);

• have no pain or discomfort, and;

• are not anxious or depressed (Sawhney, Dobes, & O’Charoen, 2023).

In 2024, PlusInc identified Ableism as a primary driver of the inequitable access to healthcare for people with disabilities. From the outset, we can identify ableism as a primary concern:

1. “Walking” presupposes that a person is able-bodied and automatically assesses someone who is incapable of walking or who needs assistance in walking (ie. a walker or cane) as being in “imperfect health.” This returns us to last year’s article that described medicalizing disability (the Medical Model of disability) essentially views a disability as a problem to be fixed (Hopkins, 2024). With this definition of “perfect health,” any treatment that does not “fix” a disabled person’s ability to walk without assistance will not be considered cost-effective.

2. The second measure—washing and dressing oneself—presents the same problem. This definition again presumes that anyone who needs assistance with performing these tasks is living in “imperfect health.”

Beyond concerns of ableism, QALY metrics further fail to consider how individuals experience pain, discomfort, anxiety, and depression. Moreover, they fail to consider day-to-day circumstances that may positively or negatively impact a respondent’s answers. If, for example, a person just received news that they were pregnant, whether or not they perceive that event to be a happy occasion could positively or negatively skew their responses to multiple questions.

This gets to bigger questions that plague both the QALY measurement, itself, and cost-effectiveness as a metric for determining the “worth” of a treatment:

1. What are the moral and ethical implications of measuring the “value” of a life?\

2. Who is anyone to determine whether or not one person’s life is more valuable than another’s based upon subjective “quality of life” measurements?

3. When drugs and surgeries are being developed, do we—as a society rather than a company—have a duty to the patient first or to financial considerations?

4. How do governments and society writ large value the lives of people with chronic, complex, or disabling health conditions, regardless of how “permanent” or “temporary” those health conditions may be?

These fundamental issues with how QALYs are measured make their use in cost-effectiveness calculations suspect, at best, and discriminatory, at worst.

Because chronic illnesses and rare diseases are more expensive to treat, both in the short and long term, medical interventions to treat them are frequently targeted as being “too expensive to be worth the cost.” This applies not only to medications to treat or prevent HIV, but to cancer therapies, inhalers, new diabetes treatments, and other illnesses from which people of color, people with lower incomes, and people living with disabilities are more likely to suffer.

Photo Source: iStock usage rights reserved

According to Amanda Boone, Co-Founder of Cystic Fibrosis United, ICER attempted to create a secondary or complementary metric, called the Equal Value of Life Years Gains (evLYG) in an attempt to address concerns about ableism.

The evLYG differs from the QALY only in that it attributes to all added lifetime gained from treatment the same “good” quality of life rating. This approach eliminates any hypothetical risk that treatments that extend life for patients with an underlying chronic condition or disability would be valued as producing less “health gain” than a treatment that extends life a similar amount for a condition without any underlying reduction in functional status or quality of life. As an example, using the evLYG as the measure of health gains from treatment, if a treatment adds a year of life for patients with a condition like muscular dystrophy, the treatment will receive the same evLYG “score” for that added life extension as would a different treatment that adds a year of life for a different condition with less functional limitations, such as hypertension (Morris, Jr. & Gabay, 2021).

This definition, pulled from a report commissioned by the Institute for Clinical and Economic Review, or ICER, to evaluate whether or not the use of QALYs and evLYGs violate the federal Americans with Disabilities Act (ADA), briefly explains the difference between a QALY metric and evLYGs.

“They are also not great for disabled, elderly, chronically ill, et cetera,” stated Boone.

