The Most Expensive Conditions May Cost Patients Nearly $1,700 Out of Pocket Per Prescription

New data from GoodRx reveals staggering out-of-pocket costs for some conditions, with patients paying nearly $1,700 for a single prescription.

Patients with the conditions listed below are paying drastically more than most Americans. The average out-of-pocket costs per prescription hovers around $15.

The above numbers are based on out-of-pocket costs for retail medications only. They do not include medications administered by healthcare professionals, which can be even more expensive.

Neurotrophic keratitis, a rare eye condition, tops the list

Leading the pack in out-of-pocket costs is neurotrophic keratitis, a rare degenerative eye disease that impairs corneal sensitivity.

Patients battling this condition pay an average of $1,649.26 per prescription. That places its cost well above that of many other rare and chronic diseases. The cost reflects the specialized treatments needed, which often involve unique medication formulations that insurance may not fully cover.

Number two on the list: Central precocious puberty

Families managing central precocious puberty (CPP) face an average out-of-pocket expense of $1,282.12 per prescription.

CPP, which causes children to start puberty early, requires expensive hormone-blocking treatments that often aren't fully covered by insurance. These medications are crucial for ensuring normal growth and development. But patients need to administer them regularly, creating a significant financial burden for families.

Multiple cancers also lead the list

Among the most costly conditions is gastrointestinal stromal tumor, with an average out-of-pocket cost of $470.83 per prescription. Like the conditions mentioned above, this rare type of cancer also requires specialized treatments that contribute to the high cost.

Similarly, patients with Kaposi's sarcoma, another cancer often affecting immunocompromised individuals, face average out-of-pocket costs of $786.69 per prescription. And those with neuroblastoma, a cancer most commonly found in children, may see average costs of $481.23 for each fill.

Bladder, renal, adrenal, liver, and cervical cancer are also among the most expensive conditions out of pocket.

Hepatitis C: An expensive infection

Hepatitis C is a viral infection that can lead to severe liver damage. It can cost patients an average of over $660 out of pocket for each prescription. While newer medications have improved the treatment landscape for hepatitis C, they may also be costly for many.

Rare genetic and metabolic disorders among the most expensive

Patients with rare genetic disorders like hereditary angioedema may pay an average of $747.18 out of pocket per prescription. And, those with hereditary transthyretin-mediated amyloidosis, a condition that causes protein deposits to build up in the body's organs, will pay an average of $764.01 per prescription, making it another financially daunting condition to manage.

Patients with cystinuria, a rare inherited disorder that leads to kidney stones, spend an average of $618.42 out of pocket per prescription. Similarly, those with Wilson's disease, a genetic disorder that causes copper to accumulate in the body, pay $370.71 on average per prescription.

And finally, lipodystrophy, a disorder that affects how the body stores fat, costs patients an average of $717.02 per prescription.

Expensive common conditions

Rare cancers and chronic diseases often dominate conversations about high prescription costs. But more common conditions can also rack up substantial out-of-pocket expenses.

Case in point: Patients with Crohn's disease, a chronic inflammatory bowel disease, pay $123.34 on average per prescription. And low libido and testicular cancer cost patients an average of $110.59 and $113.78 out of pocket for each prescription, respectively.

Chronic conditions like leukemia ($108.29 per prescription) and pancreatic insufficiency ($115.49 per prescription) require ongoing treatment and pose financial challenges.

Summing it all up

The data paints a clear picture: Patients with the most expensive conditions are likely forced to take on massive expenses. While the average prescription costs just $15, those managing the conditions discussed above may find their out-of-pocket costs unaffordable.

So, what can you do if you're faced with steep costs for your prescriptions? You have some options.

• Use GoodRx. Shop around on goodrx.com to find lower prices on your prescription. Look up your prescription on the website or app and present the coupon to the pharmacist before you pay.

• Search for a copay card or patient assistance program. Many of the above conditions are treated by brand-name medications that often have savings programs. To see if your medication has one, search for it on the GoodRx website and then look under "Ways to Save." Or search the web by typing in your drug name and "copay card" or "patient assistance program."

• Appeal for insurance coverage. If you have insurance and your plan doesn't cover your medication, ask your healthcare professional about submitting an appeal. For instance, some plans require prior authorization before they'll cover specific medications. In other words, you'll need a special request from your healthcare professional and permission from your insurance plan before you can fill your prescription.

• Talk to your healthcare professional. If your insurance doesn't budge and you can't use a manufacturer savings program, talk with your healthcare professional to see whether a more affordable medication is available. You may need to take older medications that have cheaper generic alternatives. You can also explore prescription coupons through GoodRx.

Methodology

To estimate average out-of-pocket medication costs for specific medical conditions, we used data from IQVIA on out-of-pocket spending and paid claims from the third quarter of 2023 to the second quarter of 2024.

For medications with more than one medical indication, we probabilistically estimated the share of claims attributed to each indication, based on diagnostic codes from a nationally representative third-party claims database. Average out-of-pocket cost per prescription for each condition reflects all retail prescription medications used to treat the condition, accounting for both on- and off-label use.