The Pulmonary Hypertension Association is expanding patient education, provider training, research funding and advocacy as people with PH continue to face care access barriers.
Pulmonary hypertension (PH) is a serious, progressive condition involving high blood pressure in the blood vessels of the lungs. It can develop in different ways, including through changes in the lung arteries, heart disease, lung disease, chronic blood clots or other underlying conditions.
DelveInsight recently reported more than 55 pipeline drugs for pulmonary arterial hypertension (PAH), one form of PH, including about three late-stage candidates. Quince Therapeutics also recently acquired Orphai Therapeutics, whose work includes inhaled therapies for rare pulmonary diseases such as PH associated with interstitial lung disease.
Despite these developments, patients can still face delays and access barriers from the first symptoms through long-term care, including distance from PH specialists, limited awareness among non-specialists and insurance challenges.
In an exclusive with Xtalks, we had the chance to speak with Matt J. Granato, LL.M, MBA, CEO and President of the Pulmonary Hypertension Association (PHA), to get his perspective on how the association is supporting patients, caregivers and healthcare providers while advocating for earlier diagnosis, stronger research and better access to care.
PHA’s Mission Involves Patients, Caregivers and Providers
PHA began 35 years ago with four patients and has since grown into a major resource for people affected by PH. The association supports patients, caregivers and healthcare providers through education, advocacy, research and care-center accreditation.
“Our mission is to extend and improve the lives of those affected by pulmonary hypertension,” said Matt.
Much of that work starts with practical education and peer support, including resources on managing PH, understanding therapies and coping with the mental health burden of a serious diagnosis.
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“This disease is very isolating when you get diagnosed; no one knows about it. And so finding other patients that have the same thing as you and are walking in the same shoes as you, and especially seeing those who are doing well and are inspiring, can feel like there’s light at the end of the tunnel,” he explained.
PHA also works with healthcare providers through education and accredited PH care centers.
Rural Care, Research Funding and New Patient Guides
A current priority is improving access to PH expertise outside major academic and urban centers.
“We’ve identified a need in rural areas where there’s also patients but probably not expert care. And so we’re working on some type of program where we can connect those rural communities to those expert care centers in the more urban academic areas, so those patients can also have access to that type of expertise,” said Matt.
Telemedicine could help bridge that gap. Some appointments and evaluations still need to happen in person, but virtual care can support medication management and help frontline providers connect with PH specialists who may be hundreds of miles away.
The association is nearing $10 million in research grants awarded since its founding and has increased its annual research program to make $1 million available to investigators. Areas of interest include interventions, new therapies, the cost of PH and pediatric research.
“Pediatrics is another area of focus for us because there are not as many drug therapies approved in the pediatric space,” emphasized Matt.
PHA is also updating Navigating PH, a guide designed to help recently diagnosed patients understand the disease and the first steps after diagnosis.
Research Grants, Registry Growth and Website Updates
Several investigators have received grants from the association, and PHA is now looking back at how that early support helped shape careers in the field.
“There are over 70 investigators that were awarded, and so we are now working on a feature piece to basically ask, where are they now? Because those investigators have gone on to build careers around PH that have really significantly contributed to the knowledge in this space.”
The association’s patient registry has also passed 4,000 enrolled patients over 10 years. Registry data can help researchers better understand PH and support future studies through information collected from participating centers.
PHA also recently relaunched its website.
“We wanted to make sure that our website was a one-stop shop for every PH resource in a way that is both medically accurate but also sort of hopeful, so that patients could understand that they’re not alone, that there’s a community behind them.”
The updated site connects visitors to disease education, support groups, conference information and resources covering both clinical and mental health aspects of PH.
The Long Road to a PH Diagnosis
Early diagnosis remains one of the most persistent challenges in PH.
“The symptoms of the disease are easily confused with other more common, less lethal illnesses. It could be like shortness of breath, fatigue, fainting, swelling.”
Those symptoms may be attributed to asthma, stress, weight-related issues or other conditions before PH is considered. Matt noted that patients may still wait anywhere from six months to two years before receiving an accurate diagnosis.
Because PH is progressive, earlier recognition and treatment can affect prognosis. PHA works to educate frontline providers so they can recognize when symptoms may point to PH and refer patients to specialists sooner.
Access to appropriate therapy is another concern. Oxygen is one example. Reimbursement barriers can limit access to liquid oxygen, which is more mobile and lasts longer than traditional gas oxygen tanks.
“For a patient with pulmonary hypertension, maybe they go through a tank in an hour. And so as you can imagine, those huge tanks, they’re not very movable and you’re basically tethered to your home, whereas the liquid oxygen is mobile and lasts longer.”
Matt also raised concerns about insurance access, including potential changes to ACA subsidies and new restrictions affecting Medicare and Medicaid recipients. Such changes, he noted, could affect people living with PH as well as others with chronic diseases.
Oxygen Reform, Guidelines and PHA’s Next Events
Some PH patients need oxygen therapy, but access to the right type of oxygen can be difficult. Because other disease communities face the same issue, PHA works with those groups to advocate for better oxygen access.
“Supplemental oxygen access reform is not just affecting the pulmonary hypertension community, but also pulmonary fibrosis and other conditions that require oxygen therapy. So we collaborated with them, we formed a coalition, and we basically advocate together for the passage of this act.”
Matt noted that Europe has unified PH guidelines, while the US does not. A clearer US guide could make it easier for doctors to follow the same approach and for insurers to review treatment coverage more consistently.
“PH is a condition that you can develop from another disease like sickle cell, connective tissue disease, HIV or pulmonary fibrosis,” added Matt.
PHA also works with organizations connected to those conditions, so more patients and providers know when PH could be part of the picture.
PHA is preparing for its PH International Conference and Scientific Sessions in Dallas from June 11 to 14. The event is expected to bring together more than 1,000 patients, caregivers, healthcare providers and industry participants.
“This is a unique event because everyone who has a connection to PH participates.”
PHA plans to make the conference an annual event starting in 2028. The association is also working to make all of its medical and patient education materials available in Spanish. In October, PHA is planning a one-day health expo in San Francisco to help people in the Bay Area connect with PH education, providers and local resources.
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