This report drew considerable condemnation from many within the disability rights community. The Disability Rights and Education Defense Fund (DREDF), speaking of this evaluation of QALYs and evLYGs:

The evLVG differs from the QALY in that it only considers the quantity of life extension that a given drug or treatment will afford an individual, without discounting on the basis of utility weights – essentially, it provides for undiscounted life years. Use of the evLYG eliminates the risk of undervaluing life-extension for people with disabilities. However, this comes with an unacceptable price. The structure of the QALY makes use of the same weighting scheme for indicating improvements or reductions in quality of life as it does for indicating the value to ascribe to life-extension. Because the evLYG still makes use of the same methodological framework as the QALY, by eliminating discounting of life-extension it also affords no value to quality-of-life improvements, as it has no mechanism to ascribe value to symptom reduction without discounting the value of life-extension. As a result, it has limited usefulness in evaluating the value of a treatment. Contrary to the implication in the Epstein Becker Report, ICER does not combine the QALY and evLYG into a hybrid model; instead, ICER calculates the measures independently and then recommends the results of one or the other. Thus, adding the evLYG is not a solution; it merely forces payers to choose between one measure that undervalues life extension (the QALY) and one that affords no value to quality-of-life improvements (the evLYG). Neither account for both the full value of life-extension and the value of quality of life improvement (DREDF, 2021).

While ICER’s footprint in Europe and other parts of the world is large, Toresco indicates that their influence is smaller in the United States.

“Using QALYs as part of a cost-effectiveness analyses (CAEs) can be used to ultimately block treatments for individuals,” said Toresco.

Boone, however, worries that health insurers are reimbursing drugs based upon ICER’s drug value, which is concerning. She pointed us to the National Council on Disability, an independent federal agency established in 1978, and their 2019 report on Quality-Adjusted Life Years and the Devaluation of Life with a Disability. In that report, they recommended the following:

• Insurance programs jointly run by the Federal Government and the States, such as Medicaid, should not rely on cost-effectiveness research or reports that gather input from the public on health preferences that do not include the input of people with disabilities and chronic illnesses, and;

• CMS should utilize well-established alternatives to QALYs, such as MCDA, which is a method that better acknowledges the complexity of healthcare coverage decisions, or cost-benefit analysis, when the exact benefits and costs of a drug or treatment are known. CMS could utilize these methods in combination, such as using cost-benefit analysis as one component of an MCDA. If CMS does utilize cost-effectiveness analysis, it should consider utilizing it as one component of a condition-specific MCDA (National Council on Disability, 2019).

Jen Laws, President & CEO of the Community Access National Network (CANN), brought up an example of how QALYs have been used to justify not only treatments for diseases, but preventative treatments to prevent their transmission.

“We know that QALYs and other "cost-effectiveness" metrics which devalue the lives of people living with HIV have a consequential impact on access to care and prevention innovations,” Laws said. “Whether private or government-sponsored, payors are often focused on short-term financial interests, and this meaningfully impedes patient choice—if the payor won't cover the medication, it is not meaningfully accessible or something a patient can choose. This creates a perverse incentive to prioritize financial pressures over patients' humanity and well-being: ‘who is worthy’ based on preconceived notions of ‘societal productivity’ is an idea rooted in eugenics and ultimately self-defeating when it comes to tackling the world's greatest health care challenges.”

Laws cites a 2022 study on the cost-effectiveness of injectable forms of Pre-Exposure Prophylaxis (PrEP) to prevent the transmission of HIV. Essentially, Neilan, et al., attempted to determine whether or not long-acting injectable PrEP—delivered once every two months after the initial lead-in dose—was more “cost-effective” than daily oral dosing of PrEP using branded or generic Truvada (Neilan, et al., 2022).

“Neilan, et al., found that ‘...oral PrEP limits the additional price society should be willing to pay...’, Laws quoted. “The limitation? ‘Uncertain clinical and economic benefits of averting future transmissions.’ In the public health sphere, it is unquestionable that adverting future transmissions of HIV is of exceptional economic and clinical value; society benefits when pandemics come to an end. Further, we know injectable PrEP is ideal for some patients, increasing adherence, ensuring protection, and reducing overall health system burden. The only current injectable PrEP product on the market prevents an additional 4.5 more primary and secondary HIV transmissions than oral PrEP. That's worth paying for. Beyond that, on the individual patient level, the piece of mind in having consistent, reliable access to the medication we know works for us, is invaluable.”

Bridget Dandaraw-Seritt, Founder for Advocates for Compassionate Therapy Now, reminded us that an example of how QALYs have been used in the United States exists in the case of the state of Oregon. In 1989, the state of Oregon began using QALYs with its state Medicaid program, the Oregon Health Plan—a decision that, in 1992, the U.S. Department of Health and Human Services (HHS) found violated the Americans with Disabilities Act (1990). Oregon continued to use QALYs, however, to inform decisions and ration care under a Section 1115(a) waiver (Gallegos, 2021).

