syringe-1884784_1920The patient journey can be a long and frustrating one, particularly for those with rare diseases who can wait an average of 7 years for a diagnosis. But for some, prescriptions are not the conclusion of their hardships, but the beginning. Where can patients with diseases and their families turn when their prescribed medications are beyond their means?

Patient Assistance Programs

Run as charities by pharmaceutical companies, Patient Assistance Programs (PAPs) offer free or discounted medications, usually for one year, to uninsured or underinsured US citizen who can demonstrate physical and financial need. Programs vary, but generally, a household income which lingers between 250% and 400% at or below the federal poverty line is eligible. Once approved, the medication relief usually lasts one year. Depending on the pharmaceutical brand, each drug under the company’s umbrella may have their own PAP eligibility and application requirements, which can feel daunting to a patient in need. Each program differs in regard to Medicare enrollees, though many will at least accept patients enrolled in Medicare Part D. Eligibility requirements per drug can be found on Medicare’s website. However, enrollees of Medicaid and Veterans Administration Benefits are ineligible for assistance.

Many major pharmaceutical companies have developed patient assistance charities to get their therapies in the hands of people who otherwise couldn’t afford them. The brands “donate” medications to the nonprofits, who then dispense the treatments to the approved patients who’ve been accepted to receive it. Unfortunately, these programs do have a finite patient membership for whom they can grant medication. Notable PAPs include Lily Cares Foundation, a charity which distributes medications by Eli Lilly and Company; the Johnson & Johnson Patient Assistance Foundation, which provides patients and hospitals with free therapies from Johnson & Johnson operating companies; and the Merck Patient Assistance Program gives free prescription drugs to patients who qualify.

The cost-burden of disease medications

In the 2016 report “The Burden of Medical Debt: Results from the Kaiser Family Foundation/New York Times Medical Bills Survey”, 52% of the 1,200 people surveyed report struggling to pay for prescriptions. The report reveals that 43% of insured policy holders unable to afford their medical bills “say there was a time in the past year when they or a family member did not get a recommended medical test or treatment because of the cost” and 41% of the insured participants with medical debt opted not to fill a prescription in the last year because the cost was too high, resulting in therapy nonadherence.

Even when medication is cost-effective, patients may still face high deductibles, expensive copays, and coinsurance which keep therapies out of reach. Nearly half of American workers had high-deductible plans last year, whereas 10 years ago that number was under 10%. Policyholders paid an average deductible of $2,241, and families an average of $4,343 before their insurance would cover health costs, not including copays.

Another reason for the payer cost-burden is the rise in medication pricing—prescription drugs have gotten increasingly expensive in recent years. Prescription spend for Americans younger than 65 years is expected to increase by 11.6 % in 2017, and by almost 10% for Americans aged 65 years or older. Drug costs for Americans younger than 65 years are expected to go up by 11.6 % in 2017, and by almost 10% for those aged 65 years or older.

Specialty drug cost spend in 2017 will increase to 35%, despite representing only 1% of medications, a 10% increase from 2015. The 2017 Segel Health Plan Cost Trend Survey reported “Between 2013 and 2014, actual drug cost trend nearly doubled from 5.5 percent to 10.7 percent, primarily because of the launch of new specialty drug options and brand-name drug price inflation. This was the largest single-year increase in actual prescription drug cost trend ever reported by the Segel Health Plan Cost Trend Survey.”

Patient support for improved adherence

Complications along the patient’s journey can impact therapy adherence. Average adherence rates for patients suffering rare diseases hover between 58-65%. When medications are too much of a financial strain, patients are sometimes forced to choose between their therapy and the other costs of living, or even bankruptcy. This can result in poor adherence and medication hoarding. According to a 2016 Quintiles/IMS report, patients who haven’t reached the deductible for their health plan “abandoned about one in four of their brand prescriptions.”

The best way brands and patient advocates can ensure positive patient outcomes is to champion them at the earliest possible stage. It’s proven that support systems improve activation, adherence, and benefit patient outcomes. Patient services can be a major part of this support  by providing disease education and therapy information to patients, as well as investigating and removing roadblocks to therapy, such as finding solutions for cost-prohibitive prescriptions tao ensure adherence. Some healthcare professionals are even receiving training to advocate for patients and help them through complicated financial challenges related to treatments. Guiding patients to medication assistance drives both patient and commercial success.