How I save money on my prescriptions

This is a composite story, drawn from common experiences shared in the schizophrenia community. It does not depict a real individual.

I am 44, a man, and I live in St. Louis. I have schizoaffective disorder, bipolar type. My medication regimen is a brand-name antipsychotic, a mood stabilizer, an SSRI, a blood pressure medication that counteracts a side effect of one of the antipsychotics, and a sleep medication. I am on Medicare with a Part D plan, which sounds like good coverage and in some ways is. Two years ago my monthly out-of-pocket cost for medications was about $480. This year it is about $42. None of the savings were magic. All of them were phone calls. I want to write about exactly what worked, because I cannot find this written down anywhere in one place.

The starting picture

The biggest cost was the brand-name antipsychotic, which had no generic. It was costing me roughly $320 a month after insurance. The mood stabilizer was $45. The SSRI was generic and cheap, $4. The blood pressure medication was $18. The sleep medication was a brand-name one, $90. Plus copays for psychiatry, copays for therapy, lab work, and the ordinary cost of being middle-aged. The numbers added up to a level that was forcing me to choose between medication and the rest of my life.

Step 1: Talked honestly with my psychiatrist

The first thing I did, on advice from a NAMI peer support group, was tell my psychiatrist exactly how much I was paying. I had been embarrassed about it. He had no idea — he had been writing the prescriptions assuming my insurance covered most of it. Once he knew, he sat down with me for forty-five minutes and we went through the list one drug at a time.

What came out of that meeting:

• Sleep medication. He switched me to a generic alternative that worked just as well for me. Cost dropped from $90 to $7.
• SSRI. Already cheap. No change.
• Blood pressure medication. Switched from one generic to another that was on more formularies. Cost dropped from $18 to $4.
• Mood stabilizer. Switched to extended-release generic. Cost dropped from $45 to $12.
• Brand-name antipsychotic. The conversation was harder. There was no generic. He was not willing to switch me back to an older drug because the side effects had been bad. We agreed to look at patient assistance programs.

That single conversation cut my bill by more than a hundred dollars before I had touched anything else. The lesson: prescribers usually want to help with cost. They cannot help with what they do not know.

Step 2: Patient assistance program

The brand-name antipsychotic was made by a manufacturer that runs a patient assistance program (PAP). Most of the major pharmaceutical companies do — see the Medicine Assistance Tool for a searchable directory. I qualified based on income (Medicare beneficiaries on Part D often qualify even at moderate incomes through the Extra Help program, which I will get to).

The application was three pages long. It required:

• Proof of income (a previous year's tax return).
• A copy of my insurance card.
• A signature from my prescriber.
• A statement that I had been turned down or could not afford the medication through standard channels.

It took my psychiatrist's office about a week to process their part. The PAP took about six weeks. After that, the medication was shipped to my doctor's office every 90 days at no cost to me. Cost dropped from $320 to $0. The application has to be renewed every year. The renewal is much shorter than the initial application.

Step 3: Extra Help (Low-Income Subsidy)

Through a chance conversation with a NAMI volunteer, I learned about the Medicare Part D Extra Help program, also called the Low-Income Subsidy. It dramatically reduces Part D premiums, deductibles, and copays for people whose income and resources fall under certain limits. The limits change each year. I had assumed I would not qualify because I am working part-time. I was wrong. I qualified for partial Extra Help.

Extra Help cut my Part D premium from $42 a month to about $15. It also reduced my copays for the generics I was still paying for. The application is online at the Social Security Administration website and took me about an hour. The decision came back in about three weeks.

Step 4: GoodRx and pharmacy shopping

For the medications that were not covered by my insurance favorably or by the PAP, I started using GoodRx to compare cash prices across pharmacies. Two surprises:

• The cash price with a GoodRx coupon was sometimes lower than my insurance copay. For one medication, my insurance copay was $25; the GoodRx cash price was $9. The pharmacist will run whichever is cheaper if you ask.
• Different pharmacies in the same zip code had price differences of more than 50% for the same generic. I switched to a less convenient pharmacy that was significantly cheaper for one of my drugs.

For people without insurance, the cash-price route through GoodRx, Cost Plus Drugs, or similar programs is sometimes the only way generics become affordable.

Step 5: 90-day mail order

My Part D plan offered a 90-day supply through mail order at a reduced copay compared to monthly pickup at the pharmacy. Switching the long-term medications to mail order saved me roughly $20 a month and one trip to the pharmacy.

Step 6: Used the NAMI helpline

I called the NAMI HelpLine twice during this process. Both times the volunteer pointed me to a resource I had not known about — first the manufacturer's PAP application form, second a state-level pharmaceutical assistance program in Missouri that gave me a small additional subsidy. Calling NAMI was free, and it shortened the time I spent searching by weeks.

The numbers, today

• Brand-name antipsychotic: $0 (PAP)
• Generic mood stabilizer (mail order, 90-day): $9 a month equivalent
• Generic SSRI: $4
• Generic blood pressure: $4
• Generic sleep medication: $7
• Other small copays: ~$18

Total: about $42 a month. Down from $480.

What I learned

• Tell your prescriber the actual cost. They cannot fix what they do not know.
• Search the manufacturer's website for "patient assistance" for any brand-name medication you are on. Most have a program.
• Apply for Extra Help if you are on Medicare, even if you think you make too much. The thresholds are higher than people assume.
• Use GoodRx to compare cash prices. Sometimes cash beats insurance.
• Switch to 90-day mail order for stable medications.
• Call NAMI. Use the resources that exist.

None of this is a substitute for systemic change. The fact that I had to spend nine hours of phone calls over two months to make my medication affordable is, on its own, a story about a broken system. But within that system, the savings are real, and the steps are concrete. Save this list. You can use it too.

For more, see patient assistance programs for antipsychotics, how to appeal an insurance denial, and Medicare and schizophrenia.

This article is for educational purposes only and is not medical advice, diagnosis, or treatment. Always consult a qualified mental health professional. If you or someone you know is in crisis, call or text 988 in the US, or your local emergency number.