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This use of QALYs prompted the Oregon Senate in 2024 to pass Senate Bill 1508-A, which would prohibit the use of QALYs in Oregon. This ban went into effect on January 1st, 2025.

On the national front, HHS released guidance in 2024 related to the use of QALYs to limit access to healthcare because of the devaluative nature of QALY scoring:

• Although recipients may make use of multiple factors to influence their decision-making, the use of a measure of value that assigns lower value to extending the lives of people with disabilities to determine eligibility, referral, or provision or withdrawal of an aid, benefit, or service can be nonetheless discriminatory;

• While the nondiscriminatory use of value assessment is an important tool for health care cost containment, the Department agrees that discriminatory usages of value assessment harm people with disabilities and provide (Nondiscrimination on the Basis of Disability in Programs or Activities Receiving Federal Financial Assistance, 2024).

In response to rule changes and guidance put forth by HHS, ICER—which actively recommends and supports the use of QALYs for “cost-containment” purposes—issued a proposed framework that gives the impression that ICER is listening to their concerns and regulations:

In considering cost-effectiveness, [the state] cannot use cost-effectiveness analyses that use the cost-per-quality adjusted life year or similar measure to identify subpopulations for which a treatment would be less cost-effective due to severity of illness, age, or pre-existing disability. In addition, for any prescription drug that extends life, the [state’s ] analysis of cost-effectiveness must not employ a measure or metric which assigns a reduced value to the life extension provided by a treatment based on a pre-existing disability or chronic health condition of the individuals whom the treatment would benefit (Institute for Clinical and Economic Review (ICER), 2025).

While this blueprint statement gives the impression that ICER is being responsive to concerns about the utilization of QALYs to deny coverage and treatment, their underlying, fundamental purpose is to attempt to quantify the cost-effectiveness of—and therefore reimbursement rates for—medications and treatments using metrics that still devalue the lives of people who are disabled or chronically ill.

Additionally, the 118th Congress passed House Resolution 485—the Protecting Health Care for All Patients Act of 2023—along party lines. This bill had two primary provisions:

1. The bill would prohibit the use of QALYs by any federal health care program or federally funded state healthcare programs from using prices based on QALYs to determine relevant thresholds for coverage, reimbursements, or incentive programs, and;

2. Would reduce funding for the Prevention and Public Health Fund by $595 million between 2024-2029 (Protecting Health Care for All Patients Act of 2023)

While the bill had initial bipartisan support and sponsorship, the addition of the secondary provision stripping funding mandated under the Affordable Care Act from the Prevention and Public Health Fund, as well as concerns that the legislation could be used by pharmaceutical companies to raise prices without federal agencies considering using pricing metrics to determine those increases discriminatory, resulted in a party-line vote, with Democrats refusing to vote in favor of those cuts (Tong, 2024).

QALYs have been controversial in nature for a long time and in many ways, the “death panels” about which Republican legislators warned in reference to the Affordable Care Act specifically refer to their utilization to deny care and treatment to patients. That said, the United States’ healthcare system—at least those who receive coverage under private and commercial insurance, rather than public insurance—already operates under a system that still utilizes those metrics. So long as insurers, such as UnitedHealthcare, BlueCross / BlueShield, Aetna, and others rely on QALYs or similar discriminatory metrics to determine whether or not they will pay for care, disabled people and those living with chronic illnesses will always pay the price. 

Health Disparities in Jefferson County

PlusInc and AIDS Alabama are working to address health disparities in Jefferson County in Alabama. Like many communities in Alabama, Birmingham’s greater metropolitan area has many health conditions afflicting its residents. Our collaborative effort pays particular interest to numerous health disparities, among them HIV/AIDS, Mental Health Services, and Substance Use Disorder. AIDS Alabama is a 501(c)(3) non-profit organization that provides housing, health care services, health insurance premium assistance and support groups designed to empower community members living with HIV/AIDS. AIDS Alabama also offers comprehensive Prevention Programs which provide HIV testing and STI testing and treatment, counseling and outreach to at-risk communities.

