The Early Diagnosis Campaign: Sometimes it's PH

Goal: Reduce the time from symptom onset to accurate diagnosis of pulmonary hypertension by right heart catheterization

The Early Diagnosis Campaign is a bold multi-year initiative by the Pulmonary Hypertension Association (PHA) to reduce the time from the onset of symptoms to diagnosis of PH. PHA is mobilizing to change aspects of medical practice so that more patients may gain access to the twelve treatments and the many specialty care centers that have become available in the U.S. before the disease progresses to advanced stages.

The twelve pulmonary hypertension treatments available in the U.S. have all been developed since 1996. PH has as many or more treatments than all but two of the 7,000 identified rare diseases. Yet over the past 20 years there has been no reduction in the time from symptom onset to diagnosis. With missed or late diagnosis, patients lose the opportunity for effective treatment and for a better chance of survival.

The Problem

It takes too long for pulmonary hypertension to be diagnosed. The median survival rate without treatment is approximately 2.8 years, making the need to obtain a rapid and accurate diagnosis urgent. Unfortunately, the mean duration from symptom onset to a confirmed diagnosis by right heart catheterization is also 2.8 years. We are reaching patients too late in the process. Almost three-fourths of patients have advanced PH by the time they are diagnosed. The goal is to discover the disease sooner in the early stages. This will allow the start of a treatment regimen that can slow the progression of PH and secure a better life for the patient. Learn more about why early diagnosis of PH is important

Why the Zebra

Doctors are taught to associate common symptoms with common ailments with this saying, "When you hear hoof beats, think horses, not zebras." Pulmonary hypertension is a medical zebra. Just as a zebra sounds like a horse, PH often looks like something more common. Sometimes common symptoms indicate asthma, COPD, sleep apnea, obesity or other common diseases. But sometimes it's PH. Our campaign urges doctors and patients to consider PH when they see these symptoms.

More Information

PH by the Numbers

  • The average time between PH symptom onset and diagnosis is 2.8 years.
  • Many patients will see 3 or more different physicians over a 3 year period before they are properly diagnosed with PAH.
  • 1 in 5 patients in the REVEAL Registry who were diagnosed with PAH reported symptoms for more than 2 years before their disease was recognized.
  • Women are 4 times more likely than men to be diagnosed with IPAH, and they are just as likely to have a delay in diagnosis.
Sources: Delay in Recognition of Pulmonary Arterial Hypertension: Factors Identified From the REVEAL Registry (PDF), Lynette M. Brown, MD, PhD, FCCP, et al (CHEST, 2011); PHA International White Paper, Pulmonary Arterial Hypertension: Recommendations for Improving Patient Outcomes (2011)

Spread the Word

Sometimes it's PH campaign video
Share the video: www.PHAssociation.org/
SometimesItsPHVideo
 

Somtimes It's PH
Share the campaign website link: www.SometimesItsPH.org

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.