The multiple sclerosis (MS) community was excited when the US Food and Drug Administration (FDA) approved ocrelizumab (Ocrevus), an infusion medication, to treat relapsing-remitting and primary progressive MS in 2017. That excitement was tempered, though, when the price was revealed: $65,000 a year for two intravenous infusions six months apart.
Newly approved drugs often come with sky-high price tags. Another drug, nusinersen (Spinraza), approved in 2016 for treating spinal muscular atrophy type 2, costs $750,000 for the first year and $375,000 every year thereafter.
To help patients pay for pricey prescriptions, many companies offer patient assistance programs (PAPs). But drug industry watchdogs caution that while these programs help you pay less now, they may drive up prices in the long run. "The risk is that costs are inflated to compensate for lower co-pays," says Nicholas Johnson, MD, FAAN, vice chair of research and associate professor of neurology at Virginia Commonwealth University in Richmond. "A PAP may be great for one drug, but it will likely contribute to the overall increase in prices and mean that the next drug approved is even more expensive."
We spoke with medical and consumer experts to learn about navigating PAPs. Here's their advice.
- GO TO THE SOURCE. Contact the pharmaceutical company that makes your medication—you can find contact information on the brand's website. These businesses may offer co-pay discount cards (in hand or via phone apps); financial assistance for low-income clients (you may have to provide your tax return); and live support telephone lines. For example, the website for ocrelizumab has a Patient Assistance Tool and an interest-free Mastercard debit card for co-payments. Once your insurance benefits are determined, the money is deposited into the account.
- ASK FOR HELP AT THE DOCTOR'S OFFICE. Your doctor's staff can guide you to drug company contact information or provide co-pay savings cards. In some circumstances, they might be able to provide a starter drug sample at no cost (although not for a drug like ocrelizumab, which is administered intravenously).
- VISIT SUPPORT WEBSITES. "The National MS Society website is a good resource for drug-specific PAPs," says Daniel Hartung, PharmD, MPH, associate professor at Oregon Health & Science University/Oregon State University College of Pharmacy in Portland, whose research focuses on the cost of MS drugs. The Parkinson's Foundation and Alzheimer's Association are good sources too; search the word "medications" on their websites.
- BE PREPARED FOR RESTRICTIONS. "PAPs frequently cover co-payments, but people with public insurance [Medicare or Medicaid] are usually not eligible," says Dr. Hartung. Patients with health insurance purchased through the market are generally eligible for PAPs, but this is determined on a case-by-case and brand-by-brand basis, so you may need to make phone calls to find out.
- SHOP AROUND. Talk to your doctor about whether the drug you need is available as a generic, which is usually substantially cheaper, and whether you are a candidate for it. For example, says Dr. Hartung, "glatiramer acetate [an injectable generic for Copaxone] is now the lowest-cost MS product by a wide margin." If you have a high prescription deductible, this could lower your out-of-pocket costs. Costco and supermarket chains often have the best pricing on medications; call ahead to get a quote from the pharmacy, and be sure your co-pay discount card is accepted. "I have seen price differences of hundreds of dollars, even among the major pharmacy chains," says Richard J. Sagall, MD, a retired physician in Gloucester, MA, and president of NeedyMeds, a nonprofit organization designed to assist eligible people in finding programs that help them pay for drugs and other healthcare-associated costs.
- GET THE BEST DISCOUNT. Visit NeedyMeds for a free drug discount card—in plastic, a paper printout, or via a smartphone app. You must pay cash when using the card, and it can't be combined with insurance or any state or federal program, but it may offer a better price than your insurance. The site also has a list of almost 2,000 organizations that help patients find and apply to PAPs free of charge.
- READ THE FINE PRINT. The PAP for siponimod (Mayzent), an oral medication that was approved earlier this year to treat MS, states that it cannot be combined with any third-party rebate, coupon, or offer. Separately, the manufacturer's patient program, Alongside MS, can sometimes provide free starter medication to eligible patients.
- BEWARE OF SCAMS. "Never pay for a drug discount card or a service that helps you apply to PAPs—no legitimate card has a fee," Dr. Sagall warns. "And don't believe any service or company that says it can get all your drugs for free." Also, be cautious about what personal information you provide, as card companies could sell it and compromise your privacy.
- KNOW THE CAVEATS. Check to see if, and when, the co-pay discount expires. Otherwise, you may find yourself taking a drug you can't afford in the long run. "If the co-pay offer is for a limited time, it can drive up your spending. It also may force you to use nonpreferred therapies, which will increase overall cost and potentially even insurance premiums," Dr. Hartung says. In addition, a PAP can be discontinued if the drug is sold to another company that doesn't offer one, says Dr. Sagall.