The front steps in the photo above are empty, and for a specialty drug that is the whole story. Nobody picks these medicines up at a counter. They come from a specialty pharmacy, often one certified under an FDA safety program called a REMS. The box ships only after a form is signed, a test comes back, an insurer says yes and a phone call is answered. When any one of those does not happen, the steps stay empty and the prescription expires on its own. The studies on how often that happens are large, consistent and rarely shown to the people they are about.
This post is for someone who has just been handed a prescription for a drug like Filspari, Camzyos or Fabhalta, or for the family member who ends up managing the pharmacy calls. It covers what the data say about where new prescriptions are lost, why cost is only part of it, and what the 2 weeks after the prescription can change. None of it is medical advice, and none of it is about whether to take a drug. It is about getting the one your doctor already chose to the door.
Where Do 100 New Specialty Prescriptions Go?
IQVIA, a company that tracks prescriptions across the United States, published the clearest version of this in September 2026. Among people prescribed a specialty drug for the first time in 2024, 40% were lost to insurer rejections that were never overturned. Of the 60 in 100 that were approved, only 47% were picked up at the pharmacy, which is about 28 of the original 100. IQVIA adds that beyond the first fill, only 13% of patients remain on therapy after a year.
Two things in that chain matter for a rare disease family. The first is that the biggest single loss happens before the pharmacy is involved at all, at the insurer, and the prescriber's office is the party best placed to fix it. The second is that even after an approval, more than half of people never collect the drug. That second step is the one this post is about, because it is the one a patient and a caregiver can do the most about.
IQVIA's same report says that in 2025 only 30% of new brand-name prescriptions for commercially insured patients were approved within 7 days of being written, down from more than half in 2018. A week of silence after a prescription is now the normal case, not a sign that something went wrong.
Is Cost the Reason Prescriptions Are Never Filled?
Cost is the best-measured reason, and the numbers are steep. In these studies a prescription counts as abandoned when the pharmacy filled it and nobody came for it. A 2018 study by Doshi and colleagues in the Journal of Clinical Oncology covered 38,111 people with Medicare or commercial insurance. Each had been given a new prescription for one of 38 oral cancer drugs in 2014 or 2015. When the patient's share of the cost was $10 or less, about 10% never picked the drug up. Between $100 and $500 it was 31.7%. Between $500 and $2,000 it was 41%, and above $2,000 it was 49.4%.
Those are oral cancer drugs rather than rare disease drugs, but they travel the same road, with specialty pharmacies, prior authorizations and drugmaker copay programs. IQVIA's wider figures point the same way. In its 2020 report on patient costs, the abandonment rate was under 5% when a prescription had no out-of-pocket cost. It was 45% when the cost was over $125 and 60% when it was over $500.
Price is not the whole explanation, though, and the evidence for that is just as old. Fischer and colleagues looked at 195,930 electronic prescriptions sent to pharmacies over 12 months and found that 28% of prescriptions for a new medicine were never filled at all. IQVIA adds that even among commercially insured patients paying nothing out of pocket, the share who come back for a second month's fill in some chronic conditions can be as low as 60%. The rest is friction, which means a form, a test or a call that nobody dealt with, and friction is where the next section goes.
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What Stops a Rare Disease First Fill, Step by Step?
The 4 drugs Trial Friend has mapped so far show that the gate is different every time, and that none of it is written on the prescription. Filspari for IgA nephropathy cannot ship until a liver test is recorded in its REMS, the FDA safety program that tracks the drug, and 2 enrollment forms are signed. The dose then steps up on day 15, which means a second strength has to arrive on time. Tarpeyo has no REMS and no test, but only one pharmacy in the country dispenses it, so a prescription sent anywhere else goes nowhere until someone notices.
Camzyos for obstructive hypertrophic cardiomyopathy waits on an echocardiogram, an ultrasound of the heart, showing that it pumps strongly enough, and a signed REMS form. The label adds a pregnancy test for anyone who can become pregnant, and the pharmacy then checks with the REMS before every single fill. Fabhalta waits on 2 vaccines given at least 2 weeks before the first dose, and the pharmacy has to document with the prescriber that they happened.
Each of those is a place where a prescription can sit for weeks without anyone being at fault. The liver test was drawn but never sent to the REMS. The echo was done, but the result never made it onto the REMS form. The vaccine was given at a pharmacy that did not tell the nephrologist. The specialty pharmacy called from an unfamiliar number and the call went to voicemail twice. IQVIA's rejection figure is the insurer's part of the story, and these are the rest.
