Even after 20 years, ordering PAH medications involves frustrations

When you’ve lived with someone for decades, you feel there’s little about the person that can surprise you. There’s comfort in knowing what to expect.

Similarly, it seems that little should surprise me after 20 years of caring for my husband, Tim, who has pulmonary arterial hypertension (PAH). However, that’s not my experience.

Despite having lived with a rare disease for so long, Tim and I still face many unexpected situations. The main uncertainty lies in his medication shipments, which can affect his day-to-day survival.

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Traditional pharmacy chains don’t always have the ability to fill every prescription, especially when medications require special handling or administration. Three of Tim’s PAH medications — Tracleer (bosentan), Letairis (ambrisentan), and Uptravi (selexipag) — require us to use a specialty pharmacy.

Although these pharmacies have personnel available (often via a 1-800 phone number) to help with any issues that arise, the customer service representatives handling our calls typically have no idea what shipment delays mean for Tim. He relies on these medications to survive. In addition, shipping issues can heighten Tim’s stress and hurt his overall health.

If we have any questions for the pharmacy, I’m often the one who calls because Tim works full time during the company’s business hours. I remember inquiring about a medication shipment once and telling the customer service agent that Tim had only 48 hours’ worth of medication left. I was told to call 911 or go to the nearest hospital for treatment, should he run out.

Did the customer service agent realize that emergency medical services and hospitals typically don’t stock PAH medications?

Fortunately, my husband and I both carry health insurance from our employers. Tim has always had double coverage to ensure that payment is supplied and there’s no interruption in his medications.

But despite our attempts to ensure Tim receives his medication on time, we’ve never encountered a drama-free month.

The vulnerability and injustice involved in reordering Tim’s medications make us feel helpless and angry. Doing everything right doesn’t prevent those uneducated about PAH medications, benefits, and treatment approvals from letting us down. Tim’s PAH physician and her staff spend countless hours trying to get his medication shipped, as well.

Patients in our position typically have no choice but to deal with medication reorders monthly and pray the person on the other end of the line understands that their actions are life-altering and serious. Even after 20 years, we still expect to face a monthly hassle, frustrating conversations, and hours of holding on the phone.

But we’re the fortunate ones, as treatment is available and Tim is covered. Many patients don’t have a diagnosis, access to therapies, or adequate health insurance.

The average person has no idea that waiting in a typical pharmacy line is a luxury.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.