A series
Your first 90 days on a rare disease drug
You have the prescription. Now there is a form to sign, a test to get, an insurer to convince, a pharmacy that will call, and a date when the dose changes. These pages put those steps in order for one drug at a time, with the day each one lands and the number to call when it stalls.
Each page is built from 3 kinds of document and nothing else: the FDA label and its revision history, the drugmaker's own support program, and one insurer's written coverage rules. Type the date of your first dose and the days become real dates you can add to your calendar. Nothing on these pages is medical advice.
Why Trial Friend built first 90 days pages for rare disease drugs
- The first fill is where treatment most often stops before it starts, and the evidence for that is better than most people expect.
- In a 2018 study of 38,111 people given a new prescription for an oral cancer drug, about 10% never picked it up when their share of the cost was $10 or less. Above $2,000, 49.4% never did.
- Those drugs go through the same specialty pharmacies, prior authorizations and support programs as the drugs on this site.
- Cost is not the only reason. A 2010 study of 195,930 electronic prescriptions found 28% of new prescriptions were never filled at all.
- IQVIA reported that in 2024 about 40% of new specialty patients were lost to insurer rejections that were never resolved.
- The rest is a form that was not signed, a test that was not sent, or a call that was missed. These pages list each step in order, with the number that fixes it.
- Each page is built from 3 documents and nothing else: the FDA label and its revision history, the drugmaker's own support program, and one insurer's written coverage rules.
Sources: Doshi JA et al., J Clin Oncol 2018;36(5):476 · Fischer MA et al., J Gen Intern Med 2010;25(4):284 · IQVIA, Beyond payer rejections, 2026. Figures are for oral cancer drugs and all new prescriptions, not for any drug on this site.
The pages so far
The evidence
The costlier the prescription, the emptier the doorstep
In a study of 38,111 people handed a new prescription for an oral cancer drug, 1 in 10 never picked it up when their share of the cost was $10 or less. Above $2,000, 1 in 2 never did. Those drugs travel the same road as the drugs on this site, through the same specialty pharmacies, prior authorizations and support programs.
Doshi JA et al., J Clin Oncol 2018;36(5):476. Medicare and commercial plans, 2014 to 2015. Oral cancer drugs, not any drug on this site.
Questions people ask about starting a rare disease drug
What is a first 90 days page?
A guide to the stretch between a prescription for one rare disease drug and a settled routine on it: the forms, tests and approvals that come before the first fill, the days when the dose changes or a refill is due, the label's rules for taking it, the symptoms the label says to act on, why a pharmacy or insurer says no and who fixes it, and the drugmaker's support line. Trial Friend has 4 so far: Fabhalta, Camzyos, Tarpeyo, Filspari.
Where do the dates and rules on these pages come from?
Three documents and nothing else: the drug's current FDA label and its revision history, the drugmaker's own patient support program as published on its site, and one public insurer prior authorization policy. Each page names the label date it was checked against and the day it was checked.
Can I add the dates to my calendar?
Yes. Type the date of your first dose on any page and the day tiles become real dates. The calendar button downloads a file that Apple, Google and Outlook calendars open, with a reminder the day before each date. The date you type stays on your device and is not sent to Trial Friend.
Why does the first fill of a specialty drug take so long?
Most of these drugs ship only from a certified specialty pharmacy after a prior authorization, and some wait on a blood test, a vaccine or a signed safety-program form before the pharmacy is allowed to dispense. IQVIA reported that in 2025 only 30% of new brand-name prescriptions for commercially insured patients were approved within 7 days. Each page lists what its drug waits on.
How do refills work for a rare disease drug?
Most of these drugs ship 30 days at a time from a specialty pharmacy, which calls before each refill to confirm the address and a delivery window, and a missed call can mean a missed shipment. Some refills also wait on a test: Filspari ships only once the REMS shows the liver test due every 3 months, and Camzyos only after the REMS authorizes the fill following each required echocardiogram, with no more than a 35-day supply at a time in the first year. Each page puts the refill dates, and the test each one waits on, on its calendar.
Is this medical advice?
No. These pages explain what the FDA label, the drugmaker's program and an insurer policy say, so you can ask your prescriber and pharmacist better questions. Dosing, test timing and restarts after a gap are decisions for the prescriber.
More drugs are added as they are checked, starting with the ones whose first months carry a REMS, a required test, a dose step or a single pharmacy. If the drug you are starting is not here, its drug page still carries the label's dosing, side effects and the maker's support program, and the help paying page lists the funds that are open.