Addressing Barriers to Accessible, Appropriate Care

The start of 2022 was a challenging time for the pulmonary hypertension community. Many patients struggled to find financial assistance to help them pay for their life-saving medications.

In the first few weeks of the year, the Pulmonary Hypertension Association responded to more than 100 treatmentaccess inquiries. After the first financial assistance fund of the year opened, PHA made more than 70 follow-up calls to ensure patients knew about and could access the fund, including people without internet access. Many patients expressed gratitude at PHA’s personal touch.

PHA addressed another pain point for the PH community: quality of service from specialty pharmacies. In March, health care providers responded to an extensive PHA survey that explored shifts in specialty pharmacies’ performance. The survey asked about many aspects of service for patients and health care professionals. PHA presented the feedback to major specialty pharmacies so they could make internal changes to improve the patient experience.

Throughout 2022, PHA’s worked to address issues related to medication pumps for subcutaneous treprostinil. One problem was that some people encountered “no disposable” alarms in CADD Legacy pumps even when medication cassettes were correctly loaded. PHA’s advocacy work spurred further investigation from the manufacturer and ultimately led to a recall of select pump lots.

PHA and its Scientific Leadership Council also worked to understand and address shortages of CADD MS3 pumps, which were in short supply because of supply chain disruptions. PHA worked with specialty pharmacies and manufacturers, eventually crafting guidance for health care professionals.