-> Learn more about health disparities in Jefferson County

Due to the incidence rate being so low for some of these health conditions in Jefferson Counties, county data are not broken down into demographic categories in order to protect the identities of patients. Nonetheless, it does provide a glimpse into what is happening in Alabama’s North Central region. To achieve greater health equity, our healthcare infrastructure needs to identify the health disparities that exist in the United States, and how they can vary from one health condition or another.

Examining Disparities in Maternal Health

Maternal Health refers to a pregnant woman’s health and wellbeing before, during, and after pregnancy and encompasses aspects of physical, mental, emotional, and social health. Maternal health also includes the absence of maternal morbidity (health conditions that complicate pregnancy and childbirth or that have a negative impact on a person’s health and wellbeing), severe maternal morbidity (outcomes of labor and birth that result in significant negative short- or long-term consequences to a woman's health), and maternal mortality (the death of a woman directly related to complications of pregnancy, birth, or within 12 months of giving birth).

The disparities related to maternal health and mortality are likely related to patients’ ability (or inability) to access maternal care services. According to the March of Dimes, 1,117 counties in the United States (35.57%) lack access to any maternal care services, including hospitals and birth centers offering obstetric care or obstetric providers (OBs, OB/GYNs, or Certified Nurse Midwife [CNM]) per 10,000 birthday), and another 373 counties (11.88%) have low access to maternity care services (Figure 1; Bignance et al., 2022).

Figure 1 - America’s Maternity Care Deserts

Note - Data from Bignance et al., 2022. Dashboard available at: https://www2.deloitte.com/us/en/pages/life-sciences-and-health-care/articles/march-of-dimes-maternity-care-deserts-dashboard.html

The United States has the worst maternal mortality rate out of any high-income country (Gunja, Gumas, & Williams, 2022). While maternal mortality rates in the United States have seen significant annual increases across all racial groups since 2018, when 658 women died at a rate of 17.4 deaths (per 100k live births), and peaking in 2021, when 1,205 women died at a rate of 32.9 (per 100k live births; Hoyert, 2023), recent data indicate that 817 women died in 2023, at a rate of 22.3. Maternal mortality rates decreased significantly among Black, White, and Hispanic Women, and decreased marginally for Asian Women (Hoyert, 2024). These decreases were seen across all age groups, as well.

Despite these decreases, Black Women continue to bear a disproportionate burden compared to their peers with a maternal mortality rate of 49.5 (per 100k live births) in 2022, compared to White Women (19.0), Hispanic Women (16.9), and Asian Women (13.2).

Older women continued to have the highest rates of maternal mortality, at 87.1, compared to 21.1 in women aged 25-39 and 14.4 in women younger than 25.

As we noted in 2023’s Disparities Statement, little research has been conducted to examine the correlational or causal relationship between income levels and maternal mortality. Somewhat paradoxically, women with higher incomes may be at risk of experiencing complications or mortality during pregnancy. This appears to be because women with higher levels of income are more likely than those with lower incomes to wait to attempt pregnancies until later in life, which increases the risk of complications and mortality, and are more likely to have multiple birth pregnancies, which may be the result of fertilization treatments used to get pregnant. Women with lower incomes are more likely to become pregnant much earlier in life, which may mean they have fewer complications and lower rates of infant or mother mortality.

What can be observed, however, is that Black families, regardless of their income levels, have worse infant and maternal health outcomes than the very poorest White families (Kennedy-Moulton et al., 2022).

Women living in the American South (i.e., Alabama, Arkansas, Kentucky, Louisiana, Mississippi, and Tennessee) experienced the highest rates of maternal mortality from 2018-2020, with Arkansas having the highest rate at 40.4, compared to the national rate of 20.4 (Figure 2; KFF, n.d.). However, data were suppressed for 20 states and the District of Columbia, painting an uneven picture of maternal mortality rates across the U.S.

Figure 2 - Maternal Mortality Rates by State, 2018-2020

Note - Data from KFF, n.d.

