When a rheumatologist prescribes Humira instead of a biosimilar, or an oncologist insists on Ocrevus over a cheaper alternative, it’s not because they’re ignoring cost. It’s because the stakes are higher than most people realize. Specialty drugs aren’t just expensive-they’re complex, life-altering, and often the only option for patients with rare or chronic conditions. And when specialists choose brand-name drugs, it’s rarely about profit. It’s about survival.
What Makes a Drug ‘Specialty’?
A specialty drug isn’t defined by how it’s made, but by how it’s used. These medications treat conditions like multiple sclerosis, rheumatoid arthritis, cancer, and rare genetic disorders. They’re not pills you pick up at your local pharmacy. Most require injection or infusion. Many need refrigeration. Some need special training just to administer. And they’re costly-often more than $670 a month, with many costing over $100,000 a year per patient.In 2021, specialty drugs made up just 6.2% of all prescriptions but accounted for 71.1% of total prescription drug spending in the U.S. That’s not a typo. Less than 1 in 16 prescriptions drove nearly three-quarters of the bill. The average annual cost per specialty patient? $38,000. For non-specialty drugs? $492. That’s a 75-fold difference.
These drugs aren’t just expensive-they’re concentrated. The top 10 specialty drugs in Medicare Part D made up just 0.3% of all covered drugs but 22% of total spending. And they’re growing. By 2023, specialty drugs accounted for 68% of all dispensing revenue from specialty medications. By 2028, experts predict they’ll make up 73% of global prescription drug spending.
Why Don’t Doctors Just Switch to Cheaper Alternatives?
The assumption is simple: if a generic or biosimilar exists, why not use it? But for many specialty drugs, the answer isn’t that simple.Biosimilars-generic versions of biologic drugs-are not identical to their brand-name counterparts. They’re highly similar, but not the same. For a patient with a rare mutation in their MS, switching from Ocrevus to a biosimilar might mean a flare-up, hospitalization, or permanent nerve damage. One patient on Reddit wrote: “My specialist says there are no alternatives that work as well for my specific mutation.” That’s not anecdotal-it’s clinical reality.
Studies show that when prescribers or patients request brand-name drugs over generics, it costs Medicare $1.67 billion and patients $270 million annually. But those numbers don’t capture the risk of switching. A 2023 Medscape survey found that 68% of specialists face constant frustration with prior authorizations for specialty drugs. Oncologists and rheumatologists report the highest rates-82% and 79%, respectively. When a doctor spends 13.4 hours a week just on paperwork just to get a drug approved, they’re not doing it because they enjoy bureaucracy. They’re doing it because the alternative is worse outcomes.
The Role of Patient and Provider Pressure
It’s not just doctors deciding. Patients ask. And they’re not wrong to.Many patients have been on a brand-name drug for years. It works. Their body knows it. They’ve built a routine around it. When a plan changes formulary and suddenly their $50 copay jumps to $850, they panic. They call their doctor. They beg. And often, the doctor listens-not because they’re paid off, but because they’ve seen what happens when patients stop.
One Medicare enrollee wrote: “My Humira copay went from $50 to $850 per month when my plan changed formularies, and my rheumatologist says biosimilars aren’t appropriate for me.” That’s not resistance. That’s damage control.
And yes, financial ties exist. A ProPublica analysis found that doctors who received over $5,000 from drug companies in 2014 prescribed brand-name drugs at a rate 50% higher than those who received nothing. But correlation isn’t causation. Many of those payments were for education, research, or speaker fees-not kickbacks. The bigger issue? The system rewards brand loyalty because the alternatives are unreliable.
The PBM Problem
The real villain isn’t always the drugmaker. It’s the middlemen.Pharmacy Benefit Managers (PBMs)-Caremark, Express Scripts, OptumRx-control 68% of specialty drug dispensing. And they’re making money off generics too. The Federal Trade Commission found that PBMs marked up specialty generic drugs by thousands of percent. One drug bought for $100 was sold to patients for $5,000. That’s not a pricing error. That’s a business model.
These markups don’t help patients. They don’t help insurers. They just inflate costs. Dr. Stephen Schondelmeyer, a pharmacy professor at the University of Minnesota, called it “a fundamental distortion in the drug pricing system.” And he’s right. While traditional generics drive prices down through competition, specialty generics are being exploited to drive prices up.
