Frequently Asked Questions
Sometimes it’s PH: An Early Diagnosis Campaign
What is the Sometimes it’s PH early diagnosis campaign?
Sometimes it’s PH is PHA’s unprecedented new 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.
For the first time, PHA is mobilizing to change aspects of medical practice so that more patients may gain access to the nine 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 doctors, the zebra is a metaphor for an unexpected diagnosis. When physicians first learn about how to reach a diagnosis, they are taught, “When you hear hoof beats, think horses, not zebras.” PH is often misdiagnosed as asthma, COPD or other common diseases. But while PH may be similar to these conditions, it is distinctly different, like a zebra among horses.
How will the campaign try to change medical practice?
PHA believes too few healthcare professionals know how to spot PH. Sometimes it’s PH aims to make three changes:
- Educate more healthcare providers about PH
- 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
If you are a healthcare professional, you may join one of the Sometimes it’s PH 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.
If you represent a corporation, consider co-sponsoring Sometimes it’s PH to make this critical campaign stronger.
To follow news of the campaign, visit the campaign website, www.SometimesItsPH.org regularly.
Contact Katherine Kroner, Director, Advocacy & Awareness, to discuss how you may best support the campaign at 301-565-3004 x749 or KatherineK@PHAssociation.org.