Considerations and Discussion: The Potential Impacts of the Dobbs Decision on Maternal Health Outcomes

While maternal mortality rates saw significant decreases from 2021 to 2022, it is unknown whether or not this decline will become a continuing trend, particularly due to the recent overturning of Roe v. Wade by the Supreme Court in 2022 in their Dobbs v. Jackson Women’s Health Organizations ruling. Since that time, several states have moved to severely limit or eliminate access to abortion services and medications. This has already resulted in obstetricians leaving those states, further worsening a field already beleaguered by a limited number of physicians and too many patients per physician (Weiner, 2023).

A qualitative study published in JAMA Network Open surveyed 54 OB-GYNs practicing under abortion bans in 13 states about their perceptions on the impacts on the OB-GYN field and patient outcomes (Sabbath, McKetchnie, Arora, & Buchbinder, 2024). Physicians raised concerns that these laws may result in delayed medically necessary care until patients were at risk of death or permanent impairment in order to comply with state laws. They were also concerned about what types of counseling they could provide without running afoul of those laws, and about their inability to provide care under the statutes without the risk of losing their licenses. 6 of surveyed OB-GYNs indicated that they had already relocated their practices out of their respective states and reopened in states with stronger abortion protections, while another 29 reported wanting to leave the state but being unable to do so due to personal ties. The OB-GYNs surveyed also reported that these laws were likely to make recruiting new physicians or students more difficult.

A prime example of this is the state of Idaho, where 21 of Idaho’s 44 counties (47.73%) are designated as Maternal Care Deserts (Bignance, et al., 2022). Since the passage of a near-total abortion ban in August 2022, the number of obstetricians decreased from 227 in 2022 to 176 in 2023 (Associated Press, 2024). In addition, three facilities in Idaho have closed their maternity services since August 2022—Bonner General Hospital (Campoamor, 2023), Valor Health Hospital (Tabachnick, 2023), and West Valley Medical Center (Moseley-Morris, 2024).

These closures and the loss of maternal health providers are not isolated to Idaho, nor does it appear that the issues of critical understaffing and new blood entering the field in states with abortion restrictions or bans will be abating any time soon. Moreover, because we are only two years past the Dobbs decision, it is difficult to definitively quantify how these state-level bans will impact maternal health outcomes.

Because many of the states who have already passed or are rushing to pass abortion restrictions are located in states where the majority of counties already have low- to no-access to maternal care services, these restrictions may make accessing maternal care even more difficult, should physicians continue to leave without applicants willing to risk their licenses by practices in legislatively hostile states. This may further exacerbate maternal mortality rates, particularly among Black Women living in Southern states.

PlusInc will continue to monitor disparities in maternal health outcomes.

RSV Surveillance After the Pandemic and the Growing Risks to Life in Appalachia

Respiratory Syncytial (sin-SISH-uhl) Virus, or RSV, is a common respiratory virus that usually causes mild, cold-like symptoms. Most people recover in a week or two, but RSV can be serious, especially for infants and older adults. RSV is the most common cause of bronchiolitis (inflammation of the small airways in the lung) and pneumonia (infection of the lungs) in children younger than 1 year of age in the United States.

In 2022, PlusInc published summaries highlighting the disparities in the incidence and mortality rates of RSV between various regions, states, and populations. In 2024, PlusInc, in collaboration with the Appalachian Learning Initiative (APPLI, pronounced like “apply”), will be focusing on highlighting the risks that RSV poses in the 13 states, 423 counties, and 8 independent Virginia cities that make up the Appalachian Region.

In our 2022 report, we highlighted the following trends:

• The incidence of RSV in the 2020-2021 RSV season—which generally runs from early August through late July—saw record low rates of antigen test detections and polymerase chain reaction (PCR) test detections for RSV in every U.S. Census Region except for South, which includes the following states: Alabama, Arkansas, Delaware, the District of Columbia, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, North Carolina, South Carolina, Tennessee, Texas, Virginia, and West Virginia. This historically low level of infections was likely the result of COVID-19-related pandemic shutdowns and the proliferation of public masking and social distancing policies.

  • The Midwest Region, which typically has the highest rates of detection out of any region, saw just 610.0 antigen test detections and 5,142.0 PCR detections.

  • By comparison, the South saw 3,220.0 antigen detections and 14,148.2 PCR detections during the same period.

