It’s an unfortunate truth that although incredible progress has been made in discovering new medications to treat rare diseases in the last two decades, their high cost can frequently be unattainable for patients who need them most. A review of the numbers illuminates the situation: costs for ‘orphan drugs,’ used to treat conditions or diseases that affect less than 200,000 people in the U.S., are much higher than traditional drugs. From 1998 to 2017, the average per-patient annual costs for orphan drugs increased 26-fold while other drug costs merely doubled. So it’s not surprising that by 2018, an orphan drug’s average annual cost was $150,854 compared to $33,654 for a non-orphan drug.
In the face of these concerning statistics, it is essential for physicians, pharmacists and other healthcare professionals – all committed to ensuring the best possible outcomes for their patients – to be aware of several highly effective, proven ways to drive down patients’ out-of-pocket expenses for specialty drugs. Patient Assistance Programs (PAPs) are available to cover many patient situations – uninsured, underinsured, commercially insured, publicly insured – and provide access to these life-changing medications.
- Manufacturer Co-pay Assistance: Specialty drug manufacturers also provide help to commercially insured patients through their Co-Pay Assistance programs. Most important to note is that eligibility for these programs is not generally centered on income, but solely on whether the patient’s insurance plan includes a co-pay, deductible or co-insurance. Many patients, who are employed or fall squarely in a middle- income bracket, may not realize they qualify for these types of programs which can be used regardless of their financial status and do not require any type of qualification to receive assistance beyond having a co-pay, deductible or co-insurance expenses.
- Manufacturer PAP: A number of specialty drug manufacturers offer free or discounted medications to patients with inadequate or no insurance. Patients should check the manufacturer’s website or call for an application; most will need a doctor’s signature for final approval. Requirements and income qualifications vary, and enrollment decision rests solely with the individual manufacturer.
- Non-profits and Patient Assistance Foundations: For patients insured by federal or state government programs such as Medicare/Medicaid, Federal Employee Programs (FEP) and TRICARE, financial assistance is available through a growing network of disease-specific 501c3 organizations that are funded through donations. In addition to helping defray the cost of specialty medications, these dedicated groups offer patients support with infusion nursing, other disease management expenses including reimbursement for co-payment or health insurance premiums, and ancillary costs such as treatment-related travel, diagnostic and genetic testing, durable medical equipment. Eligibility for their programs is income-driven, but the thresholds are generous – typically five to seven times over the Federal Poverty Level – and also depend on other factors such as state of residence, number of people in the household, drug needed and patient’s diagnosis. Again, patients may be reluctant to apply, feeling as if their income level makes them ineligible for these programs but they may actually qualify for valuable assistance. Also important to remember: opportunities for financial aid are time-sensitive because support is made available as donations are received. Patients should be prepared to apply promptly when notified that funding has opened up for their specific disease.
Some of the most well-known 501c3 programs include:
- National Organization for Rare Disorders (NORD): For more than three decades, NORD has provided patients with medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists. The new Rare Disease Educational Support Program helps patients with reimbursement for instructional workshops, nutrition classes and conferences, and limited assistance for travel and lodging costs. NORD’s unique Respite Program, designed for caregivers of a child or adult diagnosed with a rare disorder, offers qualified applicants financial aid to attend a conference, event or simply take a break from caregiving responsibilities for an afternoon or evening.
- Patient Access Network Foundation (PAN): Established in 2004, PAN has provided $4 billion in financial assistance to nearly one million underinsured patients with almost 70 disease-specific programs.
- The Assistance Fund (TAF): Since 2009, TAF has helped nearly 135,000 children and adults access FDA-approved medications to treat over 70 life-threatening or rare diseases.
- Patient Services, Inc. (PSI): Founded in 1989, PSI delivers financial support and guidance for qualified patients with rare diseases. Services include assistance with costs for health insurance premiums, pharmacy and treatment co-payments, infusion and nursing services and travel related to medical care.
- HealthWell Foundation: Since 2004, HealthWell has awarded over $2.1 billion in assistance to more than 615,000 patients to help cover the cost of prescription drug coinsurance, co-payments, deductibles, health insurance premiums and other out-of-pocket health care expenses.
These disease advocacy organizations, as well as your specialty pharmacy, serve as excellent sources of information and guidance with financial assistance, and have made numerous strides in helping remove cost barriers and improving access to vitally needed orphan drugs. Even patients with good healthcare insurance may need help relieving the financial burden of costly treatment regimens for lifelong conditions.
However, the process is often complex and time-intensive and can be daunting to patients already overwhelmed by coping with the physical effects of a rare disease. Thoughtful, expert guidance is key to identifying, enrolling and following up with the appropriate programs, and an essential part of services offered by leading specialty pharmacies. At Orsini, our emphasis goes well beyond the traditional, with highly personalized support for patients seeking financial assistance. As the Patient Assistance Liaison, my sole focus is on opening the door to any and all sources available for financial assistance. I work with each patient individually to identify every possible avenue for financial assistance, help them quickly and easily enroll (and re-enroll when needed) in appropriate programs, monitor and recommend new funding opportunities, and ensure maximum benefits are received. Every interaction provides fresh inspiration, from helping a patient receive their vitally needed medication and get co-pay coverage while awaiting Medicaid approval, to restoring the services of a favorite infusion nurse for a patient whose request had been turned down by their current insurer. Professionally and personally, there is no greater satisfaction than connecting with patients and helping them navigate programs that can make an enormous difference in their lives.
Learn more about how Orsini Specialty Pharmacy can help match your patients with the best available programs for managing their medication costs and ensuring continuous coverage. Our dedicated team of experts facilitates and simplifies the process by offering an individualized approach to enroll patients in manufacturer-specific programs and non-profit foundations for assistance with medication co-pays, nursing support and other treatment-related expenses.