In 2023, medical practices, patients, and patient advocacy organizations grew increasingly concerned as they learned and tracked the encroachment of external vendors who sell to self-insured employers a specialty drug cost-savings model that first denies patients access to needed drugs and then profits by pushing those same patients into “alternate” drug sources. I identified many of the vendors and shared the intrusion and disruption of these programs on vulnerable patients, including cancer patients, in the December 2022, February 2023, and June 2023 issues of Oncology Practice Management.
These alternate funding programs (AFPs) are becoming more aggressive as the spotlight of concern and exposure of their detrimental impact continues into 2024.
These alternate funding programs (AFPs) are becoming more aggressive as the spotlight of concern and exposure of their detrimental impact continues into 2024. Medical practices, treating physicians, patients, patient advocacy organizations, and patient assistance programs (PAPs) are increasing their alarm about these programs, particularly with patients and self-insured employers who are often not fully informed about the adverse consequences of engaging with an AFP program.
Why Is the AFP Model a Problem for Patients and Employers?
AFP Business Models Vary, But Begin with Care Denial or Delay
Each year, self-insured employers work with their third-party administrators, brokers, and other agents to review previous and projected healthcare expenditures, and then they look for opportunities to mitigate their projected expenditures. The AFP solutions presented to these concerned self-funded employers indicate that the AFP knows ways to save money on specialty drug costs. Once engaged, the first step is to convince the employer to simply eliminate or delay coverage for specific, or in some cases all, specialty drugs (often hundreds of drugs covering a wide range of common serious diseases). This means that the employee, who is paying their healthcare premiums and expecting reasonable access to appropriate care, receives an unpleasant shock after receiving a significant and scary medical diagnosis, learning that the treatment their doctor has recommended is not covered at all or must be referred to an AFP vendor for additional handling.
Given changes in federal law, employees will now be more likely to challenge employers for lack of fiduciary responsibility if their health benefit plan and paid premiums lack timely access to standard-of-care treatment. The Consolidated Appropriations Act of 2021 (CAA) included language that holds employers accountable for the choices they make and the vendors they choose for employee health benefits (see “Massive CAA Shake-up Looming for Health Benefits, Empowering Patients” in the October 2023 issue of Oncology Practice Management).
The AFP Aggressively Recruits the Employee With Very Negative Alternatives
These employees are not told that the reason their drug is not covered is because the AFP placed it on a list for denial or extra handling. Employees are usually told that their needed drug will not be covered and the full cost will be borne by them unless they sign up with the AFP. Employees must enroll with the AFP in order for the AFP to bill the employer for claimed services or savings under the AFP model.
The AFP suggests that they can find alternative pricing or sources for the needed drug (including foreign drug importation) or sometimes alternative drugs (tantamount to nonmedical switching). The AFP then requires that the employee provide full financial, medical, and personal information, including authorization for the AFP to represent them while seeking those alternative sources. The employee’s treating physician may or may not be apprised of what is happening to the employee or what they are being forced to do and may be unaware of the delay in patient access to medication.
The Intrusion of the AFP Disrupts Medical Treatment Before, During, and After Their Involvement
Without the AFP intrusion, the treating physician and the patient are quite capable of navigating the employee benefit plan. Should the patient qualify for patient assistance in the form of drug or financial support, the physician’s staff, nonprofit patient advocacy groups, or PAPs are well trained in seeking out appropriate support—and assist patients every day, at no additional charge to the patient or their employer. Often, needed treatment will start as scheduled, and the billing and payment will follow in due course during this patient assistance free of AFP intrusions.
If an AFP intrudes in this process, the vulnerable patient’s care may suffer while access to their needed drug is stopped in its tracks with the first denial, then weeks or months may pass as the AFP goes through its process of AFP enrollment, and drug or pricing processing and delivery. The AFP “alternative sources” for these needed, but denied, drugs are questionable at best. One tactic of some AFPs is to seek to enroll patients in a PAP, mostly seeking “free-drug” from charitable programs supported by manufacturers. These programs are individually funded under careful parameters so that they can benefit truly indigent, uninsured, or underinsured patients who have no other alternatives. Mass enrollments of supposedly uninsured patients (who are in reality employed and insured) will quickly drain these PAPs and leave needy patients without recourse or access to essential drugs.