    • This is likely due to the fact that many states in the Southern region began attempting to “return to normal” in 2021, after the first year of COVID-19-related shutdowns. These decisions to “normalize” were made in large part because of public and political outcries against what some believed to be “government overreach,” and were accompanied by legislative changes in many Southern states that highly limited the legal ability of state and local departments of health to enact public health protocols in response to disease outbreaks.

• The 2021-2022 season saw a resurgence of RSV across every region, with a total of 10169.1 antigen detections and 42,880.7 PCR detections, with the Midwest leading the nation with 42,880.7 PCR detections and the Northeast with the fewest, at 13,353.7.

  • The likely reason behind this increase was, again, a return to normal daily interactions and a move away from pandemic protocols.

After that initial disparities report, PlusInc continued to gather data about the disease and the following trends have occurred:

• The 2022-2023 season saw an explosion of new RSV detections across the United States, with a total of 14,129.1 antigen detections and 203,193.9 PCR detections, with the Midwest again leading the nation with 73,559.9 PCR detections, followed by the West with 67,286.2. The number of detections in the South continued to climb in that season with 36,023.3 PCR detections.

• In the 2023-2024, to date, the nation has seen 10,603.5 antigen detections and 148,382.1 PCR detections, with the Midwest again leading the nation at 48,710.6. This year, however, the South has already surpassed the 2022-2023 season, with 38,095.4 PCR detections, while both the Midwest and West regions are unlikely to reach the same levels as the year before (Centers for Disease Control and Prevention, 2024a)

So—why are these data from the South so concerning?

10 of Appalachia’s 13 states—Alabama, Georgia, Kentucky, Maryland, Mississippi, North Carolina, South Carolina, Tennessee, Virginia, and West Virginia—are located in this region (Figure 1).

Figure 1 – United States Census Regions

Notes: Retrieved from the Centers for Disease Control and Prevention (CDC), 2023. (https://www.cdc.gov/surveillance/nrevss/downloads/us-census-regional.pdf)

When breaking down surveillance into the 13 states, we gathered data for the 2021-2022, 2022-2023, and 2023-2024 RSV seasons. The findings are troubling for a number of reasons:

• As is the case with all diseases, the states with the higher populations are going to have higher incidence numbers both because there are more people and because there are larger population centers with tighter population density.

• Georgia, North Carolina, and Tennessee are seeing incredibly concerning trends:

  • Georgia saw a 14% increase in PCR detections from the 2021-2022 season to the 2022–2023 season, and has seen a 45.4% increase in PCR detections this season, to date, above the previous season.

  • North Carolina saw a 279.4% increase in PCR detections from the 2021-2022 season to the 2022-2023 season, and has seen another 23.8% increase in PCR detections this season, to date, above the previous season.

  • While the overall incidence of RSV detections is traditionally low in Tennessee, the state still saw a 47.6% increase from the 2021-2022 season to the 2022-2023 season, and has seen another 54.5% increase in the current season.

However…the more concerning issue with the state of Tennessee lies a bit deeper and actually extends to the state of Alabama, as well:

An unusual trend has occurred in the current RSV season, where antigen tests in both Alabama and Tennessee are showing significantly higher detection levels than PCR detections for the same period of time. Normally, the antigen detections are lower than the PCR detections because PCR testing is more definitive. Essentially, the antigen tests can only determine if you have an active virus in the body and cannot detect small amounts of the virus or asymptomatic cases as accurately as PCR testing.

When we see a trend of antigen testing results being much higher than PCR testing results, it can mean a couple of things:

1. Finalized testing data may not be finalized for those periods. This may occur early in the report stages when the individual clinics and state agencies have either not received all of the data, there are duplicate data, or other issues with the data exist, or;

2. A more concerning issue exists where patients are testing positive for RSV using rapid test but are not following up those rapid tests with definitive PCR testing. This may be the result of lacking access to facilities that provide that testing, being unable to afford additional testing, being afraid or hesitant to follow up with confirmatory testing, or simply choosing not to proceed with additional testing for whatever reason.

