Jen Laws, President & CEO Jen Laws, President & CEO

Equity in Access: Hospital Price Transparency, Medical Debt, and 340B

As part of Community Access National Network’s (CANN) 2021 blog series, A Patient’s Guide to 340B, we published a piece detailing how the decline in charity care impacts patients after seeing a provider with a particular focus on practices around debt collection and medical debt. Since then, the Biden Administration issued a directive through federal agencies for credit reporting agencies to stop reporting medical debt on consumer credit reports. The idea was an effort to reduce the impact of medical debt in other areas of patients’ lives, like securing housing or employment. Emergencies and even routine care, say a pregnancy, can after all affect a person’s financial status for years after the fact and with the ballooning nature of medical debt affecting millions of Americans, something needed to be done to better protect patients. The Affordable Care Act (ACA), in general, sought to address the financial concerns of patients, particularly with regard to avoiding necessary care for fear of the financial repercussions. These moves by President Obama’s Democratic successor were relatively predictable.

The three largest credit reporting companies, Experian, Equifax, and TransUnion, agreed in 2022 to implement these rules…sorta.

The details of those agreements and how hospitals navigate “bad debt”, or when a patient can’t afford a bill, are stickier than the rules can address without legislation. Hospitals have their own internal teams to pressure patients to pay something, even when it comes at the expense of food on their tables or paying rent, and even when those same patients are entitled to financial assistance or charity care and shouldn’t be paying anything. But once that effort fails, hospitals and other medical providers can and do “charge off” those bad debts to credit collection companies and those claims can and will continue to show up on consumer credit reports. Advocates have been pushing the Internal Revenues Service (IRS) and other agencies to do more to protect patients and consumers. All of that is part of why Representative Tlaib (D – Michigan) has introduced a bill to prohibit medically necessary care from arriving on a patient’s credit report, among other rules and limitations on how providers, credit collectors, and credit reporting entities handle medical debt.

The proposed bill, however, does not address hospital practices in running credit reports in order for patients to qualify for financial assistance – which can result in a “ding” on a patient’s credit file.

Among other efforts to reduce costs related to medical care, the Biden Administration also implemented hospital and insurer price transparency rules, with the idea that transparency might drive down costs and encourage competition regarding common medical procedures. However, there is no central database of these services hosted by the government, rather these services are posted…somewhere on hospital websites. The problem is hospitals and insurers are really, really good at abusing process and not meeting the actual intent behind these efforts. The advocacy organization Patient Rights Advocate has recently released its analysis of hospital compliance with these rules and it’s not pretty. The Centers for Medicare and Medicaid Services (CMS) hasn’t issued rules for standardizing price data and the files for these data aren’t required to be presented in a consumer-friendly fashion. Further, these rules are required to provide the list and negotiated prices relevant to a consumer and do not address considerations like rebates or their impact on accessing care, nor are these lists required to provide information on how different charity care designs might help reduce the financial burden of these services.

So other than keeping our friends in advocacy and government well-employed by analyzing thousands of lines of data, these tools are proving to be of limited use for the average consumer. And none of that addresses what happens in emergency situations, where “choice” doesn’t exist – like when you need an ambulance or when there’s one or two hospital systems in a geographic area. All the price transparency in the world won’t address consolidation in providers.

Furthermore, a lack of transparency in 340B revenues for hospitals also means a lack of transparency as to how those dollars might be used to mitigate these consumer costs and potential harms when a patient can’t pay. Similarly, with hospitals and insurers pointing fingers at labor and pharmaceutical costs as to what’s driving a crisis of unaffordable care, transparency on actual costs to provide care and treatment would allow for a more meaningful analysis of who’s really in it for the money versus serving the health needs of patients and communities.

For their part, the American Hospital Association fought the transparency rules in court and lost. Their central argument in response to the loss was that these transparency rules took away from serving patients during the height of the COVID-19 pandemics strains on hospitals – but providers don’t crunch these data, administrative personnel do.

Rules standardizing patient cost data presentation, prohibitions on utilizing 340B revenues for consolidation, and anti-competitive practices would certainly be useful for ensuring patients feel secure in accessing care they need and protecting patients from predatory practices. And that security is critically important for patients and for addressing issues around health disparities.

The reality of the matter is providers do deserve to be paid for their work and commitment to their communities and no patient is going to meaningfully argue against that. But when patients find themselves avoiding necessary care because they’re trying to save or qualify for a home or dig themselves out of debt, that’s just plain bad for those patients, their families, their dependents and care givers, the economy, and, frankly, our trust in both government and providers. Health disparities cannot be meaningfully addressed across this country without addressing the financial incentives and disincentives that drive access to care, whether it be the rural hospital crisis or medical debt.

