5 Tips for Affording PAH Medication: Assistance Programs, Specialty Pharmacies, and More | myPHteam

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5 Tips for Affording PAH Medication: Assistance Programs, Specialty Pharmacies, and More

Medically reviewed by Steven C. Pugliese, M.D.
Written by Joan Grossman
Updated on April 2, 2024

Medications for pulmonary arterial hypertension (PAH) can be costly, and many people with the PAH worry about affording drugs they need to manage their condition. In a survey of 106 people with PAH, almost 50 percent of participants reported needing financial assistance to afford their PAH medications.

On myPHteam, the online social support network for people living with pulmonary hypertension and PAH, members have shared concerns about paying for their PAH medications and other treatments for coinciding medical conditions. “It is unreal how expensive these meds are. I don’t have insurance, so I don’t know what I will do if expensive meds are all they have to offer me,” a member wrote.

Struggling with the financial aspect of your health care can have a negative impact on your quality of life. Fortunately, a variety of resources and financial assistance programs can help people with PAH afford their medications. This article discusses several sources of support and provides five tips for affording PAH medications.

1. Check Into Copay Assistance From Drugmakers

There is no known cure for PAH. Treatment options include medications that help relieve symptoms and slow disease progression. Various types of drugs are recommended for treating PAH, including:

  • Endothelin receptor antagonists (ERAs)
  • Prostacyclin receptor agonists
  • Phosphodiesterase-5 inhibitors
  • Soluble guanylate cyclase stimulators
  • Calcium channel blockers

Combination PAH therapy, or treatment with two or more drugs, is often recommended for PAH. Many of these medications are costly, and even with health insurance, people with PAH may have high out-of-pocket expenses.

Many drug companies offer patient assistance programs to help cover out-of-pocket costs for the medications they manufacture. Copay assistance is geared toward people who have private or commercial health insurance. These programs often do not apply to people on Medicare or Medicaid.

For instance, Janssen, the company that makes macitentan (Opsumit), has a financial support program to help cover the costs of copays, deductibles, and coinsurance for people with eligible health insurance plans. It’s called Janssen CarePath. People who qualify currently pay $5 for each prescription fill of Opsumit.

Other drug companies have similar programs, and some may also help with the cost of insurance premiums. One myPHteam member explained their experience: “My medication is mostly covered by manufacturers. The bad thing is you have to go through tests and procedures to qualify. The copay for the right-side heart catheterization was the most expensive part for me. I’m only 60, so I don’t have Medicare.”

The qualifying criteria for financial support may differ among drug companies. Here are just a few of the drugmakers that have prescription assistance programs for PAH medications:

  • United Therapeutics provides cost assistance for tadalafil (Adcirca) and treprostinil (Remodulin).
  • Bayer, which makes riociguat (Adempas), offers copay assistance and also has a charitable foundation that provides medications at no cost for those who are eligible.
  • Johnson & Johnson’s Janssen CarePath offers support for macitentan.

In some cases, drug companies have separate nonprofit foundations to help manage financial assistance for their medications.

2. Seek Foundation Support

Charitable nonprofit organizations sometimes provide financial support for PAH medications to people without health insurance who have limited income. These funds are often distributed in cycles and may not always be available. Sometimes they have a waitlist and will notify you when funds become available again. The FundFinder app is a free tool that can help you search for sources of financial support.

“My meds are paid for by a grant. I couldn’t afford to pay for them from the beginning,” a myPHteam member shared.

Some nonprofit foundations provide financial assistance for particular drugs but aren’t actually part of the drug company. Drugmakers may be able to refer you to a foundation that supports people who are prescribed their medications.

You may be wondering, what can I do if I can’t afford Eliquis? “If you take Eliquis and you cannot afford it, Bristol Myers Squibb Patient Assistance Foundation might help. They help me by paying half the cost of the drug,” a member wrote.

3. Try Online or Specialty Pharmacies for Lower-Cost Drugs

Specialty pharmacies cater to people with complex or rare diseases such as PAH. Some specialty pharmacies may be able to provide discounts on drugs for PAH.

If you are concerned about the cost of Opsumit, the Opsumit patient assistance program may help. “I talked to my specialty pharmacy. I get Opsumit for zero deductible. I was so worried. I know it is very expensive,” a myPHteam member shared.

Some specialty pharmacies may be able to provide discounts on drugs for pulmonary arterial hypertension.

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Others have found lower-cost medication through online pharmacies. “Tadalafil is very expensive,” a member wrote. “I am able to purchase it through an online discount program with no problems. The cost including shipping and handling is approximately $15 per month.”

Online and specialty pharmacies that may be able to provide cost-savings include the following:

  • Accredo/CuraScript SD/Express Scripts
  • Cigna Tel-Drug
  • CenterWell Specialty Pharmacy (formerly Humana Specialty Pharmacy)
  • Optum Specialty Pharmacy (formerly BriovaRx)

Specialty pharmacies also sometimes help negotiate out-of-pocket costs with health insurance companies and facilitate communication with drug companies — a process through which they can determine if and how costs can be lowered.

4. Use Drug Discount Cards

Some people save money on PAH medications by using drug discount cards, which provide reduced costs for many medications. A drug discount card may help you get the best price on a medication.

Different types of organizations — such as membership groups, nonprofits, state governments, and for-profit companies — offer drug discount cards. Some discount cards are free, while others require paying a fee.

Examples of drug discount cards include:

  • GoodRx
  • NeedyMeds Drug Discount Card
  • RxSaver
  • SingleCare

“I got instant relief from tadalafil, and it was reasonably priced with GoodRx,” a myPHteam member said.

Many drug discount cards have websites that let you search and compare the cost of medications to find the best savings.

5. Understand Your Health Insurance Policy

It’s essential to understand your health insurance policy and the benefits, limitations, and costs of premiums, deductibles, coinsurance, and copays associated with your plan.

For instance, an insurance policy may have a lower monthly premium. However, if it has a high deductible and high copays, your yearly costs may be more than if you were on a plan with a high premium and lower out-of-pocket costs.

People with PAH usually need regular follow-up care and risk assessment, and these doctors’ visits and services can add up in out-of-pocket costs. You may end up paying less overall with a plan that has a higher monthly premium and lower out-of-pocket costs for copays and deductibles.

Tell your health care provider if you can’t afford your PAH medications. They can connect you with financial assistance resources or give you a referral for a social worker who can help.

Furthermore, the Pulmonary Hypertension Association and the American Lung Association provide a lot of good resources on financial assistance for people with lung diseases such as PAH.

Talk With Others Who Understand

On myPHteam, the social network for people with pulmonary hypertension and their loved ones, more than 53,000 members come together to ask questions, give advice, and share their stories with others who understand life with PH and pulmonary arterial hypertension.

Do you have concerns about the affordability of your PAH medications? Have you found ways to save money on PAH drugs? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Updated on April 2, 2024
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Steven C. Pugliese, M.D. is affiliated with the Hospital of the University of Pennsylvania in Philadelphia, serving as the director of the pulmonary embolism response team, co-director of the comprehensive pulmonary embolism program, and an assistant professor of clinical medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Joan Grossman is a freelance writer, filmmaker, and consultant based in Brooklyn, NY. Learn more about her here.

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