Another dangerous trend is emerging in West Virginia:

When looking at the 2021-2022 RSV season, infections coincided with the start of the first full year of in-person school attendance during the second year of the COVID-19 pandemic, and essentially ending shortly after the New Year going into 2022. In the 2022-2023 season, infections didn’t really start to get going until late September, again trailing off after the New Year going into 2023.

In the 2023-2024 season, however, RSV got a very late start, with infection rates not really spiking until early-November, and continuing to stay high throughout January. Across the state of West Virginia, anecdotal reports of respiratory illnesses are showing up all over social media and in school district Facebook pages. And, while the state may not have already surpassed the numbers from 2022-2023, many residents are concerned about that possibility, particularly in a state where vaccine uptake rates across all disease states are starting to see sharp declines (CDC, 2024b).

Aside from these trends, another risk is posed, particularly in Central Appalachian counties located in Kentucky, North Carolina, Tennessee, Virginia, and West Virginia: the terrible ravages that have resulted from drug addiction.

Since the mid-2000s, the rates of drug addiction and overdose deaths as a result of drug use have increased nationwide, and few regions have been more impacted than Central Appalachia. While finalized drug overdose data for 2022 have not yet been released by the CDC, West Virginia, Tennessee, and Kentucky occupied the first, third, and fifth spots for the highest rates of overdose deaths per 100,000 residents in 2021, at 90.9, 56.6, and 55.6, respectively. Unfortunately, due to changes in the CDC drug overdose reporting systems, access to previous surveillance reports and dashboards appears to have disappeared in the process of transitioning to the new systems. However, state-level reporting outside of the CDC appears to remain unchanged, which allows us to access older records.

Because these states and counties have experienced high rates of overdose deaths, as well as non-fatal overdoses and drug charge-related incarceration, the impacts of drug addiction tend to stretch far beyond the individual living with substance use issues. According to a 2020 interview with Katrina Harmon, Executive Director of the West Virginia Child Care Association, over 90% of children currently in West Virginia’s foster care system are there due to drug-related issues. However, the foster system isn’t the first choice for the Department of Child Protective Services; CPS always tries placing a child whose life has been upended by drug-related issues with a family member. This has led to a broad increase in intergenerational households, with children being raised by grandparents and great-grandparents, all of whom are particularly susceptible to RSV. These circumstances mean that children who attend school and pick up colds, flus, RSV, and other respiratory ailments then bring those illnesses home to their loved ones, which can result in entire families being all but incapacitated by disease with normally high survival rates.

These concerns are further complicated by growing reports, both scientific and anecdotal, about growing vaccine hesitancy and distrust of healthcare providers, particularly in Southern, Appalachian, and largely rural states (Vestal, 2023). While child-age vaccination rates decreased during the pandemic shutdowns and reduction of healthcare services provision, these rates have not returned to their pre-pandemic rates.

After vaccine requirements were legally instituted by federal and state governments for COVID-19, many states have begun to reexamine their own general vaccination requirements for children prior to attending schools. Prior to the pandemic, relatively few state-level bills related to vaccines were introduced. With the release of the vaccine in 2021, several states began enacting legislation preventing COVID-19 vaccine requirements, specifically, but also began looking at the possibilities of either eliminating or expanding exemptions to existing routine immunization requirements for students (Roth, 2023).

As the RSV continues, we will continue to monitor national, regional, and state-level surveillance as we work to raise attention about.

Health Disparities Portfolio Expanded to Include More Chronic Health Conditions

In 2022, PlusInc launched its national campaign to raise awareness about health disparities among marginalized communities in the United States. Health Equity can only be achieved by addressing and changing the systemic institutional and societal barriers that result in health disparities. Initially, our health disparities portfolio focused on COVID-19, Escherichia coli Pyomyositis (ExPEC), HIV/AIDS, Mental Health, Respiratory Syncytial Virus (RSV), Substance Use Disorder (opioids, stimulants), and Viral Hepatitis (HBV, HCV). Next year, we will expand our reach into seven additional chronic health conditions to complement the work we’re already doing.