Increasing transparency is an excellent start. Advocates and policymakers should consider to continue to explore ways to protect patient trust by way of accountability in programs and payment processes which are supposed to be about protecting patients as consumers and increasing access to care.

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Jen Laws, President & CEO Jen Laws, President & CEO

Reducing Medication Abandonment; Improving Retention in Care

In early 2021, Riley Johnson, the community co-chair for Florida’s Comprehensive Planning Network, and Kim Molnar, the Director of The AIDS Institute’s Center for Convening and Planning, reached out to me to discuss a more and more pressing issue the state’s pharmacies were noticing: medications patients weren’t picking up. Their primary concern was understanding the scope of the problem and developing interventions appropriate to ensure the state’s Ryan White clients were getting the medications they needed. How does this problem fit into the state’s Integrated Plan and Ending the HIV Epidemic efforts?

The question of scope is one highlighted in a recent report from the trade organization known as PhRMA (Pharmaceutical Research and Manufacturers of America). The report focuses on how medication abandonment is a symptom and measure of health equity (or inequity, as is the case). Comparing the rise in high cost-sharing commercial insurance plans and medication abandonment from between 2016 and 2020, there’s a clear association. Not only did medication cost-sharing increase on new brand name medications, the out-of-pocket costs of many existing brand name medications increased and with those rises in costs came a rise in medication abandonment.

Insurers set the prices end-user patients have to pay at the pharmacy counter and increasing these costs effectively allow for these payers to defer expenses on care. When out-of-pocket costs reached $125 at the pharmacy counter, medication abandonment increased from 40% in 2016 to 58% in 2020. Across all prescriptions, medication abandonment only rose by 4% for the same timeframe, from 10% to 14%. It’s important to note these high cost-sharing medication because they’re often those assigned to chronic conditions, like diabetes, HIV, and hypertension, in which generic options aren’t’ as effective, have difficult to manage side effects, or aren’t even available. Indeed, our providers prescribe particular medications because those medications are appropriate to our individual and personal care.

Digging in further, PhRMA recognized an immediate disparity in who was not picking up their medications. On average, Black patients were 7% more likely to abandon new medications than their white peers. The disparity was particularly high among patients seeking pre-exposure prophylaxis for the prevention of HIV (PrEP) with Black patients 41% more likely to abandon a new fill compared to their white counterparts. Similarly, when a medication’s out-of-pocket cost rose to $125 per fill, PrEP again out paced other medication classes with a 34% disparity between Black and white patients. On the issue of income, between patients who earn less than $50,000 per year (lower-income) and those earning more than $100,000 per year (high-income), lower-income patients were 16% more likely to abandon their medications compared to their high-income peers, in an overall analysis.

PhRMA offers a few policy solutions to help overcome the cost-at-the-counter barrier; 1. Sharing the rebate and discount savings offered to pharmacy benefit managers and health insurers by manufacturers directly with the patients, 2. Covering particular medications from “day one” of benefits, rather than requiring a separate pharmacy benefit deductible to paid first, and 3. Ensuring all value of manufacturer patient assistance programs be credited toward patient deductibles, copays, and out-of-pocket maximums. The report also urges investment in better understanding the root causes of medication abandonment, as one of the limitations of the review includes not being able to account for factors like stigma, the effects of racism, education, or other social determinants of health.

In even this brief, yet national, review of medication abandonment, the necessity of intervention is obvious. That last bit, accurately understanding the “why” and offering an opportunity to intervene is exactly why Louisiana’s Ending the HIV Epidemic plan includes improving data sharing agreements and aims to reach beyond Ryan White funded entities to include the state’s Medicaid program and encourages appropriate coordination for the benefit of patients who need some extra help. When a patient has failed to pick up a medication, it’s the first sign a patient may not yet be ready to start a particular therapy or other barriers to care are pressing enough they’re prime to drop out of care. Improving retention in care by utilizing real-time data or software tools to notify an interventionist, be they case managers or peers, when a patient is struggling to pick up their medications would allow for programs to reach-out, identify the particular barrier a patient may be struggling with and empower or assist them in navigating that barrier. Data collected from these engagements is critical to better understanding and actively quantifying various barriers to care and better targeting individual and community wide interventions.

Medication abandonment is but one issue in which creative solutions, better data sharing while appropriately protecting patient data, and thoughtful considerations from the patient perspective can drive meaningful change.

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Jen Laws, President & CEO Jen Laws, President & CEO

Beyond Medication: Tech Advances in Care Delivery

Broad telehealth acceptance is just the tip of the iceberg when it comes to technology advancements and innovations in the general health care space. From mobile Apps designed to encourage patient-provider communication and medication reminders to drone being the next home delivery pharmacy tool, much hope and concern rests on the horizon of health-in-your-hand-and-on-demand.

