How to Use Patient Assistance Programs When No Generic Medication Exists

When a life-saving medication has no generic version, the price can feel impossible. Some drugs cost over $10,000 a month. For many people, that’s more than their rent. But there’s a way out: patient assistance programs (PAPs). These are free or low-cost drug programs run by drug makers, nonprofits, and sometimes states. They’re not magic, but they can turn an unaffordable bill into a $0 copay-if you know how to use them right.

Why PAPs Exist When No Generic Is Available

Generic drugs are cheaper copies of brand-name medicines. But not every drug has one. Some are too new. Others are too complex to copy. Think cancer drugs like Soliris, HIV meds like Truvada, or rare disease treatments like Tasigna. These drugs often cost $500,000 a year or more. Without generics, PAPs become the only real option for people who can’t pay.

Pharmaceutical companies started these programs decades ago during the AIDS crisis. Back then, drugs like Retrovir cost over $15,000 a year in today’s money. People were dying because they couldn’t afford treatment. PAPs were created to fill that gap. Today, over 1,500 such programs exist. In 2022 alone, they gave $4.7 billion in help to 1.2 million people-almost all of it going to brand-name drugs with no generic alternative.

How PAPs Actually Work

Not all PAPs are the same. There are three main types:

• Manufacturer programs (65% of all PAPs): Run by the drug company itself. These usually cover 100% of the cost if you qualify.
• Foundation programs (25%): Run by nonprofits like the Patient Access Network Foundation or the Chronic Disease Fund. They help people who don’t qualify for manufacturer programs.
• State programs (10%): Like PACE in Pennsylvania. These are usually for seniors and have lower income limits.

Most manufacturer PAPs require you to:

• Have no insurance or have insurance that doesn’t cover the drug
• Make less than 400% of the Federal Poverty Level (about $60,000 a year for one person in 2023)
• Be a U.S. citizen or legal resident
• Have a prescription from your doctor

You’ll need to submit proof of income (tax returns or pay stubs), your prescription, and sometimes a signed form from your doctor. Some programs ask for an insurance denial letter if you have coverage but it doesn’t cover the drug.

The Hidden Problem: Accumulator Adjustments

Here’s the catch. If you have commercial insurance, your PAP help might not count toward your deductible.

Pharmacy benefit managers (PBMs)-companies like Express Scripts and Optum-run most insurance plans. Since 2020, 78% of them have used something called “accumulator adjustment.” This means your PAP payment doesn’t count as part of your out-of-pocket costs. So even if your PAP covers your $12,000 monthly drug, you still have to pay your full deductible and out-of-pocket maximum separately.

One patient on Reddit shared: “My PAP covered my cancer drug, but UnitedHealthcare didn’t count it toward my $8,700 deductible. I paid $20,700 out of pocket before I hit my max.” That’s not a mistake. That’s policy.

If you have insurance, this can make PAPs useless. The solution? Look for foundation-based PAPs. They’re not tied to PBMs, so their help counts toward your deductible. Or switch to a plan that doesn’t use accumulator adjustments-though those are rare.

What About Medicare?

If you’re on Medicare Part D, you can’t use manufacturer PAPs anymore. A federal rule that took effect in January 2025 bans drug companies from giving copay assistance to Medicare patients.

That leaves only foundation PAPs and state programs as options. Programs like the Patient Access Network Foundation still help Medicare patients-but they have stricter income limits and fewer funds to go around. Some patients wait months for approval.

The good news? Some foundations now offer “bridge” assistance-small grants to cover costs while you wait for your main PAP to be approved.

How to Apply: A Step-by-Step Guide

Applying for a PAP is not easy. The average application takes 45 minutes to complete and requires 17 pieces of information. But here’s how to do it right:

1. Find the right program. Use RxHope’s free online screener. It checks 92% of manufacturer PAPs and tells you which ones you might qualify for.
2. Gather your documents. You’ll need: a copy of your most recent tax return or W-2, your prescription (on doctor’s letterhead), proof of residency, and your insurance card (if you have one).
3. Get your doctor’s help. Most programs require your doctor to sign a form. Ask your clinic if they have a medication access specialist. 68% of major hospitals now have these roles-and they handle 85% of PAP applications.
4. Submit and follow up. Manufacturer PAPs usually approve applications in 7-10 days. Foundation programs take 2-3 weeks. Call the program every 5 business days if you haven’t heard back.
5. Prepare for denial. 41% of first applications get rejected. Don’t give up. Appeal with updated documents or ask your doctor to write a letter explaining why the drug is medically necessary.

What Works Better Than PAPs?

Some people turn to discount cards like GoodRx. But here’s the truth: GoodRx saves you about 52% on generics. On brand-name drugs with no generic? It saves you 8.3%-on average.

For a $15,000-a-month drug, that’s $1,245 off. Still $13,755 to pay. PAPs? They can make it $0.

State programs like PACE cap assistance at $400 per drug per month. That’s helpful, but not enough for a $50,000-a-year drug. PAPs are the only option that can fully cover the cost.

Real Stories: What It Really Feels Like

One man with HIV shared on Reddit: “My drug cost $15,000 a month. Without the Gilead PAP, I’d have chosen homelessness over bankruptcy. My $0 copay kept my apartment.”

Another patient with chronic myeloid leukemia spent 11 hours over three weeks filling out forms for Novartis’s PAP. She nearly quit her drug because she couldn’t afford the $1,400 monthly copay. After approval, her cost dropped to $0. But she said: “The paperwork almost killed me.”

These stories aren’t rare. A 2022 study found patients using PAPs were 37% less likely to skip doses because of cost. That’s life or death.

What’s Changing in 2025 and Beyond

The system is changing fast. Drug companies are making PAPs easier. Eli Lilly’s “Simple Bridge” program cut its application from 17 steps to 5. Approval now takes 48 hours for insulin.

Electronic health records are starting to integrate PAP tools. Epic Systems rolled out a PAP module in 2024 that helps doctors check eligibility before prescribing.

But the big problem remains: drug prices keep rising. The Congressional Budget Office says PAP costs could grow 18% a year. At some point, drug makers may not be able to afford them.

The future may lie in “precision assistance”-where help is given only to patients who truly need it and will benefit most. Early trials show this boosts medication adherence by 22%.

What You Can Do Right Now

If you’re on a brand-name drug with no generic:

• Don’t assume you can’t afford it.
• Go to RxHope.org and use their free screener.
• Ask your doctor’s office: “Do you have a medication access specialist?”
• If you have insurance, ask them: “Do you use accumulator adjustments?”
• If you’re on Medicare, contact the Patient Access Network Foundation.
• Keep copies of every form, every email, every phone call.

PAPs aren’t perfect. They’re complicated. They’re inconsistent. But for people who need a drug with no cheap alternative, they’re often the only thing standing between them and giving up on treatment.

Frequently Asked Questions

Next Steps

If you’re struggling to pay for a brand-name drug with no generic:

• Visit RxHope.org and run the free screener.
• Call your doctor’s office and ask for the medication access specialist.
• If you’re on Medicare, contact the Patient Access Network Foundation at 866-316-7263.
• If you’re uninsured, check with your state’s pharmaceutical assistance program.
• Keep a folder with all your documents-this saves time if you need to reapply.

PAPs aren’t a fix for high drug prices. But for now, they’re the most reliable way to get the medicine you need when there’s no cheaper option. Don’t let complexity stop you. The paperwork is hard-but not impossible. And your health is worth the effort.