Another tactic, sometimes referred to as an international discount program, seeks to fill the prescription from other countries. Wholesale foreign drug importation for multiple patients is not safe or allowed in the United States. The FDA created a pathway for states to apply for importation from another country, but to date, only 1 state has even applied for importation—from Canada—and there are many hurdles to cross before that ever reaches implementation—if Canada ever approves the drug access itself.1 I have personally been told by a key executive whose company does extensive foreign importation to obtain discounted drugs for employers that “yes, it is illegal, but no one cares or is watching, because it saves money on expensive drugs.”
Exposing the Truth of AFP Programs
Self-insured employers are extremely worried about the rising costs of healthcare, including specialty drugs, and are vulnerable to the AFPs’ promises of reduced costs. However, employers often engage AFP vendors without an understanding of the true nature of these programs or the potential risks to themselves and their employees.
The AFPs market themselves to employers, unions, and brokers in a variety of ways, including as prescription advocates, advocacy services, and specialty drug advocates. These descriptions make it sound as though they are working on the side of patients. However, unlike true patient advocates or PAPs, their revenue model is to claim fees from the self-insured employers for their (self) estimated savings or for services in obtaining free or discounted drugs. They often mask their involvement in representing the patient and do not disclose when applying for PAP resources that the patient is only uncovered for that specific drug because the AFP sold the employer on withholding coverage and placing the employee into their AFP program. They obviously do not tell their employer clients that any treating provider or nonprofit patient advocacy or patient assistance organization would seek drug support or financial assistance for any qualified patient at no cost to the patient or employer.
Unlike true patient advocates or patient assistance programs, their revenue model is to claim fees from the selfinsured employers for their (self) estimated savings or for services in obtaining free or discounted drugs.
The Pushback Is Happening and Will Continue to Grow in 2024
In May 2022, Johnson & Johnson Health Care filed suit against one AFP, called SaveOnSP. SaveOnSP attempted to have the suit dismissed in court, but that was unsuccessful following strong pushback from the medical and patient advocacy community, and the case continues to proceed.2
On May 5, 2023, Abbvie filed suit against an AFP, Payer Matrix. Payer Matrix responded by May 23, 2023, with a press release that self-described Payer Matrix as a “patient advocacy company,” alleging that Abbvie was denying their efforts to obtain “vital drugs for needy patients.”3 On August 24, 2023, a press release from CancerCare and 33 other nonprofit patient advocacy organizations requested that Payer Matrix, “an alternative funding vendor, stop identifying itself as both a ‘Patient Advocacy company’ and a ‘Leading Patient Advocate.’” These organizations went on to say that “Payer Matrix creates confusion and delays that can put patients in jeopardy.”4
The letter from the 34 patient advocacy organizations includes key points that other similar organizations, treating providers, and employers may find useful in challenging other for-profit AFP vendors:
Patient advocacy groups are organizations that are developed to represent, support, and advocate on behalf of patients, caregivers, and families living with rare, chronic, complex, or specific conditions. These organizations often retain 501(c)(3) or 501(c)(4) status designations as non-profit organizations…. Payer Matrix is a for-profit business representing the interest of employers and itself, not patients. Payer Matrix’s business model requires unwitting patients to share personal information such as income, health status, and other personal data, so that Payer Matrix can enroll the patient in a PAP. Notably, these programs are already available to patients without Payer Matrix’s participation. Payer Matrix’s complex process often results in delaying patients’ access to their treatments, forcing them to experience symptoms without relief, and disease progression. Moreover, unlike traditional patient advocacy organizations that are patient-centered to support patients’ needs, preferences, and priorities, Payer Matrix mandates employees engage in this byzantine process or lose coverage for their medication, thereby requiring the patient to be responsible for the full cost of the drug. This demonstrates that Payer Matrix is a self-serving for-profit company, not a patient-centered advocacy organization representing the needs, preferences, and priorities of patients, caregivers, and families.5
Some known AFP vendors include ImpaxRx, PaydHealth, Payer Matrix, RxFree4me, SHARx, SavOnSP, and ScriptSourcing.
Since these lawsuits dropped, there have been numerous programs, articles, conference presentations, and webinars exposing the challenges that AFP programs present to vulnerable patients, employers, and the network of patient advocacy and patient assistance programs for these critically needed medications.
These discussions have been helpful in moving the issue forward on a national scale but will need to continue and escalate in 2024. The AFP models continue to market their services as beneficial to employers and patients. We see the dark side of these programs:
- Seriously ill patients incur delayed treatment when the AFP has contracted with their employer to seek savings on the prescribed specialty medicine.
