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Pharmacist discuss medication; specialty drug access concept

Navigating Specialty Drug Access for Underinsured and Uninsured Patients

Specialty drug access can be challenging for any patient, but it is most daunting for uninsured and underinsured patients. The costs of specialty medications place them out of reach for most patients without some form of financial assistance — but patients may struggle to find assistance, and some attempts to control drug costs make the problem worse.

Using tools to streamline communications and connect patients to the lowest-cost options for their medication can help uninsured patients get the specialty drugs they need.

Myriad Options, Few Solutions

One resource is the Patient Advocate Foundation (PAF). Its website lists several different options for patients who cannot afford their medication, including uninsured patients. PAF’s listed suggestions include:

  • Store loyalty and discount drug programs.
  • Switching to generic medications.
  • Leveraging bulk discounts through mail-order options.
  • Using samples provided by a doctor’s office.
  • Applying for national, state, or disease-specific drug assistance programs.
  • Contacting manufacturers for cost assistance.

For patients who rely on specialty medications for rare diseases, not all of these options are feasible. Loyalty programs may not cover specialty drugs. Generic options, samples or bulk discounts simply may not exist. And even with the help of an assistance program, the high price tag of orphan drugs may continue to put these options out of reach for some patients.

Among patients who can access one or more of these options, these choices remain underutilized. A 2022 survey found that nearly 80 percent of respondents said they’d noticed an increase in the price of their medications. However, making use of affordability options occurs at much lower rates:

  • 49 percent of respondents said they’d talked to their physician about more affordable options.
  • 44 percent said they’d had the affordability conversation with their pharmacist.
  • 38 percent said they’d used a cash discount card.
  • 38 percent said they’d relied on a copay card or coupon from a biopharma manufacturer.
  • 12 percent said they’d enrolled in a patient assistance program.

Overall, 90 percent of patients said they’d sought out affordability options. Yet even among these patients, most stuck to only one option.

Patient assistance programs (PAPs) are intended to help uninsured patients obtain their medications. Navigating these programs can be challenging for patients who are already managing rare diseases or other medical conditions.

Information on the Pfizer patient assistance program, for example, redirects patients to the Medicaid application process if they qualify. If not, the program provides up to one year of free medication for some patients and discounts for others — a process that requires regular monitoring and re-application to ensure access to essential medications.

Meanwhile, the recently passed Inflation Reduction Act focuses on reducing specialty and other drug costs for Medicare Part D beneficiaries and the federal government, write Juliette Cubanski, Tricia Neuman, Meredith Freed and Anthony Damico at the Kaiser Family Foundation. But the bill does not address the costs of medications for uninsured patients.

Female doctor holds online conversation on a tablet; specialty drug access concept

Falling Into the Specialty Carve-Outs Gap

Specialty drugs make up a considerable portion of U.S. prescription drug spending each year. Half (50 percent) of nondiscounted drug spending goes to specialty drugs, says Doug Long, vice president of industry relations at IQVIA.

Facing these costs, some health insurers and employers seek alternative means to cover specialty medications for their insureds. Their methods, unfortunately, may compound the problem rather than solve it. Thanks to specialty drug carve-outs, some patients are uninsured even when they have prescription drug coverage.

Specialty carve-outs, also known as alternative funding programs (AFPs), remove certain specialty drugs from coverage under a prescription drug plan, according to BCBS Kansas. Because the drug isn’t covered by the employee’s health plan, the employee is officially “uninsured” with respect to that medication. This uninsured status allows the AFP to seek coverage for the medication from a patient assistance program.

Currently, about 8 percent of commercial insurers use an alternative funding program and 31 percent are considering one, writes Adam J. Fein, founder and CEO of Drug Channels Institute.

By creating a group of uninsured patients who otherwise have insurance coverage, specialty carve-outs further complicate the problem of placing specialty drugs into patients’ hands. These arrangements strain the resources of patient assistance programs and leave patients in a precarious situation when it comes to getting needed medications.

Healthcare worker in pharmacy serves woman; specialty drug access concept

Improving Specialty Drug Access for Uninsured Patients

One way to improve specialty drug access for uninsured patients is to connect patients more effectively to the most affordable source for medications.

A recent study of prescription drug prices found that specialty drugs were often less expensive when acquired from specialty pharmacies rather than hospitals or physicians’ offices. At times, the difference was considerable.

On average, medications administered in hospitals cost $7,000 more than the same medication and dose purchased from a specialty pharmacy, according to a study by America’s Health Insurance Plans (AHIP). Medications administered in physicians’ offices cost an average of $1,400 more. Overall, hospitals charged double the price that specialty pharmacies did, while physicians’ offices charged 22 percent more.

A 2019 analysis by researchers Jesse D. Ortendahl and Katalin Bognar found that hospitals retained up to 91 percent of the amounts they charged patients for medications.

Thus, one way to reduce costs for uninsured patients is to connect them to their medications through routes other than hospitals or physicians’ offices. AHIP’s research indicates that connecting patients directly to specialty pharmacies is one option. “Secure, direct delivery [from specialty pharmacies] is a safe and smart competitive alternative that improves affordability and access for everyone,” says Matt Eyles, President and CEO at AHIP.

Understanding the barriers patients face in acquiring medication is a must. In surveying 1,097 patients with Type 2 diabetes, researchers Asma M. Ali, Ewan K. Cobran and Henry N. Young found that 24 percent of the respondents said they couldn’t access needed medication. Respondents cited several reasons they were unable to access their medication, including:

  • Difficulty with out-of-pocket costs.
  • Problems with prescription coverage, including pre-authorizations and carve-outs.
  • Personal health issues.
  • Psychological distress.

Connecting patients to their needed specialty medications requires more than merely ensuring that patients have the financial resources. It also requires support with paperwork and personal barriers to treatment.

The right connections, such as those facilitated by a single digital platform, can help patients manage the effort required to get their medications as well.

In a 2022 study, Megan E. Peter and fellow researchers compared integrated health-system specialty pharmacies (IHSSPs) and limited distribution networks (LDNs). The researchers found that several factors, including communication with insurance companies and drug distributors, affected healthcare providers’ efforts to help patients obtain needed medications.

When communications are streamlined on a single platform, providers, pharmacies, manufacturers and patients can work together to find the most cost-effective way to get needed specialty drugs into patients’ hands — even when patients don’t have insurance coverage for the medication.

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