Pulmonary Hypertension Association
The Pulmonary Hypertension Association (PHA) is headquartered in Silver Spring, Maryland. It was formed in 1991 by 4 women passionate about finding a cure. Additionally, they hope to help improve the quality of life for those living with pulmonary hypertension.
They understand the isolation and depression that new patients can feel. They hope to ease the burden of this disease.
What PHA Provides
PHA is unique because it doesn’t only serve patients. It also extends services to caregivers, families, advocates, and healthcare providers. Since part of their goal is to raise awareness of the condition within the medical field, their interactions with doctors are of the utmost importance.
Patients may be misdiagnosed with asthma or similar conditions because symptoms often overlap. With a more widespread knowledge that PH exists, it will be on doctors’ radar that the patient they are seeing might have the condition as opposed to a more common ailment.
Likewise, awareness is important for patients so that they can advocate for themselves if they suspect they have the condition and have not yet been diagnosed.
In addition to awareness, PHA hopes to bring patients together along with their families and their caregivers. They also strive to bring physicians together.
Some quick facts about PHA
- A magazine called Pathlight which is published 4 times each year
- A biannual international conference (this year’s event will be held in Anaheim, California on June 12th-14th)
- 200 local support groups across the nation
- 500-700 trained support group leaders
- 10,000-13,000 patients attending support groups annually
- A toll-free, around-the-clock number for patients
- A separate phone number for Spanish speakers
- Email mentoring
- Facebook support groups for parents, survivors, and other subgroups of patients
- 75 accredited, specialized clinics
- 54 adult centers (comprehensive care)
- 13 adult regional programs
- 8 pediatric centers
- Events to raise awareness on Capitol Hill
- 34 staffers
- 10 million dollar annual budget
- 15 dollar annual membership fee
- 16,000 members
There are currently 14 therapies approved for PH, however some cost 250,000 dollars a year. Patients pay around 7,000 to 10,000 dollars annually out of pocket.
Considering the fact that many PH patients are unable to work and are living on disability, this cost is too high.
Treatment is not an option. Without it, the disease progresses fast. The issue of cost is therefore one of PHA’s largest advocacy efforts.
This organization is working diligently to help this patient population, both financially and mentally. It’s a process, and it sure does take a village.
You can read more about PHA here.