- Many of these patients with ongoing medical issues may have been previously enrolled in PAP for assistance for which they qualified as “underinsured.”
- The physician may not know that treatment is delayed.
- Since AFPs seek free drug to accrue as savings to their employer clients, they present their client’s employees as “without coverage.”
- PAP organizations that catch the application as coming through an AFP program will appropriately deny that application as not fitting the parameters of their charitable program because the patients are actually employed insured patients being presented inappropriately as uninsured or without coverage due to an AFP action.
- If the PAP cannot screen out AFP-generated applications, their limited resources intended for charitable care will be rapidly depleted and truly needy patients left without access to drugs and support.
- If the AFP is unable to secure free drug or discounts for which they can bill the employer, the patient is abandoned by the AFP and sent back to their existing health benefit plan weeks or months later.
- When patients are dumped from the AFP program and returned to their existing health benefit plan, it often is too late to reapply for support they received prior to the AFP intrusion. Patients have told me they have abandoned their needed treatment at this point in despair.
What Can Medical Practices Do?
We now need to connect the dots. If we discover that patients are being affected by an AFP program, we need to stand up for them. Identifying an AFP is not easy, but help is available. Some known AFP vendors include ImpaxRx, PaydHealth, Payer Matrix, RxFree4me, SHARx, SavOnSP, and ScriptSourcing. There are several more. Their public websites tout the potential savings and call themselves advocates for patients or specialty drugs but are fairly sparse on the details of how the process works or where the savings and drugs come from.
Many PAP organizations have narrowed their patient assistance parameters to exclude employed, insured patients represented by AFPs, but it is still difficult to detect the intrusion of these vendors. Identification of AFPs is essential, however, to quantify their harm to patients and employers. Questions to consider include:
- Has your insured, employed patient been told that their drug is completely not covered by their health plan?
- Has that patient been told to enroll with a specific vendor and to provide private health and financial information to them, including copies of identification cards and authorization for the vendor to represent them?
- Has an organization not known to you as a true patient advocacy organization requested practice information or forms completion or signatures to help request patient assistance?
- Has the patient been told that their drug will be shipped from outside the country, or from a specific pharmacy working only with this vendor?
- Has your patient come to you after a failed representation by a vendor and said that suddenly they are now allowed to receive their drug under their employer health plan, when it was not covered at all just weeks or months before?
When we see patients paying good money for premiums that are not delivering sufficient value for their needs, we need to track, aggregate, and engage. We may use this information to approach employers with problematic coverage and offer them support and guidance.
Many employers may not yet be aware of the implications of these AFP programs on their vulnerable employees or the other truly needy patients adversely affected by the draining of limited PAP resources. Most insurance plans or intermediary vendors do not drill down into the level of details of how different coverage policies actually affect patients in the real world or of the consequences of a vendor’s “cost saving” program on charitable resources.
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References
- Freed M, Cubanski J, Neuman T. What to know about the FDA’s recent decision to allow Florida to import prescription drugs from Canada. KFF. January 12, 2024. Accessed January 29, 2024. www.kff.org/policy-watch/what-to-know-about-the-fdas-recent-decision-to-allow-florida-to-import-prescription-drugs-from-canada/
- Levitt JE, Dresser JC, Lee DY. What Johnson & Johnson’s lawsuit against SaveOnSP means for drug manufacturers and plan sponsors. Frier Levitt. February 6, 2023. www.frierlevitt.com/articles/what-johson-johnsons-lawsuit-against-saveonsp-means-for-drug-manufacturers-and-plan-sponsors/
- Maas A. Alleging ‘Fraudulent and Deceptive Scheme,’ Abbvie files lawsuit against alternate funding company Payer Matrix. AIS Health. May 18, 2023. www.mmitnetwork.com/aishealth/spotlight-on-market-access/alleging-fraudulent-and-deceptive-scheme-abbvie-files-lawsuit-against-alternate-funding-company-payer-matrix/
- 34 Patient advocacy organizations call on Payer Matrix to stop misidentifying as a patient advocacy company. CancerCare. August 24, 2023. Accessed January 30, 2024. www.cancercare.org/press/releases/243-2023_08_24
- Letter to Payer Matrix. CancerCare. August 17, 2023. Accessed January 30, 2024. https://media.cancercare.org/documents/344/original/Response-to-Payer-Matrix_Final-8.17.23.pdf