The FTC reported that between 2017 and 2021, the Big 3 PBMs generated over $7.3 billion in revenue from dispensing drugs above their actual acquisition cost. That’s not profit from efficiency. That’s profit from opacity.
What’s Changing?
The system is under pressure-and change is coming.The Inflation Reduction Act of 2022 gave Medicare the power to negotiate prices for some high-cost drugs. Drugs like Jakafi, Ofev, and Xtandi are already on the list. That could lower prices for thousands of patients.
In March 2025, CMS proposed new rules requiring PBMs to disclose their pricing practices. If implemented, it could force transparency on those $7.3 billion in hidden markups. Senator Bernie Sanders introduced the Specialty Drug Price Transparency Act in February 2025 to directly target the 42% annual growth rate in PBM excess revenue.
At the same time, the pipeline is exploding. The FDA’s Office of Orphan Products Development reports over 2,700 investigational specialty drugs in development, 45% targeting rare diseases. That means more options-but also more complexity and higher costs.
What Patients and Providers Can Do
Patients aren’t powerless. If you’re on a specialty drug:- Ask if a biosimilar is an option-and if not, why.
- Check if your manufacturer offers patient assistance programs. In 2023, NORD helped 45,000 patients access specialty drugs for free or at low cost.
- Request a prior authorization appeal if your plan denies coverage.
- Work with a specialty pharmacy. They’re trained to handle complex logistics and can often get you drugs faster than a regular pharmacy.
For providers:
- Document clinical necessity clearly. A vague note won’t cut it. Use specific diagnostic codes and treatment history.
- Know your specialty pharmacy networks. Enrollment can take 2-4 weeks-don’t wait until a patient needs the drug.
- Use patient support services. Many drugmakers offer nurses, financial aid, and adherence programs.
The Bigger Picture
Specialty prescribing isn’t about greed. It’s about a system that’s broken. Drugmakers set prices with little competition. PBMs hide markups. Insurers shift costs to patients. And doctors are stuck in the middle, trying to keep people alive while navigating a maze of bureaucracy.When a specialist chooses a brand-name drug, they’re not ignoring cost. They’re choosing the least bad option in a system with no good ones. Until we fix the pricing, distribution, and transparency issues, this will keep happening. And patients will keep paying the price.
Why do specialists prefer brand-name drugs over generics?
Specialists often choose brand-name drugs because many specialty conditions-like rare forms of MS or rheumatoid arthritis-have no proven alternatives. Biosimilars are similar but not identical, and switching can trigger disease flare-ups, hospitalizations, or irreversible damage. For patients who’ve been stable on a brand-name drug for years, the risk of switching often outweighs the cost savings.
Are specialty drugs really that expensive?
Yes. In 2021, specialty drugs accounted for just 6.2% of prescriptions but 71.1% of total U.S. prescription drug spending. The average annual cost per specialty patient is $38,000-75 times higher than non-specialty patients. Some drugs cost over $100,000 a year. The top 10 specialty drugs made up only 0.3% of covered drugs but 22% of Medicare Part D spending.
Do pharmaceutical companies influence doctors’ prescribing habits?
Some do. ProPublica found that doctors receiving over $5,000 from drug companies in 2014 prescribed brand-name drugs at a rate 50% higher than those who received nothing. But the bigger issue is the lack of alternatives. Even without payments, many doctors have no choice but to prescribe brand-name drugs because biosimilars aren’t clinically equivalent for their patients’ specific conditions.
What role do pharmacy benefit managers (PBMs) play in high drug prices?
PBMs control the distribution of specialty drugs and often mark up prices dramatically. The FTC found that PBMs marked up specialty generic drugs by thousands of percent. Between 2017 and 2021, the three largest PBMs-Caremark, Express Scripts, and OptumRx-made over $7.3 billion in revenue above the actual cost of the drugs. These markups are hidden from patients and payers, driving up costs without improving care.
Can patients get help paying for specialty drugs?
Yes. Many drug manufacturers offer patient assistance programs, copay cards, or free drug programs for eligible patients. Nonprofits like the National Organization of Rare Disorders (NORD) helped 45,000 patients access specialty drugs in 2023. Specialty pharmacies can also help navigate financial aid and insurance appeals. Patients should always ask their doctor or pharmacist about available support.
Specialty drugs aren’t going away. Their use is growing. So is the pressure on patients, providers, and payers. The solution won’t come from blaming doctors. It will come from fixing the system that forces them into impossible choices.
Brian Bell
November 13, 2025 AT 01:57