Frequently Asked Questions

The Early Diagnosis Campaign: Sometimes It's PH

What is the Early Diagnosis Campaign? 

The Early Diagnosis Campaign is PHA’s unprecedented initiative to reduce the time between the onset of symptoms and the diagnosis of PH. Delayed or missed diagnosis is the biggest barrier to delivering available care to patients.

PHA has mobilized 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. PHA sees this as essential because even with these assets, the time between symptom onset and diagnosis remains unchanged over the past 20 years. While we continue the search for a cure, diagnosing earlier is the next major priority in saving and improving patients’ lives.

Why is it important to diagnose pulmonary hypertension early?

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 a treatment regimen to begin 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 is the zebra the symbol of this campaign?

Among healthcare providers, the zebra is a metaphor for an unexpected diagnosis.

When first learning how to reach a diagnosis, young medical professionals are taught, "When you hear hoof beats, think horses, not zebras." Through this example, instructors encourage their medical students to think first of the more common, and therefore more likely, diagnosis.

This logic makes sense most of the time, but also partly explains why PH is often misdiagnosed as asthma, COPD and other more common diseases.

How will the campaign try to change medical practice?

The Early Diagnosis Campaign aims to make three changes:

  • Provide educational tools and resources to facilitate easier, more accurate diagnosis of pulmonary hypertension
  • Urge more healthcare providers to consider a PH diagnosis when symptoms warrant
  • Encourage healthcare providers to refer patients to PH specialty care centers for appropriate testing and a wider range of treatment options

Bringing about this change will require a multi-year campaign. We will focus on reaching primary care providers in the first year, add in specialty care providers in the second year and also begin targeting potential PH patients in the third year.

What steps will be taken to reach these goals?

To achieve our goal, we are mobilizing healthcare professionals in our PH community to:

  • Publish articles in medical journals
  • Form partnerships between PHA and other groups in the health community to work together on this issue
  • Educate providers to collaborate with specialty care centers to provide optimal care for patients

We are also organizing PH patients, families and caregivers to:

  • Share their diagnosis stories on our campaign website, www.SometimesItsPH.org
  • Communicate about the campaign through their efforts in issue advocacy, media outreach, special events and support groups

How can I participate in the campaign?

Everyone can learn about ways to get involved in the campaign and take action here on our campaign website. Take action now

Healthcare Professionals

If you are a healthcare professional, you may join one of the Early Diagnosis committees on publishing in journals, establishing partnerships with key organizations and educating about PH and specialty care. You may also work with PHA to have your institution or your professional societies take part in the campaign in a variety of ways. Healthcare professionals interested in getting involved should contact Medical@PHAssociation.org.

Patients, Family Members or Caregivers

If you are a patient, family member or caregiver, you may share your experiences with diagnosis on our campaign website. Take action now

If you are already involved in PHA’s support groups, special events, issue advocacy or raising awareness through the media, you may share information about this campaign with those you reach through these activities. New participants in these activities are always welcome, and information about getting started is on our website, www.PHAssociation.org/GetInvolved.

Companies

If you represent a corporation, consider co-sponsoring the Early Diagnosis Campaign.

To follow news of the campaign, visit the campaign website, www.SometimesItsPH.org regularly.

Contact Jessica Armstrong, Early Diagnosis Campaign Manager, to discuss how you may best support the campaign at 301-565-3004 x803 or EarlyDiagnosis@PHAssociation.org.

 

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

Share Your Story

Have you been diagnosed with pulmonary hypertension? If so, we would like to hear your story of diagnosis.

Share your diagnosis story

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.