What Can a Patient Do in the 2 Weeks After the Prescription?
The useful question to ask before leaving the appointment is which pharmacy will fill this and what it needs from me before it can ship. For a REMS drug the answer is a test or a form. For a single-pharmacy drug it is the name of that pharmacy. For a vaccine-gated drug it is a date. The prescriber's office knows the answer, and the drugmaker's support line knows it in more detail, because walking people through the first fill is most of what those lines do.
Enrolling in the drugmaker's support program on the same day as the prescription is the second step, and it is the one that unlocks the most help. Every drug in Trial Friend's series has one, with a copay program for commercial insurance that brings the cost to $0, or $10 in Camzyos's case. Two of the 4 have a bridge that ships the drug free while the insurer is still deciding. Novartis's program for Fabhalta goes as far as sending a clinician to give the required vaccines at home. These programs are not charity and they are not neutral, since the maker wants the prescription filled, but on the first fill the interests line up.
The third step is the phone. Specialty pharmacies and support programs call from numbers nobody recognizes, and an unanswered call is the most ordinary way a first fill stalls. Saving the pharmacy's number and the support line's number before the first call comes is a small thing that the pages in the series list for exactly that reason. The fourth is to ask, on day 10 or so, where the prior authorization stands. A week of silence is now the normal case, and a second week is when the bridge programs start to matter.
- Before leaving the appointment, ask which pharmacy fills it and what it needs before it can ship.
- Enroll in the drugmaker's support program the same day, and ask about the copay program and any bridge supply.
- Save the specialty pharmacy's number and the support line's number so the first call is not missed.
- Around day 10, ask the office where the prior authorization stands and whether anything is missing.
- If a plan says no, ask whether it is a routing problem, a missing document or a real denial, because each has a different fix and only the last one needs an appeal.
People on Medicare or Medicaid face a harder version of this, because federal anti-kickback rules keep the drugmaker copay programs from covering them, and the bridge programs are usually for commercial insurance only. The charity funds on the help paying page open and close through the year, and the condition-by-condition pages there list which ones are taking applications.
Where to Find Each Drug's First Fill, Mapped
The front steps in the photo stay empty only when nobody knows what the box is waiting on, and that is the gap the first-90-days series is built to close. It will grow as drugs are checked, starting with the ones whose first months carry a REMS, a required test, a dose step or a single pharmacy. Each page carries a date picker that turns the days into real dates on a calendar and a signup that emails you only when that drug's label changes. Each also links to the trials recruiting for the same condition.
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Questions People Ask About Getting a New Prescription Filled
Why has my specialty pharmacy not called about my prescription?
Most often because the prior authorization is still pending. The other common reason is that something the pharmacy needs before it can ship has not reached it, such as a lab result, a REMS form or a vaccination record. IQVIA's 2026 report found only 30% of new brand-name prescriptions for commercially insured patients were approved within 7 days in 2025, so a week of silence is common. Calling the prescriber's office and the drugmaker's support line is the fastest way to find which it is.
What percentage of prescriptions are never filled?
In a widely cited study, Fischer and colleagues found 28% of new prescriptions sent electronically to pharmacies were never filled. For costly drugs the share is higher. Doshi and colleagues found 49.4% of oral cancer prescriptions with an out-of-pocket cost above $2,000 were abandoned, against about 10% when the cost was $10 or less.
What is a bridge program for a prescription drug?
A drugmaker program that supplies the drug free for a set period while the insurer is still deciding. It is usually only for people with commercial insurance, and usually only once a prior authorization or appeal has been filed. Novartis offers up to 12 months for Fabhalta and Bristol Myers Squibb supplies Camzyos free after a 5-day coverage delay, with conditions on both. The drug page for each medicine on Trial Friend lists the program and its terms.
Can I get a specialty drug at my regular pharmacy?
Usually not. Drugs under a REMS can be dispensed only by certified pharmacies, and some, such as Tarpeyo, are sold through a single specialty pharmacy nationally. The prescription is sent there by the prescriber's office and the drug is delivered to your home.
Does the drugmaker's copay program work with Medicare?
No. Manufacturer copay programs exclude Medicare, Medicaid, TRICARE and other government insurance, because federal anti-kickback rules bar them. People on those plans are usually pointed to the maker's patient assistance foundation or to independent charity funds, which Trial Friend lists by condition on its help paying page.