Managing Your Health Shouldn’t Require This Much Fight
A Lesson in Copays, Persistence, and Exhaustion
By Ailene Gerhardt, MA, BCPA, CSA®, Founder, Beacon Patient Solutions LLC & Navigating Solo Network
At the end of last year, I renewed a prescription I have been taking monthly since June 2025: Doptelet, a specialty medication to help boost my platelets due to my ITP diagnosis.
For the remainder of 2025, my copay was $0. I had already met my deductible and out-of-pocket maximum after a medically intense year. I carry a PPO. Everything worked as expected.
Then January 2026 arrived.
When I used the specialty pharmacy’s online renewal tool, I was told my copay would now be $700 for the same medication. Same dose. Same pharmacy. Same insurance plan type. Different calendar year.
This is the moment many patients freeze, especially those of us already juggling lab results, symptoms, appointments, fatigue, and the emotional weight of chronic illness. But instead of accepting the number at face value, I paused and asked: What changed, and what options do I have?
The Reality of Specialty Drug Pricing
Here’s how that refill actually broke down:
Insurance paid: $11,226.88 (for 30 pills)
Patient responsibility: $700
Manufacturer copay assistance: $1,450
Adjusted patient responsibility: $0
Without the manufacturer’s copay assistance program, I would have owed $700 every month, until I hit my deductible and out-of-pocket max again.
Manufacturer Copay Assistance Programs: What They Are
Many brand-name specialty medications offer copay assistance cards or programs designed to reduce what patients pay out of pocket. These programs are often:
Income-agnostic (not means-tested)
Available only to patients with commercial insurance (not Medicare or Medicaid)
Poorly explained unless you know to look for them
And that’s the first problem: you need to know these programs exist in order to use them.
How I Got My Copay to $0
I went to the medication manufacturer’s website, found their copay assistance program, and enrolled online. The process took less than 10 minutes. I received a card with a BIN, Group, and ID number.
Then I called my specialty pharmacy.
The representative I spoke with was kind, knowledgeable, and efficient. I explained the situation, gave them the copay card information, and they applied it immediately. My medication shipped the next day. My copay dropped to $0.
This outcome was straightforward, but only because I had the energy, time, and awareness to push for it.
Additional Financial Assistance Options Many Patients Don’t Know About
Manufacturer copay assistance programs are often the first and fastest solution. But they are not the only option, and they don’t work for everyone. If a copay card isn’t available, isn’t sufficient, or you’re not eligible, there are other paths worth exploring.
The Patient Advocate Foundation is a national nonprofit that helps patients navigate insurance denials, high out-of-pocket costs, and access to care. In addition to individualized case management, PAF administers co-pay relief programs for specific diagnoses and medications when funding is available.
What makes PAF particularly valuable is that:
They understand specialty medication access challenges
They can intervene with insurers and pharmacies
They may help even when you’re overwhelmed and don’t know where to start
Funding is diagnosis-specific and opens and closes based on availability, so persistence matters.
Disease-Specific Advocacy Organizations
Many condition-specific nonprofit organizations offer financial assistance, copay grants, or emergency relief funds, sometimes quietly and sometimes intermittently.
For people living with rare, chronic, or autoimmune conditions (including ITP), these organizations may provide:
Copay or premium assistance
Help with lab costs or treatment-related expenses
Short-term emergency financial support
Navigation help and referrals to other resources
The challenge is that these programs are often:
Under-publicized
Time-limited
First-come, first-served
You usually will not stumble upon them unless you intentionally look, or someone tells you they exist.
The Emotional Cost No One Tallies
What doesn’t show up on an insurance explanation of benefits is the drain of managing this.
Chronic illness already demands vigilance: tracking labs, monitoring how you feel, managing side effects, fitting rest into a body that doesn’t always cooperate. Layer onto that the administrative work of insurance, specialty pharmacies, and financial uncertainty, and it becomes exhausting.
Patients shouldn’t have to become billing experts to access medically necessary treatment. Yet here we are.
Lessons Worth Sharing
If there’s one takeaway, it’s this: question sudden changes in copays, especially at the beginning of the year. A higher copay doesn’t always mean “this is just how it is now.”
Specialty pharmacies often have:
Access to manufacturer assistance programs
Staff who can help apply them
Systems that won’t activate those programs unless you ask
Self-advocacy shouldn’t be a prerequisite for survival, but until the system changes, it remains essential.
Quick Checklist: How to Reduce or Offset a High Specialty Drug Copay
Pause and question the copay: If your copay is dramatically higher than last year, especially in January when your insurance deductible and out of pocket resets. Do not assume it’s final.
Visit the manufacturer’s website: Search: [Medication name] + copay assistance or patient savings program.
Confirm eligibility: Most programs require commercial insurance and exclude Medicare or Medicaid.
Enroll directly: Online enrollment is often fastest. Save or screenshot your BIN, Group, and ID numbers.
Call your specialty pharmacy: Ask them to apply the copay assistance card and confirm the updated patient responsibility.
Verify before shipment: Make sure the adjusted copay is reflected before the medication ships.
Ask about additional pharmacy resources: Some specialty pharmacies screen for assistance automatically. Others will not unless you ask.
Explore nonprofit financial assistance options
Patient Advocate Foundation (copay relief and case management)
Disease-specific advocacy organizations related to your condition
Search: [your diagnosis] + financial assistance or copay help.
Loop in your provider’s office: Ask whether they have a financial counselor or social worker who can help with applications or referrals.
Document everything: Keep copies of approvals, card numbers, and notes from phone calls.
Repeat annually (and sometimes mid-year): Deductibles reset. Copay assistance caps reset. Funding pools open and close.
Unfortunately, this is not a one-and-done task.
It’s an ongoing, often invisible part of managing (chronic) illness, one that asks far more of patients than it should. Access to care shouldn’t depend on how persistent, informed, or exhausted someone is willing to be. We deserve systems that support health instead of testing endurance.
If you have the energy, ask the question, make the call, and push back when something doesn’t make sense. If you can’t, that doesn’t mean you’ve failed. It means the system is asking too much.
Connect With Us: When the complexity of your healthcare situation is too challenging to navigate on your own, working with an independent board certified patient advocate can help cut through the “red tape,” reduce complications, and offer peace of mind at an emotional time. Contact Ailene to learn more about the value of working with a private patient advocate.