In this, as with many developments in care delivery and equitable access, the space of chronic care, specifically HIV, has long helped lead the way for the rest of the industry. A 2018 post on HIV.gov and 2020 post on webMD cite several mobile Apps with focuses on prevention services, linkage to care, care support, and social support. Some study has been done about effective strategies of user engagement with mobile Apps, with a particular focus on younger demographics. One such study, from University of North Carolina at Chapel Hill and Duke University, with participants ranging from 16-24 years of age, found extraordinary efficacy with a “gamifying” approach, including “badges” and “tokens” among users as rewards for adherence and completing tasks or engaging with the App. At 13 weeks, frequent users of the App were more than 56% more likely to achieve viral suppression and regular App users were more than twice as likely to self-report near perfect ART adherence at benchmark periods of the study. Another study, offering social support, with participants at or above 60 years of age across a period of 6 months showed the 30 participants accessed the App more than 2400 times for an average nearing 9 minutes per session.

Many of the studies working to understand best practices in client engagement, messaging, and positive outcomes are exceptionally limited. Beyond the cohort size, technology barriers appear to the biggest hurdles; including ensuring clients have appropriate devices for any particular App design, updated software, ensuring App accessibility across hardware platforms (phones, tablets, computers), appropriate data plans, and access to mobile data signal or Wi-Fi services.

Another avenue under exploration includes modernizing the time-tested aid delivery method of airdrops with drones to reach hard-to-reach rural area health care providers. However, as Uganda Medical Association’s secretary general, Mukuzi Muhereza, cited, drones only address medication transportation to health centers, not issues of medication shortages or transportation barriers from client homes to those same health care providers.

When given this topic for this week, my contract manager questioned “if this can be done in Uganda, why can’t it be done in rural Alabama?” Which is a good question…with lots of discussion worthy of following.

The business that cannot be escaped when discussing consumer data and tech also cannot be avoided in discussing health care delivery systems innovation: Amazon. In 2018, Amazon acquired PillPak, including all their state-based pharmacy licensing agreements, now billed toward Prime customers as Amazon Pharmacy. While posing as a potential exploration into the health care landscape, Amazon Pharmacy’s effort builds upon a concurrent effort to make the company’s voice assistants HIPAA compliant. However, much of Amazon’s effort don’t necessarily fall inside the entity scope requiring patient privacy compliance as HIPPA and explicitly cites compliance with law enforcement activities, recalling community fears associated with molecular surveillance and the criminalization of HIV status. Particularly, Amazon has been known to exploit its collection of user data for the sake of profit, skirt regulatory requirements on technicalities and mutilation of language, and frankly, lacks ethical grounds worthy of potentially courting government funding in light of its anti-labor practices.  Additionally, Amazon has faced numerous data breaches in the last few years and European Union former executives for Amazon have warned the company does not do enough to ensure security of users’ information. Garfield Benjamin gives a deeper dive into the history and context of these concerns, many already experienced in the United Kingdom, here.

That doesn’t mean Amazon, or any company making similar inroads into direct-to-consumer care models, is “always” a bad actor. Indeed, with the Federal Aviation Administration’s recent approval to study Amazon’s drone delivery system, known as Amazon Air, the possibility of delivery to your door within the hour of an appointment is deeply appealing to many consumers seeking easier access to medication. It just means the risks of the moment, of unanswered questions and unregulated technicalities needs to be addressed – and with expediency. Because just as with injectable ARVs being the next wave of innovation in ARVs, streamlining the consumer experience with greater privatization and expanded home delivery options is also on the horizon.

We have this brief moment, now. Where the mega-movers, like Amazon, and regulators, can reach outside of the provider and payer communities and discus with patient and consumer communities to ask us what we’re worried about. If public payers are not prepared to integrate appropriate reimbursements, leverage those reimbursements to ensure our privacy and access to care, to further Health Justice, then we run the risk of only furthering existing disparities, even more than COVID has. Between the rural hospital crisis only deepening and the Biden administration already running into push back on including expanding broadband access in its infrastructure package, as easy examples of the necessary “what-abouts” if we’re to meet this moment for its actual potential – for either good or ill.

Stakeholders across the spectrum should look beyond any development of their own proprietary App functions and into the broadest approach to this space to ensure consumer trust is maintained as one of the highest priorities, collaborative rather than competitive efforts so as not to duplicate efforts or get lost in the sea of App developments, and ensure our technology reflects our values as communities, not just that of those who may find new avenues of profit on our backs.

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