In 2023, PlusInc’s expanded health disparities portfolio will include:

1. Behavioral Health

2. Cancer - Colon

3. Cancer - Melanoma

4. Cardiovascular Disease

5. Maternal Health & Mortality

6. Respiratory - Asthma

7. Respiratory - Chronic Obstructive Pulmonary Disease (COPD)

The additions represent a broad array of the health issues long plaguing marginalized communities in the United States, as well as others emerging as incident rates increase and more data becomes available on them. For example, we have known for quite some time that poor maternal health outcomes disproportionately impact communities of color. According to the U.S. Centers for Disease Control & Prevention (CDC), black mothers are three times more likely than white mothers to die from maternal health complications, and many of them avoidable with better care. Additionally, a federal study on maternal deaths yielded a very troubling statistic: most (like, 90%) maternal deaths among Indigenous mothers were preventable. More troubling is pregnant mothers are now being threatened by a new trend in the United States, namely maternity care ‘deserts’ are on the rise.

But there are other deserts impacting quality healthcare. There are significant care gaps in behavioral health. Fortunately, there is a new behavioral health data mapping tool, which could remedy the problem. Change won’t happen unless such tools are accompanied by heightened awareness, additional resources, and better community outreach. PlusInc exists to help in this effort.

Moving forward into next year, PlusInc will build upon our momentum we started this year by not only taking a deeper dive into the health disparities surrounding these chronic health conditions, but also evaluating how they’re impacting local communities.

Health Disparities in Merced & Stanislaus Counties

PlusInc and Legacy Health Endowment are working to address health disparities in Merced and Stanislaus Counties in California. Like many communities in California, both Merced and Stanislaus Counties have many health conditions afflicting its residents. Our collaborative effort pays particular interest in how COVID-19, Hepatitis B, Hepatitis C, Mental Health Services, Substance Use Disorder and HIV/AIDS are impacting our local communities. Legacy Health Endowment provides funding and technical support to create healthcare solutions and facilitate improved wellness within Stanislaus and Merced Counties.

-> Learn more about health disparities in Merced County

-> Learn more about health disparities in Stanislaus County

Due to the incidence rate being so low for some of these health conditions in Merced and Stanislaus Counties, county data are not broken down into demographic categories in order to protect the identities of patients. Nonetheless, it does provide a glimpse into what is happening in the northern San Joaquin Valley section of the Central Valley, California. To achieve greater health equity, our healthcare infrastructure needs to identify the health disparities that exist in the United States, and how they can vary from one health condition or another.

Patients Have a Stake in Health Equity, too

In recent years, “health equity” terminology has become increasingly used in the national conversation about healthcare in the United States. Health equity is often used interchangeably with another term, health disparities, although each one has its own unique meaning. According to the U.S. Centers for Disease Control & Prevention (CDC), “Health equity is when everyone has the opportunity to be as healthy as possible. Health disparities are differences in health outcomes and their causes among groups of people. Many health disparities are related to social determinants of health, the conditions in which people are born, grow, live, work and age.” (CDC, 2020) To achieve greater health equity, our healthcare infrastructure needs to identify the health disparities that exist in the United States, and how they can vary from one health condition or another.

In 2016, a multimodal survey of mayors and health commissioners was conducted by Jonathan Purtle, et al. and it yielded some interesting findings. First of all, less than half of the mayors and health commissioners contacted took the time to complete the survey — which in and of itself, is a sad indictment on how those officials prioritize public health in their respective jurisdictions. That aside, Purtle reported, “Forty-two percent of mayors and 61.1% of health commissioners strongly agreed that health disparities existed in their cities. Thirty percent of mayors and 8.0% of health commissioners believed that city policies could have little or no impact on disparities.” Not surprisingly in today’s political climate, ideology is strongly associated with opinions about disparities. (Purtle, 2018)

Maybe part of the problem is the terminology, health equity and health disparities, is not defined explicitly. Nearly a decade ago, Paula Braveman, MD, MPH warned, “Ambiguity in the definitions of these terms could lead to misdirection of resources.” Dr. Braveman outlined the why explicit definitions are needed, because “not all health differences are health disparities” (Brakeman, 2014).

Health disparities exist, as defined by Dr. Bravemen through a social justice lense, and they are getting worse. Whereas numerous organizations committed to health equity exist, none approach health disparities specific to health conditions from the patient perspective. This is why PlusInc exists.